C/O 17 Pettits Boulevard
Rise Park
Romford
Essex
RM1 4PL
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Sam M's Parents/Guardians

Emma and Steven

Sam M's Siblings

Joe 07/12/1996 likes The Simpsons, Wrestling, Star Wars, football and cricket. Sophie 13/6/2000 likes animals, hama beads, arts and crafts and dancing.

Sam M's Interests

Barney, Fireman Sam, Bob the Builder, Tractor Tom, In The Night Garden, cuddles, learning new words, playing with his trainset, puzzles, colour matching games, climbing, jumping, dancing to music, animal books, Spiderman, V smile games.

Sam M's Favourite Colour

Yellow

Is Sam M able to read?

No

Is Sam M able to use hands?

Yes

Is Sam M visually/hearing impaired?

No

Does Sam M suffer from any developmental delay?

Yes

Development Delay Details

Sam has a learning disability and is slow to pick up new things and his speech is limited. Sam has a limited understanding of past and future and his understanding of his own past and future. He is very much in the present. Sam gets frustrated when he cannot have his own way and is very independent.

Favourite type of post?

Any post with pictures

Story written 2006

After months of hospital stays, EEG’s, MRI scans, and blood tests, we were given the diagnosis of Temporal Lobe Epilepsy, caused by a lesion, probably a cyst, in his left temporal lobe.

Sam continues to have up to 20 seizures in any one day, causing him to feel tired and dazed for much of the time. His current medication is not having any effect on the episodes.

We had our first appointment with the neurologist at Great Ormond Street on Tuesday, and he has suggested a change of medication, a further MRI, and an overnight, with a view to possible surgery to remove the cyst, which is scary, but I think we would consider anything which may help at the moment.

Sam attends a mainstream playgroup and a special needs playgroup at the moment and is doing so well that in September he will be beginning at a nursery 5 afternoons a week, supported by a 1:1 teaching assistant due to his epilepsy and personal care.

Sam is such a loving and loveable little boy, full of cuddles and his is so happy, but he can also be a monkey, full of mischief and giggles. He is loved to bits by his brother and sister, and they worry a lot about Sam.

Sam has Complex Partial Seizures, lasting around 1 minute, which are very frightening to watch and we have not got used to seeing Sam experience them. He looks terrified during a seizure, but copes amazingly well, and seems to recover quickly from a seizure.

We are hoping that over the next year, Sam will become seizure free, one way or another, and we look forward to that day. Until then we are taking each day as it comes. Epilepsy is so unpredictable, it is hard to make plans for the future, but giving Sam the best chance we can and seeing Sam happy here makes it all worth waiting for.

Update 4th April 2008

Sam is doing fine this month. He still has a bad stammer, but is coping well and has good and bad days. His behaviour is up and down, but his sleeping is better now he is on melatonin to help him drift off to sleep. He is looking forward to going back to school and wakes up each morning saying 'I go school today?' Bless him, let’s hope it lasts!

We have had a lot of post and special thanks go to Jade Boyd, who sent really thoughtful gifts to all the children – THANKYOU! To Kate Dee for lovely cards and to Bereneice, Callum and Emma for great postcards from Cornwall. Also to Karen and Sami for a lovely homemade card. Lastly, thank you to the lady who sent a beautiful handmade Tomblibooos card for Sam, he loves it.

Update 12th March 2008

We have just got back from Disneyland Paris, where we went courtesy of a local charity. Sam had a fabulous time; he loved seeing all the characters and the rides. The weather was cold but fine and we are worn out from all the walking! 

Sam is doing fine apart from the terrible stutter he has developed, which is so frustrating for both him and us. You can see him trying so hard to get the word out. The speech therapist says it is possibly due to his brain functions moving from the left side of his brain over to the right side following his operation last summer. It is a case of only time will tell.

We have had some lovely post this month including a Tombliboos card from Helen in Plymouth, some great homemade Easter cards, and a sweet little gift for Sophie from Julie Barrett. Many Thanks for all these things, we love opening the post and Sam loves all the cards and books/puzzles he gets.

The ideal age range to send Sam is 2 years plus, as he is developing slowly. His speech is becoming better, apart from the stammer, and he is attempting to say longer sentences all the time. We are so lucky he is doing so well.

