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Beckwith-Wiedemann Syndrome

jerica0003jerica0003 member
in Special Needs
My almost 5 month old son was just diagnosed with BWS. Are there any other BWS families here?
Lilypie Third Birthday tickers Lilypie First Birthday tickers Brant- diagnosed with Beckwith-Wiedemann Syndrome with hemihypertrophy in October 2012.
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Re: Beckwith-Wiedemann Syndrome

  • adge1119adge1119
    my son does not have that syndrome but a different one.  you should try mommies of miracles if you have not looked into them already.
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  • realisticdreamsrealisticdreams member

    we have used madison's foundation to link with other parents in the past as well, so you could check that out.

    GL 

    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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