doose syndrome

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...

tj went to the doctor this morning and we got a new diagnosis. our doctor changed his diagnosis from LGS to Doose syndrome. because he shows very little developmental delays that are commonly seen in LGS patients. while i am very glad that he might not have LGS (i say might becuase this is his...

Hi! My name is Monika, I am from Sweden and I am new to this group. My son Axel (2,5 y) was diagnosed with MAE soon three weeks ago. My son has four kinds of seizures: Grand Mals, Drops, Absence, Myoclonic. After the third Grand Mal we started with Valproat and got rid of the Grand Mals and...

Hi, I have posted once or twice before but had not formally introduced myself. My son, Aidan, age 6, has Doose syndrome and we have been battling the beast for 2 years now with no help ( and lots of aggravation ) from AEDs. He has tried 10, I think. We are now doing neurofeedback and some...

Hello, I am brand new to this site. My son was just diagnosed with MAE/Doose. We are devastated. I would like to hear from anyone whose child has this and what positive outcomes they have had. We tried Keppra for 2 weeks, did not work. We are now titrating up on Topomax. So far he is...

We're getting ready to put by 4yo daughter Katie on the strict Ketogenic diet this month. No one else in my or my husband's family has epilepsy so this has been a learning experience for all of us. Katie got her first seizure (a grand mal) in Sept '08, just before her 4th birthday. In...