doose

  1. M

    hi all! I am here attempting to learn how to help my son better

    My now 3.5 year old son was diagnosed a year ago with Doose syndrome via mutation of the SLC6A1 gene, he had started having seizures at 5-7 months of age and I had attempted to address this with our pediatrician and the referring neurologist for a year before his actual diagnosis but it took his...
  2. M

    Doose epilepsy & Onfi wean

    Hello- I am new to the forum, and looking for insight to help my 5 year old son with Doose syndrome. We have been battling varying seizure types (GTC's, drops, absense, myocolonic jerks, etc. for about 16 months now. Failed 7 AED's, and currently on Keto diet and 35mg Onfi daily. Still not...
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