Story written 2007
Seren was suspected to have Cystic Fibrosis from 22 weeks of pregnancy, as her bowel was echogenic on ultrasounds. At birth, a blood sample was taken to test her for Cystic Fibrosis genes and she was found to have CF. Her treatment started the following day at the hospital. She was started on prophylactic antibiotics, Flucloxacillin, Creon capsules to digest her milk for her, and daily supplements of a multivitamin and extra Vitamin E. At four weeks old she began a thrice daily regime of chest physiotherapy to clear the sticky mucus from her lungs. At sixteen days old, I had to stop breastfeeding and start giving Seren SMA Gold formula, as she was drastically losing weight. She took well to this and did start to gain weight, but by 7 weeks old, she had dropped from the 50th centile at birth, to the 9th centile, so she had to start SMA High Energy, which worked wonders. In her first year she had a lot of throat infections which made her poorly and then at 13 months, she grew her first bug on a cough swab, Haemophilus Influenzae, which she received a course of extra antibiotics for.
She then had a much better second year, and stayed healthy with good weight gain until around her second birthday, when we had to wean her off the SMA High Energy and onto cow’s milk. This caused her weight to drop and we struggled to get her weight up. Then at 23 months, she grew a bug called Pseudomonas and had to start some very strong oral antibiotics which made her ill, and a nebulised antibiotic as well. The treatment worked and she cleared the bug well and hasn’t grown another bug on cough swabs since.
She finally, for the first time in her life, discovered an appetite in autumn of 2004. She finally started gaining weight nicely and since then, her weight has usually been good. We have to work hard though to keep it at an acceptable level, frying as much of her food as we can, making sure she eats lots of high fat foods such as crisps and chocolate, and trying to get her to drink plenty of milk.
From Christmas 2004 to April 2006, her health was very good. Her CF was very well controlled and apart from the occasional constipation, she had no real problems. Then in April she started full time school and her asthma, which had previously been very mild, needing inhalers only once a month or so, suddenly went haywire. Through the summer and autumn, Seren started needing inhalers more and more frequently and so in October, she was started on a Becotide inhaler in addition to her Ventolin. This still wasn’t enough and so the Becotide dose was doubled last week and she has been struggling to come to terms with having asthma as well as Cystic Fibrosis and hates her constant cough.
At the moment, her medications are as follows: Ventolin inhaler, 4 to 6 puffs as necessary. Becotide inhaler, 4 puffs twice a day. Fish oil capsules, 2 per day. Vitamin capsules, 1 per day. Vitamin E liquid, 1 ml per day. Flucloxacillin capsules, 2 per day, Creon capsules, 3 with snacks, 4 with meals, Nasonex spray, 1 puff in each nostril once a day. At the moment, on an average day, Seren takes 22 tablets and has at least 8 puffs of inhalers, hence her struggle to adjust.
Update January 2014
Seren is now in High School and seems to be settling in well. She is going through a period of transition, shedding her childhood persona and discovering the ‘new her’. Moving up to High School has been challenging for her, but she has made friends and the school are very supportive of her CF needs, and have given her great support in her numeracy struggles. She auditioned for the school Christmas production and was rewarded with a solo to sing! She did an amazing job and was the youngest soloist to perform.
Seren is still struggling with compliance issues with her CF treatments and is currently under the weather, but the High School are keen to help out and support her by doing treatments in school with her if needed, and she has access to a CF Psychologist who is working with her.
Her gastrostomy, which was fitted 22 months ago, has made a huge difference to her nutrition and general health, and she has grown a lot in that time.
Seren has grown and changed so much during her 6 1/2 years with Post Pals and it has been quite a journey. We are so grateful to all those who have supported her (and us) along the way, with cards, postcards, letters and gifts. You have made some difficult years a little easier to muddle through, and we are so touched that you have all supported her and invested in her journey, willing her onwards, encouraging her. She is keen to develop her independence even further in the future. Thank you to everyone who has supported Seren. We wish you all the very best for the future.
Update 16th July 2013
Seren has had a fairly stable few months. There have been a few ups and downs, like the bad cough which she had through most of April, which required a three week course of Ciprofloxacin, and caused her lung function to drop to just 59%. She gradually picked up over the three week course and her lung function climbed to a high of 79%. By mid-May her cough was back and she was reviewed at the hospital, but we were relieved to find that her lung function had only dropped to 76%. She was prescribed a high dose course of Augmentin, two tablets three times a day, and this seemed to help eventually after a couple of weeks. Seren had CF Clinic on 7th June and her lung function had dropped a little to 75%, due to particularly poor compliance with her CF treatments, so she had to have a chat with the CF Team psychologist, to try and encourage her to try a little harder to keep herself well. Apart from that, the doctors were pleased with her, as she has grown a lot recently, taking her up to the 75th centile for her height. She has also gained some weight, going up to 35.2 kgs, but because of her gain in height, she’s only on the 25th centile for her BMI, so we need to get some more weight on her. On 20th June, she had her first ever glucose tolerance test, to check for diabetes mellitus (a complication of CF) and she passed with flying colours. On 27th June, she had her chest x-ray and abdominal ultrasound, ready for her Annual Review which is coming up on 2nd August. We will receive the results of those tests on the Annual Review day.
Seren has also enjoyed a sleepover at church, and we were very grateful to the church leaders for taking on Seren’s medications and overnight feed for us, to enable her to take part. She also attended a two night school trip to Ringsfield Hall in early July and although the teachers didn’t feel comfortable to take on the overnight feed (so she skipped 2 nights) they did all her daily treatments and medications for us, to enable her to take part. She has also enjoyed Sports Day, performed as narrator in her school production of Oliver, passed her SATS with a Level 4 in Maths and Science and a Level 5 in English, and received a glowing school report.
She started July with a bad cold and cough, but she seems to have mostly shaken that off now, and is enjoying spending a week at High School, in preparation for her move to high school in September. She’s settling in well and is happy with her new school. She also enjoyed celebrating her 11th birthday last week, with a meal at Harvester, a shopping trip with her grandparents, and a trip to a local theme park with her school friend and Dylan.
Here’s hoping for a happy, healthy summer!
Thank you to everyone who has sent Seren a card or a postcard recently. She very much appreciated all the Easter cards, birthday cards and general cards. She’s loved receiving some fantastic Dr Who postcards too! In particular, she would like to thank the children from Nottingham who sent 24 handmade cards for her birthday, she was very touched! Thank you to Gill, Libby Snow, Neve, Jasmin, Georgia, Harriet, Jules, Valerie, Audrey, Georgia-Mari, Wendy, Sian, Tabitha, Maria & Michael, and Northwold Primary School for all the great letters! Seren loves reading them! Thank you to whoever sent the horse book (it came from Sutton Coldfield), thank you to Kitty for the colouring book and sweets, thank you to Lisa W for the sunflower seeds, thank you to Denise C for the Jacqueline Wilson activity set, thank you to Lisa for the recorder, glow stick bracelets, bubble gum water pistol, bath gel and chocolate, thank you to Harriet for the horse facts book, thank you to Lisa for the bead bracelet, thank you to whoever sent the pewter horse necklace, thank you to Danielle W for the beanie owl, thank you to Jenny for the stickers and magnets, thank you to Becci W for the cat novel, thank you to Summer for the 1 Direction keyring, thank you to Natashja for the stickers, thank you to June for the stickers, sticky notes and holographic card, thank you to Mary Kayetlin for the toy horse, thank you to Ruth, Davina, Melissa and Simone for the medal, thank you to Sasha and Aisha for the bracelet, thank you to whoever sent the Chinese lantern kit, and thank you to Natashja for the horse drawings tips book.
Update 10th April 2013
Seren had a pretty good December, apart from finishing off the month with a bad cold, but it didn’t stop her enjoying spending post-Christmas and New Year time in Wales with my family! She didn’t eat much though, she certainly didn’t over-indulge at Christmas! Her appetite didn’t improve in early January and she was pretty naughty too! She didn’t want to do her CF treatments and so by the time she got to CF Clinic on 14th January, she had an intermittent cough. At CF Clinic, her weight was stable, despite her poor appetite, thanks to her gastrostomy feed, but her lung function had dropped. Her FVC was 85% and her FEV1 was 76%, down from 83%. Her FEF50 was 63%. The doctor wasn’t happy with her nutrition levels or her effort at taking care of herself, so they gave her a big talking to. They also agreed to her having a mask for her nebuliser, rather than a mouthpiece, to encourage compliance. February was a better month, healthwise, she was pretty stable apart from a migraine mid-month. She also made huge leaps in her maths work at school, jumping from her old level of 2B up to a 4C!
On 1st March, she went back to CF Clinic and she had grown 1 cm and put on nearly a kilogram and her lung function had improved. Her FVC was 100%, her FEV1 was 79%, and her FEF50 was 74%. The doctor was very pleased to hear that she had been more compliant in her treatments and the results showed in her lung function tests. Her nasal polyp which they discovered in November was much improved and so the doctor reduced her Nasonex to once per day and reduced her Colomycin nebuliser to once per day as well, in order to make the mornings easier for her.
We then had some more bad behaviour and non-compliance from her during the rest of March, but her behaviour had improved by Easter, and she very much enjoyed spending Easter in Wales with my family and then we headed Eastwards to Spring Harvest at Butlins. While we were there, she seemed tired, and didn’t eat too well, but it was only when we were traveling home on Sunday that we realised why.
She developed a sore throat and was very tired and had a poor appetite on Sunday evening and then overnight she developed a chesty cough. This got worse through Monday, and again, she had a very poor appetite and was lethargic. When she hadn’t improved on Tuesday, I called her CF Nurse and arranged a review on Children’s Ward. She was weighed and had lost half a kilogram and when she did her lung function, her FVC had dropped to 76%, her FEV1 had dropped to 59%, and her FEF50 had dropped to 54%. By far her lowest results ever. The CF Nurse gave her a drink and let her rest and then she tried again about half an hour later and managed to improve her FEV1 to 65%, but that is still much lower than her previous lowest of 72%. She was then seen by the doctor, who said her chest didn’t sound too bad, but he ordered a cough swab done, sent her for a chest x-ray and started her on some extra antibiotics (on top of her regular Augmentin and nebulised Colomycin) to treat the infection.
This morning, he called to say that the x-ray showed no major changes from her last x-ray (last summer) which had shown decline from the year before. Her cough swab won’t be back until at least Friday, and the CF Nurse has arranged to re-check her lung function on Monday to see if it has started coming back up. Today she is feeling pretty poorly, her cough is horrible and she’s feeling quite breathless and it’s making her tearful. She’s got lots of revision to do for her SATS though, which are coming up in 5 weeks time, so she’s trying to revise today and rest. Hopefully the new antibiotics will kick in soon.
Thank you very much to Gillian for the lovely Christmas card! Thank you to Andrea, Rob & Jaiden, 1st Brantham Brownies, whoever sent the Valentines cards, Natashja, Izzy P & Sayaka, Alison, Karen (Sami), Sophie, Becci Willetts, Hanna R, Rissy & family, Julia Daisy & Daniel, Maria, Kirsten, Chester & Wendy, and Annie for the fabulous cards! Thank you to Lyndsay, Kati & Ronja, Bron, Becky Rideout, Viks, Dee, and Wendy & Chester for the lovely postcards! Thank you to Sophie, Natashja, Izzy P & Sayaka, Isla Ramsay, and Kati for the lovely letters! Thank you to Claire Connon, Tez, Sarah Sweeney, Kati K, Lorraine B, Helen T, Vickie, Jenny Mathiasson, Kate Dalton, Anastasia, and Dawn Smith for the lovely Christmas presents you sent for Seren. She absolutely loved them. Thank you also to whoever sent the fairy book nameplates and the horse necklace. Thank you to Andrea, Rob & Jaiden for the nail art kit. Seren has been having great fun with this! Thank you to the 1st Brantham Brownies for all the pictures you drew. Thank you to someone who sent Seren a picture. Thank you to Natashja for the horse necklace. Thank you to Izzy P and Sayaka for the pictures. Thank you to whoever sent Seren the horse pin badge. Thank you to Julia, Daisy & Daniel for ‘The Horse Road’ book. Thank you to Kati & Ronja for the photos and picture. Thank you to Becci Willetts for the strawberry charm. Thank you to Hanna R for the pins kit. Thank you to Isla Ramsay for the ‘How To Draw Horses’ book and picture. Thank you to Rissy & family for the bracelet. Thank you to Becky Butler for ‘The Summer Riders’ book. Thank you to Annie for the stickers. Thank you to whoever sent the pampering kit with massage oil etc, Seren loves it!
Update 1st December 2012
Seren has had a fairly settled few months. She had her yearly CF review in early July, and she was 138.5 cms tall, weighed 31.3 kgs, putting her BMI on the 41st centile, her SATS were 97% and her cough swab was clear. Her FEV1 lung function was 83% in May, so we were hopeful that it would have climbed even higher by July, but unfortunately, it had dropped to 74%, and her FVC was 84%. The doctors were concerned by her x-ray which showed lots of ‘tramlines’ in the bottom of her right lung, the top left lung still showed an area of sticky consolidated gunk, and there were lots of ‘significant obvious bronchiectatic changes’. Her ear nose and throat examination was okay apart from inflammation of the nostrils, and her abdominal examination was fine, as were her blood results and abdominal ultrasound, but the consultant was very concerned about the state of her chest and her low lung function. She admitted to not co-operating with her chest physiotherapy or her daily nebulisers, or wanting to cough much, so the doctor agreed to take her off the hated hypertonic saline nebulisers and put her onto nebulised Colomycin, an antibiotic mixed with normal saline instead, which would hopefully clear her chest a bit and prevent so many IVs being needed. He said she would also benefit from Mannitol when it comes out in this country, a dry inhaled powder which clears the lungs.
On 8th of July, Seren came out in a cold, and on 9th July, she started with a chesty cough, with chest pain as well, and so we took her to the hospital for a check up after giving her painkillers and inhalers. Her chest x-ray showed no improvement from the previous one, so the nurses supervised her test dose of Colomycin and used that to treat the chest infection along with a course of Clarithromycin. She tolerated the new nebuliser very well, which was a huge relief.
On 12th July, Seren was still very tired and tearful thanks to the chest infection, and unfortunately, her Clarithromycin dose blocked her gastrostomy tube, so she had to have it replaced on 13th July, which she wasn’t very happy about, as she finds tube changes rather painful thanks to persistent over granulation around her tube site. She didn’t eat much on the 13th, and was still tired, but she was determined to have fun, as she celebrated her 10th birthday on 11th July and on 13th, she took two friends bowling and had them over for a sleepover afterwards. Needless to say, we had a very tired, chesty girl on 14th July! She was still tired by Sunday 15th July, so she missed church and a dance performance she was to have taken part in as well.
