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Recent Williams Syndrome Diagnosis

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in Special Needs

My 6 month old son was diagnosed with Williams just last week via FISH test.  The only real symtoms were very minor pulmonary stenosis and ingenial hernia.  I always thought he had a cute little face (now I know it is elfin-like) but he looks very similar to me when I was a baby.  None of my doctors recommended FISH, but I requested it due to the cardiologists 'necessary rundown' as he called it - in which he mentioned Williams sort of non-chalantly.

Anyways, we are in shock and hoping for the best.  Little man is meeting all of his milestones thus far although he was delayed in smiling and has had such a time with tummy pains (on Elecare now for MSPI) and reflux.  Honestly making him feel better is my top priority.

I'm hoping there are other Williams moms out there for me to touch base with.  We are so new to this but want to make sure we take the right first steps.  So far we've contacted our state's Infants and Toddler's program and it looks like LO qualifies for PT, OT, and ST for free - and although we don't see the need yet it is nice to know we might get a head start.

My husband and I are sort of going through the motions right now but would like to connect with others who have been in our shoes.  We are very scared! 

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Re: Recent Williams Syndrome Diagnosis

  • ToastieSimonsToastieSimons member

    Congrats on your LO!  WS was a possible diagnosis for our son but the FISH was negative and he ended up with a different diagnosis.  

    I know 20/20 did a segment on kids with WS.  Here is the link if you feel interested/prepared.

    https://abcnews.go.com/2020/video/williams-syndrome-children-friend-health-disease-hospital-doctors-13817012 

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  • rboisvertrboisvert member
    I have no experience but a friend of mine has a sister with Williams (she's in her 20's now) and his mom has a great foundation.  https://www.wsai.ie/  They live in Ireland (met them when I was studying in Limerick) but Ann has devoted her life to helping families touched by William's Syndrome and I feel like they have done some things in the US.  Congrats on your new little one.
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  • realisticdreamsrealisticdreams member
    I know a local mom (she's been to my house once) whose little girl has Williams Syndrome.  I could give you her contact info if you are interested.  She is a little over 2, I believe.
    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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