Ehlers-Danlos Syndrome User Group
advice for 7 yo daughter
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
163 members
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advice for 7 yo daughter

I need your advice.......I really think that my daughter (7 yo) might have some chiari sx going on along with possibly hypermobility and tethered cord sx. None of it really started with her either until after the chiropractor got his hands on her (maybe it was just coincidence). However, 2 yrs ago it started out of the blue when she started complaining of neck pain then woke that night crying that her legs hurt. She couldnt walk flat footed...she walked on her tiptoes and then slid down the stairs on her bum. She eventually went back to bed then the next morning when she woke up she couldn't pee at all. I called the Dr who took it very seriously...she had me take her right in and the 1st thing she did was a neuro exam on her (of course it checked out fine). She was very concerned and ended up making us stay until she voided....she kept giving her popsicles and drinks etc... she debated whether to send us to urology to have a bladder scan done. She finally voided and it was sorta blown off. She tends to have a hard time emptying her bladder at times. As time went on she really began complaining about neck pain to the point that she'd disengage in activity due to it. I had to keep a log of how often for the Dr. Then last fall she started complaining of her eyes "bouncing" when her neck was flexed for any length of time. She eventually was sent to a pedi neurologist for work up.  He did a MRI of her c-spine which they claimed was normal and sent her for PT.

Twice now this year (including TODAY) she has wet her pants at school. This is highly unusual - she never had accidents as a toddler....nevermind as a 2nd grader! She said both times she really had to go, made it to the bathroom but as she was pulling her pants down she just couldn't hold it....her entire bladder empties on her clothes! The 1st time I sorta chalked it up to waiting too long but now a 2nd time and I'm freaking out. Right away I'm thinking of a tethered cord.....I've read that during periods of growth it can cause the most problems in kids....which makes me think back to 2 yrs ago when she couldn't pee and now these incidents of incontinence.

I'm playing detective here but EDS is very genetic and if you have EDS you can have tethered cord..... she is forever twisting her ankles, seems clumsy at times, and has started having the crazy veins all over the place like I have - her chest looks like a road map!

What would you think? I'm seeing the geneticist tomorrow to be tested for EDS so obviously if I'm positive I need to have her tested. I'm feeling so sad for her if she did get this!

We have a new pediatrician for her who I did not particularly care for at her physical. I told him about me being worked up for chiari and tethered cord etc... and asked if I have them if we will test her and his answer was clear I'd have to fight for it. So how would you proceed? I've read if tethered cord is caught early in kids they can release it and it can be fixed. I'd certainly want this addressed immediately.

Your input is much appreciated.
1 Comment

  I am going to copy and paste my reply to this post from the Chiari forum-

  Hi...ur thoughts r very well on target...I have both EDS and TCS....and have had issues with not being able to void...I have to concentrate...no one can be talking to me or I can not be doing nething else like brushing my hair...lol...u know when running late...neway I have to focus to go...

Does she also have bowel issues?

As for her ankles....watch when she sits...look at the position of her feet, do they tend to lay on the sides instead of resting on the bottom of her soles....I even stood on the sides of me foot/ankle...it felt natural to me, I never thought nething of it  until my MIL said something...it took me a few yrs to break the habit....I could no longer stand like that now....but someone as young as her could and it would be a neon sign flashing EDS.

The thing with TC release at ne age it can re-tether....so it may not be a once and done thing and u may think.....

I am 53 and have yet to have mine released....but was told I need to....many of my symptoms had calmed down after my PFD and I have had some return....UTI, leg spasms, muscle spasms....and that weird lower back pain that had me in the ER this summer....still no answer there, but I have a feeling it may be the TCS.

Ur DD is having much more issues, and instead of asking for TCS and chiari work ups...ask for a urodynamics test done on her with her bladder issues....they may find it incidentally....get tests for the symptoms she has
and let them find what they may. I am sure if she has TCS or CM it will be found.
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