My son was diagnosed in July 08 he is 8 years old.
Here are some tips and advice for others when you are first told you or your child have the syndrome.
The Redcross will supply a paediatric wheelchair and crutches for a small donation when they are returned. They are not great chairs but for immediate need will do.
Join the Perthes Association - They are great and supplied a cool wheelchair. Wrote and sent the cheque with a deposit of £25 on the Tuesday recieved the wheelchair the following day!
Get in touch with your local Council - Occupational therapist will come round your house and assess it and supply things which will be useful.
As our toilet is upstairs I have put a camping toilet downstairs for my son to use which saves the up and down the stairs.
Apply for your Blue Badge through the council you should not have to wait for the disability living allowance, which you should apply for also.
Where forms are concerned put as much information as possible in them but there are stupid questions like how many times a day does you child go to the toilet and how long does it take!
The school will need to assessed by the special education team and the Occupational therapist to see if any alterations need doing. The school will benefit as all schools should be wheelchair friendly anyway. Make sure the school does a fire alarm test and that your child has wheelchair access out of the school. The local fire brigade can assist in this.
Get a spare set of crutches to stay at school it makes life in the morning easier.
Be warned that an child in a wheelchair is lethal and no matter how many times you tell them it is not only dangerous for them but is also dangerous for others if they are whizzing about they do not listen!
My son on his return to school from the summer hlidays was like the pied piper and had hoards of children chasing him in his chair we soon had to stop that as he was lethal.
My sons school have been excellent with everything and each day my son chooses two buddies to help him during the day. P.E. is also fine as he does join in when he is in his chair as he can still catch and throw. He goes to school on days when he has P.E. in jogging bottoms and T-Shirt as he is unable to get changed at school.
I hope this has helped.