Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
DOOSE SYNDROME
Sun, 03/25/2007 - 18:16Hi! my 5 yr daugther was diagnosed with Doose Syndrome (Myoclonic Astatic Epilepsy). Can anyone help me in getting information about this syndrome? It seems that there is not too much information or I am not looking in the correct places. I will appreciate any orientation on this. Thanks...Jorge.
Comments
Re: DOOSE SYNDROME
Submitted by Sam. on Mon, 2007-07-02 - 08:50
have you found enough information yet, Jorge? My son has myoclonic astatic epilepsy.
Re: Re: DOOSE SYNDROME
Submitted by Missyat on Mon, 2007-07-02 - 11:42
My son was dx'ed with MAE 6 years ago.
It is genetic, and can skip up to 6 generations. Lately the epi have been doing the SCN1A genetic testing for that specific gene, if that gene is mutated then the epi can dial in on certain meds...
Unfortunately, my son does not have that gene mutated, and we are currently working on a med cocktail.
Of the children with epilepsy only 1% of them have this dx. Copy and paste the links and find someone near you. Support is a major key in dealing with this dx.
Re: Re: DOOSE SYNDROME
Submitted by Jorge Lango on Wed, 2007-03-28 - 09:26
Thanks for the information provided, is very usefull. We are having a hard time now trying to deal with this issue the best way possible. Still we do not find the correct medication for my daugther since this was a recent diagnistic. Support groups are a good help. Thank you very much and good luck to all. Jorge.