It's been over a year since Truitt's last EEG, the one that told us all of those jerks and twitches we were seeing weren't seizures. We'll lately, I have been so worried again that these twitches he is still doing several times a day are now seizures. It's probably me just becoming my old worried self again, but I just think they look so much like a seizure, and what if they are?
We had his Neurology appointment last week and I asked if he could have an EEG done to see what exactly is going on in his little brain. His Neurologist thinks they are just some kind of neuro-muscular spasms, and is hopeful the EEG will show nothing different than it did last summer. No seizures.
If indeed the EEG today shows no seizures, we will then FINALLY wean Truitt off of the Phenobarbital. The seizure med he has been on since he was 12 hours old. He is still on the same dose he was on in the NICU, so the Neurologist thinks if he has remained seizure free for a year, now would be a good time to start to take it away.
That would be great! I sure do have my hopes up for that to happen.
Phenobarbital is a very sedating drug, and they don't like to leave kids on it any more than 2 years. It can lower their IQ, and alter their personality if they are on it for too long. That is why we would all love to get him off of it. And Soon.
Since Truitt is now a toddler, and not a baby anymore, having an EEG means he must be sleep deprived. They want the children to sleep during the test to get a more accurate reading. So he was only allowed to get 5 hours of sleep last night, which means we are ALL going to be sleep deprived. But we cheated and let him get 6.5, ha!
He has therapy right before, so I know he will be so tried, and will hopefully have no trouble falling asleep.
I am a worried mess today, because I always prepare for the worst. Please help us in praying for a seizure free EEG. I will update tonight with the results.
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