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Any hypermobile kids or kids with EDS?

taryn30taryn30 member
in Special Needs
Just trying to find some moms who can relate. Thanks!
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Re: Any hypermobile kids or kids with EDS?

  • realisticdreamsrealisticdreams member
    Yes both of our daughters have type 3 and some medical issues because of it and some that aren't.  They are 3 & 4.5
    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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  • Tferr02Tferr02 member
    I have EDS and my 2 year old is showing signs of it. He can't get into the genecist until Feb though.
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  • taryn30taryn30 member
    Would you please tell me your experience? What were your symptoms? Was it progressive? Was pain always present? What would you do to help your child? I am feeling like I want to gain as much information as possible. Thank you!
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  • Tferr02Tferr02 member
    I didn't get diagnosed until I was 16. Growing up, I was constantly in casts because I would hurt my joints. High school is when it got the worst for me, i was in constant pain and so exhausted.
    I have hypermobility type, which is like the best EDS to have. Even though I have type 3, it is still common to have heart probs, stomach issues, sleep apnea, Raynaud's disease, horrible vision and migraines.
    I don't remember a day without pain, however growing up I didn't know any difference. I thought everyone had pain with every movement. I definitely have flare up years. There are huge variations of pain between EDS people. Excellent shoes and joint braces help me a lot.
    It's also very important to be well informed on EDS because sadly most doctors don't know much about it.
    With my son, I buy him very supportive shoes and I really encourage swimming . High impact sports are horrible for EDS patients. Floating in the pool helps my joint pain, and I wish I was a good swimmer. I'm also getting my sons heart tested to make sure he doesn't have heart problems.
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  • preggersINschool25preggersINschool25 member
    My son has a gene mutation that points to EDS and was diagnosised by our geneticist. He is only 2.5 and I have not been given much information. Looking to get him into Cincinnati's children's hospital at the EDS clinic when he is 6 (earliest they take kiddos). Other than being super flexible I think he dislocates his hip at night when he crosses his leg over his body. I know tie his legs together.


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