Our Pal - Bethany H

Story written 2014

Bethany first became seriously ill at the age of 15 months when she suffered from a ruptured intestine which was unnoticed and led to peritonitis. Following surgery to rectify this at Great Ormond Street, Bethany became one of the youngest patients to have her appendix removed at only 17 months.

In the months after Bethany’s operations she continued to suffer excruciating pain and suffer from severe distension of her stomach. Initially this was an allergy to milk, but due to the way Bethany’s combination of conditions attack the body it became apparent that milk allergy was only the beginning. In January 2011 Bethany’s doctors decided to feed her via a feeding tube for six weeks in order to allow her body to rest and then try to reintroduce food on a piecemeal basis. Unfortunately, three years later, that has still not been possible due to her suffering allergic reactions to any food that enters her stomach. Bethany’s body decided it didn’t like the feeding tube or button devices inserted and in two and a half years she went through several buttons and two gastric pegs. Whilst investigating the cause of this it was discovered that Beth also has dysmotility, meaning her stomach doesn’t empty quickly enough and the easiest way for it to leave the body was through her peg site causing continuous infections. The decision was made to feed her via a jejunostomy, so now the feed bypasses her stomach directly into her bowel for 22 ½ hours a day.

After intensive testing and countless visits to specialists, Bethany was included into a research clinic at Great Ormond Street into Ehlers Danlos Type 3 and the connection with gastro disorders. As a result of the testing it was discovered that Beth actually has Type 6 Ehlers Danlos of which there has only been 60 reported cases of worldwide and of those 60 Bethany is the only one that Great Ormond Street are aware of who has the stomach problems as well.

Bethany is currently in hospital as she is now having to have TPN (fed IV).

Despite all of her health problems which leave her in pain and spending lots of time in hospital or confined to bed, Bethany will always manage a smile and a few select wise words to cheer you up when you are down. She is entirely selfless and is always looking for ways to help fundraise in order to try and make other people’s lives as comfortable and enjoyable as they can be.

Update 26th October 2022

Bethany still is struggling with all her issues. She now has a fabulous new consultant who listens to Beth slowly. She’s having more tests done as her IGE level is sky high but they don’t know why. They have changed her TPN recipe and is only on lipids once a week because of her liver as it’s suffering, she will be having a biopsy done to see how much damage has been done. She is still suffering with being sick specially when she over does things. This could be just doing her cooking lesson or her media studies then it leads to her staying in bed for a couple days. No matter what she does she suffers her body just doesn’t like her doing things. 

Since lockdown has been lifted she has had so many appointments. She’s now changed to adult services and her new gastro doctor wants to see her every month as she has so much going on.

Beth should finish her media studies by Christmas which then she can start her photography course.

Update 7th May 2021

Finally got round to writing an update to you wonderful people. We have kept reasonably quiet during the last few months as there has been a lot of things going on as there are in any household, but I will try and outline Beth’s 2021 so far.Sorry it is a bit long winded.

The new year started with a bang. Absolutely typical that the first new year in 4 years that Beth has not been in hospital on the big night, and we were shielding and unable to do anything.

In the first couple of weeks of January everything was going quite well until the 15th when Beth woke early in the morning (Rarer than unicorn wee) complaining of feeling sick and a bit cold. On taking her temperature we quickly lined up her IV paracetamol in an attempt to lower it as it was 39°+ (which is a prime indicator for sepsis) and crossed our fingers. When it had only dropped by 0.5°C we contacted our local hospital and started her sepsis protocol. As usual the staff at Basildon hospital were on the ball and had her IV medication drawn up ready and she was on strong antibiotics within minutes of arriving on the ward. Due to her history with sepsis,arrangements were made to transfer to London where a higher level of care could be given if necessary and eventually at 23.30 the ambulance arrived to transfer her. (Beth had been awake since 06.00 which for her is already a long day) by the time we arrived on the ward in London and were checked in and medication sorted it was now 04.00 and sleep was badly needed.