On 22nd July, she fell and hurt her wrist, and when it was still very painful two days later, we took her to A&E for an xray. Thankfully, it was just soft tissue damage and it healed eventually. On 30th July, Seren enjoyed spending the week at Holiday Bible Club at church, and then on 3rd August, we travelled to Wales to stay with my family, and on 4th August, Seren had the great honour of being bridesmaid at my friend’s wedding! She had a beautiful outfit to wear on the day, and had a great time enjoying the day’s celebrations.
On 12th August, Seren went back to horse riding for the first time since her gastrostomy operation! She really enjoyed it, although sadly, we haven’t been able to afford too many lessons or rides for her this year, as money has been very tight. On 13th August, Seren had her physiotherapy annual review and passed her exercise test easily. On 20th August Seren went crabbing for the first time and really enjoyed it, and then at the end of August Donna’s Dream House treated us to an amazing holiday in Blackpool. If you’d like to see what we got up to, feel free to watch our photo slideshow at … http://www.onetruemedia.com/otm_site/view_shared?p=118a3e3c3a1b6c29fbbc718&skin_id=701&utm_source=otm&utm_medium=text_url
On 5th September, Seren went back to school, to start Year 6, and unfortunately, went to school full of a cold. By 7th September her cold had turned into a nasty cough, but at CF Clinic, she had grown 1.3 cms, gained half a kg, her SATS were 98%, and her FVC had climbed to 91% while her FEV1 had climbed to 80%, so the consultant was pleased and made no changes to her treatments. By 9th September, she still had her nasty cough, and on 11th September, Seren was sent home with a very nasty cough and a bad migraine, which I had to give her Imigran for. We went for a review at the hospital the following day, but the consultant didn’t make any changes to her treatments.
On 15th September, Seren and I signed up to do a 2.5 km run for the CF Trust, and we started our three times a week running training on 17th September. It was very hard, but we did it!
On 28th September, Seren still had a very wet cough in the mornings each day, so she had a swab done, but it didn’t grow anything, so we were still unsure as to what was causing her cough. I asked for her to be reviewed again on 3rd October when she was still coughing badly each morning, and her lung function had dropped again to an FEV1 of 72%, so her consultant decided to increase her Augmentin tablets from twice to three times a day. I wasn’t happy at how laid back her local consultant seemed to be about her poor lung function, and so I asked to be referred to the specialist from Cambridge in the near future.
Her cough didn’t improve through early October, but we were able to continue with our training, and on 13th October we spent the day at Legoland, and then on 14th October, Seren and I ran 2.5 kms for the CF Trust!!! She did a great job! However, her overnight and morning cough were incredibly wet, which was a great concern to us.
On 16th October, Seren had her flu jab, and then on 19th October, I had to go into school for a big talk with her teacher because she was still being very uncooperative for her CF treatments every morning, which was making everyone else late and causing lots of disagreements. Her teacher suggested having a tick off check list in the mornings for Seren to follow to make sure she does everything she is supposed to.
Seren was seen again at the CF Clinic on 22nd October, her FEV1 had increased to 84%, her highest score this year so far, but she had crackles in her lower left lung, and so the consultant diagnosed her overnight and morning cough as the start of a chest infection, and prescribed three weeks of Ciprofloxacin tablets.
Late October and early November were fun times, with a school trip to Gressenhall for a Victorian day, carving pumpkins with Dylan and Dad, and going to see some fireworks on the sea front.
By early November, we were seeing the extra maths classes she has been taking at school starting to pay off! Seren is VERY behind in her maths skills (but is way ahead in all other subjects) and has been receiving intensive intervention for a month or so, and she is finally starting to make progress! She is able to tackle more and more maths problems, and is starting to cope better with the stress of having maths homework to do at home!
On 12th November, Seren saw the CF Specialist from Cambridge, as even with three weeks of Ciprofloxacin, her overnight and morning cough wasn’t improving. Her lung function was stable at 83%, which was good, but the specialist found a massive polyp obstructing her left nostril, which is probably causing her overnight cough and morning cough by giving her post nasal drip, so he prescribed Nasonex nasal sprays for her nostrils. He also prescribed 3% saline for her to nebulise before each physio session, as he said her poor drinking habits (she rarely drinks much in the day at all, her overnight feed of 500 mls is usually most of her daily fluid intake) are causing her to still suffer a little constipation and will be making her lungs very dry and causing the gunk to be too sticky to cough up, so she really needs to get fluid in there. She tolerates it better than the hypertonic saline though, so it’s a start!
Seren is very excited that we’re now into December, and is looking forward to putting the Christmas decorations up, opening her advent calendar, and had a great time seeing the Coca Cola Truck at our local Asda the other day. Here’s hoping for a healthy December, as the last few months have been absolutely exhausting!
Thank you so much to everyone who has been kind enough to send cards and postcards to Seren over the past few months, she very much enjoys receiving them, opening them and reading them! Thank you to everyone who has sent Seren a letter or note over the past few months, she loves to hear what is going on in other people’s lives! Thank you so much to everyone who has sent Seren such lovely gifts, in particularly the gorgeous quilt which she always sleeps under, and her amazing signed Stacy Gregg books! She emailed Stacy to say thank you and received an email back as well, which made her day!
Update 1st July 2012
Seren had a tough time around the time of her operation. She had over two weeks of IV antibiotics before her operation, due to a nasty chest infection and poor lung function, which hadn’t improved over the course of the IVs. Just before being admitted to hospital for her operation, one of her cough swabs came back growing the fungus Aspergillus, so she had some anti-fungal tablets for that, which did seem to help her chest a little.
The day of her operation, 21st March, she was incredibly brave. We checked into the hospital in the morning and she went down to theatre around lunchtime to have her gastrostomy fitted. She came back up to the ward at around 4pm, after spending quite a while in recovery, because she was struggling to hold her oxygen levels on her own. Initially when she came around from the anaesthetic she was okay on 5l of oxygen, and then when they stopped it and prepared to move her back up to the ward, her SATS (oxygen levels) dropped significantly, and they had to put her back on 2l of oxygen to transport her up to the ward. She was quite groggy and seemed to be in quite a bit of pain.
Every time we tried to take the oxygen off her over the next four or five hours, her SATS dropped straight back down, but eventually, by bedtime, she was holding her own without extra oxygen. She was a little hungry in the evening, and so she sucked a few chocolate buttons and had some sips of water. They started using her tube that evening for small boluses of water, and then small boluses of feed, and all went well.
The following day, she kept her SATS up nicely, but REALLY struggled with managing her pain. The nurses encouraged her to get out of bed and use the bathroom, but that made her operation site leak a lot, which got very messy, and she would sometimes get ‘stuck’, in so much pain that she couldn’t move an inch. In the end, paracetamol and nurofen weren’t enough and they had to give her a dose of morphine, which helped eventually. They also gave her a daytime tube feed, as she wasn’t eating anything. That evening, she had a little bit of a sandwich, and had her first overnight tube feed too.
Friday, the following day, she was supposed to have been discharged, and the surgical team were happy with her progress and happy to discharge her, but the CF team weren’t, because she wasn’t managing her pain very well, was barely mobile, and chest physiotherapy was way too painful for her, but her chest was very, very noisy and congested. So the CF Consultant decided to keep her on the IVs over the weekend and review her chest symptoms and mobility on the Monday evening.
Seren was so brave, it was her first operation, and she ended up spending six days/five nights in the hospital, and absolutely everything was a challenge for her; learning to cope with her gastrostomy and it leaking all the time all over her clothes, the lack of privacy, eating, drinking, all the extra medicines, all the pain, the physiotherapists who did their best to push her into walking further, mobilising more and having some forms of chest physio, and being away from her family and friends. I stayed in with her, of course, and Adrian and Dylan visited each evening, as did other family members, but she missed everyone terribly.
Thankfully, she was able to be discharged on the Monday evening, and things improved quickly after that. Her pain was far more easily managed after about ten days and she gradually got more and more mobile, and her appearance quickly became more healthier as she had more and more overnight feeds. She managed to go on her Make A Wish trip to London just before Easter, and she looked like a different child by the time Easter actually came, and just after Easter, she was strong enough for a trip to York with me, and she walked EVERYWHERE! Before her operation, just walking to school was too much for her!
By the May CF Clinic, she had gained 3.5 kgs, and had gone from the 7th centile for her BMI, up to the 28th! In just six weeks! The doctors were so pleased, as she had also stopped needing any form of laxatives, no senna, no lactulose, nothing, thanks to her fibre-filled overnight feeds! We were hoping her lung function would also have increased, along with everything else, but unfortunately, it had dropped to 78% from a post-op 83%. We have no explanation for the decrease, but by the end of May, it had risen slightly to 83%. We are hoping to get it up nearer to 100% again in the future, but for now we’re doing all we can.
And now, Seren is doing really well most of the time. She has gained at least 5 kgs, and is up to at least the 42nd centile for her BMI. She is looking so much healthier, and her face is full of colour. She still has the odd chesty cough or episode of chest pain, but she hasn’t had any tummy problems since a few days after her operation, and she has got SO much energy! She is doing PE at school, charging about at parks, and going to her dance class regularly. She hasn’t quite gone back to horse riding, because of having to wear her chest protector over her gastrostomy, which she has experienced some problems with due to over-granulation, but we hope that she will be able to go back to horse riding very soon.
Seren has her Annual Review/MOT on Friday, so I’ll be able to update more on her current health after that. Fingers crossed for good news! We should get the results of all her blood tests, her x-ray analysis, her abdominal ultrasound results, plus her current height, weight and lung function stats, as well as cough swab results.
Thank you to all the lovely people who have sent Seren cards and postcards recently, she has loved them all! They either sit on the mantelpiece, or on the shelves in her bedroom, or on her pinboard! Thank you for all the get well cards she received during her hospital stay and while she was recovering from her operation. We pinned up those we received during her hospital stay on her pinboard in her hospital room, and they really brightened the room up! Thank you to everyone who takes the time to write a letter to Seren, she loves to curl up and read them, to hear your stories. Thank you to everyone who has sent Seren gifts recently. She has enjoyed receiving each and every one of them! Recent highlights include the fabulous mechanical monkey from Kim, and the Odd book from Vickie, which she is currently reading. More specific thank you’s are a bit tricky, as she likes to take her parcels and letters up to her room to open them now she’s older, and she isn’t the best at keeping notes of what she’s received from whom! But thank you to everyone, she very much appreciates all her post.
Update 13th March 2012
Seren has had a difficult few months. In December she had a 16 day course of IVs for a nasty chest infection, during which her weight dropped from 27.5 kgs at the beginning of the month, to 26.7 kgs at the end of the month. She also had an allergic reaction to one of the IV antibiotics, Ceftazidime, halfway through the course, which was unpleasant for her. When she was reviewed at the end of the course, her lung function had improved, going back up to around 91% I believe, but her weight was very poor and despite her lungs having improved, she didn’t feel any better in herself. So it was suggested that as she was finding it so very difficult to eat, and to gain weight, that she have a gastrostomy fitted to feed her overnight.
Seren struggled through Christmas and New Year, feeling very tired and lethargic, struggling to eat and struggling to cope with all her CF treatments. Everything was getting on top of her. And so in mid-January, the decision was made to refer her to the paediatric surgeon for a gastrostomy. She had CF Clinic again in early February and her weight was back up to 27.5 kgs, but her bowel was very blocked, and although her lungs sounded clear her lung function was down to 79% again.
Seren saw the gastrostomy surgeon on 7th February and thanks to double doses of lactulose clearing some of the blockages in her bowel, her weight had dropped again to 26.8 kgs. The surgeon agreed to fit a mickey button gastrostomy for her over the next couple of months. We were originally given a date of 4th April. Through February, Seren’s health declined even further and she stopped going to her weekly dance classes and was always too tired for her riding lessons at the weekend. She also began to develop a wet cough again.
By late February, she was really struggling with a lot of chest pain, stomach pains, and feeling generally unwell. She was sent home from school one day with severe stomach and chest pains, and although a hot water bottle and some pain relief got rid of her stomach pain, her chest pain continued to be a problem, and she was recessing on her right side. We took her to the hospital, where her weight was 27.0 kgs, her bowel was blocked again, and because of the chest pain and recession, they were concerned she might have a pneumothorax (air leak in her lung) or another chest infection. She had an x-ray which was fairly inconclusive, so they put her on oral Clarithromycin for 7 days and prescribed Senna as well as the Lactulose for her bowels.
After 7 days her lung function was down to 77%, her weight was 27.5 kgs, her bowel was still very full, and she was still getting a lot of chest pain and coughing up yellow gunk. By day 11, her weight had dropped again to 26.7 kgs, and she was feeling awful with tight, heavy lungs, chest pain and feeling generally unwell. So the local hospital started Seren on some IV antibiotics again, Meropenem and TOBI.
She is still on the IVs at the moment and although her chest pain is improving, her chest is a little crackly and the bottom of her right lung is very dull-sounding. Last week we got a call from the hospital to say that her gastrostomy operation has been moved forwards to 21st March, one week’s time, and we are very relieved. Her poor weight and appetite and nutrition is not only affecting her quality of life and causing her to feel so tired, it is directly affecting her lung health and her chest muscles and her ability to cough effectively.
Her weight is still sitting at 26.7 kgs at the moment and she’s having some trouble with her TOBI IVs, the levels of drug in her blood came back too high today, so they have to tweak her doses a little to avoid damaging her kidneys or her hearing. She is very much looking forward to having her operation and getting her gastrostomy fitted, getting stronger and feeling better and getting some quality of life back. The past few months have been so very tough for her, and for us, as her parents, to watch her become a shadow of her former self and to see her have to stop doing all the things she loved to do.
Once she has her operation and gets her overnight feeds up and running, she will be better hydrated, better nourished, have more energy, put weight on, be stronger, and be healthier. And we can’t wait.
However, the recovery from the operation will have a few hurdles. She will have stitches in for the first week and they will be stitched into her stomach muscles, so every time she moves they will pull, which will be very painful for her. She may also experience tube leaks where feed or stomach contents may leak onto her clothes/bedding, which would be distressing for her. She will also have a small wound in her belly button after the surgery, and they will be performing a bronchial lavage (filling each lung with saline, one at a time, and performing chest physiotherapy, then hoovering out all the gunk) during the anaesthetic, which should hopefully provide some bacterial answers, as she is awful at coughing effectively and so we have no idea what bugs may be lurking in the base of her right lung causing havoc.
