RE: Was For Grace - jumping in -OT

July 27, 2004

Hi : My daughter had school consult with on O.T from Bloorview

MacMillan re transition planning. Do you have any sense of whether

Bloorview folks acknowledge or have abililities re Sensory Integration

Disorder. I can't seem to grasp what activities or exercises improve

Sensory Integration Disorder and the symptomotology that goes with it -

it seems so nebulous. Do you think it would be productive asking this O

T for an assessment re same.

Interesting that you find changing weather systems affecting your guys.

Meaghan notices much more sluggishness and generalized aching on those

days, or just says I feel rotten today and I don't know why. Winter

storms seem the worst.

Bernie

Re: For Grace - jumping in

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.

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