7yr old newly diagnosed EDS.... help....drs differing

[Guest guest]

My 7 yr old was just diagnosed with EDS (which type not sure yet)

because of very hypermobile joints all over(can twist her legs around

180'), mildly elastic skin and a bleeding tendency. We thought the

joints (and hypotonia in the hips) were due to nuchal cord at birth,

but now...???.... she had some trouble crawling, walking etc (11mo

and 20mo). but, is normal now although 2-3 nosebleeds a week, walks

pigeon toed, pain in knees and hips, very little stamina when walking

or sports of any kind and has had a swollen finger for 6 mo.

We went to the Rheum today and were told she can do whatever she

wants, physically, other than gymnastics (which she quit when the

finger swelled up). He also said there is no help for her finger....

it is swollen hard and hurts between the first and second knuckle on

the index finger, only one joint involvement. She had an MRI, bone

scan and were told infection.... surgery and no infection.... left at

just swollen. Hemotologist and physical therapist said for her to do

very little to put stress on the joints... swimming only,

contradicting the Rheum. I've read alot... but, what is the

reality???? I get scared that whatever happened to her finger may

happen to her hip or knee..... but, if nothing has dislocated in her

first 7 yrs, except maybe this finger, should I really constrict her

to little activity??? Has anyone had swelling like this?? What should

she really not do and what is okay?? I need real experience.

Also, my 2 1/2 yr old son has a severe swallowing disorder of unknown

origin and is on a feeding tube.... everything else is normal. He can

do alot of hypermobile stuff that my daughter can do, but, I don't

know if all kids can at his age, being flexible and all. He has

crawled and walked early (5mo and 10mo). I just wonder if his could

have shown up in his lazy swallow. Any experience would be great!!!!

We go to the genetisist in Dec.

Thanks,

Amy

[Guest guest]

Ya know, I was sitting here in my own litte world here too, just thinking

about the sports and how some of us regret doing them. My son is twenty

seven and his doctor,who was good about EDS stuff, didn't want him in ANY

organized sports and so he didn't do baseball, or anything a lot of his

friends did. I think he feels really badly that I didn't let him do those

things. He had to learn about baseball when his little girl played

T-ball...think he was mad at me for a long time for keeping him from

participating, and he still has just as many problems as I do...so I say,

let the children choose..within reason, of course.

Blessings, Doris

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[Guest guest]

Amen, ...I just got around to reading your post!! I had already sent

the one about my son. He has two girls who are affected, and he's pretty

much keeping them educated as you suggested, has had them to see the

pediatric geneticist here in Albuquerque, and figures the kids pretty much

figure out what hurts and what doesn't and what price they want to pay while

doing it. He really resented for a long time that I wouldn't let him do much

of anything other than ride his bike and play with his friends. I was going

by what the ortho was telling me, and he and I have it straightened out

now...whew!!!!!!!!!!! Sometimes, it's like whamming your head against a

brick wall!

Thanks for the input...I worry about my grandaughters, and what you said

reinforces what I now believe.

Blessings, Doris

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