Once she is out of hospital though, we have some fun times planned. Her Make A Wish trip is taking place from 31st March to 2nd April and then we are traveling to Wales to see my family at Easter, and then I have planned a very special trip for 10th to 12th April for just me and Seren, which will have a special surprise involved! So she needs to recover quickly and get strong to enjoy all the good times coming up.
Any prayers or good wishes for her current IV course, which will continue until after her surgery, or for her operation and recovery, are much appreciated. Hopefully her next update will be a much more positive one.
Thank you to all you lovely people who have sent Seren cards and postcards over the past few months. She has loved opening them. She had absolutely loads of Christmas cards, and our front room door was filled with them, back and front! Seren loves getting cards, particularly handmade ones or ones with pictures of cats/horses on them. Thank you very much to everyone who has sent Seren letters over the past few months. She loves getting letters and hearing about other people’s lives, and she likes when people have the same interests as her. She reads every letter, and I only have to help out when she can’t make out handwritten notes in ‘joined up’ writing! A big thank you to Dottie the Dalmatian, Seren loves all her paw print post! Thank you to everyone who has sent Seren gifts over the past few months, they have all been treasured and enjoyed. She received some lovely gifts at Christmas, and some lovely treats during early 2012, and they have gone some way to cheering her up through a difficult few months. A BIG thank you to you all for making my lovely girl feel special!
Update 5th December 2011
Seren has had an up and down few months since the summer. In September she had her annual review/MOT, and her routine chest x-ray showed up bronchial wall thickening and early bronchiectasis for the first time, which was an unpleasant surprise. It also showed up a large area of consolidation (big plug of mucus blocking an area of her lung) in her left lung, which we really needed to clear. To remedy this, she was started on daily hypertonic saline nebulisers, which soon had her coughing up lots and lots of horrible dark yellow gunk. They also found that she is seriously low on Vitamin K and so she started a vitamin K supplement. She was not happy about having extra medications to take each day!
We also had to request to take her back off her Pizotifen tablets, as we just couldn’t cope with her behaviour and mood swings while she was on it. It was agreed that she should come off the tablets and that if her migraines returned, she would have an alternative medication to treat it. For a while, she coped without any migraine prevention medication, but towards the end of October she had a nasty migraine which came on gradually over a few days and then got worse quickly. She was prescribed Imigran for this, a reliever rather than preventer medication, as the only other preventer medication constricts the airways, which is not good for someone with CF and asthma! The Imigran was very effective however, and within 24 hours she was feeling much better. So far, she has not had another migraine.
At the end of November, Seren accompanied her brother Dylan on a Make a Wish Foundation UK trip to Disneyland Paris and we all had an amazing time. She loved riding all the different rides and meeting all the characters, particularly Pluto, however, she came out in a heavy cold while on our trip, which compounded an already brewing chest infection we were up to then unaware of, and so by the time she got back home and got to CF Clinic on 2nd December, the bases of both of her lungs were sounding horrible, and so the CF Consultant put her on IV antibiotics the following day.
And wow, Seren has been SO brave for them so far!!! She is feeling pretty rotten and her cough is horrible, but she didn’t even flinch when they fitted her cannula on Saturday afternoon, and she coped amazingly well with her finger prick test (which was performed incorrectly twice and so she had to have three pierced fingers!), which was a huge improvement on her last IV course two years ago. Her cannula, which has been named Carrie, is starting to become painful on use but she is managing to keep going with it so far, and I have been able to do home IVs for the past 24 hours which has meant she has been able to come home from hospital. This means a lot with it being so close to Christmas. There is the possibility of her being readmitted if I can’t manage with both Seren and her brother Dylan being on home IVs at the moment (lots of juggling!) or if she can’t cope with the home IVs, or if she has a lot of problems with cannulas, but for the moment, she is home, and able to go into school for a few hours as well, so she’s fairly happy. Her IVs are due to finish on 17th December, as long as sufficient improvement has been made by then, and so hopefully by Christmas she will be feeling much better and her lungs will be in better shape!
Update 25th August 2011
Seren has had an up and down few months. She had a chest infection in June, which required antibiotics and extra nebulisers and physiotherapy to shift, but her chest is currently pretty good. She had a good report at CF Clinic, lung-wise, but she has been put back on her Pizotifen tablets, because she was continuing to feel nauseous and complaining of frequent headaches. She saw a specialist gastro-enterologist last month who diagnosed her with childhood migraines, which are now being pretty well controlled by the Pizotifen, although she still has the occasional headache.
The Pizotifen has had the happy side effect of increasing her weight to a lovely healthy weight, but it has had a much more negative effect on her behaviour and moods. There is little we can do about this, except work with her about it, and make sure she has regular access to the CF psychologist and the family support worker from the hospice.
She is also being tested for ADD, as we wonder whether this may explain her increasing behaviour and concentration problems which have been growing more and more noticeable over the past few years. The CF psychologist feels she may have short term memory issues and/or concentration issues, but this could also be caused by her finding it difficult to settle off to sleep.
She has recently discovered that she likes Coca Cola and Pepsi, and she sometimes drinks apple juice or blackcurrant squash again, as well as cups of tea, so her fluid intake has finally improved a little.
She has her annual review coming up on the 15th September, when we should know more about how her CF is currently affecting her. She is looking forward to celebrating Dylan’s birthday with him in just over a week and also to an upcoming hospice stay before going back to school. She’ll be going into Year 5 this year!
Thank you to Nicola Jane, Tracy (Bristol), Helen T, Karen (Sami), Kelsey, Claire, Glad, Emma, Libby, Nicole, H, Anne & Kaitlin G, Jocelyn, Karin, Shannon & Elsa, Liz, Louise Melissa & Sophie, Ruby, Samantha, Helen Brierley, Dottie, Denise, Adam & Hannah, Jenny, Melanie, Erica Durante, June, Jenny O, Kay, MJ, Lisa W, Susan, Kathryn, Claire C, Wendy, Claire, Jane and Tez for the fantastic cards! Thank you to Nicky, Despina, Mrs Hill, Libby, Dottie, Heli, Sarah G, Julia & Daisy and Tez for the lovely postcards! Thank you Maria S, Marie, Sofia, Wendy & Chester, Maria & Michael, Amani, Libby, Nicky, Julia Daisy & Daniel, Nicole, Anne & Kaitlin G, MJ, Sarah G, Lisa W, Shannon & Elsa, Georgia, Jordan, Becky, Dottie the Dalmatian, Kerry F, Amanda, Lisa, Vickie and Kelsey for the great letters and notes! Seren loves reading them! Thank you very much to Maria S for the stickers; to whoever sent the toy horse, notebook and ring; to Nicola Jane for the horse paper; to the lovely Libby for the many lovely parcels, including a ring, a necklace, make your own friendship beads, hairband and book! Thank you to Becky Butler for the Jinny book; to Julia, Daisy & Daniel for the horse sticker book; to Nicole for the puzzle book and pen; to Anne & Kaitlin G for the craft folder; to Lisa for the juggling balls; to Elizabeth B for the book on drawing horses; to Kelsey for the kitten stationery, the many lovely stickers and the bracelet; to Kate Dee & PP for the craft tub and horse book; to Jocelyn for the stickers; to Karin for the stickers and notelets; to Lisa W for the paint by numbers; to Shannon & Elsa for the bead kit, activity book, keyring, clay, magic slate and pencil; to Lisa W for the masks kit and sweets; to Anne for the book and CD; to Kay for the card kit; to MJ for the photos, sticky toy, sock purse, bath confetti, maltesers, magic worm and Saddle Club set; to Lisa W for the scrapbook and chocolate; to Jordan for the horse drawing; to Kim L for the cat jigsaw in a tin; to Kathryn for the face paints; to Claire C for the pencil case and stationery; to Amanda for the stickers; to whoever sent the necklace kit; to PP/Kim for the make your own fairy badge and art kit; to Tez for the dragon horns, horse notebook and pen, and horse sticker book; to Susan for the notelets in the tin, horse stationery kit, gel pens, pencil tin, pencils, notelets and envelopes; and thank you to Dottie for the party bag!
Update 30th April 2011
Seren has had an up and down few months. Her nausea gradually settled down through January and early February, and thanks to her new Pizotifen tablets, her appetite has increased even further, and fantastically, for the first time in years, she is actually gaining weight! What she’s eating is finally benefitting her! One of the side effects of the Pizotifen tablets is weight gain, and she is certainly getting that! Her weight has rocketed from a scary 23.9 kgs (11th centile for her BMI) in January, up to a fantastic 27.1 kgs (38th centile!!!) in March! And I think we’re going to have another pleasant weight-gain-related surprise at her upcoming clinic on 6th May too, as she’s looking a lovely healthy weight at the moment, thanks in part to her discovery of the deliciousness of doughnuts! She ate 10 doughnuts in about 4 days recently!
Seren had a nasty bout of tonsillitis with a horrible chest infection in early February and her chest was really noisy, with lots of thick gunk trying to choke her. We think the chest infection was viral, as an increase in her regular Augmentin tablets helped to sort it out, along with a FANTASTIC nebuliser medication – Nebusal! It’s 7% saline, aka hypertonic saline, and although Seren HATES having it, as it’s like inhaling sea water, horribly salty, it REALLY does the trick and shifts an absolute ton of yukky gunk. So Seren did have to have a few days off school thanks to the chest infection, but thankfully, the Nebusal speeded up her recovery and she was soon feeling much better without the need for IVs.
Since then, Seren has had a difficult few months with her emotions. In mid-February, she found out about the current CF average life expectancy of just 38 years and that upset her greatly. We talked about it to her as well as we could at the time, but it affected her sleeping, mood and behaviour over the next few weeks, and in March she burst into tears out of the blue and said that she couldn’t cope with the idea of her death hanging over her, it was all she could think about. She was also starting to refuse to take some of her medications.
So she had a talk with the CF Nurse, we began a ‘worry book’ for her to write her worries down and get them out of her head, and we bought her a ‘worry pup’ which lives under her pillow, who she can tell her worries to. She has also begun to receive counselling from the hospice where she receives her respite care, which we hope will also help. We are also trying to make her life as fun as possible, as she copes better when she has something in the not too distant future to look forward to, to keep herself positive; and she loves losing herself in a good book, her favourite authors are currently Jacqueline Wilson and Stacy Gregg. She doesn’t like to be alone with her thoughts for a second.
Here’s hoping for a great report from CF Clinic next week, and a happy, healthy summer.
Big thank you’s to December the Elf, Comet, Claire McCartney, Jodie, Ginny, Vickie, Claire, Becky Butler, Wendy, Lisa Sweeney, Quistis, Claire Connon, Libby, Susan Sweeney, Julia Daisy & Daniel, Jennifer Targhi, and Lynn for the beautiful cards! Thank you also to Claire, Liz, and Becky Butler for the lovely postcards! Thank you to Joko for the jigsaw letter! Thank you to Wendy, Mina, MJ, Maria & Michael for the lovely letters! Seren loves to read them! Thank you to Vickie for the bracelet kit; to Mina for the pictures and wordsearch; to Maria & Michael for the bracelet; to Lisa Sweeney for the sweet; to Post Pals for the talking hamster; to Susan Sweeney for the book and bookmark; to Julia, Daisy & Daniel for the photo and pencil case; to Sarah Devlin for the amazing Pony bookends!; to Jennifer Targhi for the beautiful Easter bag, stickers, egg stencil kit and mini eggs; to Lynn for the pony sticker book, DVD, Top Trumps and pumpkin seeds; to whoever sent the 2 iCarly dolls, Hannah Montana cushion, plasticine, Hello Kitty stickers and Hannah Montana game cards; to whoever sent the Hannah Montana sticker album; and to Becky Butler for the Saddle Club book!
Update 31st January 2011
Seren has had a good few months chest-wise, but she has been having a tough time since just before Christmas with a lot of nausea. In mid-December Seren got Norovirus, which didn’t hit her too hard at the time, but it seemed to flare her reflux symptoms up. So we brought the Domperidone and Gaviscon back and she started needing it more and more over Christmas, and by the time she got to CF Clinic at the beginning of January, her weight was down over a kilogram and the consultant couldn’t figure out why she was having such bad reflux symptoms despite being on a high dose of Omeprazole, along with regular doses of Domperidone and Gaviscon.
So the consultant started Seren on Pizotifen, an anti-migraine drug, to see if it helped to alleviate her symptoms, in case they were being caused by childhood migraines. He also ordered an abdominal ultrasound to check whether her liver is starting to have problems, or whether she has gall stones, as both these issues could cause nausea.
She’s had some issues with the new medication. It increases her appetite, which is fantastic, as she desperately needs to gain weight because the doctors are very concerned about her weight (or lack of it, rather). But it’s also made her very tired and she gets upset very easily. But of course, part of the getting upset easily is because she is trying to cope with her nausea symptoms and with all the rest of her CF stuff. But we’re doing our best to keep her going and calm her down and she still absolutely loves all her horse-riding stuff and is doing great in her swimming lessons and dance class too, so we’re trying to make her life as fun-filled as we can.
Her abdominal ultrasound is coming up on 10th February and we’re hoping that we’ll get some answers on some ways to help Seren and ease her reflux-style symptoms.
Thank you to the Prince Rupert School in Rinteln, Juno, Homberg family, Helen T, Kate Dee, Quistis, Claire, Charlee, Dana, Donder, Rudolph, Despina, Vixen, Deborah, Helen Brierley, Penny, Cupid, Tez, Dasher, and MJ for all the fantastic cards! Thank you to MJ, Prancer, Natsumi, Shion, and Blitzen for the pretty postcards! Thank you to Dottie the Dalmatian for all the amazing letters to us and Daisy Pipsqueak! And thank you to Sarah G, Dancer, Charlotte Pope, MJ, Vixen, Mandie, Lindsay, and Jenny for all the lovely letters and notes!
Thank you to Post Pals and Karen (Sami) for the Halloween goodie bags; to the Prince Rupert School in Rinteln for the stickers; to Anna for the picture; to Charlotte Pope for the horse, to Dana for the friendship bracelet; to Mandie for the iCarly book and the DVD; to Liz Ellis for the scraper art kit; to Lindsay for the jewel hairslide; to Helen Brierley for the Roald Dahl tape; to Jenny for the Hannah Montana pen and cuddly horse; to Tez for the dalmatian book and calendar; to our Elf for the Hello Kitty notepad, stationery, socks, stickers, flannel, cupcake, choc coins, nail kit, bangles, shower gel and face mask; to Sarah for the Heartland Horses book set; to Helen T for the jewellery set, the Claire’s Accessories gift card, choc coins, wooden horse kit, and High School Musical cards; to Quistis for the Animagic kitten; to Penny for the marshmallows and stickers; to Claire for the colouring sheets; to Mary O’Neill for the Hannah stocking; to Blitzen for the stickers; and to MJ for the Hello Kitty bracelet, Spongebob promise, stickers, Hello Kitty necklace, butterfly hairslide and mini show horse kit.