Sam has been having some swimming lessons which he seems to love and now he isn’t having so many seizures, it’s less of a worry for us. He still needs one to one in the pool though as he still has trouble concentrating and needs constant supervision in the water, but at least he is agreeing to get in the water now!

Sam is developing into such a character, he is such a little monkey and so stubborn, but also such a loving and affectionate little man.

Update 30th January 2008

Sam turned 5 on New Years Day and had a little party which included rides on a real fire engine with some friends and he really seemed to enjoy it.

Sam has developed a stammer over the last couple of months, which makes talking really hard work for him. It is so frustrating for all of us to listen to him trying so hard and literally wearing himself out trying to say something as simple as 'thank you mummy'. We begin 2008 with an appointment with the speech therapist who told us he has the worst case of stammering she has ever seen in someone so young. She is referring him back to Great Ormond Street to see a SALT there as she believes the stammer is a part of his recovery from his operation and should be treated neurologically. In the meantime, she would like us to try the Lindcombe Stammering therapy treatment, which involves lots of praise and acknowledging the 'bumps'. She is not confident this will work as Sam has a very short attention span and a bad short term memory, but we will see what happens.

So many thanks to the lady who sent Sam a Christmas gift which arrived late (I can't remember your name or email) but he LOVED the puzzle and the other gifts which were at exactly his level of 2- 6 pieces per puzzle. We really appreciate it. Also lots of thanks, as ever, to Julie who sent lovely gifts for Sam's birthday.

Update 3rd January 2008

What a year it has been for us. Sam has been on a journey, starting 2007 with up to 10 seizures a day, hoping he would be suitable for surgery to remove part of his brain, and leading up to his operation in June which was both a difficult and fantastic day for us all. The roller coaster ride following the surgery, starting a new school, and settling in well there with the odd bad day here and there. We were warned Sam’s behaviour could deteriorate, and he has become very emotional, obsessive and controlling since the operation. We are hoping it is part of his recovery. Lately he has shown signs of the old Sam, with fewer tantrums and aggression and the old sense of humour is back, so we are hopeful.

We have had a very busy Christmas and New Year, with Sam’s 5th birthday on January 1st too. Joe, Sophie and Sam did very well this year; they were amazed to find they had letters from each of Santa's reindeer and cards too! They also received presents from quite a few of Santa's Elves, which were so thoughtfully sent, and quickly opened on Christmas morning! People have been so kind to us and a great support, we are very grateful. A big thank you to Bryan the Elf, and to Julie Barratt and all the other kind people for being so thoughtful. We are thinking of you.  

The room looks so bare now that Christmas is over. Sam is looking forward to going back to school, he gets overwhelmed very easily and this time of year really tests him, he will be glad to get back into some sort of routine.

Still no seizures so far, it has been 6 months now. We are still adjusting to life without the threat of seizures looming over each day, and are finally nearly believing they are gone for good. Sam has a check up at GOSH in January, where we will probably have more MRI scans etc to see the after effects of his brain surgery. They say we must give it a year to be sure of the long term diagnosis, but he is doing well so far. Tomorrow Sam is having his birthday party, with rides on a real fire engine, and we are hoping he will really enjoy it, without missing it due to a seizure. 

Wishing all the other pals a happy and healthy new year, we do read lots of updates to see how all the pals are doing, and will carry on reading all the news in the New Year xxxx

Update 4th December 2007

A big thank you to Brian the Elf for sending Sophie a Christmas gift already, she can't wait to open it. Also a big thank you to Julie for sending lots of parcels and gifts, including an Advent Calendar for Sophie. Thank you everyone for being so generous.

Sam is keeping us on our toes at the moment, he does not seem to be able to sleep at all, and we are all very tired. His behaviour can be very disruptive and difficult, and his school is referring him to behaviour therapy. This bad behaviour could be due to the operation he had in June, a part of the normal recuperation following brain surgery, which will stabilise over time. It could be the effect of the reduction in the medication he was on for epilepsy, which was a mood stabiliser, or it could be that he is functioning at the level of a normal two year old and these temper tantrums and frustrations are a part of his normal level of development.

Anyway, we are hoping it calms down soon, as we are all feeling the strain - even Joe and Sophie cope with a lot of disruption and aggression from Sam at times.

