Our Pal - Callum

NB: Please do not send sweets

Callum and his family are Christians.

Story written 2005

Callum was born at 35 weeks by emergency Cesarean and it was instantly apparent that Callum had problems. He was immediately transferred to the special care unit where he was put in an incubator and ventilated. Callum was critically ill and not expected to survive. But Callum was a fighter and after 48 hours started to turn the corner. Callum spent eight weeks in special care, where at six weeks after lots of tests, Callum was diagnosed with a genetic syndrome called Prader William syndrome. I had great difficulty accepting this at that time and even now I sometimes struggle with the diagnosis. But on the whole we take one day at a time.

Callum as a baby was very floppy just like a rag doll and he did not support his head until he was one. He didn’t cry and barely woke up, he had to be woken for feeds. But as the months went on Callum became more alert and responsive. Callum started to support his head at one year, was sitting by 20 months and could walk at 2 years 10 months. From the age of two onwards an insatiable appetite kicks in and people with P.W.S feel constantly hungry. They cannot satisfy their appetite and if allowed, a person with P.W.S can eat themselves to death. Over the last six months or so Callum has shown a increased interest in food and has asked for snacks. But to date Callum has had a very healthy diet with only three meals per a day and no extras. I just hope I can keep things this way so Callum stays slim and healthy.

Callum for the past year has been having a nightly growth hormone injection, as adults with PWS tend to be on the short side with small hands and feet. The growth hormone should allow Callum to be of average height with normal sized hands and feet though. It also has other benefits including increased energy and can help with muscle tone. Callum has grown 9cms the past year and is catching up with his peers and his feet have grown 3 sizes. Callum has learning difficulties and delayed speech and he attends a special school three days a week. He is due to start mainstream two days a week in September and we will see if a dual placement works for him.

Callum is a very happy sociable little boy and has given our family so much. We are very proud of him and all he has achieved to date. Callum has worked very hard over the past four years.

Update 6th May 2008

Callum has been really well lately, but has put on a bit of weight. His interest in food is a lot stronger now, although it is still manageable.

We have just been to Wales for a week which was really lovely. We stayed in Cerbra’s holiday home.

Update 31st January 2008

It has been a while since i wrote but have been really busy with Callum as he has had a small accident. On the 9th December on the way to a Christmas party Callum caught his little finger in a fire door. He broke his finger and the nail came out of the nail bed. I took him straight to the hospital where he had to have a small operation to put the nail back in the nail bed. He was put straight on antibiotics but the finger became very infected and all through December except for Christmas day we had to go to the hospital to have finger checked. Towards the end of December, Callum was given a third course of antibiotics from the hospital and then finally was discharged from hospital on the 8th December. After a couple of days though the finger started swelling again and was extremely red so we went to his doctors and he was put on a 4th different antibiotic, but towards the end of the week course the finger started looking worse. Well, he is now on a 6th course of antibiotics and the finger is looking a bit better. We are due to go to Wales on Saturday so we saw the doctor on Monday and he has given me some antibiotics for Callum to take while we are in Wales. I’m going to see the nurse Friday evening just for her to check his finger before we go.

Other than that Callum has been really well (it must be all those antibiotics). Callum is having a sleep study on 14th February and at long last we have got an appointment to see an ear nose and throat doctor on the 26th February to see why his speech is very nasal.

I know this is late, but i would really like to thank everyone for the Christmas gifts and cards.

Update 2nd December 2007

Callum has been very well and happy over the last few months. Callum saw his consultant last week and he is very pleased with his progress overall. His mainstream school have managed to get funding for a laptop for Callum to use in class. Due to his low tone he is still finding it impossible to hold a pencil and to put pressure on paper to write or form letters. He is enjoying his wheelchair and i am developing muscles in my arms. I have just bought Callum a puppy (a llaso Apso) and the puppy will be able to go out for short walks in a fortnight, so hopefully this will encourage Callum to walk more.

We wish everyone a very happy Christmas and new year.

Update 1st October 2007

Callum has been very well over the last few months, although he is still having lots of problems with his speech and low muscle tone. Callum is waiting to see an ear throat and nose consultant to see if his tonsils and adenoids are affecting his speech as his speech is very unclear. Callum was issued a wheelchair last month so this is making trips a lot easier, as more often than not i would end up carrying him, as he got so tired walking.

Update 15th August 2007

Callum has generally been very well over the last few months. His muscle tone has not improved and generally finds walking very tiring, so has just been measured up for a wheelchair. His food interest is more apparent now than what it was, but is still generally manageable. He can get quite cross when i say no but i am firm and do not give in. Thankfully we do not have this situation often at present.

Update 3rd June 2007

Callum has been really well throughout the winter months. He had just a couple of chest infections which he got over quicker than past ones. Since i last wrote his interest in food has stepped up a notch but i am still finding it manageable. His latest trick after eating something and finishing it is to say ‘i did not like that mum i better have something else’ to which i say no! Sometimes he accepts this, but other times he gets a bit cross. His latest sleep study and thyroid check where both fine which we are thankful for as it is very common for children with P.W.S. to suffer with sleep apnea.

Update 1st December 2006

Callum is very well at present after his spell in hospital. Growth hormone is going very well, Callum saw his Endocrinologist last week and he is very pleased with his progress height wise as he is now average height for a five year old. There is still not much improvement in his muscle tone though. Callum and I would like to wish everybody a very happy christmas and a massive big thanks to everyone who has written and sent cards to Callum.