Update 28th October 2010
Seren has been pretty well over the last few months! She’s had the odd cold and did have a week in August where she had extremely high temperatures and totally lost her appetite (plus she’s had a few nasty chests), but they’ve cleared up relatively quickly with some extra Augmentin tablets and some saline nebulisers. She’s also had only minimal joint pain recently too, which is great.
She had her Annual Review in July, which was generally very positive. Her chest x-ray was really great! Her BMI was only on the 14th centile, and her lung function was only 89% and 91%, so not her best results, but she did have a wet cough for a few weeks around that time and had been coughing up yellow gunk. She also got put on long term Lactulose for persistent constipation, which has helped her a lot.
By her October CF Clinic appointment she had climbed up to the 26th centile for her BMI, which is fantastic, but her lung function was 93% and 80.8%, so even worse than last time. The doctors said that from the results, it looked as if she might be a little wheezy, so they said to try giving her some Ventolin, which didn’t help much, but she did develop a wet, chesty cough a few days later, which we shifted with some extra Augmentin tablets, extra saline nebulisers and plenty of physio, and her chest seems clear again now.
She just got her flu jab last Friday and at the moment doesn’t seem to have suffered any ill effects from it. She had her first proper eye test on Tuesday, after complaining of problems with her vision, and it was discovered that she is long sighted, so she has been prescribed some glasses to wear for close up work, which we will be picking up on Saturday. She’s really quite excited about getting them!
Here’s hoping for a healthy autumn and winter for her!
We have lots of thank you’s since our last update! Thank you to Elizabeth, Claire, Rosie, Mai, Elle M, Debbie & cats, Elle Lewis & George the cat, Quistis, Kim Lawrence, Vickie, Post Pals, Helen Brierley, Shahlaa, Julia & Roger, Mandie, Becky, Susanna, Maria S, Vicky S, Catherine and Kate Dee for the fantastic cards Seren has received lately! Thank you to Charlotte, Susan, Claire, Sarah G and MJ for the lovely postcards! Thank you to Jenny Orpwood, Claire, Kim Lee & Bridget, Postie Sarah, Maria & Michael, Kim & Kev, Samantha, Teresa, Tina, Tracy (Bristol), June Junko, Julie Emily & Daisy, Jenni, Jenny, Lynn S, Helen T, Jenny B and Beth for the beautiful birthday cards! Thank you to Vashti, Sophie & Emma, Naomi G, Amber, Aly Kehn, Rachel, Sarah, Claire, Karen Darren & Amelia, Claire McCartney, Lucy & Richard, Dottie the Dalmatian and MJ for the lovely letters, Seren loves to read them! Thank you to Sophie & Emma for the drawings; to Amber for the vouchers; to Rosie for the stickers; to Aly Kehn for the photo and stickers; to Postie Sarah for the Claire‚’s Accessories gift cards; to Teresa for the iron-on patches; to Mai for the notecards and envelopes; to Sheelagh Hawkins for the talking doorbell; to Elle M for the cat ring holder, ring, cat pencil topper and PDSA badge; to Claire for the Hannah Montana stamper customising set and keychain kit; to Debbie & cats for the cat postcards, and horse and cat stickers; to Elle, Lewis and George the cat for the cupcake candle and cat magnets; to Helen T for the Magic Ponies book, Pippa Funnell DS game and Net DS game; to Jenny B for the horse t-shirt; to Quistis for the cuddly cat; to Sarah for the photo; to whoever sent the notelets, postcards and paper; to Joanne for the cat drawing; to Maria & Michael for the Polly Pocket book; to Mandie Lowry for the Hello Kitty goodie bag, bubble gum, slides, stickers and iCarly keyring; to Karen, Darren & Amelia for the mini scraperfoil; to Helen T for the colouring book; to Penny Berrill for the Narnia Activity book; to Vickie for the cake pencil case and bracelets; to Claire McCartney for the High School Musical bookmark; to Lucy & Richard for the engraving art magnets and stickers; to Helen B for the High School Musical Top Trumps; to Shahlaa for the fairy stickers, hot chocolate sachet, Hello Kitty pencil case and lip gloss; to Dottie the Dalmatian for the lovely cuddly dog, which the children have named Daisy Pipsqueak; to Quistis for the cat charm and cat magnet; to Mandie for the butterfly clips, Pony in my Pocket and Narnia stickers; to Helen Brierley for the cat stickers; to Becky for the stickers, cat postcard and bunny; to Catherine for the sponge painters, foam stickers, craft pack, glitter and Holiday Things to Do book; to Margaret Howell for the cuddly doll; and to Vicky S for the fairy books and friendship bracelets.
Seren absolutely loves reading her own letters and cards, but sometimes can’t read small handwriting and decipher the letters. I read them out to her if this happens but she finds it more enjoyable to read herself. I hope that this may improve once she gets her first pair of glasses on Saturday but please could I ask if you write her a letter to write clearly for her. Thank you!
Update 22nd June 2010
Seren’s had a pretty rough couple of months really. She was pretty well until 24th April, when she started complaining of nausea. This continued into the next day, and the nausea was so strong that we had to leave Church, and Seren insisted that she wanted to go to the hospital to see if they could figure out what was making her feel sick. She was examined by a registrar on the ward, who said that it could be her gastro-oesophageal reflux flaring up, so he increased her Losec from 20mg per day to 30 mg per day, and he wanted Seren to submit a stool sample, to check whether her Creon dose needed increasing, as apparently too little Creon could cause fat to be left in her stomach undigested, which would inflame it and cause nausea.
Her symptoms didn’t improve over the next five days or so, and Seren had to sit out of class frequently during the day because of her nausea, and when the nausea hit, each time, she would need total silence to cope with it until it passed away again. She was also waking at night with nausea. It got to the stage where anything that went into her stomach, medications or food or drink, was making her feel incredibly sick, and it was REALLY making her miserable. She was also refusing to go to any of her after school clubs, or to Nanny and Grandad’s house, because she was always feeling sick.
At this point, her consultant prescribed her some Gaviscon to take regularly through the day every time she felt sick, but it didn’t help either. She barely ate anything all evening and had constant nausea and burning pain in her chest, and it took her until midnight to fall asleep, but then was awake again with nausea at 2am.
By the 30th April she was still refusing to eat or drink and I ended up having to take her to the hospital with dehydration. She was seen by her consultant, who examined her thoroughly and found that she’d lost 1.5 kgs in just five days, taking her BMI down to the 17th centile. He started her on oral rehydration, 5mls of Dioralyte every 5 minutes for an hour, which she managed to tolerate, and she had a cannula fitted and had blood taken to check her liver function, in case the nausea was caused by the start of CF-related liver disease.
The bloods came back okay and so the consultant said that the nausea and burning pain must be caused by her reflux, so he prescribed her a 3 day course of Ondansetron, a really strong anti-nausea drug. This worked within an hour and Seren was OVER THE MOON! For the three days she was on it, her nausea completely disappeared and she was eating and drinking normally and enjoying life.
However, because it’s such a strong drug, she was only allowed to take it for 3 days, and when the last dose wore off, her nausea and burning pain came straight back. She was so disappointed and the nausea was having a big effect on her life. She started refusing to sleep in her bed, or anywhere in the house, wouldn’t sleep with bedding on or pyjamas, panicked if she was ever on her own in a room, and was too scared of feeling sick to go to any of her after school clubs.
She was seen at CF Clinic on 7th May and although she’d started putting back on some of the weight she’d lost, her lung function had dropped to 80-odd%, and her consultant found that her bowel was badly blocked. We felt that this was caused by the Ondansetron, because prior to her having it, her bowel hadn’t been blocked, but the consultant felt that this had been missed and was the actual cause of the nausea. But either way, the blockage had to be cleared before Seren could start any new treatments for the nausea, so she started taking 10 mls Lactulose twice a day.
This cleared the blockage within a week, but Seren’s nausea and burning pains were just as bad as ever, so the consultant finally started Seren on Domperidone on 14th May, to empty her stomach more quickly, three times a day. This worked a treat, and completely changed her life. She was able to take the tablet 20 minutes before a meal, eat as much as she liked, and not feel sick afterwards! Snacks in between meals were still making her sick, so she had Gaviscon after her snacks, and that solved that last of the issue.
More recently, the increased dose of Losec seems to have taken effect, and her stomach seems to have healed and become less sensitive, and so at the moment, she’s not needing very many doses of Gaviscon or Domperidone, but we know what to do each time she does get symptoms – we bring out the Domperidone and the Gaviscon, and we sort it.
Seren also had a bit of a chest infection at the end of May and beginning of June, a viral one which started out as a cold and went onto her chest and had her coughing up thick chunks of yellow gunk. We increased her Augmentin tablets for a while as a precaution, and had her on lots of saline nebulisers and extra physio sessions, but she coped REALLY well with the infection and worked hard at clearing her lungs all the time.
She’s just about back to normal now after a rough couple of months, and fingers crossed she’ll have a good few months now. She has her Annual Review (MOT) coming up next month, and so she’s got to go have blood tests and a chest x-ray done tomorrow, in preparation for the MOT.
She’s also got her FIRST EVER hospice stay coming up next week, and lots of fun things planned at school, like Nature Club and Sports Day. And of course, in just 19 days, it’ll be Seren’s EIGHTH birthday!!! She’s incredibly excited!
Thank you to Fiona, Kate Dee, Quistis, Postie Sarah, Helen Brierley, Kim, Martin Jackie & Jamie, Libby, Post Pals, Maria & Michael, Jon Paul O, Max, Liz in Manchester, Charlie & Lianne, Lucy, Liz, Lily at St Pauls Rainbows, Elizabeth Eckhardt, Claire, Sarah and Jenny for the beautiful cards! Thank you to Margret, Despina, and Claudia Meyer for the lovely post cards! Thank you to Caroline, Charlotte Poulter, Darren Shannon Daniel Owen Leah Matty & Missy, Karen Drew, CeeCee, Julie Deaves, Maria & Michael, Lydia, Stephanie Dominic Karen & family, Lindsay F, and Helen Brierley for the fantastic letters! Thank you to Fiona & Peter for the cuddly Little Miss Sunshine; to Helen Brierley for the seeds, the rabbit photos, the cat stamp and the letter and numbers stamps; to Post Pals for the organiser; to Maria & Michael for the make your own animal specs; to Jon Paul O for the knitted duck; to Caroline & Max for the chocolate chicks and bunnies; to Darren Shannon Daniel Owen Leah Matty & Missy for the skipping rope; to Karen Drew for the iCarly necklace and puppets; to whoever sent the fairies sticker and Polar book; to Kate Dee for the craft kit; to whoever sent the Hannah Montana purse; to Helen T for the grow your own fairy garden kit and fairy poster art kit; to Sheila for the hair dressing doll, Disney Princess card game, and design your own pencil case kit; to Postie Sarah for the Sylvanian Family village sweet shop and koala family, the Pony In My Pockets; to Joanna for the notepad and gel pens; to Lydia for the craft supplies; to Claudia Meyer for the Melinda book and bracelet; to Stephanie Dominic Karen & family for the knitted teddy, Bratz book, pencil and rubber and create your own diamante notebook; to Claire for the lucky dip gift; to Sarah for the mini monster; to whoever sent the dolls bedding; to Paul Stef & Keera for the cuddly dog; to Jenny for the booklet and make your own handbags kit; to Lindsay F for the knitted lion; to Post Pals for the bracelet, purse, make your own handbags, turtles and my sewing kit.
Update 27th March 2010
Seren had an incredibly difficult end to 2009. She became ill on 3rd December, and that was the last full day she spent at school that year. She had CF Clinic on 4th December, and her lung function was down to 80%, and she had a temperature and was tired and had a low appetite. By the following Wednesday, her lung function had declined even further (the CF Nurse wouldn’t even tell me the results, so it must have been bad!) and she was struggling with a horribly thick chesty cough. She had a chest x-ray and was started on Ciprofloxacin oral antibiotics.
By the 12th December, she was incredibly lethargic, refusing to eat or drink, coughing constantly and barely able to breathe on times, and so we took her back into hospital. She had lost over a kilogram and was started straight on IV antibiotics via a short long line in her arm. The line failed the following morning and so she had another cannula fitted, which quickly became incredibly painful to use. So another cannula was fitted, this time a baby cannula, the smallest available, and incredibly, it lasted the whole of the rest of the 14 day course!
The IVs slowly worked their magic on the infection, but Seren was very poorly, requiring 6 nights overnight stay at the hospital, numerous saline nebulisers, inhalers and tons of extra physio sessions because her cough was the worst I’ve ever heard it, and she found it so distressing. There were many times when mucus completely blocked her airways and she was unable to breathe while she struggled with her coughing fits and her chest was recessing the worst I’ve ever seen it.
Christmas was a very weird time with the twice-daily trips to the hospital for her IV doses and all her treatments, but she still managed to enjoy her day, and by the time the IVs finished on the 26th December, she had regained most of the weight she’d lost and her cough was much improved. But it still took her another few weeks to recover completely, to get her energy back and to stop coughing altogether. She was just about better in time to go back to school in early January.
Since then, she has been very well, with just the occasional cold, and she did have a day off school after the second half of her Swine Flu jab, as she had a high temperature, lethargy and loss of appetite.
She had an appointment with a CF Specialist earlier this month, and we were amazed when her lung function had gone up to an AMAZING 125%!!! The highest it’s ever EVER been! The specialist was really pleased and said that although late 2008 and all of 2009 were rough for Seren, she seems to have recovered really well and although her weight still needs a lot of work, she is generally doing well at the moment.
We know that she’ll get hit again by another nasty chest at some point in the future, and she does have a slight cough on times at the moment, but the specialist has given us some new weapons to use on the gunk when that does happen (such as steroids, different inhalers and hypertonic saline), and so for now, we’re enjoying this period of good health, as is Seren, although the fear of getting ill again is always there, in the back of her mind.
We are very much looking forward to the Easter holidays, as we are going to visit my family in South Wales for Easter, and then Seren has a 3 night Brownie sleepover when we get back and she can’t wait!
Fingers crossed for a healthy, happy Easter!
