More seizures

Doose64 described a group of children with myoclonic and astatic seizures, often in combination with absence, generalized tonic-clonic, and tonic seizures. In this syndrome, astatic seizures (defined as seizures during which the patient is unable to stand) occurred suddenly, without warning, and the children collapsed onto the floor as if their legs had been pulled from under them. No loss of consciousness was apparent. At times the astatic seizures are so short that only a brief nodding of the head and slight flexion of the knees are seen. From the clinical description of these seizures, it appears that they are atonic.

In these children, the loss of postural tone often is immediately preceded by myoclonic jerks-hence the term myoclonic-astatic seizures. The myoclonic seizures in this disorder involve symmetric jerking of the arms and shoulders with simultaneous nodding of the head. Some myoclonic jerks are violent, causing the arms to fling upward, and some are so mild that they are easier to feel than see.

This disorder is more common in boys than in girls. The age of onset is between 1 and 5 years. With few exceptions, mental and motor development is normal before the onset of the illness. The prognosis is generally unfavorable, however, and dementia develops in most patients. Absence status is reported to play a role in the pathogenesis of the dementia.

I read this last night and panicked a bit. This was on the "Professionals" page at epilepsy.com. Little E has been having more seizures despite upping his dose from 60 to 125. Now we're moving up to 150. That's as high as we can go on the Topomax for the time being.
The seizures are "drop seizures", or atonic or astatic. The definition from above is for Myoclonic-astatic seizures. Myoclonic is for a single jerk usually followed by a fall. Like when he falls so fast and violently his arms shoot straight up into the air before his body collapses.
Had an appointment today with the neurologist, who is sweet, but is so giddy about me being a midwife and knowing his good doctor friend that the conversation runs all over the place. So far, most of our appointments have been followed by a "Let's wait and see" approach.

I brought in the above definition of Myoclonic-astatic seizures and the neurologist seemed perplexed. "Oh no, Doose is baaad. He's not a Doose case."
"Well those are the types of seizures he has. I've never heard any mention of dementia before." I said.
"Doose cases describes kids who are cognitively impaired and who have seizures."
"That's not what that description says." I said.
And then he redeemed himself. He looked at me and said, "These are fairly rare. All I remember of Doose is that it's bad stuff. Let's get out the text books and see what they have to say."
I appreciated his honesty. I hit my text books all the time. Almost after every birth. And often times when I'm perplexed by a little something at a prenatal or when trying to decipher a lab I don't usually order.And that's how it should be, you know.
So here's our brilliant neurologist admitting he didn't know or remember, and we're cracking open the latest editions of two popular texts on epilepsy (one British, one American).
Turns out Doose loosely describes a collection of behaviors/symptoms surrounding Myoclonic-astatic seizures but doesn't always imply cognitive impairment or God forbid, dementia. I think I gathered that these seizures are indeed quite rare, more common in boys, has an onset generally between ages 2-6~ Little E started at 28 months (worse if history of febrile seizures in the first year~ which Little E doesn't have), and that in children who are born with cognitive impairment issues and later develop these types of seizures, well, the prognosis isn't that great.
However, children developing on a regular course, meeting regular milestones, have a 50-85% chance of out-growing these seizures, with I assume, their mind and memory intact.

So I think I feel a little better about the whole thing. When he's seizure-free for a little while, we forget about this issue (still medicate of course, but it's not so heavy of an emotional burden). But when the seizures comes back despite the medicine, and he smashes his face into a table, or cracks his head on the floor, we all feel so vulnerable.
I feel like we can't leave him alone, we can't take him out, ugh! I just want to hibernate with my baby bear until he out grows this crap!
G was wondering out loud last night if Little E would ever be able to work and live on his own. Will he have to live with us always and collect Social Security at 18? Ack, one day at a time! I remind him. But I wonder these things too, I just don't say them out loud.

Oh well. Today an increase in meds. Tomorrow another day. The kids are happy and such good children. Really and truly. Miss S is full of sass but her wit gets her through without getting into trouble and E is sweet and gentle and not the least bit spazzy (ADHD is another common theme with his seizure disorder).

The other morning I asked G if he dreamed that night. He told me about this really crazy nightmare that involved politics, Big Brother type secret forces, and the government re-drawing the US map borders to eradicate some Texas town. Yowza.
I told him my dream: I made my friend T some lentil soup. Later I realized I forgot to put salt and pepper in it, so I ran to her house with my salt and pepper shakers in hand and sprinkled them in her mail box. Completely irrelevant happy little dream.

Later that day I told my friend T about the two dreams and laughed about how pointless my dream was, how boring my subconscious must be.
She said, "I think your day to day life is stressful enough between prenatals, births, post dates, crazy placentas, jaundiced babies, Little E's seizures, trucking kids to school and just being a mom...your brain probably loves to just relax and have peaceful, boring dreams while you sleep!"
Good point.
Now I'm off to sleep to have lovely boring dreams about folding laundry or something along those lines.