Re: For Grace - jumping in

[Guest guest]

Hi Grace,

My name is and my sons (7 and 10) and I have HEDS.

I have been reading your post but hadn't had time to write. Have you ever

talked to an occupational therapist about sensory integration disorder?

This might help explain a lot of the sensory issues your son is coping with.

" The Out of Sync Child " is a great resource w ith many strategies that

might help. You may be able to find it at your local library.

As far as other coping we take life one day at a time - celebrating the good

days and making the best of it on hard days. A good day would be about 20

or so dislocations a bad day with the growth spurts, rain, snow or changing

pressure systems could be as many as 60 +. We use splints and braces as

needed and both boys use wheelchairs as needed.

Both boys have many allergies to different meds so we have really struggled

with pain management but have done much better since the boys started going

to pain clinic at Sick Kids. They have had a lot of success with tramadol.

Sadly it is still a research drug in Canada so it is avaiable only to a very

few.

We do daily physio and occupational therapy daily to maitain and strengthen

joints. The boys are encouraged to be as active as possible with daily

walks, exercise and as many " normal " activities as possible such as swimming

lessons and shooting hoops. They also participate in a wheelchair

basketball program at our local recreation centre.

We live in a bungalow so we only have stairs to the basement but we do have

to watch for falls (usually Josh).

take care,