Thank you to whoever sent the reindeer cards and reindeer get well card! Thank you to Kathryn, Carole Sinclair, Gracie, Debbie & cats, Post Pals, Matilda Loughtman, Despina, Ruby & Mr & Mrs Nissen, Lucy, Daniel, Lynzie, Helen T & Adrian B, Catherine, Jane, Jennifer Jain & family, Karen (Sami), Tez, William S, Katie, Kim Ginger, Laura H, Rockferry High School, Brabourne & Smeeth Brownies, Sarah, Selina, Lynzie Elf, the Homberg Family, Helen Brierley, Prancer, Lucy Ashworth, Zoe, Lindsay, Becky Paulinyi, Beth Wendy & Doris, Emma Gray, Martin Jackie & Jamie, Estelle (Taunton), Sarah Kidd, Sarah G, Kate Dee, Natsuki, Estelle Graham Kate & Lauren, Daniel & Joseph, Lucie Shaun Daisy & Molly Willby, Emma & Jayden Barclay, and Postie Sarah for all the cards received in December 2009 – they were invaluable at keeping Seren occupied and upbeat during her hospital stay and long period of illness!
Thank you to Elizabeth Eckhardt, Kate Dee, Kim Ginger, Alexia, Postie Sarah, K, Jannah, Kate Dee, Lily, Sarah G and Alison for the fabulous cards Seren has received so far in 2010, and thank you to whoever sent the anonymous Valentines card. Thank you to Kim Ginger, Nina, and a ‘friend’ for the postcards! Also, thank you to Beth Wendy & Doris, Becky Paulinyi, and Lily for the cards for Adrian and me. Thank you to Mrs Claus, Al the elf, Snowberry, Beddy Bear and Maria & Michael for the lovely letters! And thank you to Sarah G for the notes!
Thank you to Debbie & the cats for the paper chains and sand art; thank you to Jaxsons Blankets for the blankie; thank you to Al the Elf for the fairy dust and elf hat; thank you to Post Pals for the Rock On necklace, selection box and snowball bath fizzers; thank you for the Littlest Pet Shop Pencil case; thank you to Jennifer Jain & family for the cat book; thank you to Kathryn for the sweets and stickers; thank you to Vickie for the lolly; thank you to Sarah for the make your own Christmas decorations; thank you to Beth & Wendy for the Shining Stars cat, Hannah Montana mug, cookie mix, hair accessories, scrapbook kit and Buttons; thank you to Doris for the Lady & The Tramp book and Bratz activity annual; thank you to Jess in Taunton for the Narnia colouring book; thank you to Natsuki for the origami; thank you to Daniel & Joseph for the cuddly Santa; thank you to Lucie Shaun Daisy & Molly Willby for the Bratz Pampered Petz; thank you to Jessica Bryce for the biscuits; thank you to Becky for the mini scrapbook; thank you to Jenny Bridger for the personalised jar of sweets and cat diary; thank you to Tez for the cat and dog bag; thank you to Helen T for the smiley faces, the solar butterfly, the Naughtiest Girl in the School books, the Buttons, the Bad Girls book, the DS bag and GAME gift card, the Illustrated Mum book and the High School Musical stamper customising set; thank you to Postie Sarah for the Sylvanian Family rabbit and chipmunks and star fairy pyjamas; thank you to Al the Elf for the knitted dog in a bag; thank you to R Gallimore for the marshmallows, Hello Kitty cafe and mosaics by numbers; thank you to Grace Caterham-Ashford for the nail varnishes, Sylvanian Family gift shop, Hannah Montana activity pad and pen, the Russian doll bobbles and clips and Sylvanian Family cat; thank you to Becky P for the bracelet, bobbles and dragonfly necklace; thank you to Kim Ginger for the cheerleader pom poms. All the presents made a difficult December almost bearable!
Thank you so much! And thank you to the lovely person who sent me the Boots fruit cocktail toiletries; to Helen T for the russian doll; to Jenny B for the bottlecap keyring; to Helen T for the GAME gift card for Adrian; and to Jenny B for the bottlecap keyring for Adrian!
Also thank you to Sarah Kidd for requesting an Angel for Hope; thank you to Alison for the Camp Rock book and cat bookmark, thank you to Elizabeth Eckhardt for the stickers; thank you to Lily from 2 Stray Cats for the very beautiful Purddy Cat; thank you to Nina Saustrup for the handmade cat; thank you to Rhiannon for the doorhanger kit; thank you to Post Pals for the duck to swan kit; thank to you Debbie & the cats for the audio book.
And thank you for the gorgeous box of treats I was sent for Mothers Day! I got a card, a ‘Favourite Prayers’ book, ‘God’s Little Book of Comfort’, a LUSH bath bomb, heart notecards and pen, a magnetic notebook and two more notebooks! :o)
Update 26th November 2009
Seren has had a pretty good couple of months, with a rough chest infection in the middle.
On 16th September, Seren started swimming lessons and is so far doing really well!
On 27th September Seren came out in a heavy cold and by the following day it had gone onto her chest and was quickly making her poorly, but she insisted on going back to school on the 29th. The following day, I discovered that she’d been trying to hide her chesty cough from me, so that she wouldn’t have to miss school, cheerleading or swimming, but although I let her do those things, she was exhausted and breathless by the end of the day. By the end of the following day, her cough was really nasty again.
On 2nd October, Seren had CF Clinic and they found that although her weight has gone up to 22.7 kgs and she’s now 124.5 cms tall, it puts her on the 27th centile for her BMI so she’s still got a long way to go to get to the 50th centile and her ideal CF-healthy weight for her height. Her SATS were okay, but the physio was concerned when she heard her nasty cough and wanted us to increase her physiotherapy to three times a day until her cough improved. And when she did her lung function, her FEV 1 was down to 80.3%, a drop of over 20% since July. Her consultant listened to her chest and there were a lot of crackles in her right lung as well, so he increased her antibiotics and said to make sure to increase her physio as well.
By Sunday, Seren’s chest had got much worse. She was too tired to go to Sunday School and she was so tired that she barely moved off the settee all day and her cough was absolutely disgusting. The gunk in her chest was so thick that she was choking frequently. It got so bad that she was refusing to cough or have her physio, and so we started up a physio reward chart, so that she could earn a Miley Cyrus doll by working hard with her physio, and that really helped to motivate her.
Seren insisted on going to school on Monday, so I spoke to the CF Nurse about having a saline nebuliser to help her to break down the mucus more easily. She agreed and so we picked it up at the end of the day and she tried it for the first time that night. It definitely made a difference, and although her cough was still very rattly, she was able to cough some bits up.
She insisted on going to school on the Tuesday as well, but because of all the mucus she was coughing up and swallowing after her morning dose of nebuliser, she vomited three times at school that morning and had to be sent home. When I got to school to pick her up, her face was greenish-grey and her chest was incredibly rattly. She sounded absolutely terrible, so I took her home and rang her CF Nurse and arranged for her to see Seren at the hospital.
When she was examined, her SATS were lower than usual, and although her FVC was in the 90s, her FEV 1 was down to only 36%. Part of that was a reluctance to blow hard enough, because she didn’t want to trigger coughing, but obviously, even allowing for that, her lung function was LOW. Her chest still sounded crackly and harsh, but as her swab results were clear, the consultant thought that it was probably some sort of viral infection. So he prescribed LOTS of physio, LOTS of saline nebulisers, LOTS of rest, increased her preventer and reliever inhalers, and wanted her to drink plenty of fluids to help thin the mucus.
So she was on a very intensive treatment regime, but it really helped in the end. She worked very hard with all her physio sessions and although she was choking on her mucus many times, she kept coughing until she’d cleared her chest for a while. She ended up having Wednesday, Thursday and Friday off school, and by the following Monday, she had recovered enough to go back to school.
On 24th October, Adrian (Seren’s Daddy) came out in suspected Swine Flu, and was put on Tamiflu. Because of Seren’s CF, she was given a 5 day course of Tamiflu as well, and despite all the horror stories about side effects from the Tamiflu, apart from complaining of mild nausea twice, she didn’t have any side effects at all! And thankfully, neither did she come out in Swine Flu!
On 5th November, Seren had her flu jab and she was very brave!
Since then Seren has stayed very well, without a hint of a cough or cold. Fingers crossed for a healthy December and a fun Christmas! Seren has her Swine Flu jab coming up on Friday and CF Clinic on the Friday after, 4th December. She’s already very much looking forward to Christmas, to putting up our tree, and to taking part in her school Christmas Play – she’s going to be The Narrator!
Thank you to Maria & Michael, Sarah, Tracy (Bristol), June Junko, Becky Paulinyi, Viks, Zoe Preston, Kate Dee, Kim Ginger, Sarah Gilligan, Jane, and Sarah for the lovely cards! Thank you to Sarah Gilligan, Lorna, and Tam from Japan for the postcards! Thank you to Claire McCartney, June Junko, Debbie Gray and Beddy Bear (aka S Gilligan) for all the letters and postcards! Thank you to Post Pals for the LEGO plane. Thank you to Maria & Michael for the skeleton straw. Thank you to Sarah for the Animal Hospital koala playset; and for the fish kit, caterpillar kit, popping candy, 2 bracelet kits, butterfly kit, 2 lollies, Princess Smartypants book, cat mask, needlepoint kit, dog mask, make your own jigsaw kit, cress kit, Rainbow Magic book, and Eco-Wolf book; and for the paper rabbit. Thank you to Post Pals for the flying lantern. Thank you to Viks for the chocolate bar. Thank you to Kim Ginger for the fairy activity book; and for the rub on stickers. Thank you to Jenny B for the Bratz runway game. Thank you to Debbie Gray for the cat game. Thank you to Post Pals for the Jonas Brothers book and the Wish Box. Thank you to Jane for the craft supplies. Thank you to Sarah for the ‘Puffa Pouch’!
Update 13th September 2009
Seren has had a great summer and taking her Calogen up to 30 mls per day has made a big difference to her appearance! She is starting to fill out and looks much healthier!
She has really enjoyed her summer, having her friend round to play at the house, going to the bowling alley, going to Pleasurewood Hills, going to the cinema, going to a play farm, going on holiday to West Wales, staying overnight with my parents, going to the park, going to Africa Alive, playing in the fountains, and helping Dylan to celebrate his 5th birthday, including bowling free hand for the whole hour!
On 25th August Seren’s physiotherapist came round and taught her how to use the PEP machine to do her morning physio. It is MUCH quicker than percussion physio, and involves blowing down a mouthpiece which has a resistor fitted to it, and each puff has to move the attached pressure gauge up by 10-20 bars. She has to do this ten times and then repeat it. She got the hang of it really quickly and it is a total life-saver in the busy mornings! In the evenings she still has her percussion physiotherapy on the physio bed.
On 26th August Seren had a GP appointment to see about her warts on her fingers and her frequent mouth ulcers. The GP put her name on a list to have her warts frozen off and gave her a prescription for a new paste to put on any future ulcers, apparently they are caused by her body being ‘run down’ by having CF. We walked back from the GPs and Seren’s joints were causing her a lot of pain, so she ended up having to go in the pushchair for half of the way home.
On 3rd September Seren started Year 3 at school and was VERY nervous about how she’d cope with the harder work, but has settled in beautifully now! On 7th September, Seren went to her first session of Brownies! She looked so beautiful in her new uniform and she really enjoyed herself there.
On 9th September Seren woke up with very sore hips, after a) her first PE session of the term the day before, and b) forgetting to put her insoles back in her shoes after PE for the rest of the day, and so she needed a dose of Ibuprofen, but it gradually improved and she was okay the next day.
Fingers crossed for a healthy autumn and winter!
Thank you to Brittanie Lark, Tina, Amy Singleton, Viks, Helen T, Liz, Kim Ginger, Hanna and Jenny B for the lovely cards! Thank you to Estelle, Kate & Lauren, Sarah Gilligan, and the Schauer family for the postcards. Thank you to Brittany Henderson, Alexis Schoonover, Kameesha for the notecards (and the wordsearches!). Thank you to whoever sent Seren the cat newsletter, she loved it! Thank you to Lydia for the party bag full of goodies! Thank you to Jenny B for the gorgeous Hannah Montana bag, bobbles and hairband! Thank you to Debbie & cats for the beaded frame kit. Thank you to Helen T for the Hannah Montana stickers. Thank you to Kim Ginger for the lovely books! Thank you for the flannel lollipop. Thank you to Post Pals for the lovely pillow, the cuddly poodle and the pirate chocs. Thank you to the Schauer family for the Turtle magazine and Barbie stickers.
Update 18th July 2009
Seren has had a tough few months. On 27th April she was complaining of hip pain, so she had to skip PE at school, and when I spoke to the physio on 30th April, she told me that because it was causing her so much pain, Seren would have to completely avoid trampolines and only have two minutes at a time on a bouncy castle. She said the best exercise for her would be walking, swimming or cycling. Seren was NOT happy!
On 11th May, Seren was saying that she hates having Hypermobility more than she hates having CF, and it was really starting to impact negatively on her life as she was getting pain most days and was struggling to cope with the limits it was putting on her lifestyle. I decided that we needed some more input from her physio about her hypermobility. On 13th May she was complaining of even more pain, and then on 17th May, Seren had a bit of a meltdown and was incredibly upset, saying that she hated CF, hated hypermobility, and just wanted to be normal and to have a normal brother.
On 19th May she had more hip pain and so I ended up giving her ibuprofen for it, which helped. On 20th May she finally saw the physio, who answered Seren’s questions about her hypermobility and re-assessed her joints (she scored 6 out of 9 on the Beighton Score, and her elbows, fingers, knees and ankles are her bendiest joints). The physio also picked up that Seren’s ankles bend in and aren’t supporting her legs properly, which is causing her knees and hips to twist, so when she’s walking it’s causing her lots of pain. To help with this, Seren needed to get some more supportive shoes, be fitted for insoles to re-train her ankles, and to start doing ankle exercises every day to strengthen her ankle muscles. She also said that Seren can try doing 5 minutes at a time on a bouncy castle and see how she copes. If she copes well, then she can increase it. As for other activities, such as a gymnastics class, she can try it and then see how much pain it causes and whether it’s within tolerable levels. We said that we’d noticed that just before Seren gets a bad episode with joint pain, she gets REALLY tired and grizzly, and apparently that can be common with hypermobility syndrome.
When I picked her up from school that afternoon, her teacher said that he wanted to refer her to the Parent Support Adviser, who could get her into some after school activities to improve her quality of life and to act as a kind of respite from coping with Dylan and his challenges, to have some time for herself.
On 24th May Seren started with a dry cough and wheezing and seemed tired with very little appetite. The next day her temperature shot up to 40 C, her cough got worse, and she still wasn’t eating. I took her to the hospital the next day when her cough was 40.4 C in the early hours of that morning and 39 C later in the morning. At the hospital, she was 22.1 kg and her sats were 97%, but while we were there her temperature shot back up to 40.1 C and she was very out of it, just zonked out on the hospital bed, and her face was a horrible red/grey colour. Her ears and throat were slightly red and one area of her lung wasn’t getting any air entry (like in March), and if it hadn’t been for the x-ray showing no serious infection and clear blood tests, they would have kept her in hospital and started her on IVs. As it was, they sent her home on oral Ciprofloxacin for a week, saying that it was probably some sort of viral infection.
