Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Raising Special Needs Kids Raising Special Needs Kids

Maybe found the missing piece to the puzzle?!

Posted by on May. 10, 2013 at 11:29 PM
  • 6 Replies
I got B's hospital records from 2011-2012 and was shocked by what I read in one of his neurology reports. This is what it said: there seems to be a familial connective tissue disorder here, most likely some sort of Ehlers-Danlos variant. And in another part he says: the mother herself can bend her thumb backward towards her wrist and has had surgery to tighten some ligaments. I suspect these folks are Ehlers-Danlos variants.

Wow! Just wow! This would answer most of our questions regarding B and myself! We both fit Ehlers Danlos syndrome almost to a T. The hypermobility type at least. I feel like the answers were right in front of me the entire time. And idk if any of you remember but I mentioned this syndrome on here once and wondered if I'd be crazy to bring it up. If I had known it was in the report, it would have saved me a lot of the hassle and pain I've been dealing with.

So now I need to figure out where to go from here and who to talk to. If we both have it, I want an actual diagnosis.
by on May. 10, 2013 at 11:29 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-6):
Mipsy
by Chelle on May. 10, 2013 at 11:45 PM
I would get with a geneticist. I believe EDS can cause bowel issues too which could explain your sons bowel issues
cheergurl84
by Member on May. 11, 2013 at 8:31 AM
It definitely can or that's what I read at least. I just can't believe no one mentioned it before.

Quoting Mipsy:

I would get with a geneticist. I believe EDS can cause bowel issues too which could explain your sons bowel issues
jjamom
by Michele on May. 11, 2013 at 10:21 AM
Wow! Isn't it amazing that they have that in the records and no one ever bothered to tell you? Geez! I hope you've found your answer.
cheergurl84
by Member on May. 11, 2013 at 10:46 AM
1 mom liked this
This alone was worth the $72 I spent on 50 something pages o his records. It's the piece I've been searching for, since he was tiny. To think it was right in front of us this entire time is a little irritating. But now that we know, I plan to use this info to help both of us get a diagnosis.

Quoting jjamom:

Wow! Isn't it amazing that they have that in the records and no one ever bothered to tell you? Geez! I hope you've found your answer.
jjamom
by Michele on May. 11, 2013 at 11:00 AM
Yeah, it's awesome that you have this answer, but I'd be a little pissed that no one ever bothered to mention it! That just seems crazy!


Quoting cheergurl84:

This alone was worth the $72 I spent on 50 something pages o his records. It's the piece I've been searching for, since he was tiny. To think it was right in front of us this entire time is a little irritating. But now that we know, I plan to use this info to help both of us get a diagnosis.



Quoting jjamom:

Wow! Isn't it amazing that they have that in the records and no one ever bothered to tell you? Geez! I hope you've found your answer.

letstalk747
by Joy on May. 11, 2013 at 7:10 PM

wow , yeah check into it

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN