By Trista on Sunday, June 04, 2000 - 04:54 pm:

My dd has been denied services for ot. Now, they are having her independantly evaluated. She is 3 1/2 and has much pain in her hands when coloring, writing, and
using any utensils. When in gym, kneeling is hard for her. SHe is very accident prone and always is hurt. Her eds is mostly joint related. My eds, as well as my ds is
both joint and skin related. We have Type 3. My question is: Is there any proof of benifit from OT. What is it that I can argue for my dd to recieve this service.

By Sue C. on Sunday, June 04, 2000 - 04:55 pm:

Possible arguments and personal experience for PT/OT:

* preventative measure now to hopefully eliminate or reduce a need for surgery later

* training to use joints/ hands properly and/or painlessly to aid in the learning process throughout school

* ability to use joints/ hands so she won't need to go on SSI or other government assistance later because she is "unemployable"

* self-esteem issues: she won't want to feel "different" from classmates because of having to modify many tasks, although she looks "normal"

Personally, I found that the past 5 weeks of physical therapy for badly tracking knee caps has helped my right knee track better, thus adding more stability for me
and postponing the thought of surgery for that knee for several more years! On the other leg, my muscles are stronger and I'm better prepared to encounter surgery
next week for the knee cap that refuses to sit in it's grove and track properly.

I would also suggest that you screen your PT/OT to make sure that they pay individual attention, rather than use an assembly-line method of pumping people thru the
system.

Good luck!

By Trista on Sunday, June 04, 2000 - 04:56 pm:

Thank you Sue for your information. I hope that your surgery goes well, and that you heal quickly. Although, that is less likely EDS. My son recieved stitches in his
leg 3 weeks ago, and they are still not ready to be taken out.

Do you have any particlar way to screen a OT person? I am sorta on my own here, and feel insecure. I want to go in there head strong and get these services that
can only benifit my dd.

Thanks,
Trista

By Sue C. on Sunday, June 04, 2000 - 04:56 pm:

I was lucky to find my PT. I got her name out of the yellow pages. My first visit was for knee braces, prescribed by a GP. She was the 4th (or so) PT location I
visited. The other 3 basically said: here's what we stock. She pulled out her stock AND a couple of catalogs, felt around my knees, took measurements. All without
expecting any pay -- she just wanted me to start out OK!

(She also referred me to an ortho surgeon who does excellent work.)

She also said that some large PT places (like hospital affiliated ones) are just factories where the dollars you bring in are more important than actually helping people.
In "Dr. Scott's Knee Book", he said no more than 2 patients per PT at any given time is a good rule. He went on to say that you should observe what is being done
-- if patients with different problems are given the same exercises, go elsewhere.

I hope this helps you formulate some "interview questions" for OT or PT in your area.

By Barb on Sunday, December 23, 2001 - 09:20 am:

Trista,

A child with EDS would benefit from adaptive physical education. She should not be doing the same gym program as other kids as it could cause joint injury and damage. A therapist who knows EDS might be able to help you develop an exercise program that is appropriate to her abilities and limitations.

As for her hands, please check out http://www.silverringsplint.com/ The silver ring splints can greatly improve manual dexterity and reduce pain from hypermobile fingers. When I was a child, I had terrible problems with pain from writing. I couldn't pass timed tests because I wrote too slow. The splints have helped me tremedously. You might also look into having other assistive devices, such as teaching her to use a computer instead of writing.