When she got home that night her temperature was still high, but it broke overnight and stayed down after that. However, she was still incredibly pale and wasn’t eating or drinking much at all. By the 29th, Seren was still very tired, snuffly and coughing, but she did eat a bit. The next day she slept late and was still very tired and grumpy, and that didn’t improve over the next few days.
School started back after half term on 1st June, but Seren was still absolutely exhausted with no appetite. I did think her cough was starting to clear up, but that night she suddenly started with AWFUL coughing fits and a really nasty, thick, chesty cough. I tried doing a really intensive physio session that night but it didn’t really help, as Seren could feel how thick the cough was and didn’t want to cough!
She wanted to try going back to school the next day and so I dropped her off in the morning, but she was sent back home at 10.30 am because she was so exhausted, refusing to eat and coughing so much, and she was complaining of nausea. I rang the CF Nurse and she said that if Seren got worse before Friday’s CF Clinic, then we should take her to the hospital, but if possible, it would be best to wait until Friday. She had a really bad day and that evening was so so poorly, she couldn’t stop coughing, could barely breathe, her chest was recessing badly and physio just wasn’t shifting it.
She was just as bad the following morning, so I took her to the ward and she had dropped over a kilogram in a week, taking her down to only the 10th centile for BMI, and when the registrar listened, the same patch of her lung still wasn’t getting any air entry. She didn’t want to put her on Ivs though until she’d had her lung function done, so we had to wait until Friday and she prescribed Seren some Augmentin tablets to get her through til then.
Seren had awful coughing fits again for the rest of the day and for most of the next day, but around tea time, Seren FINALLY found some energy and found a bit of an appetite and said that her chest felt a little better!
The 5th June was CF Clinic and although her cough was still really nasty, she ate and drank better, and when she was weighed, she’d put on 1/2 a kg to take her back up to 21.5 kgs, which was 13th centile for BMI. The real bit that scared us was her lung function, which had dropped to 81%, and I dread to think what it had been a couple of days before that. However, she HAD managed to clear the dull patch in her lung! Her consultant diagnosed her as having the flu which had given her a secondary chest infection, but that because she had started to show some improvement, he wanted to hold off on the IVs and continue on the Augmentin. If her lung function hadn’t gone back up by her Annual Review in July though, she would have IVs. Due to her incredibly poor weight, her dietitian gave her Calogen supplements to try, 5 mls twice a day.
From 6-9th June, she had a slow and steady improvement and she was slowly regaining her appetite and energy, but her cough was still very wet and she was still sleeping an awful lot. On 10th June, she had her Annual Review bloods done and she was INCREDIBLY brave! When we saw her teacher that afternoon, he said that she definitely didn’t look well enough to go back to school.
She finally went back to school on 15th June, and on 17th June, I saw the Parent Support Adviser about extra-curricular activities, and she got her into a dance class on a Thursday night! She also said that when Dylan turns 5 in September, she can get him into extra-curricular stuff too! Woo hoo! Seren went to her first dance class on 25th June and she loved it and didn’t have any pain afterwards!
On 26th, Seren had her orthotics appointment to fit her for her insoles and she was very upset when the phsyio told her exactly what sort of shoes she’d have to wear once she got the insoles. They would have to be very sturdy t-bar shoes that she’d have to wear all day and she’d have to wear trainers instead of plimsolls for PE. She‚Äôd also have to get special trainers just for wearing indoors so that she could keep them on right up until she went to bed. She was NOT happy!
On 2nd July, Seren was complaining of lots of ankle pain because of all the practise they were doing at school for sports day and so she took her trainers into school to wear for PE to give her more support, which did help.
On 10th July, I did Seren’s annual review nose throat and cough swabs, and she had her birthday party, and a VERY good school report! She got all Level 2 and 2b’s, and in Reading and Science, she got Level 3! What a total star! Her teachers were SO pleased with her!
The 11th July was Seren’s 7th birthday and she opened her presents first thing, then we all went on the train to Norwich and had lunch at Frankie & Benny’s before Adrian took her to see High School Musical live show at the Theatre Royal.
The 13th July was Seren’s sports day and she tried her best. Then on 14th July, she met her new teacher and gave her a little book I’d written called ‘All About Me’, which was written from Seren’s perspective explaining about her CF, her astma and her hypermobility, and explaining about the problems she’s faced over the past year, which should help her new teacher to understand her and help her.
On 16th she had her Annual Review, and her weight had gone up by only 200g to 21.7 kgs, which only took her up to the 16th centile for her BMI. However, her bloods and swabs were clear, which was great. Her Vitamin E dose needed reducing from 1 ml to 0.5 ml per day because her vitamin E levels were too high, but all her other medications stayed the same. The consultant acknowledged that this has been by far her worst year health-wise and knows that it is directly related to her poor weight gain, so wanted the dietitian to get involved. He wants us to increase her calorie intake, push the Maxijul powder as much as we can, and to bump up her Calogen dose from 5 ml twice day to an initial 5 mls three times a day before building up to 10 mls three times a day eventually. He also said that if her weight centiles haven’t improved by this time next year, then we’ll need to start seriously thinking about a gastrostomy, which neither Seren nor we want, if we can avoid it. She was also seen by the physio, who fitted her new insoles and said that she’ll be teaching her a new form of physio over the summer, using the PEP machine, which Seren will be able to do by herself. This will be great!
The following day was her last day in Year 2 at school and her last day of Key Stage 1! Dylan was at the childrens hospice, so we went to the shoe shop and got Seren some Doodles and two pairs of trainers, one pair for indoors and one pair for outdoors, so she’s sorted now until school starts back.
Fingers crossed for a happy, healthy summer holidays!
Thank you this month to Martin, Jackie & Jamie, Catherine, Tracy (Bristol), Sarah, Michelle Kendel, Becky Butler, Kim Ginger, Kate Dee, Claire McCartney, Estelle & children, Helen T, Helen Brierley, Maria & Michael, Julie (Daisy’s Grandma), Debbie & cats, Charlee, Jack & Harry, Jenny Orpwood, and Linby for the lovely cards! Thank you to Maria & Michael and Despina for the postcards. Thank you to Nicky Walker, Helen T, Hayley, and Anne Gairn for the letters. Thank you to Margret Nagy for the note. Thank you to Helen T for the tray bake cake. Thank you to Tracy (Bristol) for the Clementine book. Thank you to Claire McCartney for the get well balloon, and the hair clips. Thank you to Kim Ginger for the paper butterflies and the inflatable guitar. Thank you to Estelle & children for the ‘Wheelie Girl’ book. Thank you to Anne Gairn for the make your own Address Book kit and Ella Courtney doll. Thank you to Anna for the Me To You Bear photo clip, bobbles and cuddly duck. Thank you Debbie Gray & cats for the furry cat. Thank you to Helen T for the Hannah Montana stickers, sticker book and 3D drawing pad. Thank you to Helen Brierley for the dressing up fairies book. Thank you to Charlee, Jack & Harry for the stickers.
Update 26th April 2009
Seren has had an up and down couple of months. On 16th February, Seren still had a wet cough, but she had a swab done on the 17th and it came back clear.
On 22nd February, Seren went to soft play and really wore herself out doing handstands and forward rolls and started complaining of joint pain. The next day, she was very very tired and didn’t want to go to Rainbows after school because she was so tired. On 24th, she started swimming lessons at school again, and afterwards, she was still complaining of joint pain, and was still exhausted. I put it down to all the exercise at first, thinking that it was her muscles which were painful, but on the 25th, she was STILL complaining of pain, and it was in her elbows and knees, not her muscles, and it moved to her hips and knees. Seren still had the joint pain in on the 27th March, but she managed to go to Rainbows that week. People had been suggesting that her joint pain could be caused by her hypermobility and so I rang her physiotherapist to ask her advice. She said that yes, it was her hypermobility and that she needed a week of total rest, no walking to school, no playing outside at play time, no swimming, and no PE. So she had a week of total rest, which she found VERY frustrating, but it did completely get rid of the pain.
A week later, when I picked Seren up from school, I noticed that she was developing a chesty cough, so over the weekend we gave her extra physio and inhalers and kept a close eye on her. The cough wasn’t any better by the Monday, so I took her into school and she had a lot of coughing fits on the way, so I asked her teacher whether he thought she was well enough to stay. We decided to let her try staying and she coped okay. Over the next few days, her cough kept getting worse, so she had a swab done again and we kept up the extra physio. The swab came back clear on the 29th March, but her cough was getting worse and she was starting to complain of stomach pains, and she had a restless night.
On 30th March, her temperature went up to 38.8 C, and she was still coughing and still had stomach pains. The CF Nurse came out to see her and said her chest sounded okay, but that if she was still unwell the next day, to get the GP to see her. Seren didn’t eat much all day and her cough just kept getting worse. By the end of the afternoon she was having really bad coughing fits and could hardly breathe and extra physio wasn’t helping.
We ended up taking her to hospital that night and when the doctors listened to her chest, there was a section of her lung which wasn’t getting any air entry and so they were concerned that she might have pneumonia, so they sent her for an x-ray. Her lungs looked okay on the x-ray, so the doctors thought it could either be an infection or a plug of mucus, so they said to keep up the extra physio, took another cough swab, and started her on some Augmentin antibiotic tablets.
The next day wasn’t much better, she still had no energy and was hardly eating, and her cough was really disgusting. She was still struggling on 1st April, so I rang her physio who came out and had Seren blowing bubbles and did her a physio session with huffing and vibrations, which shifted some gunk, and afterwards her chest sounded clearer. I tried her on walking to school to drop Dylan off and pick him up again and it tired her out and gave her coughing fits, but she managed it okay. The following day, there was a definite improvement, so we let her go back to school and she started coughing up chunks of thick, dark yellow gunk, proof that there was actually an infection in her lungs, but that because her symptoms were improving, the Augmentin seemed to be working.
On 3rd April she had CF Clinic and she’d put on a little weight and grown slightly, although her BMI centiles didn’t improve. The consultant was happy for her to continue the two week course of Augmentin without resorting to IV antibiotics. Phew!
On 24th, after a hula hooping PE session the day before, Seren was complaining of joint pain again and is still sore today, so I think this is going to become a problem for her now, as she’s so active and is getting more adventurous with what she’s doing and is triggering joint pain. She doesn’t like to have to tone down what she wants to do though, so it’s going to be tough finding the right balance of activity without causing pain.
Thank you to Michelle Kendel, Jill, S, Rachel Wheeler, Nicky W, Lisa, Julie Barrett, Kim Ginger, Post Pals, Helen Brierley for the cards. Thank you to Julie for the postcard. Thank you to Debbie Gray for the card you sent for all of us. Thank you to Helen T for the letter and thank you to Tor for the note. Thank you to SOLAK for the beautiful cushion. Thank you to Michelle Kendel for the paper doll set. Thank you to Sarah for the Narnia postcards. Thank you to Helen T for the ‘Things to Make and Do’ tin! Thank you to Post Pals for the cuddly teddy. Thank you to Post Pals for the balloon modelling kit! Thank you to Kim Ginger for the finger puppet and High School Musical wall planner. Thank you to Helen Brierley for the Disney books and rabbit mask kit. Thank you to Julie B for the decorating eggs kit. Thank you to Post Pals for the puppet kit. Thank you to Tor for the fuse bead kit! Thank you to Post Pals for the Beatrix Potter notecards and envelopes. Thank you to Debbie Gray for our DVDs and Seren’s make your own hairband kit. Thank you to Post Pals for the growing eggs.
Update 15th February 2009
Seren’s had a reasonably good time of things lately with her health, except for the past couple of weeks. On 26th January Seren up came down with a cold that hit her full force and she was very grizzly, so she ended up having the next two days off school while she went through the worst of it, but was back at school by the 29th.
On 6th February, Seren and Dylan had CF Clinic, and she got on very well. Her sats were 98%, her lung function was over 100%, she’d grown 2cms and she’d put on 1/2 a kg. But because of her height gain, it dropped her BMI centile back down to the 20th centile, so she’s still got some hard work to do to get her weight up. Thanks to the Omeprazole tablets though, she’s eating like a horse, the most she’s ever eaten, so hopefully she’ll put some more weight on soon.
We’d like to say thank you to Post Pals for the Blitzen and Rudolph cards, Seren especially loved them! Thank you to Helen Brierley, Sue & Ethan B, Jessica, Helen Brierley, Julie B, Kate Dee, Helen Bale, June Junko, Vikki, Helen T, Anne Gairn and Maria & Michael for the cards. And thank you to whoever sent the anonymous Valentines card. Thank you to Kim Ginger for the postcard. Thank you to Michelle Kendal and Vickie M, and Jess the cat for the letters.
Thank you to Helen T for the Pixel Chicks babysitter, shrinkies, glitter pens, piggy bank painting kit, dancing polly pocket, finger print drawing kit, and for the Disney Princess DVD. Thank you to Claire McCartney for the Winter Minnie Mouse, hair bobbles, clips, lip gloss and eyeshadow. Thank you to Anne Gamble for the notepaper and envelopes, card making kit, notebook and card making equipment. Thank you to Abbey and Alison for the Bratz doll and perfume, High School Musical handbag, knitted teddy and fairy activity set. Thank you to June Junko for the cat calendar. Thank you to Hilary & Muffin for the High School Musical t-shirt. There were a few other Christmas presents which Adrian opened with Seren and he wasn’t sure who they were from, but thank you to whoever sent Seren the fairy sticker book, the sand art, the pendant, the Santa 3 drawer gift set, the paper flower funpack, Bratz stickers, lip gloss and the Disney Princess cup. Thank you to Julie B for the Power Palz rabbit game and toy, and for the stickers. Thank you to Helen Brierley for the underwater sculpting sand. Thank you to Helen Bale for the cuddly horse. Thank you to Vikki for the cat necklace. Thank you to Anne Gairn for the photo, pencils with toppers, pencils, ruler rubber and sharpener set and notebook. Thank you to Kate Dee for the cuddly Minnie Mouse and the camera. Thank you to Jess the cat for the Narnia book and activity book and rabbit keyring. Thank you to Julie B for the colour art kit. Thank you to Kim Ginger for the pencil, lip whistle, notepad, rubbers, bracelet, sticker and sweets.
