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MPS 3 found as cause for my son’s dementia like symptoms

Brain & Nervous System | Last Active: Aug 6, 2019 | Replies (6)
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@lisalucier

Hi, @adah - getting a diagnosis finally for your son must be a relief. It sounds as though you have been a strong advocate for him.

Have you had your consult with the doctors and the genetic counselor you mentioned would follow the genetic testing? If so, will you share anything you learned you feel comfortable sharing?

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Replies to "Hi, @adah - getting a diagnosis finally for your son must be a relief. It sounds..."
adah | @adah | Aug 6, 2019

Yes, We had follow up with genetic team at Childrens. The MPs lll B affects the brain and central nervous system. He has a missing enzyme that is critical for the body to break down waste. Since it can’t be excreted from the body, the waste destroys the organs. There is No Cure and no clinical trials at the present time. Going for a swallow test tomorrow, and echo of heart Friday. He will have a number of Drs.

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