Tuesday, June 2, 2009

seizure-wise: follow-up

Have we seen any improvement over the past year with the injection meds, liquid meds, tablet meds, capsule meds, or dissolvable meds?

Well, let's see...

Where we were:

May 29, 2008, kicked off this endless list of meds. Austin was given his first injection of what we thought was "liquid gold," aka ACTH. Although extremely helpful in some cases, it was 12 wks of sheer HELL for us. It only seemed to make clusters more frequent, more intense, and much longer (not to mention agonizing side effects -none serious, just extremely inconvenient). It very well may have been that it had no effect, and the IS was just progressing. In any case, Austin was having anywhere from 30 spasms to 170 spasms per cluster (x 4-7 clusters per day). So intense that he'd get little goosebumps, and the hair on his head would stand straight up as if we'd rubbed his head with a balloon. He'd grunt, his eyes would water, and his arms and legs would almost always extend outward (only if laying down). If sitting up, the force would nearly knock him over.

Over the following months several more AEDs were introduced.
(In order: zonisamide (Zonegran), Keppra, vigabatrin (Sabril), valproic acid (Depakote), Banzel, clonazepam (Klonopin) -this is our entire AED list since ACTH.

We went from nasty, chill producing clusters to almost no clusters -but new forceful body dropping seizures began.

Then, back to lighter, more subtle clusters + lighter body/head drops.

Where we are:

He may not grunt or "crunch" when he has clusters anymore, but they are certainly just as prevalent as they were one year ago. The number may be down per cluster, but that old feeling of not wanting to wake him because I don't wanna see seizures is back and just as strong.

Drops are somewhat easier on him, but not enough to eliminate the need for a helmet.

We are currently on three AEDs: 300mg zonisamide, 9ml valproic acid, and 0.375 mg clonazepam.

It seems as if we've made a full circle. We started with clusters and only clusters. Over time, those faded and were replaced by drops. Only now, they are back with a vengeance...not to mention the drops. On the upside, almost all are lighter in intensity than before.

One fact that has always been consistent is that there is no consistency. Regardless whether or not we're trialing a new AED, Austin's seizures fluctuate frequently. One day he may have 25 (that's a good day) and the next he may have in excess of 100. For a brief period of time (maybe 2 months), we would see them as low as 10-15 a day about every other week -again still not consistent.

Looking at the entire picture, seizure-wise, it doesn't seem as though we've made any progress.

Other-wise, that's another blog...


Colby said...

Isn't it interesting to go back over an entire year and realize just what you have been through with your child? It seems like Austin is so much like Colby in that there seems to not be much rhyme nor reason to the seizures...They get less intense and then more intense...They change in form....They wax and wane....I think that makes dealing with them much more difficult...

Maybe one of these days, we will hit on the magic bullit....


baby trevor's mommy said...

I think the unpredictibility is one of the hardest parts...

We had a great day on Monday...one morning cluster...and then none until the evening! Although ironically Trev was super cranky. Ever since...it's been non-stop seizures...and happy Trev. Go figure.

I don't know...

No nuggets of truth here. Just another mommy feelin' ya!



Sophie's Story by Elaine said...

Sounds just like the first year of seizures for Sophie. Nothing made sense. She even had 33 days of no seizures for no apparent reason. Drop seizures started up and stopped...again for no apparent reason. But after about 2 years, they leveled off and became a period of what I called her baseline seizures...about 50 a day. Starting a new med never seemed to decrease them but weaning always increased them but then she went to baseline within a few weeks after the wean. Waking up in the morning was always the worst...the biggest and most intense cluster.