Update 19th December 2008
From 17th to 19th November Seren was off school with a cold. She lost her appetite and was quite tired, but she was back to school on the 20th. On 1st December, Seren was off school again because of a bad day with her asthma on the Sunday. But she was doing better by the afternoon, so I let her go to Rainbows, which she enjoyed.
On 5th December Seren had CF Clinic. She hasn’t grown in at least 6 months and is still 120 cms (well, technically, she measured at 19.7 cms and she was 20.7 kgs which is 1 kg heavier than when she started her IVs in September, but she’s still very thin and on the 26th centile for her BMI). Her lung function was 105%, and her SATS were 100%. The doctor was very pleased with Seren, her chest was clear, her bowels and liver felt fine, and she is doing well at school. She has been complaining of occasional nausea and stomach pain, so I raised the question that she might have a slight problem with acid reflux. It’s something that is common in CFers, and something Dylan is still being treated for since 3 months old. Seren had very bad reflux as a baby, but then grew out of it, but lately has been complaining of random stomach-aches and nausea, so the Dr thought that it would be best to start her on Omeprazole. Hopefully, not only will the Omeprazole work on her stomach-ache and nausea, it should help her Creon tablets to work more effectively and help her to gain some more weight.
On 7th December we had a fabulous day in London, thanks to Post Pals giving us tickets to see Santa at Harrods! We went to the Natural History Museum first and then to Harrods and then on to see the Christmas lights on Oxford Street before getting the train home again. It was a fabulous day!
On 15th December, I had a chat to Seren’s teacher, as she’s been getting a bit stressed and upset about school and didn’t seem as if she was settling into her new school as well as we’d thought. Her teacher explained that the most part of the problem is Seren seems under-confident, and self-conscious about her CF and the effects it’s having on her. It meant that she went into her new school on IVs in September, it means that she’s missed some school, it means that she’s underweight, and it means that her stomach is bloated from her digestive problems, so she doesn’t like that her stomach sticks out in her clothes. Her teacher said that it’s more about Seren becoming more comfortable with herself and more confident in her friend-making abilities, than it is other people around her not accepting her or liking her. So we’ve got to work on her confidence.
Since then, Seren has been off school with a cold and looks very pale and washed out, but I’m hopeful that she’ll be well enough to continue with the Christmas festivities. Autumn has been an awful season for her, health-wise, and she’s never missed so much schooling before, so I’m hopeful that the rest of winter and next spring will be better for her.
Thank you to Jessica B, Jenn, Maria & Michael, Despina, Diane, Helen T, Martin, Jackie & Jamie, Julie B, June Junko, Sarah Gilligan and Post Pals for the cards. Thank you to Karen (Sami) and Jenn for the postcards. Thank you to Post Pals for the cards from the reindeer. Thank you to Julie B for the ‘decorate a Christmas tree’ pack. Thank you to Post Pals for the Polly Pocket Race to the Mall game and the stocking kit! Thank you to June Junko, Anna Gamble, Post Pals, Helen T and Claire McCartney for the wrapped Christmas presents. They are currently sitting under our tree waiting to be opened on Christmas Day!
Update 16th November 2008
Seren had CF Clinic on 4th October and she’d put on 300 grams (taking her up to about the 17th centile) and her lung function had gone up a bit more to 96.1%. Her consultant was concerned to hear how difficult the past month had been for her and how badly she’d coped with it all. He said that some time needs to be spent on helping her to come to terms with it all, and in reassuring her that her health is much better again now. Of course, we have been doing that to the best of our ability, but he didn’t say whether he wanted to get the psychologist involved. He also said that if her residual cough doesn’t clear up, or the bug comes back, then she might need a preventative nebulised treatment, but he said that she might not need IVs again for a good few years, which is what we’re really hoping. Then we saw the dietician and he put her on Maxijul to help her weight gain. She doesn’t mind having that in drinks, soups, spaghetti etc, so fingers crossed it’ll help.
On 10th October Seren seemed very breathless on the way home and again once we got home. She kept stopping in the middle of sentences to suck in another huge breath and even when she was just playing her DS or watching tv, she was still really over breathing. I gave her 5 puffs of Ventolin which helped her breathing and seemed to enable her to cough up some gunk, but she really worried me because the gunk was YELLOW! That’s a first for either of our kids. I rang the CF Nurse for advice and she arranged a hospital review for Seren for the next day.
We were very chuffed to see that Seren’s lung function was up again to 101% and her oxygen levels were 98%! The consultant examined her and her chest was clear, so he said that he thought that the breathlessness (which she’s never really shifted since the IVs finished) was possibly due to her asthma, and that as her lung function is up and her chest is clear, maybe the yellow mucus was just a plug Seren needed to shift. They did another cough swab, just in case, but he thought it was more asthma-related. So she had 5 puffs of Ventolin 4 times a day for 4 days and he gave her a prescription for steroids for three days to use if her breathlessness got worse.
On 17th October, Seren and I travelled to Wales to spend some time with my parents, because my Dad’s end of chemo scan showed up a new tumour in his abdomen, so we went to stay with them before he started his new chemo regime. Seren’s asthma was bad while we were there and I had to give her very regular inhalers. I was also wishing I’d thought to bring the steroids with me!
On 24th October, she came out with a temperature and a sore throat, so I delayed starting the steroids in case the throat infection was causing her asthma symptoms. Thankfully she was much better by the 26th.
On 3rd November, Seren was coughing a lot and said that she felt that she had something in her lungs that she couldn’t shift, so when we got home I gave her some Ventolin which seemed to help. She looked very pale though, with dark shadows under her eyes, and was complaining of feeling very tired. Her cough was quite chesty and she was starting to get afraid to cough as well, like she was with her bad infection in September, so she was starting to freak me out a bit. I wondered if it could be asthma-related, or to do with her flu jab she had last Monday, but I still rang the CF nurse that night and requested a cough swab.
On 9th November, Seren’s cough was really nasty again. I phoned for her swab results and it was clear of bacteria. On 11th November, I started Seren on the steroids, and she found them a bit difficult to swallow, but they made a HUGE difference to her chest! It’s been the best it’s been since she started getting unwell in August!
Seren also had a good report from her teacher at parents evening that night, saying that she is ahead of target in reading, and on target in writing and maths! Since she moved schools in September, the improvement in her abilities has been incredible!
Thank you to Kim, Julie Barrett, June Junko, Cathe Garnett, Margaret Nagy, Marge, Jenn, Linda B, Maria Carney, Diane, Milly P, Briannah Bolton, Kate Dee, Helen Brierley and Karen (Sami) for the cards! Thank you to Julie Barrett for the letter, the pencil, and the witch model. Thank you to Cathe Garnett for the cat picture. Thank you to Marge for the ‘Bless You’ token. Thank you to Jenn, Julie Barrett, Maria Carney for the postcards. Thank you to Diane for the stickers. Thank you to Milly P for the Webkinz cat. Thank you to Helen Brierley for the beads, and the story books and tapes! Thank you to Karen (Sami) for the bat whistle, pumpkin whistle, skull straw, rubber, pencil, pumpkin lolly, skeleton, and spider. Thank you to Heather Bergman for the letters and two packs of stickers! Thank you to Francesca for the stickers, pencils, pencil toppers, crayons and lion.
Update 27th September 2008
Apologies for the late update, but Seren has had the worst month of her life to date. She enjoyed August very much, but she started to develop a cough, so we increased her inhalers, thinking it was asthma-related.
Then from 16th to 23rd August we went to West Wales for a holiday paid for by the CF Holiday Fund. While we were there Seren’s cough worsened and inhalers didn’t really seem to be helping, but she seemed well enough in herself, so we weren’t overly concerned.
When we got back, Seren’s cough wasn’t improving, so I arranged for her to have a cough swab, which came back clear. On 29th August she had a really bad day with her cough and even though the swab came back clear, I was very concerned about her chest, as she just couldn’t stop coughing and was getting very distressed, and she had some chest recession. I gave her repeated doses of inhalers, but it didn’t help at all. So we took her to the hospital. The first Doctor said that she had mild tonsillitis, but that wouldn’t have caused her ‘nasty chesty cough’ and so he wanted her to have an x-ray. By the time she’d had the x-ray, the Doctors had changed shifts and an incompetent Doctor said her x-ray was fine, her throat was fine with NO tonsillitis, and she could have some Augmentin antibiotics and go home. As we walked down the corridor from children’s ward on our way out, Seren almost choked on her own mucus during a very bad coughing fit.
On 2nd September it was Dylan’s birthday and Seren was very poorly again that day and it was clear that the Augmentin wasn’t making any difference at all. Dylan’s main present was a bouncy castle and she couldn’t even play on it with him. Each time she tried, she’d get awful coughing fits and have to come back off exhausted. That afternoon Seren was very unwell again at Dylan’s birthday party, she couldn’t even play at the soft play zone, and she had to sit most of it out next to me, coughing and coughing and coughing. Her CF Nurse had seen her at a care plan meeting that morning at their new school and been concerned that Seren looked very pale and thin and had a nasty cough.
The next day was her first day at her new school and she INSISTED on going, so I dropped her off in the morning. I then rang the CF Nurse and told her how awful she’d been the day before and the CF Nurse said we should go into hospital for 12.30 pm for a review and she thought there was a 90% chance that Seren would need her first course of intravenous antibiotics.
At the review her weight had gone down yet again to just 19.6 kgs (which is lighter than she was a year ago!) putting her BMI on the 7th centile. Her lung function results had dropped from 109.2% to 74.9%. So her consultant put her on her first course of IV antibiotics, Gentamicin and Ceftazidime, and ordered another cough swab. This was Wednesday 3rd September. She had her first long line put in that afternoon (from her left wrist to her shoulder) and found it incredibly traumatic, due to her needle phobia. This line lasted until Thursday evening and then they saw a red line tracking all the way up her arm, indicating that the line was infected, so it had to be removed after her evening dose of IVs.
Friday 5th September, Seren had her second long line fitted (from her right elbow to her heart) and that lasted 25 hours before it clotted badly. So they had to remove it on Saturday morning and fitted a cannula in her left hand. By Sunday morning, her cannula was getting painful, and her cough swab came back showing a heavy growth of Moraxella Catarrhalis. The first bug she’s grown in four years and it was hitting her hard.
On Monday morning, she had the cannula taken out, because she was finding even just flushes (let alone strong antibiotics) through her line so painful that she was screaming, jumping, throwing things and kicking out. Monday afternoon, they fitted her 3rd long line, from her left elbow to her shoulder. This line lasted until Day 13 of the IVs, the 16th September, when it started leaking. It was leaking very near the point where it entered her arm, so she had to have it removed again.
Her health was reviewed again, and it was found that her lung function had gone up again to 93.7%, and her oxygen saturations had climbed from their lowest at 93% to 98%, and she’d put on 1/2 a kg, taking her up to 20.1 kgs. So it was decided that she could stop the IVs and move onto Ciprofloxacin oral antibiotics. She was over the moon, as she found the IVs to be the most difficult thing she had ever experienced, and she didn’t cope very well at all, so it was a horrible two weeks for all of us.
She is still on the oral Ciprofloxacin until 30th September and she does still have a wet cough, but cough swabs taken on 16th and 22nd September have both come back clear, which is a good sign that she has hopefully cleared this bug. She’ll have another swab done when she finishes the oral antibiotics and fingers crossed that will be clear as well.
Thank you to Julie B, Bronte Hughes, Nicky W, Sheila, Helen Brierley, Helen T, William M and family, Jenny Bridger, Clair Fraser, Kate Dee, Shannon & Liam, Post Pals, Linda B, Claire and Jane for the cards! Thank you to Helen Brierley for the Hunchback of Notre Dame talking book, bracelet and dangly fish! Thank you to Helen Turner for the two fairy books, the multi-coloured pen and the fabulous get well soon balloon bouquet! Thank you to William M and family for the cuddly polar bear. Thank you to Jenny Bridger for the Kinder egg, egg cup painting kit, bookmark, nail art kit, flapjack kit and badge! Thank you to Clair Fraser for the Bratz stamper set, the Bratz secrets book and gel pen, the Bratz Cloe doll and perfume, the Bratz Jade doll and perfume, and the four Bratz activity books! She opened your parcel and Jenny Bridger’s parcel on the same day and afterwards, even though she was so poorly, she said “I’m the luckiest girl in the school!” so a HUGE THANK YOU to both of you.
Thank you to Kate Dee for the beautiful Hello Kitty balloon bouquet! Thank you to Shannon & Liam for the lovely drawings. Thank you to Jenn for the notecards. Thank you to Vickie M for the letter and stickers. Thank you to Becky Butler for the note and stickers. Thank you to an anonymous person for the two glow sticks, Seren loved them! Thank you to Estelle Jackson and family for the hair slides and nail varnish. Thank you to Karen (Sami) for the bracelet, lion puppet and Pooh bear toy. I’d also like to thank Clair Fraser for the card for us and Estelle Jackson for the face mask and nail varnish for myself. Much appreciated!!
I am so very grateful to Post Pals! My daughter has been going through a very rough time, but Post Pals brings so many smiles to her face. You cheer her up when nothing else can! Thank you.
Update 7th August 2008
Seren has had an up and down month, somewhat unbeknownst to her. She had her CF Annual Review on the 8th of July, which she was very brave for. Apart from a full bowel, he was very pleased with her. Her chest was clear, she hasn’t grown a bug in over four years, her asthma seems well controlled at the moment, and she’s growing well. She’s lost a bit of weight, she’s down to exactly 20 kgs, but hopefully we can build that up again.
The 11th of July was Seren’s sixth birthday and she really enjoyed her day, and she had soooo many cards!!!
On the 31st of July, we had Seren’s annual review results back, and they weren’t as positive as we’d hoped. The doctor dropped a bombshell – her x-ray result showed bronchial wall thickening at the bases of her lungs, which was termed ‘the earliest sign of CF’.
It has been explained to me that a person’s chest is like an upside down tree. There’s the windpipe, which then splits into two tubes, which then split into hundreds and thousands of little tubes, which cover the person’s lungs. In Seren’s lungs, the tubes at the very bottom of her lungs have started to thicken, so they are not as flexible as they should be, and won’t work as they should. I asked if this was anything we could have prevented, or if Seren now needs extra physiotherapy, extra inhalers, extra antibiotics, nebulisers, or anything. But no, Seren’s problem isn’t caused by mucus in her lungs, her lungs were actually completely clear of mucus. The changes are irreversible, and there is nothing we can do to stop it progressing.
The physiotherapist said it’s nothing to do with how well or not she’s been, this is the normal progression of the CF disease in her body, and that she’s done well to get to six years old before showing any signs of it. We had always assumed that as Seren had always stayed so well chest-wise, that she was managing to escape the effects of CF in her lungs, but obviously not. Although we’ve always been open and honest with Seren about her CF and why she needs her treatments, this is one thing we’re going to be keeping from her for a long time to come.
