Myoclonic - Astatic Epilepsy

 
 
 


Myoclonic-Astatic Epilepsy aka Doose Syndrome is frightening! I know, I am the father of a child affected by the disease. But don’t despair, treatments are available and your child will likely outgrow the seizures. Unfortunately good information is scarce and most doctors have never seen a case. Those who have will likely see only a few in their career.


My goal for this website is to help you avoid the same mistakes I made and save you time trying to find answers for you and your child.


The best place to start is the description of the syndrome. After that consider the differential diagnosis. Then take a look at the treatment options. Finally there is a community forum where you can discuss your experiences and seek support from others affected by MAE.


Don’t worry - your child was wonderful before the seizures started, and is still wonderful now!

 

Help! I am desperate!

Even if you don’t have a formal diagnosis yet you need to take quick action on certain issues:

  1. 1.Get a helmet. Your doctor can write a prescription for a helmet. If you can’t wait go buy a bike or karate helmet right away. Then get a prescription helmet. We found the Danmar to be the best as it had good coverage of the forehead.

  2. 2.Contact your state’s childhood early intervention service or disabilities board and get a case worker. Your child is going to need lots of intensive therapies and you likely have no idea where to start. You could also try an autism agency. Your child is not autistic, but the agency will know all of the ins and outs of “the system”.

  3. 3.Find out if your state has a Medicaid waiver, usually called “TEFRA” or “Katie Beckett”. Even if you have employer sponsored insurance you are going to have financial challenges. Now is not the time to be proud. Get the Medicaid or ask for charity. It is for your child, and the rest of us don’t mind pitching in financially to help.