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Fun with genetics

Well, it's official, GirlWho has Ehlers-Danlos. Yup. Having her diagnosed as a child should hopefully prevent her from being in the position I'm in, and it seems that she's not quite as hypermobile as I am, which is a good thing. She will get modifications for PE under a 504 plan. I'm not sure how that will work yet.

I'm glad we followed our gut instincts and kept her out of gymnastics and soccer - she's supposed to stay out of contact sports and she's to avoid bearing her weight on her her shoulders. Also, no throwing, so softball and such is out. The doctor recommends swimming for her, but not competitive swimming, which is how I first injured my shoulder as a child.

She's taking it all in stride. We explained to her long ago that she might well have EDS and that learning about it now would be hugely beneficial. She has also seen that I have been improving, albeit with really hard work, so she knows that she has a certain measure of control over her physical condition. She's being quite a trooper. But she's knows she's not "average." Or "normal." It kind of bugs her that she can't walk into a store and buy shoes - we both wear very narrow shoes, which is actually a feature of our condition (EDS may be related to Marfan's, and shares characteristics, including long, narrow limbs and feet.) And now she won't be doing regular PE, and he PE teacher is a bit of an asshole who fancies himself to be a drill instructor. DaddyWho may have to regulate.

We'll see. We have a conference in a few days. I'm just glad she has a diagnosis now, instead of when she's 27, like me. I just assumed everyone hurt all the damned time.

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Comment by mcglory13 on November 3, 2011 at 8:52am: Well, I'm really sorry she has it. But I'm glad you caught it this early and that you can help her maybe avoid some of the pain you've experienced.

Comment by mightyninjamom on November 3, 2011 at 4:12pm: What an awesome kid to be handling it so well! Good for her. I'm sure DaddyWho can school that PE instructor in under 3 minutes...

Comment by Herasmus B. Dragon on November 4, 2011 at 5:19am: I too am glad she knows now and can take steps to avoid future pain. I need to get my girls tested for my own genetic condition to see what we have to do for them in the future, but it's not something they have to worry about right now. So does she have a rolling backpack?

I have zero doubt that DaddyWho will show that guy what REAL drill instructors can do to you when you're alone, if he fails to follow the plan.

Comment by Mamawho on November 4, 2011 at 6:53am: The rolling backpack was a gigantic failure on wheels last year. We got her a good backpack at REI this year that distributes weight well, and she seems to be doing well with that. And the mesh pocket for the water bottle hasn't busted, which is a record. Normally it's shredded by mid-October.

When she hits middle school, she'll be able to have 2 sets of books-one for home and one for school- according to a 504 plan, so she won't ever have to lug around a heavy bag. That will make a huge difference for her. I did untold damage to my shoulder carrying bookbags and equipment.

I was super-impressed with Children's National. The doctor came in, introduced himself to me and DW briefly and then turned to GW and said "Hi, Maddie. I'm Nick." And they started chatting. Totally put her at ease.

Comment by mightyninjamom on November 4, 2011 at 7:03am: Aw geez, I didn't even think about backpacks, even though I got B a messenger bag this year. (It's his first year with homework.) I didn't know you could get two sets of books! That would have been awesome - I walked home a lot, and when it was during sports season, not only was I carrying my backpack with my homework, I also had my huge duffel with all my running gear. That doctor sounds great. Why can't I find a doctor like that here?

Comment by Boring User Name on November 4, 2011 at 7:35am: I love the doctor story :-) I'm so glad she's taking the news well and you are able to start addressing things now.

Comment by ruth on November 5, 2011 at 4:43pm: What everyone else said... I'm sorry she has the condition, but glad you were able to find out early and that she's taking it in stride. The accommodations should make a big difference for her. And yes, the doctor sounds awesome!

Comment by Joe Mama on November 6, 2011 at 7:22am: Sounds like the best possible way to hear bad news - surrounded by positive people with concrete ideas about how to make life better.

Comment by ks on November 6, 2011 at 5:43pm: I'm sorry she has it, but I guess it is good to know now, so she can learn to manage it. And her doctor sounds awesome.

Comment by G.G. on November 7, 2011 at 10:18am: I big hear the doctor. I'm so glad that if she has to experience that A) she has you as her champion B) early on treatment

Take care and keep us posted on GirlWho's progress.

Fun with genetics

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