We are looking forward to Christmas, and hope everyone stays healthy over the holidays. Sam has asked for drums!! We have got a few letters from reindeers which have arrived, which we will be starting to open tomorrow. I can't wait to see Sophie's face, Sam will not really understand unfortunately, but the pictures on the cards are sure to bring a smile. Many thanks to all at Post Pals for bringing us a happy 2007, and to all the kind people who send mail, it really helps to lift a day to know there are people who care enough to send a smile to us. Merry Christmas to you all xxx

Update 30th October 2007

Sam is getting on really well at school, with only the occasional tantrum if he does not get his own way! Luckily the staff are excellent with him and deal with him perfectly. He has developed some strange obsessions including flushing the toilet each time anyone uses the toilet, which he gets upset about if anyone else does it first, but we are stressing the fact that it is not his sole right to flush the toilet each time, and other people have 'flush rights' too!!

His autistic tendencies are becoming more apparent now that the seizures are stopped, and it is increasingly hard to get him to cooperate in certain situations. We are hoping this will be temporary, and part of the recovery from his operation in June.

Sam will be 5 in January and I don't think he could cope with a party this year, so we have just booked for him to go for a ride on a fire engine, which we are hoping he will love!

Many thanks to our great friend Julie, who has sent many great little treats and gifts in the mail, including some fabulous Halloween pressies. The children all benefit and they send big hugs!

Happy Halloween to all pals and families x

Update 30th September 2007

Many thanks to Julie Barrett, who sent Joe, Sophie, and Sam each a lovely gift from her holiday to Cornwall. It is much appreciated, as are the wonderful letters received too.  Also to Sam, aged 6, who sent Sam a lovely letter, which we wrote a reply to.

Sam has had a good month; he had his MRI Scan at Great Ormond Street, to see why his head has started to swell up where he had the operation. We went back for the results last Monday, and the scan shows that in the space where they took out the temporal lobe, it has filled with cerebral fluid, which has caused the swelling. The consultant says that the fluid is not causing pressure on the brain, but is keeping an eye on the swelling. We have the next appointment in January, so fingers crossed there is no further swelling before then. 

So far Sam has had no more seizures, and is continuing to do well at school; his speech is really improving in his day to day conversations.

The GP has requested attempt to withdraw the antihistamine medication that Sam was on to help him get off to sleep at night. He has had none for three nights so far, and it has been okay. He is still taking up to an hour to get off to sleep, and is waking up very early, so it has been quite draining, but it is better than before he had the medication, when he would take hours to get off to sleep, crying himself to sleep, wake up frequently at night, still crying, and be miserable all day!! So at least things have improved since then hopefully! 

The weather is getting colder and wetter, so Sam is going to miss his outdoor playtimes when the rain really sets in. He loves to play out in the garden in his little red car and on the slide.

Update 30th August 2007

Hope you have all had a good summer. Sam recovered well from his surgery over the summer, but has had possible complications which became apparent when his head started swelling up last week. After a trip to A+E, a day at Great Ormond Street, and then an X-Ray, the consultant Surgeon said it is just swelling for no apparent reason, but was not anything major to worry about and has booked Sam in for a CT Scan to confirm this theory. We are pleased about the CT Scan as until there is proof there is nothing sinister going on inside his head, we find it hard to believe his head would swell up for no reason. Sam is fine despite the swelling, and more than ready to begin school next week. His sleeping has been awful these past few weeks and his behaviour has been very up and down, with lots of crying and screaming. He has also been unable to cope with any situation which is unfamiliar, or crowds of people. This has been frustrating for all of us. I am hoping he can be assessed for ADHD, and a mild form of autism, which is the only way I can explain his bizarre behaviour. Hopefully if he has ADHD or suchlike, we can get him the help he needs to cope with it.

Thank you to everyone who has sent cards this month and to Post Pals who sent Sam a lovely knitted toy (which is now sitting on Sophie’s bed!) Thanks for your support through this long hard summer, we really appreciate it.

Update 31st July 2007

Sam has still had no seizures since the operation in June, which is fantastic. We are seeing a big improvement in his speech and vocabulary, but he is still getting very frustrated when we cannot understand what he says. His sleep is still affected and we have had many broken nights, where he wakes up at 3am and is ready for the day and then falls asleep at 6am, leaving us exhausted for the whole day.