Update 24th November 2006

Up until last week Callum had been really well but last Tuesday, at school, Callum started vomiting. It is very rare for somebody with P.W.s to vomit and can be very serious. Callum’s school phoned an ambulance and he was admitted to hospital where he spent 48 hours being monitored and trying to find the cause of him being sick. He had scans and x-rays and was seen by doctor after doctor and surgeons but nobody could find the cause. Children with P.W.s have a high pain threshold and this can mask the symptoms of a serious illness and it might not be until they vomit that anyone is aware of a serious illness which can be life threatening. On discharge from hospital all the doctors agreed on one thing – they had no idea why Callum was sick. Callum is fine now and all he talks about is having another ride in an ambulance.

Update 20th October 2006

Callum has been very well over the last month, he has just had a small cold which didn’t last too long. Callum is waiting to have a bone scan as the growth hormone he is on can age his bones, so hopefully this will be done next month. Callum’s interest in food has stepped up a notch – he keeps saying he is not full after his meals and will often say ‘i havent had my tea yet mum’ more or less straight after lunch. I expect this is the start of how things will be. Callum talks about food quite a lot but hopefully i will be able to manage it and it will not affect his health too much.

Callum has a new Computer which Cerebra (a charity for children with brain injured or brain related illnesses) bought for him. He loves it and has a special mouse so he can play lots of games and do school work.

A big thank you to Julie and Alan this month.

Update 3rd August 2006

Callum has been really well and happy over the last couple of months. He has just started swimming lessons to hopefully improve his muscle tone which is still very poor. He is now showing a great interest in food and will say after a meal ‘i am not full yet mum’ so it seems his food awareness is now becoming an issue. We would like to say a big thank you to Julie and Alan Barret for all the cards and gifts they have sent.

Update 6th June 2006

Callum has been quite poorly over the last two months; he has had one chest infection after another but seems to be on the mend now. He spent his birthday in bed though.

I would just like to say thank you for Callum’s cards and gifts that have been sent to him. Callum loves all the cards he gets; he keeps them in a pile and often takes them out in his backpack.

Update 30th March 2006

Callum has been really well this past month. He has been working very hard with his speech therapist and his speech is really starting to develop. Callum saw a dietician at school last week and she is very pleased with his weight – it is spot on for his height which is really good for someone with P.W.S.

Callum has had lots of post this past month. So lots of thank you’s to all who have sent post and gifts to him. A very special thank you to Stephen who sent Callum a wonderful Corgi Old Fashioned red bus. Sue, we do enjoy your little notes you send Callum. Kate Dee, thank you once again. Emma and David – Callum has had great fun with the medal you sent him. Nicky, we tried so hard to do the Maze game and thank you once again to everyone else.

Update 3rd March 2006

Callum has been very well over the last month. Callum saw his consultant on the 28th Feb and he was very pleased with Callum’s progress over the last six months. His speech is improving slowly but surely. His daily injection of growth hormone is still working well as he has grown quite a bit and is now average height for his age, which is fantastic as a year ago before starting G.H. Callum was well below average for his height.

Thank you for my cards over the last month. A big hug and a sloppy kiss for Kate Dee for the great bus and the fantastic London bus snow globe, which will be taking pride of place in my bedroom (Callum has not stopped shaking the snow globe he really loves it, thank you so much Kate). Also thank you to Tez for the letter and for Splash the Orca.

Update 27th January 2006

Callum was so glad to go back to school after the Christmas holidays. After being back a few days Callum became unwell with a temperature and now has a chest infection. He’s now on his second course of antibiotics; because his very poor muscle tone means he cannot cough to clear his lungs. He also has an upset tummy which i think is from the antibiotics. Callum is a real drama queen when he is ill and keeps saying I am ill mum.

On a different note, Callum saw his Endocrinologist last month and he was very pleased with Callum’s progress since being on Growth hormone. His results from sleep study where fine and his thyroid levels where fine as well.

A big thank you to everyone who has sent cards to Callum.

Update 4th January 2006

We hope you all had a lovely Christmas. Callum sent his elf a Christmas card thanking her for her wonderful kindness. I would like to say i was completely overwhelmed by all the parcels and cards he received. Thank you once again everybody.

Update 8th December 2005

Callum has been very well and we have had no problems at all. Callum is due to see his Endocrinogilist 19th December to check all is well with the growth hormone which Callum has daily by injection form. Callum had lots of cards and postcards and gifts last month which we would like to thank everyone for. He loves his Post. Callum is excited about christmas.

Update 9th November 2005

The colder weather is here and unfortunately Callum seems to get lots of coughs and colds in the winter. He currently has a chest infection and due to his poor muscle tone he cannot fight these coughs and colds. He is now on his second course of Antibiotics, but this does not stop Callum smiling and laughing.

Thank you very much for all the cards, letters and gifts Callum has received.

Update 26th September 2005

Today Callum received his lovely posty project and would like to thank the lady who made it. Callum will have great fun writing in it. He would also like to say thank you for all the gifts and stickers he has received.

Update 7th September 2005

We have just been in hospital for a sleep study and to have Callum’s thyroid checked so waiting for results of them at the minute. Callum is due to start his new nursery at local mainstream infants tomorrow; he will be doing a dual placement with the special school he currently attends.