On admission to Basildon both Bethany and Dad were screened for the dreaded covid which we were sure would be negative as Beth was shielding. The results came back on the lunchtime saying that Bethany had tested positive for covid and the period of isolation trapped in a hospital room began. Due to Bethany’s long-term use of steroids they had to give her a high dose of hydrocortisone to prevent her body going into shock and blood tests showed that her vitamin D levels were low, so she had to have an injection. Thanks to these and a huge dose of luck Bethany remained completely asymptomatic of corona virus and appears to have escaped any of the long-term effects.

After 6 days of isolation, it was decided that Bethany was showing sufficient signs of improvement from the sepsis and as still displaying no symptoms of covid that she could be transferred back to Basildon to complete her treatment. Happy that we had avoided having to put Beth through the pain of having her central line pulled and a PICC line inserted into her arm one last inspection of the sight was requested. During this inspection it was noted that while the site itself was doing ok the cuff around her central line which helps keep it in place had come away from the body and the line would have to be pulled anyway.

The line was changed on the Friday after a week in hospital amid scenes reminiscent of monsters inc. (with all the PPE required due to covid) and another couple of nights in London were needed.

We were finally transferred back to Basildon and then discharged on the Sunday to continue the IV antibiotics at home.

Beth had her first dose of the vaccine in mid February but unfortunately, she reacted to it causing her pancreas to flare, meaning another three days in hospital. Whilst in hospital they carried out an MRI on her head to check to see any signs of what was causing her worsening tremors. They found something “unusual” on the scan described as a small “anomaly” that they had sent to UCLH to get their opinion, so there was a few weeks of nervous waiting and worrying, doing our best not to believe Dr Google and the doom merchants.

Fortunately for want of a better word they decided the growth was a benign hamartoma which could affect the site to the right eye. As Beth has not had any symptoms and she is so complex it has been decided to monitor it and so long as there is no alteration in size or shape, they will just continue to monitor her regularly. She is due another MRI next month and then a decision will be made on the follow up

Beth now 17 has got one of the toughest decisions of her life to make as there are two main schools of thought to end her three long years of steroid use. One is to reconnect her colon and hope that stops the bleeding and the other is to remove the colon. They both obviously come with pros and cons along with risks and a lengthy procedure and hospital stay regardless of what decision is made. It has been made clear to Bethany that despite her best efforts that due to issues arising with her pancreas every time we try, they are not going to try feeding her into the gut again so she will now be fed by Parental Nutrition into the vein for the rest of her life.

Bethany has also missed a year of college and her GCSE exams but still managed great scores in the teacher assessments that were done instead. Due to issues with arranging courses and covid she must now try and find a course and secure the funding so we can help this amazing young lady fulfil her potential to the absolute full.

Thank you very much for reading and we will not leave it so long next time, so the post does not have to be so long. We are hoping as restrictions ease to organise some fundraising activities and events, so please watch this space.

Update 20th August 2020

Bethany is struggling day by day with pain, also being very tired. Beth has had some appointments during covid (lockdown.) One was to change her Hickman line due to cysts being around and on it. so it was changed to a double lumin ,so her picc line could be removed, as she is now on IF medication . Being on IF medicines has helped her pancreas levels to the point of them being normal, which is fab, so hopefully not so many flare ups. Beth is still bleeding so was put on a higher dose of steroids, which has made a difference, so there has been talks about another medication, but this can cause issues with her pancreas. We do have a telephone meeting with her pancreas specialist to discuss her procedure and if she could try this medication, as steroids are now affecting her body. Beth is collecting her GCSE results today 20th August. She only did 2, Maths and English, but she has got all her food hygiene certificates and more to do with food, also her Makaton levels 1 & 2 .

Update 20th April 2020

Where do I start, this year has been horrible. In January Beth became very poorly with pancreatitis and ended up in hospital for 3 months. She had to celebrate her 16th birthday in GOSH. She has had to come home on a few IV medicines, as every time we put too much in her, it causes horrendous pain and being sick and it also makes her pancreas levels rise . Beth should have had a procedure on her pancreas, but with covid 19 it was cancelled due to no intensive care beds and they didn’t want to risk it, just in case she needed one.So this has been pushed back until August depending on covid. Beth is still bleeding so she’s still on steroids which makes it more high risk for her during this time. Whilst we’ve been on lockdown she’s been helping with baking and cooking. She also still does school work with her tutors through zoom. Only one she really misses is cooking, as she’s not allowed to leave house or have people in, but they are doing food hygiene level 3 over zoom, so this should be competed in a few weeks hopefully, then she will do a test.

