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Thoughts?

taryn30taryn30 member
in Special Needs
Hello ladies, we are going for our second geneticist meeting; this one is with connective tissue specialist. They are certain my son has a connective tissue disorder but don't know which one. I have been writing down a list of questions to ask and wanted to see if anyone had anything I hadn't thought about. Please share any thoughts or advice! I truly appreciate it!
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Re: Thoughts?

  • typesettypeset member
    Good luck and please let us know how it goes.
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  • taryn30taryn30 member
    Thanks! We are waiting in office!
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  • CrocusPocusCrocusPocus member
    Sending positive vibes!!
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  • realisticdreamsrealisticdreams member
    Both of my girls have ehlers danlos syndrome. I'm Interested to see what they say, good luck.
    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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  • taryn30taryn30 member
    Hello ladies, it is classic ehlers Danos.. Please share your experience Realistic Dream with your daughters. How old are they? What has helped them? His OT has recommended Murphy's rings for his hands. Do you know anything about them? He is 3.5 years old. I appreciate any advice you could offer. Thanks for listening!
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  • taryn30taryn30 member
    RealisticDreams, do they have pain? In my googling, they are saying pain is very common. What type do they have? Thanks again!
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