We have the follow up appointment at Great Ormond Street on 13th August, where they will tell us exactly what it was that they took out of his brain, a cyst or possibly a slow growing tumour, but the surgeon has told us not to worry (easier said than done!).

We have been busy in the school holidays with lots of trips to see friends, BBQs and daytrips. Trying to wear Sam out every day is hard work!

Our house looks a tip, I will get no house work done until they go back to school in September, AND the washing machine broke down.

Many thanks to everyone who has sent cards this month, Sam received a great Bob the Builder card all the way from Alabama, USA, which he laughs at every time he sees.

Have a great summer and hope everyone is keeping well.

Update 8th July 2007

Sam has still had NO SEIZURES so far, so he has done really well. His scar from the operation is healing nicely, and he is his usual cheeky self! The only complaint we have is that now the seizures have stopped, he is not sleeping! Must not complain, hopefully this is just a phase!

He has been spoilt this month, with gifts all the way from North Carolina. Many, many thanks to Susanna and her wonderful family for sending gifts to all the children, they really are over the moon with them. Sam got a gorgeous Fireman Sam blanket, Sophie got some cute stickers for her room, and Joe was thrilled with his Star Wars Beach Towel. Sophie has been excited to receive more cards and gifts from Julie Barrett, and photos of the dog Julie helps to look after, and Sam has had beautiful home made cards from Kate Dee, and from Ellyn from Alabama. We also got a lovely email from a lady whose son is going through similar to Sam and she found us through Post Pals, which I thought was lovely. I wish I had more time and could write and thank you all each time you are thoughtful enough to think of us and send something, please know we really appreciate it.

We got back from our holiday to Cornwall yesterday, which was a nice break away. The children spent lots of time playing on the beach and splashing in the sea. The weather improved over the week and we had lots of fun.

Sam has two weeks of nursery left, and then we will have the summer holidays before he starts at the special school in September. He has visited a few times and I think it will be lots of hard work for him, there is a long way to go, to improve his concentration, speech and understanding, but now hopefully the seizures have stopped things will be calmer for him, and he will come on quicker. Fingers crossed!!!

Update 4th June 2007

Sam is doing really well following his surgery on Friday. Thanks for all the messages of support you have sent, we really appreciate it.

Update 16th May 2007

All is well here, but very busy. We are preparing for Sam’s trip to hospital for his operation. We found out that Sam has been given a place at the special school we wanted too! This is a big weight off our minds, as now we know he will get the support and care he needs at school.

Many thanks to Kate Dee for the great cards, and to Julie Barrett for the lovely letters and gifts received this morning (Joe is most impressed with your wrestling knowledge!) Also many thanks and hugs to Susanna and family from North Carolina, who sent a big box of teddies and books. Sophie and Sam are over the moon with them and Sam has insisted on taking the Fireman teddy everywhere! He is practising the zip and buckle too. Thank you all so much, it is lovely to know you care.

Update 2nd May 2007

Well, we finally have a date for Sam's operation. We will be going in on May 31st for a stay of up to a week. The operation is called a temporal lobe resection, and the surgeon is very confident that it could help Sam. They will only be able to remove 85% of the damaged tissue though, which lowers the odds of Sam being seizure free following the operation, but we are hoping it will still have some positive effect on them. It is very scary, but we just want to get it over and done with now. Sam has been very demanding over the past few weeks, being extremely angry and quick tempered, and the stress is showing on us all. Hopefully things will improve following the operation. Please send lots of extra smiles for Sam while we are at the hospital!

Sophie’s school has begun a Young Carers Club, and there are about 6 children in the school who have someone in their family who needs 'special looking after'. She loves going to the club, where they are doing lots of art and craft projects, and talking about the person they help to care for. I am really pleased the school has recognized the special role that siblings play, and the effects on them, of having someone who is poorly in the family. Sophie showed her whole class the Post Pals website, and explained what it does to them all. Well done Sophie!

Many thanks to everyone who has sent post, especially Julie Barratt, who always sends nice things. We really appreciate it; Sam loves all the lovely cards, and Sophie and Joe love receiving post too.

