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Welcome to Toby's web page. We have set the page up to keep everyone updated on Toby's progress and to maybe answer some question people may have.
For those of you who do not know him Toby is nine years old and we live in Somerset, England.
From birth Toby has had many developmental problems. There have been many different diagnosis from Dyspraxia (due to motor skills problems) to Aspergers Syndrome (due to unusual personality traits). Toby was finally diagnosed with Hunter's Syndrome (also know as mucopolysaccharidosis type 2 or MPS 2) in August 2004 (for more information on Hunters Syndrome please go to www.mpssociety.co.uk).
Since the diagnosis for Hunter's it has been suggested by a paediatrician that as some of the developmental problem have been with him since birth, and that as Hunters is a progressive illness that would not show signs of deterioration so early on in life, the cause of Toby's learning difficulties, socially poor behaviour and mobility problems may also be something called Sensory Integration Disfunction.
Don't worry we are confused too!!
Journal
Wednesday, February 2, 2005 4:58 PM CST Well it seems that we are all just about recovering from Christmas. Lisa and I have barely had time to breathe since she last wrote. Christmas as you can probably imagine was the usual two weeks of hectic stress, which somehow all came together in to a fantastic Christmas. Toby was thrilled to get a Game Cube and has not stopped playing on it since! It was all a bit much for Zak who spent the whole day open mouthed in amazement at all the new toys (and boxes) to play with. It was lovely to see Toby starting to enjoy his big brother role, he was of course in charge of helping Zak to open and play with his toys and clearly enjoyed sharing Christmas with his little brother.
Once the excitement of Christmas faded, we had Lisa’s Parents and Sister come round for New Year, for which much merriment was had. It was the first time Toby had managed to stay awake until midnight which was fantastic!
After all the celebrations had faded it was back to the normal routine of medical appointments, which I must say came flooding in! Last week Toby had an ear, nose and throat examination to see if there was any cause for his problems sleeping and breathing. The doctor has decided we need to have a sleep study conducted where they monitor his sleep to see if there are any abnormalities. It may mean keeping him in overnight, which none of us are keen on, but hopefully will help solve his breathing difficulties. He has also had a CT scan which he was quite excited about, and went very smoothly, it will be a few more days before the results come back…..
Toby has changed to a new medicine for his bowel problems, which has meant he has missed a week of school whilst the rather “explosive” medicine took hold. Toby was very pleased to be at home for a while. The new medicine is working well though and Toby’s stomach has shrunk considerably.
Today we saw a specialist in learning difficulties who conducted D.I.S.C.O testing for autistic spectrum disorders. This was a 2 hour questionnaire on Toby’s complete history. It is always quite hard going over Toby’s’ medical history, but as always it needed to be done. We will have to wait a week or two for a full report however the Dr has told us Toby does have an Autistic Spectrum Disorder to some degree. I am still in a bit of shock, it seems to me a good thing as it takes away a lot of the symptoms we thought were caused by the MPS. Although a lot more needs to be done to find the extent and cause of each symptom.
Bye for now.
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