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DOOSE SYNDROME
Sun, 03/25/2007 - 18:16Comments
Re: DOOSE SYNDROME
Submitted by rayshelle on Sat, 2012-06-02 - 12:05
Hey
I know exactly how you feel i am on a mission myself in finding someone who can really talk to me about this my daughter is 6 she was diagnoised of doose syndrome she is on eplium and keppra on an increasing dose but still have like 30 different attacks a day my heart is broke honestly!!! im living in cork ireland and have resently joined the epilepsy society but to my dissappointment they have no information on this or have another child with this!! I dont mind where i have to travel or what i have to do im desprate for someone who can relate to me and help with information or technics .... she also has a learning disablity and it effects her coo ordination and motor skills!!! Im going to check out the links below but id love some contact with real people dealing with this !!!
Thanks Rachel x
Hey
I know exactly how you feel i am on a mission myself in finding someone who can really talk to me about this my daughter is 6 she was diagnoised of doose syndrome she is on eplium and keppra on an increasing dose but still have like 30 different attacks a day my heart is broke honestly!!! im living in cork ireland and have resently joined the epilepsy society but to my dissappointment they have no information on this or have another child with this!! I dont mind where i have to travel or what i have to do im desprate for someone who can relate to me and help with information or technics .... she also has a learning disablity and it effects her coo ordination and motor skills!!! Im going to check out the links below but id love some contact with real people dealing with this !!!
Thanks Rachel x
Re: DOOSE SYNDROME
Submitted by frhale on Tue, 2009-03-03 - 14:06
My 3yr old possible has this. The dr. said all his symptoms point in that direction. He has 5-20 drop attacks daily. He is on 3 different meds 3 time a day and still having attacks. This all started back in september. We are now getting ready to start the Ketogenic Diet. From what we have read it is one of the best treatments if meds don't work. Oh and the Genetic testing came back neg. but only 30% of the kids that have it come back positive.