Also during this flare Beth can not tolerate drinking water or having ice cubes it cause so much pain and sickness. This flare was the worst we have seen, had to have lots of corrections, but she just keeps smiling.

Update 1st October 2019

 Sorry for the delay in updating, it’s been a stressful few months. In July Beth ended up in her local hospital due to her pancreas flaring. This has happened about 15 times now but this time was bad, she gained 8kgs, very puffy, her bloods were all over the place. After a week in local she was transferred to ITU at GOSH, thankfully it was just for 24 hrs and then transferred to gastro ward. Having scans and correcting her bloods she stayed there for 2 weeks. We were then discharged to wait for a pancreas specialist, who we saw on 25th Sept. She has an issue with her pancreas which won’t cure her pancreas flares, but could help with the pain she still is getting, this is up to Beth to decide. Beth is also still bleeding and has been for well over a year. She had an op in May to do a mucus fistula so we could do recycling. We did start this, then she ended up with her pancreas flare (only new thing we had done) so that was stopped, plus it didn’t make any difference to her bleeding. She is still on steroids as every time we reduce the steroids she bleeds. She has a puffy face due to the steroids.

Beth is still suffering with pain in her ribs, back and bowel. We are waiting for a meeting with gastro and surgical for the next step.

Beth’s peg is infected and unable to move and not draining, as Beth chooses to drink water as on free drainage, but as not draining. She’s being sick, she’s had 2 lots of antibiotics and it’s still there so waiting for a date for them to go in and have a look to see what’s going on.

Beth is in her last year of seniors, so will be doing exams soon. At this moment in time Beth has tutors to the house for a couple of hours which she does struggle with. Beth is doing really well in Maths, English, but on the other hand not great, but we have been told not to push her as she has until she’s 25 to do exams. Beth still does cooking and she can get a BTEC for this. Beth is also starting makaton by Skype, she’s like a guinea pig for this, for if this works, then it will be offered to others this way. By the end of it she will be qualified.

On Wednesday night Beth went to Jack Petchey, where she received a medallion, as her local hospital teacher nominated her a while back.

Update 25th February 2019

Thank you to everyone who sent Beth Xmas cards/gifts – we had a lovely Christmas. January and February have been tough months. Beth started bleeding again, this is after a few months on steroids, then the pain is bad, so back on steroids again until we see her surgeon in March. Beth has also been sick, her tummy doesn’t want to drain into her gastric bag some days, it results in Beth being sick, this then tires her more. Beth had a fab birthday, she was spoilt, but worth it. Thank you to everyone for her cards/gifts. Beth does cooking/baking 3 times a month. Today was rock cakes. I must say they were delicious. I was trying to be good as on a healthy eating diet. Well not today, just had to try them 😀. On the 13th Feb one of our dogs passed away, we were lucky enough to have Cookie for the nearly 4 yrs after we rescued her from dogs trust, but it was like she had been in our family longer. We miss her so much. We still have Patch who is about three who we rescued just over 2 years ago, who is the craziest dog but well behaved. 

Update 12th September 2018

Hi all, it’s been a bit manic here. Health-wise for Beth we are still in same position as before. Beth is having her yearly tests MOT next week, plus also having her Hickman line changed, as she has a cyst by her line which will not go. We have tried dressings, oral antibiotics ,then IV antibiotics but still the bugger won’t go, it is more painful when her TPN is running. So this will be done on Tuesday. Beth is missing her brother because he’s on deployment with the army, but hopefully back in November.Her sister Rebecca is going into the Navy at the end of September to start her training.

Schooling is not going great, she has started doing cooking after school (it took years to find someone), she also has one teacher that comes to the house. It’s the start of GCSE’s and at the moment Beth will be doing Maths, English, Science, then cooking in Btec. Beth also wants to learn sign language, so again waiting on school to find someone, as the school have had so much funding for her and not spent it on her. But Beth being Beth just keeps smiling.

