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

[Guest guest]

HI Amy:

Welcome to the list! I do not have children but was one of these people

who was in gymnastics because of my extra mobile joints. I only realized

there was a problem when despite serious weight training, my elbows were

collapsing on me when I did back handsprings. No one knew why. As I got

older, I kept getting soft tissue injuries, sprains that took forever to

heal, tendonitis that took forever to heal. It was only 6 years ago, at

age 29 that I got a diagnosis of EDS. 2 years later I worsened and many

more effects of the EDS were apparent. Now I have dislocating joints,

chronic pain (for which I am on daily narcotics) and too many problems

to list.

Granted, my experience may not be the same as yours or others here but

I beg to differ with the rheumatologist suggesting your child do what

she wants in terms of sports. I blame my dislocating shoulders (now it

is both of them and they come out if I lean forward a bit) on my sports

choices because I did not know better and had no idea there was a

serious problem. I also was heavily into other sports because of the

advantage of that extra range of motion - javelin and discus throwing,

tennis, pitching softball, etc - I never knew my shoulder pain was

different than what others had but I now realize it was. I blame my

right shoulder now being wrecked on the javelin throwing - it felt like

I was ripping my shoulder out, literally. POint is - at least you know

about the EDS while your child is young and can help her stay away from

sports that will stress her joints. Swimming might be good - it depends

on what her problems are. Rhythmic gymnastics might be good as there

isn't so much stress of having the whole body weight repeatedly go on

one's arms, knees and ankles. With EDS, it is more difficult to fix

joint problems once they start and the best thing is education and

prevention. Maybe your child can do some sports but I would stay away

from contact sports for sure. It is important to build muscle strength

because that is what will support the joints if they become unstable.

I also would like to make a suggestion about the bleeding tendency. I

actually had a platelet dysfunction and this was initially missed. It

was only found by doing platelet function studies and a bleeding time -

the other tests usually done for someone with bleeding or bruising

missed it. The first hematologist missed it and when I asked abpot the

EDS she dismissively said she didn't know. I tried again 1 year later

with someone I knew from work and he read some articles I had mentioning

specific bleeding problems and did all the tests in the articles.

Because of this, there is a diagnosis and a medication I can take on my

own if I am bleeding from something and have it before any surgery.

Sometimes the bleeding is blood vessel fragility from the EDS and there

isn't another problem. In my case it was both.

Has anyone suggested an Occupational Therapist to you? I have had a

number of splints custom made and have silver ring splints which have

been extremely helpful in maintiaining function and decreasing pain. A

custom made splint may help her swollen finger. Some of my splint pics

are on my website at http://www3.ns.sympatico.ca/whuzzy

I don't have swallowing problems but some of my GI problems and my

asthma have been blamed on functional problems (not often seen on most

tests) caused by the EDS - like my bowel stretching making me

constipated, my airways collapsing because of impaired tissue

support...so if nothing else is showing it may be a functional problem

which is harder to figure out sometimes.

Here few docs know much about EDS and it is an ongoing trial and error

effort.

Good luck with it all

Joyce