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EDS parents

di0607di0607 member
in Special Needs
Please tell me about your child's symptoms and the process to diagnosis.
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Re: EDS parents

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    taryn30taryn30 member
    My son was diagnosed by a geneticist by a clinical exam. He has hypermobile joints, especially his fingers. He easily bruises and has soft skin. He was diagnosed in May and we are still trying to educate ourselves. What are you noticing on your child?
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    realisticdreamsrealisticdreams member
    Hey there. Yes, both my 3.5 and almost 5yo have EDS. I am mobile right now but will write more from the computer today!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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    realisticdreamsrealisticdreams member
    di0607 said:
    Please tell me about your child's symptoms and the process to diagnosis.
    OK.  We didn't really know JUST how flexible my 4yo was.  She is super hypermobile even though she's pretty chunky (over the 100th%).  I had read about EDS a while ago and thought some of the symptoms fit. It wasn't until she started having significant leg pain last year that I asked the neurologist if she could have this.  She agreed and sent us back to genetics (who we had already saw 3x) specifically to look at EDS.

    The diagnosis for most forms of EDS is based on clinical findings and the beighton score.  If you google beighton score you can do the little test at home to see if they are hypermobile.  

    Peytons skin is very very soft but it isn't really stretchy.  She also has some cardiac issues. She broke her wrist in 2 spots from falling in our hallway, on carpet.  She can do some crazy stuff with her fingers.  So basically for us, because of her age, we went to genetics, they said she met the diagnostic criteria but because she had so much else going on they didn't want everyone to attribute it to the EDS so they gave us a 'tentative' dx.  

    In the end her insane leg pain, loss of reflexes and weakness was a re-tethered spinal cord which took us the majority of this last year to figure out.  
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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    di0607di0607 member
    He kiddo is def more flexible than average. He scares his teachers and us by his movements sometimes. He managed to get nursemaid's elbow on both sides when he was younger (he will be 4 in dec). No other broken bones or dislocations because we tend to be very cautious with his movements. His skin is also soft but not very stretchy. He has asthma and otherwise healthy. He does complain about random aches and pains but not sure if they are real. I have an autoimmune history and am suspecting I may have eds as well (that discussion is for another board :/ ).
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