MAE -Gretchen

[Guest guest]

Hi Gretchen,

MAE is Myoclonic Astatic Epilepsy of early childhood, otherwise known as

Doose Syndrome. In a similar spectrum to Lennox Gastaut, but with different

predominant seizure types (myoclonics absences and drops, rarely tonics and

focals) and a different EEG pattern.

Spontaneous remission is definitely possible with this one, often without

any specific treatment changes, it can one day just 'stop'. Average duration

of the seizures in those who outgrow it is 1-3 yrs after the first seizure.

's last seizure in late Dec 03 was 3 yrs 6 mths after his first one,

so dunno whether this has been his fate or not. One can but hope....

Prognosis varies, some are absolutely fine cognitively etc despite the

mths/yrs of persistent seizures, others go on to have quite severe delays.

Some stop having seizures, some don't, some respond to meds, some don't...so

a huge range of possible outcomes.

Percentages for likelihood of remission vary depending on which journal

paper you read, but it seems to be pretty much a 50/50 scenario on the

whole.

Hypersensitivity to meds and a tendency to paradoxical seizure reactions

from quite a few AEDS seems to be a common trait with a lot of Doose kids,

with the keto diet and ACTH (steroids) are now being touted as the most

effective treatments for this condition. So your expereince with Ethan and

adverse AED reactions is certainly one we can relate to, as can many other

parents of Doose kiddies that I am in fairly close and regular contact with.

So these 'episodes' are being termed, what? Psuedo seizures sof some sort?

Cripes, like the ones we DO know about aren't enough to worry about?

Hold onto that 'life may actually be normal' concept...things are sounding

positive enough over that way to certainly be daring to think that way

Know the one though, do I or don't I set myself up for yet another

fall....

----- Original Message -----

> Hi ,

> I'll have to check out your family photo.

> After what went through with the seizure cycle, I completely

> understand why you are sticking with the topomax. I'm so glad it

> hasn't affected him too adversly. You were lucky there. What is

> MAE? Is there a good chance will outgrow his seizures

> completely?

> We met with our doctor this week, and he thinks Ethan was one of

> those rare cases where the AEDs actually made the seizures worse.

> He thinks the diet is completly working for Ethan, and he even

> lowered the ratio to 3.5:1. For so many years, doctor visits always

> left me feeling worse, but since starting the diet and since meeting

> our new doctor, each visit gives me new hope.

> In April, one month after starting the diet, Ethan's old seizures

> stopped, and this new type started. They can last up to 30 minutes,

> but seem very benign otherwise. He just looses consciousness as

> though he were asleep. Since they don't show up on the EEG and

> don't fit other symptoms of seizures (Ethan very conveniently had

> one the doctor's office the other day), the doctor thinks they are

> not really seizures. We are going to start biofeedback and look for

> other ways to stop them. I am so thankful for this diet, that has

> allowed us to get Ethan off AEDs. And I am so thankful for this

> group that helped keep me going through the times when I feared the

> diet wasn't working and wanted to quit. I am even daring to think

> that Ethan might have a completly 'normal' future. What a concept!

> Gretchen