Thank you to Julie B for the cards and for the Polly Pocket car and the ‘Create a Sticker’. Thank you to Jenn for the postcard, and cards, note and Buttons cake mix. Thank you to Kate Dee, Jennifer C AKA Queen Lucy, St Matthews Sunday School, Michael & Maria Carney, Linda B, Jenny Orpwood, Hilary and Muffin, Erin F‚Äôs grandparents, Helen Brierley, Amanda, Rachel Cridge, June Junko, Isobel, Tracy, Gerry & Emily, Karen (Sami), Post Pals, Hayley Thorn, Jennifer and Grace & Linds for the cards. Thank you to Kate Dee for the painting by numbers, the cuddly elephant, the candy glosses, and the stickers. Thank you to Hilary and Muffin for the presents. Thank you to Erin F’s grandparents for the WHSmiths voucher. Thank you to Helen Brierley for the magic money box. Thank you to Amanda for the charm. Thank you to Rachel Cridge for the stickers. Thank you to June Junko for the dolls picture. Thank you to Karen (Sami) for the pencil, foam stickers, Coke stickers and Pooh stickers. Thank you to Sarah, Hope, Ellie and William for the card and stickers. Thank you to Grace and Linds for the mermaid bookmark. Thank you to Claire for the letter.
Update 7th July 2008
Seren has had a good month, and has been out and about and enjoying herself! She’s got some very fun things coming up in the next month too, but she’s not looking forward to her Annual CF Review at the hospital on 8th July, because it involves blood tests and she hates needles. It’s basically a total MOT of her entire body, so it takes a long time. Luckily Nanny is coming with us to keep the kids entertained while I’m talking to the doctors, nurses, physio and dietician.
Then the fun starts, as it’s her birthday on the 11th July, and we’ve got lots of fun things planned!
Thank you to Karen (Sami), Jenn, Post Pals, Kate W, Diane, Fiona, Hayley Thorn, for the cards. Thank you to Despina for the postcard. Thank you to Jennifer C for the Queen Lucy letter! Thank you to Hilary & Muffin for the letter and the stickers. Thank you to Vanessa Lomas for the letter and for the laminated poster, the nail art stickers and the Disney stickers.
Update 9th June 2008
Seren has had a good month! On 7th June it was CF Clinic and Seren got on well. She’s now 117.6 cm tall and weighs 20.4 kgs, which means her height is on the 75th centile and her weight is on the 50th centile. Those measurements mean her BMI is on the 36th centile. Ideally, her BMI should be above the 50th centile, so we need to get some more weight on her. She had her lung function done, and her FVC was 98.5 % and her FEV 1 was 91.9% which is great. Her oxygen levels were fine too.
She was seen by the consultant and he was very pleased to hear that she is very compliant for her physio and her medications now and her behaviour has generally improved. When he examined her stomach, he could feel that her bowel was very full again (they found this in February) and he actually showed me how to feel for this myself on her, which was weird. He said that if she didn’t open her bowels over the next couple of days, that we should give her a week of Lactulose to clear her out a bit. She didn’t go that night, or during the day on Saturday, and I felt her stomach again that night and could still feel it all in there, so we gave her some Lactulose Saturday night. Thankfully, she’s been to the loo today!
He also asked how she’s getting on at school and we had to say that she’s a little bit behind some of her peers and that she is taking part in the extra reading group and was doing an extra literacy course. I also said that they were keeping an eye on her about possible symptoms of dyslexia. He wanted to know exactly what they were doing to help and seemed satisfied by my responses.
The dietician was a bit disappointed to hear that Seren hasn’t done too well with her task he set her of eating breakfast every morning and drinking milk every morning. I did say that she is drinking a lot more milk than she was, and he was pleased about that, but he did want her to try hard to eat breakfast every day. I said that most of the time she just picks at bits and pieces during the day, and then stuffs herself in the evening. So he said to just go with the flow and try and feed her up at night, to get her weight gain up, and to just do our best during the day. It’s so weird, you can’t get food into her with a crowbar until she gets home from school at about 3.30 pm and then she just won’t stop eating!
Thank you to Kim Ginger for the card and for the ‘Werepuppy on Holiday’ book. Thanks to Jenn, Fiona, Kate Dee, Helen T, Karen and Isobel for the cards! Thank you to Kate Dee for the horse postcard, the handwriting book, the magic painting book and the Lazytown colouring book. Thank you very much to Jennifer C for the letter from Queen Lucy of Narnia! Thank you to Anne Gairn for the Kitty in my Pockets and secret diary kit! Thank you to Post Pals for the two parcels full of little bits and bobs! Thank you to Helen T for the two packs of Cutie Cubes!
Update 7th May 2008
Seren’s had quite a good month, health wise. The 21st April was Seren’s Parents Evening at school and a few concerns were raised. She is still struggling with her literacy. Verbally, she’s very advanced for her age and very imaginative, but she struggles with writing her letters the right way round and reading and spelling. She’s still young yet, but she’s behind a lot of her peers.
She is in an extra reading group at school to boost her confidence and she’s just started an ELC to boost her literacy skills every day, but her teacher has recommended that if she is still struggling by September, then she should start the ball rolling for getting tested for dyslexia, as she has a lot of symptoms of it.
She’s now just getting over a heavy cold, but it didn’t set her asthma off too much and she’s coped well with it.
Thank you to Helen F, Fiona, Jenn, Helen T and Kate Dee for the cards. Thank you to Rachel and Poppy the Snail for the note card. Thank you to Rachel Cridge, Seren loved the pictures of Mickey and Minnie. Thank you to Jenn for the postcard. Thank you to Helen F for the stickers. Thank you to Rachel Cridge for the stickers. Thank you to Helen T for the sticker book. Thank you to Kate Dee for the parcel. Thank you to Kate for the pink jewelled clip!
Update 12th April 2008
Seren has had a pretty good month! On 10th March we went to see the CF Specialist from Cambridge at Norwich. She hadn’t grown or put on much weight recently, and she’s down to the 30th centile on the BMI growth charts (the goal is 50th centile or over) so we need to feed her up a bit at the moment. Her SATS (oxygen levels in her blood) were fine though, and her lung function was her highest ever, at 99%!
She generally had a good report, except that he said that if the Seretide and Ventolin become insufficient to treat her asthma problems, then we can start her on Singulair (Montelukast) like Dylan. Also, he said that her nose is still very inflamed and she doesn’t have good air entry into her right nostril, so she has to start the Nasonex/Flixonase spray again which she’s not too happy about, but as we told her, it should help her to breathe more easily. It worked last time, but I think this time she’ll need to be on it much longer.
On Easter Sunday, she had quite a bad asthma attack and had a nasty cough for the rest of the day, but we kept up the inhalers all day, and so by Easter Monday her cough had cleared up.
Seren has got a trip to the dentist on Thursday, but there aren’t any scheduled hospital appointments coming up this month, so fingers crossed it’ll be quite a quiet month!
Thank you to Karen (Sami), Kate Dee, the girls at Georgie’s Fund, Kate Ware, Anne Gairn, Julie B, Jenn, Erin F’s grandparents, Michael & Maria, Julie, Martin, Jackie & Jamie, Post Pals team, Eloise, Chloe G and Fiona for the cards! Thank you to Vickie for the inflatable postcard with the sparkles, Seren loved it! Thank you for the Easter card from Israel, I’m sorry I couldn’t read the signature to say thank you properly. Thank you to Sarah for the note card. Thank you to Anne Gairn and Kate Dee for the postcards. Thank you very much to Anne Gairn for the Littlest Pet Shop rabbit. Thank you to Karen (Sami) for the notepad, badge and ball. Thank you to the girls at Georgie’s Fund for the Make Your Own Sequin Art and the Tinkerbelle cards! Thank you to Anne Gairn for the Polly Pocket Kerstie doll and accessories! Thank you to Julie B for the glitter stencil kit. Thank you to Julie for the play jewellery! Thank you to Kate Dee for the lovely poodle and bracelet! Thank you to Clare Bray for the beanie cat, Seren adored him! And thank you to Anne Gairn for the stickers and the Ella doll.
Update 5th March 2008
Seren has had quite a good month. She has needed extra inhalers now and then when her asthma’s played up, but she has been good for her twice daily chest physiotherapy and in taking all her tablets lately too. I’m sure Post Pals has helped her here! Her appetite has been mostly good, but I don’t know if she has put any weight on since her last clinic in January. She’s going with her brother Dylan to see the CF Specialist at Norwich on Monday, so hopefully we’ll know more then.
She’s very worried about her grandfather though, who we call Bampie. It’s my Dad, and he was diagnosed with a spinal cord lymphoma on 28th February. We only lost my grandfather to brain cancer last June, and so she’s very worried about my Dad. She isn’t sleeping properly and is quite unsettled, especially as I travelled to Wales last weekend to be with him and I’ll be going again this weekend, so she’s having a hard time with missing me as well. We’re hoping to all go visit him during the Easter holidays, but if he does have the chance of chemotherapy, I’m concerned about how Seren will cope with seeing her Bampie lose his hair.
Thank you to Kate Dee, Jenn, Post Pals, Maria Carney, Anne Gairn, Susanna for the cards, and to whoever sent the two anonymous Valentines cards! Thank you to Sarah for the postcard. Thank you to Jade for the letter. Thank you to Anne Gairn for the Design a Mirror, Design a Picture Frame and the Polly Pocket and car; and for the painting by numbers pack and Disney Princess sticker book and stickers! Thank you to Kate Dee for the Bratz pens and crayon by numbers. Thank you to Jade for the doll and the crown hairclips!
Update 30th January 2008
Seren hasn’t had too bad a month. She has had a few problems with her asthma, but apart from that she’s been pretty good. She’s been doing well in school as well! Her dietician is very concerned about her diet though, as her zinc intake is down to 40% of what it should be, her iron is down to 60% and her calcium 80%, so we are trying hard to boost her intake of these foods. It’s tough though, as she’s an incredibly picky eater, and just doesn’t like many foods that contain these nutrients, so if she’s still low on these in another couple of months, we’ll have to start her on supplements for them.
She has CF Clinic on Friday 1st Feb, and I want to bring up her recent hearing problems. She has been saying for the past few months that the tv needs turning up and up, and she finds it difficult to talk quietly lately too, she always seems to be shouting. CFers can be prone to glue ear, and I had it myself as a child (I don’t have CF myself, I’m just a carrier, as is Adrian) and I had similar symptoms, so I want to get her ears checked.
Thank you to Denise Workman, Kate Dee, and Julie Barrett for the cards! Thank you to Julie Barrett for the book! Thank you to Holly Hall for the letter and photo. Thank you to Anne Gairn for the two letters, the fluffy star pen and the bead jewellery set.
Update 5th January 2008
Seren very much enjoyed the run up to Christmas, as she REALLY loved getting all the cards and parcels from the lovely people who sent them through Post Pals, they made her feel really special, and she really loved getting the letters from the Reindeers.
On the 23rd, she came out in chickenpox, and was very poorly with it. Her temperature kept shooting up as high as 40.3 C and she was horribly itchy, and calamine lotion and anti-histamines didn’t really seem to help. Her torso was plastered in spots and they all grouped together and they were really sore as well as itchy. So she was really miserable on Christmas Day and Boxing Day, and she was so pale, she looked like a ghost, but opening her presents made her smile a bit. She’s now feeling much better, and her scabbed spots are starting to go.
She looks quite thin though, so we’re trying to feed her up a bit, but her appetite isn’t too great at the moment.
Her asthma has been well controlled over Christmas, but the test will be going back to school and starting PE lessons again. She will be seeing the CF Specialist at Norwich on the 14th January, so we’ll have more info then.
Thank you to Kate W, Despina, Helen T, Post Pals team, Julie, Sue and Alan Barrett, Becki, Laura H, Wend, Jenn, Jon Paul, and Martin, Jackie & Jamie for the Christmas cards they sent. Seren loved opening them! Thank you to the Post Pals team who sent the letters from the Reindeers, Seren LOVED having them read to her, and looked forward to getting them. Thank you to Emma Hoole for the letter and reindeer food. Huge thank you’s to Kate W, Helen T, Wend and an anonymous elf for being Seren’s elves. Also thank you’s to Julie Barrett, Louise Woodcock, Chloe G, and Emma Hoole for the Christmas presents they sent, Seren loved them all. She was poorly on Christmas Day and opening her presents was the only thing that could make her smile.
Update 8th December 2007
Seren had CF Clinic yesterday and her consultant changed her inhaler from 4 puffs of Becotide 50 twice a day, to 2 puffs of Seretide 50 twice a day, as he said having to take 4 puffs twice a day long term would get on her nerves and so his choices were to give her the 100 strength of Becotide or switch her to the stronger Seretide. He chose the Seretide, as apparently Becotide is being phased out in the near future.
When he examined her stomach, he found that her bowel is very full of faeces, which is the first time anyone has ever said that after examining her. If left, it could cause a blockage in her bowel (called Meconium Ileus Equivalent I think) so he has prescribed her 10 mls of Lactulose once a day for a while to clear her out. CFers can have problems with their bowels at times, due to the lack of lubrication in the bowel, making it easy for the bowel to block, but hopefully the Lactulose will draw more fluid into the bowel and clear her out.
The dieticians are also concerned about her nutrition, as she’s never been the world’s best eater, and lately her diet has really gone downhill. She hasn’t had any form of dairy produce in six months now and that really worries me, as people with CF are very prone to osteoporosis, and start having bone density scans at aged 10-12, so calcium is very important to them.
She is also low on iron, so we have been told to give her a substance called ‘Spatone’ to boost her iron intake and we have to complete a food diary to show exactly how little calcium she is having, so that they can prescribe her an adequate supplement of calcium.
She also hasn’t grown or put on any weight, in fact, she’s lost a bit of weight, so we need to try and feed her up over the Christmas period. Her asthma hasn’t been quite as bad lately as it had been, but exercise is still a problem trigger for her. She had sports club after school on Thursday and she needed quite a lot of Ventolin after it. It’s still better than it was though.
Last week, the Fantasy Charity Fund and the Family Fund paid for all of us to go to Disneyland Paris for 3 days, and it was an amazing experience! She has been exhausted since we got back though, as there was an awful lot of traveling and walking involved in the trip, and she’s still recovering!
Thank you SO much to the fabulous Elf Kate W, and to Helen Turner, both of whom sent Seren some very exciting-looking packages! They are currently waiting under the tree for her and she can’t wait to open them on Christmas Day!