Update 17th October 2017

The results from Beth’s tests in November/December indicated that there is very slight movement in her bowel, so the decision was made to attempt a very small amount of feed in to her bowel, to offer some protection to her vital organs from the damage that her Parental Nutrition (feed into vein) can cause. Unfortunately, due to repeated infections caused by the fact that Beth’s skin colonises some harmful bacteria, that if it gets inside the bloodstream will cause a nasty infection, on one occasion leading to sepsis which was a very scary time. She has also had to have the line into heart changed twice. The trial has been delayed as there was a lot of things to ensure were in place, as Beth has had nothing except medicines into her bowel for over 3 years.
Following Beths “MOT” (these tests involve several scans and x-rays to check the condition of Beth’s bones and vital organs, it also involves several blood tests and colonoscopy/ endoscopy to view bowel from inside and take biopsies) it was decided to try the re-feeding, so Beth was admitted to Basildon to try the feed and due to prolonged low iron levels, she also needs to have a blood transfusion.
Beth now has another busy couple of weeks with hospitals as she undergoes the trial and transfusion this week, and then next week must have the final part of her “MOT” at Great Ormond Street, which involves having to lay still for an extended period with a mask on (which Beth hates with a passion) and breathe a special gas to ensure her lungs are working correctly.

Beth had the first part of her trial last night which involved her feed being pumped in at just 5ml/hr for three hours, this caused a slight increase in her pain and a massive amount of reflux, but being the brave girl she is, Beth is determined to carry on and get as much of the feed as possible into her to try and avoid having to take other medicines. We decided the best place to do this trial was at Basildon hospital, due to previous attempts causing very painful episodes of pancreatitis. Due to the amount of nutrition Bethany needs it will never be possible to completely stop the nutrients needing to go into the vein, but the hope is that the feed into the bowel will enable the time on PN to be reduced slightly.Hopefully things are starting to look up a little bit in what is a continuing battle with her body, and after several years of backward steps, her body may at last allow her to take a step forward.

Unfortunately the feeding trials that Bethany had last week did not end very well. We had to stop the trial due to the levels of pain Bethany was suffering, along with indications that her pancreas would have struggled and other symptoms.

Beth also had a lung scan which involves having to breathe in Krypton gas, gas which absolutely stinks and makes Beth feel really sick, in order to get a clear picture of how her lungs are developing.

She has one more long enduring day at Hospital coming up before we can hopefully get to enjoy a relaxing weekend away with some great friends, and an opportunity for Beth to interact with her friends and recharge ready for the next time they try to feed her. Beth is home schooled at the moment with a private teacher paid by the school, she does 3 hrs a week which she is managing . Beth still isn’t great, a lot of pain in bowel & tummy which we are struggling with.

Thank you to everyone that has sent post & gifts much appreciated xxxx

Update 25th January 2017

Bethany had tests on her bowel in November/December and we are waiting for results.
She has had a tough time lately with pain and fatigue, she still has tutors come to the house so she can still be educated, which is good as she can only manage an hour a day. Bethany is not behind in English or maths which is excellent, she is a quick learner. Over Christmas Beth was poorly with throat and chest infections and we ended up in A&E Christmas Eve because she had a temperature, so we had to be on the safe side because of her line. Thankfully it wasn’t to do with her line and she just needed antibiotics for the infections, other than that Beth has been the same: up and down.