Update 2nd April 2007

Sam has had a good month. We have been up to GOSH and he is finally on the waiting list for the operation. He should have it in July or August, but obviously it could be delayed. The surgeon told us about all the risks involved, which are not to be taken lightly, but we feel that we must give Sam the chance of a life without seizures now he has been offered the chance. Sam loves going on the train up to the hospital and loves playing havoc in the doctors consulting rooms!

Easter holidays are here and Sam will be spending time with Joe and Sophie. We are planning a few days out, which he will enjoy, especially to the farm which he loves.

Happy Easter and loads of hugs to all who have sent mail this month, we are really grateful. Sophie, especially, has had a good month with gifts from Julie Barratt all the way from Crufts. Thank you so much.

Update 3rd March 2007

Sam has had a good month and has been doing well at nursery, with the odd exception.

We have had news from GOSH that Sam's case is being discussed on Tuesday, and they will decide if he can have the operation at the meeting. So fingers crossed for us!!

We have also been writing reports for Sam's statement and doing all that we can to get him a place at a local special school.

Sam’s seizures have been quite bad, with lots of very little episodes that are wearing him out. He has been quite out of it at times, poor little thing. We are waiting to hear about a new medication from the local hospital.

Many thanks for all the kind postcards and cards for all the children, especially the Valentines cards!! Sam has been very lucky to receive a card and a gift all the way from Sweden this month. We really appreciate it.

Update 10th February 2007

Sam has been up and down this last month. As we have been increasing his medication, his behaviour has got more aggressive and violent; to the point where he was so hyperactive he couldn't sit still. We realised it must be the medication causing this and have dropped the levels to what they were a couple of months ago, and we have our little boy back, still full of beans but calmer and more able to concentrate, and all the aggressive behaviour has gone. Just shows what effects medication can have.

We are trying to get Sam a place in a special school, and feel we are in for a bit of a battle, as the EP is questioning if he has learning difficulties. He really does have learning difficulties, but is so up and down that if you catch him on a good day he surprises you with what his abilities are. With the operation at GOSH looming in the summer, and the setback that could cause, I feel the only way forward is in a special school. Any advice on how to support our application for a place in a special school for Sam would be much appreciated.

Sam’s seizures are still occurring regularly, with no sign that the change in medication has made any difference, so it could be that the surgery is our only hope.

A big thank you to Julie Barrett, Alan Barrett and Kate Dee who always send delightful little cards and gifts, Sam loved the playing cards with Bob, Tweenies and Fimbles etc. Sophie loves receiving the letters and cards, and is attempting to write a reply. Joe loves getting things in the post too. Many thanks to everyone who have sent cards and gifts and been so supportive, it really helps to know we are not alone in this.

Update 1st December 2006

Sam has been doing okay. We have two appointments at GOSH next month, a psychological and neuropsychiatric assessment. These will be the final appointments before Sam is offered surgery (or not). Sam has been having frequent overnight seizures, which has been making him quite sleepy in the day sometimes, which in turn affects his speech and behaviour, and ability to learn. This is quite tough on all the family, but we are all looking forward to Christmas. Sam does not really understand about Christmas yet, but I am sure he will enjoy all the presents!

Many, many thanks to Julie Barratt, who has been looking after Sophie and Sam with lots of letters and gifts, they are very much appreciated, especially the advent calendar. Thank you to Kate Dee, Alan Barratt, and to Despina, all the way from the USA. Also, many thanks to some of the other postpals, who have sent Sam some lovely cards and stickers. He says a big thank you! Sam loves all the lovely postcards and we have quite a display now, full of bright colours and characters.

Wishing you all a Merry Christmas and a Happy New Year, Love to all xxxx

Update 1st November 2006

Sam has been up and down this month. We have had quite a few appointments, including the geatroentologist, neurologist, occupational therapist, speech therapist and a visit to the Royal Free hospital for a food intolerance breath test, so we have been very busy!!

Many, many thanks to Julie Barratt, who has sent some wonderful gifts and cards, to Alan Barratt, to Post Pals for sending Sophie a great art and craft bucket, and thank you for the card all the way from Singapore!!!

Sam is very tired at the moment and his seizures are still bad at night, he falls into bed exhausted each night. Happy Halloween to you all.

