It's Been Almost a Year...

I can't believe that it has been almost a year now since we first saw our Geneticist and got the diagnosis of Ehlers-Danlos Syndrome, suspect Hypermobile Type. I can still clearly remember the relief in knowing that we weren't crazy, that there really was a reason my daughter was struggling with things that other children her age were not. That her teacher and occupational therapist were correct, that something wasn't right with her hands/joints, and that those who said ignore it were wrong.

I will never forget all of those people who kept working with us to find the answer, each helping lead us down the path of discovery. They each gave me a piece of the puzzle, and without each of them I highly doubt we would have gotten answers so quickly.

In the past year so much has happened. We were able to get ring splints to stabilize her joints, which in turn made it easier for her to write. She has a slant board and pencil grip to also help with her writing. Now we are working with her school and the area education agency to put in place more modifications to help her educationally. She still has a hard time doing all of the writing that is really needed to complete assignments, and so we are looking at what other options we have for doing her work. Computers, an aide, etc. I'm so happy with how helpful the school and AEA has been, everyone has worked really hard with trying small modifications and giving her time to see what we really need instead of just rushing ahead and assuming we need more or less assistance than we might really need. I am really excited about our meeting next week to see what their suggestions are and give a few of my own too.

On a kind of depressing note, we pretty much decided that she shouldn't even attend PE class anymore. She was already very limited as what she was allowed to do (no contact sports, no high impact sports, nothing that stresses the joints) but at least she attended with her peers and participated in a few activities. However, given how many times she has come to school already in pain and needed to sit out, and the fact she has been hit by flying balls and the like more and more often lately, (including today) it was decided it just isn't a safe place for her to be. It was kind of sad for me to hear it, but in my heart I knew it was true. I did suggest that maybe we replace that time slot with something like typing, so she isn't wasting learning time. Even we we don't go with an AlphaSmart or similar computer type accommodation yet, at some point she will be so the more comfortable she is with them and the sooner she learns keyboarding the better.

I also suggested that we consider setting up a place she can go and rest and read during recess if she is tired or sore. Currently, when she stays in she can work at any of the centers in class, and sometimes have a friend too. I don't ever want to question her reasons for staying in, plus, if she is staying in to rest or for pain, I want to make sure she is getting rest. So a place to lay and read would be really helpful I think. It would allow for rest, give her extra time to work on her reading skills (something she will really need to help make-up for the motor skills) and it would also not be quite as "exciting" as just being able to do whatever she wants inside. Since there are three recesses (15 minutes twice a day, and 30 minutes once a day) she could maybe stay in one or both of the shorter ones giving her body some rest time, but still have the longer recess to socialize. Another issue we have is it takes her so long to get her coat, gloves, hat, scarf on that she doesn't even get much recess for the shorter ones. Then coming back in it takes a long time to take everything off again. I know it gets frustrating for her too.

So anyway, welcome to our journey - what it's like to be a Mother with a child who has Ehlers-Danlos Syndrome. Hopefully there are others out there who will find some comfort in the fact that they are not the only ones. :)


Valerie said...

amy, i've been wondering how things are going, i've tried to catch you for a quick chat here and there but i guess i keep missing you. and i really do miss you!!! sounds like you have been the super strong advocate that your daughter needs on her side, doing all the right things and making sure that she is taken care just as she deserves to be :) i'm glad things are going well and progress is being made. you have such a beautiful family!!! remember, once in a while, take a moment from all the hustle of being super-mom, and be PROUD of yourself for being the wonderful mom - and person - that you truly are :) love ya!!! (((hugs))))

Emily Weedon said...

I was diagnosed with EDS when I was a baby... My mom had it, my brother does too.

I don't remember having the pains that you describe your daughter having - but had and have hypermobile joints, easily torn and bruised skin...

I sat out PE in all of high school. It wasn't such a bad thing: I credit that extra reading and alone time for a kid who was already pretty booky for letting me focus on what works best in my body: my brain and my inner creative life.

I am a singer songwriter now myspace/deltatheband and teach music and write.

I get my exercise mainly through biking and (when motivated) yoga or floor type stuff and my boyfriend got me interested in working out at the gym.

There are lots of ways to stay fit.

The important thing is to remember what Alfred Adler - a psychiatrist who specialized in birth order and people with "defects"discovered: your weakest point often leads to discovering your greatest strength.

Good luck!

Anonymous said...

i was diagnosed with ehlers-danlos type 2 about 2 months ago. i have to go to a cardo doctor pretty soon to make sure i don't have the deadly type 4. it's such a pain to have. especially the skin. i wake up just about everyday feeling i was sleeping in a puddle of mud. and having my stretch marks bust open often doesn't look so attractive nor does it feel good. and i use to think that the reason my joints hurt so much was because i didn't exercise or that when i did exercise, it hurt because i don't do it on a normal basis. at least thats what every told me until i went to the doctor.

i wish you luck with yours. <33

MissTeenSuicide said...

Hey, I'm also diagnosed with EDS, and I'd just like to know where I could get ring splints? I live in South Africa so I'd have to order them over the net, but I just wanna know if you'd recommend a certain site or something? It'd really be appreciated.

BugsMom said...


You can get the silver ones from the Silver Ring Splint Company. Here is their website:

There are also silver ones made by another company called Murphy. Here is their list of vendors who sell the rings:

There are also plastic ones called Oval 8. You can google that and see what you can find.

Most people I've talked to online love the Silver Ring Splint Company the best. The benefit of silver is they can be slightly adjusted when fingers swell. Plastic won't do that.

Best of luck to you!!!