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White-Sutton syndrome

Brain & Nervous System | Last Active: Sep 29, 2023 | Replies (29)

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@rwinney

Welcome to Connect, @bethbrown604. I can't imagine how difficult this has been, both for your baby and yourselves.

Unfortunately, Deb has not posted since 2018 and I'm not sure if you will receive a response from her, but am hopeful someone else chimes in with their experience. I'm not familiar with the syndrome but found White-Sutton Syndrome Foundation which shares family stories, research and other helpful information:

White-Sutton Syndrome Foundation -
https://whitesutton.org
Beth, how is your son doing now? Are his symptoms being managed?

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Replies to "Welcome to Connect, @bethbrown604. I can't imagine how difficult this has been, both for your baby..."

Hi! He is doing extremely well. Bleed has cleared and is acting completely normal except for some low tone issues, which he is receiving PT for. He was in the hospital and ventilated for his seizures so they say that's to be expected. He does have some hydrocephaly, opposite what you would expect of white Sutton, and his diagnosis was by chance because they ran a full gene panel trying to confirm meningitis. We are praying he has a mild form of the disease but we just won't know for a few years. Which is so hard.