My son diagnosed with MAE/Doose

[kezzak1]

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 having the horrible side effects, not able to speak, formulate words etc. and he is still having the drop seizures about 15-18 per day.

I am hoping to hear from someone. Thank you!

 

[Nakamova]

Hi kezzak1, welcome to CWE. And a big hug to you for all you must be going through.

You might want to check out The Nursery here -- it's for parents of kids with epilepsy. Additionally the sites below may be helpful as well.

www.doosesyndrome.com

www.massgeneral.org/childhoodepilepsy

www.epilepsy.org.uk/info/astatic.html

www.ilae-epilepsy.org/ctf/myoclonic_astatic_child.html

www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Epileptic+Sy...

Best,
Nakamova

 

[Bernard]

Hi kezzak1, welcome to the forum. :hello:

Here's a thread where members are discussing Doose Syndrome:

http://www.coping-with-epilepsy.com/forums/f42/prep-ing-4yo-keto-6292/