Thursday, April 2, 2009

Seizures just suck

I wish I had good news to update you with.

So Marley had a febrile seizure the day that she got her Hep A, Varicella and MMR vaccinations. I was so unprepared. One moment she was acting totally normal then she screamed and seized for about 45 seconds. After a visit to the ER and a night in the hospital, we came home...all very exhausted.

Nine days later, after she went to bed I heard her wake up, moaning. She eventually fell back asleep and when I went to check on her I noticed that she was very stiff and barely breathing. I picked her up and she was very lethargic- rather postictal like she had just had a seizure. As I held her and we rocked, the right side of her body seized up. She was crying and her head turned to the right while her eyes deviated towards the right too. She was breathing but completely unresponsive. Once again we went to the ER and she continued to seize for the next 2 hours. She eventually fell asleep, and when she woke up a half hour later she was back to her usual goofy self. A CT scan was performed and came back normal. We were discharged with rectal valium but no anti-seizure medications. The reason being is that kids are not prescribed anti-seizure meds until they have had at least 2 real seizures.

So we went home and waited...on the edge of our seats. Marley slept with us for at least a week before I felt comfortable enough to let her sleep in her own crib. Since that horrible night I check on her constantly. I haven't had more than 3-4 hours of straight sleep since. I am exhausted.

Marley had an EEG on Monday that was normal. Great, right? Well a normal EEG doesn't mean she won't have anymore seizures. I know in my heart she will have another; its just a matter of time. I teeter between complete paranoia and total despair. I try not to think about it too much because the fear is overwhelming. I can't prevent it, I can't know when it will happen...I just know it will.

We meet with a neurologist next week. I have so many questions. I don't even know where to start.


Tena said...

(hugs) I am so sorry you guys are going through this. I hope her seizures decrease in frequency or even go away entirely.

Larks said...

I am so, so sorry you're going through all this. Poor Marley :-( And poor Marley's parents. Dumb jerk seizures.

I really hope that the neurologist is able to shed more light on this and present you guys with options.

((( hugs )))

NikkiBenzo said...

Hi! I know you from the Nest. I occasionally check in to see how you are doing.
This may sound strange, but have you considered getting a service dog that has been trained to detect seizures? It could help ease your stress of worrying about the when and where and also be very therapeutic for Marley - not to mention a great friend for her! They are very expensive, but worth it. Maybe you can look into qualifying for some sort of progam to help with the cost.