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← Return to White-Sutton syndrome
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Brain & Nervous System | Last Active: Sep 29, 2023 | Replies (29)
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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.
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Ohhh, I'm so pleased to hear your boy is doing extremely well! Have you had a chance to check into the White Sutten foundation website I provided? I'm really hoping you're able to gain insight in reading family stories. Ironically, today was our Connect Mentor meeting with a Mayo Clinic genetic counselor as our guest speaker. She confirmed that going directly to the foundations website is a great resource and also suggested to follow up with your son's genetic counselor through patient portal in order to keep communication flowing and ask any questions is helpful.
May I ask if you are satisfied with the results you've received thus far from his testing and the current hospital and doctors, or might you consider a second opinion?