begnin hypermobility syndrome - help???

squishywife

I *think* this is exactly what is wrong with Taylor.  Granted, this is a self disgnosis via google, but I am fairly confident.  I would appreciate any input.  She is very "loose" for lack of a better term.  I have even taken her to the dr because I was sure I pulled her arm out of the socket once...nope...he said she is just "hyper-flexible" more than most babies he sees.  Last week she fell with her arm completely straight across her back and it didn't even phase her.  she has been pushing up on all fours since she was 8 mons old, rocks, and falls...as if her arms are "wiggling".  I thought for sure she'd be crawling by 9 mons, nope.  now today she is 10 mons, and nope.  granted, I know kids who didn't crawl until 15 mons, so I realize it's still early. 

This is my third kid, I'm not a newbie.  I just feel like something is off.  I can only explain as if she is "loose".  She bears weight on her legs.   Loves to stand (holding on to me).  Just this week started going from belly to sitting.  She didn't even roll over until she was 8 mons old. 

 Other thoughts? I really don't think she has low muscle tone as she doesn't seem to meet all those requirements.

My real question is would this be something that would require intervention (PT/OT)?  Until this week she was with me 24/7 and she is the kind of baby you are NEVER away from.  I sit on the floor playing with her (tummy time, standing holding on to me, etc).  Now she is in daycare so if OT/PT are needed they will come to daycare.  Thoughts?

Cbidt's girl

I know nothing about the syndrome you mentioned, but in my experience working with families I have often heard the refrain "the pedi isn't concerned, but I know it's something..." and 90% of the time it seems the parent was right. It just seems like pedi's look for the major life threatening stuff, but often dismiss developmental stuff or other issues until much later in the game. My advice would be to push for the referral if you need in to see a specialist. Good luck

lazysusan

I'm an EI PT, and based on the milestones you are giving, it sounds like she would qualify for services.  How is she able to sit and push up on her belly?  Does she have any means of moving from place to place?  It sounds like she needs more strength than average to help stabilize her joints to give her a solid base to move from.  Bracing may also help stabilize her.   you could also take her to an orthopedic specialist to evaluate her joints.  

squishywife

She gets around now by rolling and doing this backwards scoot on her back pushing herself up with her head (yes, it looks REALLY uncomfortable). 

The other thing that concerns me is that when she moves or I pick up/put her down her bones crack like when someone cracks their knuckles. 

I will bring it up more at her appt next. 

Marce921

I know nothing about what you're talking about but I can tell you that both my boys have crackly bones. There are times when I pick them up and their bones crack and it freaks me out. I've asked my ped about it before and she says it's normal. 

squishywife

Thanks Marce! I appreciate the input!  I am glad its normal because it totally freaks me out.  esp when I pick her up to nurse her in the middle of the night and it's totally quite except for the cracking sound!!!!

Marce921

Your welcome... I hope all is well with your little one and she's just taking her time with her milestones!

WereWitty

What you're explaining doesn't sound terribly out of the "norm".  But a few things you mentioned did strike a chord with me.  My husband had VEDS (Vascular Ehlers Danlos) a rare connective tissue disease.  The increased hypermobility is a common characteristic of Ehlers Danlos.  Here's a link to some further info.

https://www.ednf.org/images/stories/leaflets/soyouthinkyoumighthaveeds.pdf
I wouldn't worry about VEDS in your daughter but classical or hypermobile EDS would be a  possibility.

You can also just check out ednf.org.  I'm sure it's nothing but it doesn't hurt to do some research to make yourself feel better. 

 

Katesmama

The above ^ is from me.  I forgot which log in is which.  And while I'm not here often a few people might remember me and know I'm not a total nut job (just a partial nutjob   )

 

Carol*Brady2

My DD does have hypotonia & the Ped was not concerned but I had my Sis look at her & she diagnosed her--went back to the Ped & she agreed. She did start PT & later OT through EI at about 8 mo. By 15mo she graduated out of both. Definitely wouldn't hurt to get some therapy if needed. Good luck!