Update 14th November 2016

We attended an appointment with a group of Beth’s specialists yesterday in order to discuss the next steps in Beth’s treatment. It was not the outcome we had hoped for as they are very nervous about taking the steps that are needed to make Beth’s life more comfortable.
Beth has been having terrible bouts of pain which are unexplained as her bloods are unusually within “normal” (whatever that is) limits. One thing that was found by chance is a level in her blood called carnitine which has been extremely low. This is not a part of the blood that is normally tested after the Guthrie test. This was tested after a recent clinic by chance due to the troubles experienced controlling her sugar levels. She is now on a supplement in order to increase the levels but this can take up to 3 months to start showing any effect.
At the moment of typing we are still searching for a Dr. that will see her with her pancreatic divisum, as whilst this is far from rare in adults it is virtually unheard of in children. We have been waiting 9 months now for this referral and still we are unable to find a Dr. on the NHS that we will see her.
As a result of this delay and the need to get Bethany in a position where she can start to return to school (she has been unable to attend since March) we are going to need to find a private consultant.
Before any decision is made on surgery for Bethany she needs to go into hospital for a weeks worth of tests, to see if there has been any sign of the intestine trying to recover from the failure it suffered over two years ago.Considering her colon has collapsed we are pretty sure there is no sign of recovery.
The tests involve her having a special catheter to measure the movement of her bowel either inserted through her PEG site (the hole near her belly button). If they’re unable to do this then it will have to be inserted into her nose and through her stomach into the intestine. Once she’s recovered from this she will have to have a tube (not the same one) inserted into her rectum in order to measure the large bowel and to see how bad the collapse and inflammation that showed up on her recent scopes is and whether the colon is adding benefit or causing more problems and needs to be removed.
On a positive note we have finally after lots of pushing by the school and specialist care team, managed to get a tutor to come in 3 times a week and tutor for maths and English Also one of the LSA’s from the school to come twice a week in order to assist Beth with the more practical side. Beth is loving being able to start learning again and is mega proud of the fact that she has a reading age almost a year above her physical age.
We have a date now for Beth to go into hospital, 30th November, she will be in for 10 days for these tests to be done. We have just had a few days at Little Havens Hospice chilling, which is nice. We are off to Disneyland Paris at the weekend thanks to Little Havens putting our name forward for this trip. Beth can’t wait. After that she will be in hospital, so it’s a much needed trip.
Follow Beth’s fund on Facebook for regular updates.

Update 20th September 2016

Hi all, Beth has been much the same as last month, up and down. She had scopes done during summer holidays, which have shown more problems, one of which is big; her large bowel has collapsed and is showing distal colitis. Beth has been put on more meds because of the colitis. She needs to be seen again by the motility team about the colon, but it does explain the pain she is getting in her back and bottom. We are still waiting to see a pancreas specialist, who is willing to see her as most only deal with adults. Bethany’s TPN calories have to be upped as she’s not gaining weight. Everything is tiring Beth out. If she does too much she becomes unwell, dizzy, feeling sick and drained. She is still unable to go school, but is getting a tutor, hopefully soon, she said earlier “I do more maths then English” lol. She hates English, as it’s a lot of writing/typing which she can’t do a lot of, as her hands get tired and painful. Maths she loves (don’t know where she gets that from). Beth is looking forward to meeting other families at the Chessington weekend.

Thank you so much Post Pals for organising this weekend and all the other bits you do for our children.

Update 19th August 2016

Beth is still up and down. She was in hospital a few weeks ago with another flare of pancreatitis, we are still waiting for the specialist appointment and it’s taking far too long. Beth has good days and bad days – more bad than good at the moment. She’s had a busy few days as her older brother passed out as a grenadier guard at Catterick, which was amazing. Then we stayed at a friends house for a few days. Now we’re back home she’s struggling as she’s overdone it. It’s not right a bit of fun can cause this, so unfair. We are at hospital next week for scans & scopes – more issues. We are hoping the scope doesn’t cause another pancreatic flare. We are not sure about Beth going back to school in Sept. We have to have a meeting, as before when we tried upping her school time, she became unwell and very tired. Sometimes she’d be there for 20 mins and it’d be too much, too many people, too much noise, pain etc.

Update 4th May 2016

It has been a hectic couple of months to say the least, with lots of out patients appointments and then the weekend before last, Beth’s pain levels started to increase significantly, resulting in her being admitted to hospital on the tuesday with another bout of her latest issue, which is pancreatitis.
Beth has been diagnosed with pancreatic divisum, which in itself shouldn’t cause too many problems.But when you add it into the mix with everything else that Bethany has, it has meant 6 bouts of pancreatitis in just under 2 years.This has not been seen before by her specialists, in all their years of medicine. There is no doctor in the UK that specialises in the condition in children, making it very hard, if not impossible to get advice.
Her surgeon in London wants to carry out a procedure that involves a lengthy operation, that has only been done on a child once and never on anybody with the extra intestinal problems that Beth has.So there are still lots of questions and checks to be done before a final decision is made. The operation will require a 2-3 month hospital stay for recovery and then more recuperating when home.

Beth was allowed out of hospital at the weekend, still not able to do much, as  her pancreas is causing a lot of pain, she’s on a few pain medications but they are not always working.We are still waiting for a call to discuss exactly what the surgeons want to do. In the meantime her pancreas levels are on the way up yet again, if they are she will have to go back into hospital, will update if this happens.

Update 28th February 2016

Beth had her new Hickman line put in a week ago! This means she now can go swimming at Little Havens. Beth is still struggling with sickness and pain. She is also suffering with dehydration even though her TPN bags are 4 litres  and she has 3750ml of that every night. She is getting tired very quickly and we just don’t know what’s going on with her at the moment. No one seems to be bothered or have a clue what’s going on, which is hard for us all to deal with .We have asked for a transfer of care to another hospital, so fingers crossed this happens.
Beth had her 12th birthday, so thank you everyone who sent her cards and gifts it cheered her up.We also told her about what Post Pals are planning, she is so excited as her favourite animals are giraffes.

Beth is trying school but it makes her very tired, causing her headaches.Thankfully OT is going in to try to give advice on what Beth needs, and to try it before phoning me to collect her.As you can imagine she goes in for an hour sometimes , then I’m called after 30 mins ,so by the time I’ve got home it’s time to go back. It is what it is and we deal with it as best we can.
Thank you again for your hard work in making Beth smile, which puts a smile on our faces.

Update 3rd January 2016

Firstly like to say thank you to everyone that sent Beth cards and gifts.

December has been a funny month. Beth still hasn’t been at school as she’s been struggling with pain and tiredness to the point of being sick! School have been fab and they have sent her a 1-1 to the house to do some work, but even that is a struggle for Beth at the moment. Beth has had lots of sleepless nights again with pain/sickness and feeling faint, we are hoping for an explanation for this, when we see her London consultant. We are still waiting on the genetic test for her genetic pancreas results and we’re hoping it will answer why her pancreas keeps playing her up, but it’s a waiting game. Beth has so many hospital appointments in January, 1 of which is for her new Hickman line to be replaced and PICC taken out. This should be done the 8th Jan, but at the moment Beth isn’t feeling great and has sore throat, so we’re hoping it clears up ASAP.

Update 2nd December 2015

Beth spent three weeks in hospital due to having an infection around her line (not in her line). But because of the type of infection it was, they decided they would remove the line and replace it with a PICC line until January, when a new Hickman line will be placed. She needs to have another two weeks of antibiotics just to make sure the infection has gone. Beth’s pancreas decided it would flare up, making her more poorly than the infection. The doctors have now decided it’s not after operations that it flares up, so it’s anything that can trigger it. They have done some genetic testing to hopefully find out why. She also had a scan which shows the pancreas is not right, so we have to wait for results before she is referred to a specialist. Her pain has been up and down, but the local pain team are fantastic, although she’s feeling sick more and more lately.  Her bloods are all over the place and this infection has hit her hard, tiredness is a big thing and anything she does makes her so tired. Bethany’s school has been fantastic and has done a plan for her 1-1 to come to the house and do a bit of work with her if she’s up to it. Then when she’s up to it, she can go to school and see her friends for an hour. When school and us feel Beth is ready for lessons again, then she can do an hour or so a day, hopefully this will be soon, as she loves school and misses her friends.

Update 13th November 2015

Beth has needed to be admitted to her local hospital because she has a pocket of fluid under her Hickman line, this has given her an infection and so she will be in hospital for another seven days, so they can give her IV antibiotics x

Update 22nd October 2015

Bethany started senior school which is great, she is doing half days as she’s finding it very tiring. She loves it there and has made new friends. However, her health is a roller coaster at the moment, both good and bad days.

Can everyone check they have the new address for Beth which was changed a while back, as post is still being sent to old address, thank you.

Update 5th September 2015

Bethany is still suffering and we will be trying something new at the end of September to try and treat her inflamed bowel. Beth has said she will try it once, but if it hurts, then no more. As she’s 11 years old we gave her the choice because it’s her body.

Bethany started senior school on Friday and everything has been put in place for her, including a 1:1 teacher who seems ok. Beth will only be doing half days because she gets very tired.

Thank you to everyone that has sent her letters/cards and gifts.