Update 1st October 2006

Sam has settled in to nursery well, and seems to enjoy his time there. We have an appointment at GOSH on Tuesday with the neurologist, to discuss surgery options for the removal of the cyst. Sam's seizures are still very unpredictable, often happening at night, and are probably moving on from complex parial, to secondary general tonic clonic type seizures, which we will discuss with the neuro. Sam is on the whole coping well, but can get upset at times, as he doesn't understand what has happened to him.

Many thanks to Julie Barratt for the lovely letters, gifts and postcards to Sam and Sophie, which we will reply to as soon as there is time. Sophie has loved receiving mail, and feels very grown up. Thanks also to Ruth, for the gorgeous tiger for Sam and the letters and also thank you to Kate Dee for the wonderful cards. We really do appreciate everyone’s kind thoughts; you really keep us going, especially on bad days.

Update 31st August 2006

Sam came home this morning from Great Ormond Street Hospital. He has been in for 3 nights for telemetry monitoring and an MRI Scan to see if he is suitable for surgery to remove the cyst from his temporal lobe, and the results show the seizures are beginning in the temporal lobe, meaning the Neurologist will probably recommend surgery, so we are now awaiting our next appointment.

We have an appointment at the Royal Free Hospital to see a Gastroentologist to see if Sam's weight has stabilised following his recent change to a dairy-free diet, and for further investigations to see if Sam has more food intolerances.

We had a lovely holiday in Cornwall, and came back good and tired!

Sam has been so naughty this summer, both he and I are looking forward to the start of the school term next week, the summer has gone so quickly, and we have been so busy, but Sam likes structure, so nursery will do him the world of good.

Many thanks for all the lovely post for Sam, and the letter to Sophie from Julie was a treat, Sophie insisted on replying straight away!! Thank you also to Julie and Alan Barratt, Kate Dee and the Agawok girls.

Update 2nd August 2006

We had an appointment at the Royal Free Hospital on 5th July and saw a gastroentologist who recommended a dairy free diet for Sam, to try and resolve his bowel problems and very loose motions. We have managed to get him onto this, with good results so far!! We will review if the diet has been a success in 6 weeks at a follow up appointment. By the way dairy free chocolate is lovely, but do not ever eat dairy free cheese - YUK!!!!!!!

We have a date for Sam's admission to Great Ormond Street at the end of August and we are looking forward to getting the results of the scans, to see if Sam is suitable for surgery or not.

Many, many thanks to everyone for all your kind thoughts, cards and gifts. Thank you to Julie Barrett for all the wonderful cards and postcards, to Alan Barrett for the toy tractor and cards, and to Becky Butler, it was lovely to hear from you, thank you for the lovely Bob the Builder book, Sam loves hearing this again and again! Thanks also to Victoria for the wonderful homemade dinosaur card, and to Cherie Vincent for the super homemade Giraffe card, and to Kate Dee for the lovely Jungle card. We have all the cards up on display and Sam loves looking at them and telling me to look at them!!

Sam is doing really well, and is still attending the mainstream playgroup, and also First Step, a special needs playgroup. Look for www.firststep.org.uk to see all the good work they do with a large number of very special children.

We had another trip to the hospital this morning for blood tests, which is quite traumatic for us all, as Sam seems to have barely any blood and it takes lots of attempts to get any blood out.

We also had a trip to A+E on Sunday night following a cluster of seizures and he had diazepam emergency medication for the first time, which was scary. Sam's seizures are still very unpredictable, occurring both at night and in the daytime, but he is coping very well and is still a cheerful little chap.

Have a good summer everyone and take care xx

Update 19th May 2006

Sam recently attended an appointment at Great Ormond Street Hospital and is on the waiting list for overnight telemetry monitoring and an MRI Scan, to assess if he is suitable for surgery to remove the cyst in his temporal lobe. We are waiting to hear from them.

Sam is currently on a new medication and seems more alert and full of beans! The seizures are still occurring daily (and nightly) though. He has been seeing a speech therapist, and will be starting nursery in September. Sam's bowels are still not quite right, causing him to be still in a nappy, but I am hopeful he will be referred to see a gastroentologist to find out what the problem is there.

A big THANKYOU to Victoria for the lovely homemade card, to Alan for the cuddly dog, to Julie Barrett for the toy tractor and the postcard from the New Forest, to Online Angels for the lovely blanket, to Post Pals for the cards to Joe and Sophie, and all the love we have received. It really helps us to know we are not alone. Sam loves opening the post every morning now.