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

[Guest guest]

on the sports area of this: like someone said about baton twirling, ballet,

gymnastics... swimming killed me also. i was a swimmer and a gymnast. i

did breast stroke and it really messed up my shoulders and knees. i had to

quit due to subluxations...and i did not even know what it was then.

...

'I live in my own little world, but it's ok, they know me here.'

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[Guest guest]

Dear Amy,

My two cents is that you never know what is going to happen. I was not

very sport inclined as a child. Never took gymnastics, only took maybe one

short stint of ballet and a bit of baton twirling, that was it before high

school. Did the normal running around outside type playing and bike riding

with friends. In middle and most of high school I was in a marching band. In

high school my 'sport' was the roller rink :-). I did try out for javilin. I

was also on the swim team that year but I dislocated my shoulder at the last

javilin practice before the first meet which took me out of both. From about

14 or so on I weight lifted both free weights at home and gym machines. I

also rarely did gym class from middle school on - mostly because I was much

more developed than anyone else and was VERY self concious of my body.

That was the full extent of my active life, which I wouldn't consider

to be very active. Specially by todays standards! :-) Yet by the time I was

in my late 20's early 30's I already had osteoarthritis in my knees. By 35

just about every joint you could think of was affected.

I tell you all this to just give another side of the story. This

condition is VERY individual. I know this doesn't help you. This is one of

the extremely frustrating things about EDS, not only for those suffering

from it but also for the docs. You really seem to be darned if you do and

darned if you don't! It really hit me when I injured myself sleeping. I mean

I try so hard to be careful when I do things so I don't hurt myself and then

I hurt myself sleeping! Now that's frustrating!!

My suggestion to you would be not to try and figure out what will help

or hurt her in her future. Instead try and keep her from injuring herself

now. Teach her where the normal range is for joints and that it's important

to try and keep within that range to lessen the chance of injury (not that

it still won't happen!). I also agree with the others in trying to keep her

away from the more physically demanding sports. My 'motto' to live by is

" nothing to the extreme " . I find the more you can stay in the middle in

everything you do then the better off you are all around. BUT again, that's

me :-) Don't know if it will work for you or anyone else but it's something

to try.

Believe me I know it's frustrating not to have any real answers. All I

can do is wish you and your daughter the best of luck.

Hugs,

HEDS, New Jersey, USA

[Guest guest]

I agree- also was very active as a child- did gymnastics and dance( ballett and

jazz), played all kinds of ball and then in my 20's played volleyball all the

time, plus as a nurse i've been constantly on my feet for the past 10 years.

And i am nothing to brag about now at 37- my knee is completely shot. Have

problems with my elbows, ankles and wrists. I walk around like I'M 80. I sure

would hate to see her like this at this age if at all preventable.

Vicki

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

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

[Guest guest]

Amy, I know how you feel and its frustrating to think of the wait ahead my

daughter had biopsy last june and we are still

awaiting the results please take care and know that there is understanding

out there. & Petra

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

> 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

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