Update 23rd July 2015

Bethany still isn’t great. She should have had surgery to remove her large colon but during surgery the gastro doctor decided not to go ahead. We are not sure why as Beth still has same problems as before. Whilst in hospital Beth started having issues with her sugar levels and so now we have to carry an emergency kit with us until she goes in for tests. Beth had scopes that showed her bowel is inflamed but we have to wait for her doctor to come back from holiday for a plan. In the meantime Beth is taking things day by day, some are good and some are bad, but she still smiles.

Update 1st May 2015

Bethany managed to do an hour each day at school for a few weeks until Tuesday when she ended up back in hospital due to pain in her bowel. We are waiting for surgeons at GOSH to come up with a plan. At the moment they can’t keep the pain under control so we have a very grumpy Beth.

Update 7th April 2015

Beth is still up and down and has been in hospital for 12 days as we couldn’t control the pain.

Bethany donated Easter eggs to the underprivileged children in our area which was great. It’s Easter holidays now so we’re doing as much chilling out as she can before going back to school for an hour every other day.  Hopefully we can build these hours back up.

Update 11th January 2015

Bethany had a good Christmas and thank you for all the post and gifts sent for Beth and Rebecca. We went to Harrods with the respite team which Beth loved and then we had a quiet Christmas.

She went back to school for two days and then started feeling unwell, so she has stayed in bed for the last few days and has only come out of it to go and see the doctor. They don’t know why she’s in pain and suffering at the moment, but hopefully we can get her back in to school tomorrow, just so she can socialise.

We have lots of appointments coming up and hopefully this year is a better year for Beth and someone out there can help her.

Update 1st Deceber 2014

Beth isn’t great and is still up and down. She is struggling with just doing half days at school. There’s lots going on but still no answers.

Beth has a Lego advent calendar as she’s unable to eat and she is looking forward to getting our Christmas tree at weekend.

Beth would like to thank everyone for the post sent to her and her sister, as they both love receiving post.

Update 29th October 2014

Beth is still not great and tpn is still all over the place.

We have been away for a holiday and Beth was struggling with that but has tried to join in even though in pain and very tired.

Beth is going to try her first full day at school on Monday – hopefully she can cope but if not then at least we have tried.

Update 9th October 2014

Bethany is still struggling with school but manages half days. I’m glad to find out that she still manages good grades, despite the time she had off while in hospital.

This month we find out what respite hours we get as it goes to panel. Beth’s pn has also been changed yet again which has given her eczema. Roll on appointment with a consultant!

Update 28th August 2014

We have been home a few weeks now. We settled quickly doing all tpn and her other medical needs, but Beth still isn’t right and the pain in her stoma is getting really bad again. We saw her tpn doctor the other day but all they seem interested in is sorting her tpn out right now, as lots of changes need to be done and she’s lost weight. Our concern is that too, but so is this pain which needs to be dealt with. We know it’s her gene causing problems with the bowel (it coats it and stops it working) and considering not much bowel works now we are concerned it will stop working altogether. So we are waiting for local to get back from holiday.

We are still waiting for our respite as no one seems to want to deal with tpn or be line trained and the next panel meeting is October. Beth is hopeful in going back to school even if it’s just for a few hours a day and we have a meeting next week. Until people are trained in line safety I have to be with her, but Beth needs her space as well as being with us, so hopefully they can get in there quickly and train all Beth’s care people at school.

Bethany wants to say a massive thank you to everyone that sends her post. As a family we appreciate everyone’s support in keeping Beth smiling.

Update 29th July 2014

Beth now has a hickman line and is on TPN. She has so much going on with her poor body not being able to tolerate bowel feeding. She spent 82 days in hospital but we are now home and trying to deal with the big change.

Update 5th July 2014

Bethany is still in GOSH but hopefully not for much longer. They have been unable to feed her into her bowel so she will be going home on TPN for bowel rest and we will be coming back to hospital in three to six months’ time to retry feeding into her bowel. We are just waiting for a central line to be put in and TPN training.

Post Pals does an amazing job, thank you.

Update 3rd June 2014

Due to Bethany’s recent acute episode she has undergone an ileostomy and now also has separate jejunal and gastric stomas. She is also currently on TPN (total parental nutrition fed directly into vein). Before they discharge her from hospital they will try and reintroduce feeding into the bowel. If this is not successful then she will have to remain on TPN permanently and in hospital until alterations to the house can be made.