Sunday, March 22, 2009

Hope Springs Eternal

So, the beginning of this month, Taylor and I made a trip up to OHSU in Portland for Taylor’s video EEG monitoring. That is always so much fun…not. We did get to come home after 2 nights there.

The fact that we never have to spend the usual 5-7 days because Taylor seizes so much just doesn’t seem like a silver lining. I think I would much rather spend a whole week at the hospital with her just to capture 1 seizure instead of 2 days because she has had hundreds of seizures.

Having gone through the escalation of seizure activity once before, I really don’t look forward to what things are looking like. Taylor has had seizures since she was 8 months old. Luckily they were controllable until she was 10 years old.

Once she hit 10, we started on a downward spiral culminating in brain surgery, a corpus callosotomy, in 2003. The surgery was absolutely the right thing to do at that time. Taylor was spending more and more time in status epilepticus and it was threatening her life.

The surgery resulted in a stroke, but I have never regretted making that decision even though it’s hard. That is probably an entry in itself…making those life-threatening decisions that we as parents of medically fragile children have to make.

So, now we are back on our seizure escalation treadmill. Today has been a rough day because she has a lot of drop & complex partial seizures. As it stands now, further surgery just isn’t an option. Focal point surgery would be our only option, but then there is no definable focal point for Taylor’s seizures.

The bright spot is that the FDA just approved a new seizure drug specifically for the treatment of Lennox-Gastaut seizure disorder. We are in the process of weaning her off 1 of the 4 seizure medications that she is on so that we can start the new one. If it works, we may try and get her off at least one other one.


Jacqualine said...

My friend, I thought I would join you on this side of the fence we both share...if you don't mind that is.

Beth said...

How is the weaning process going for the one seizure med? Any progress?

Can you share more about the seizures? I'd like to understand more. Also, what kinds of things does Taylor enjoy? What are her days like? What are your days like?