Our journey through life with hemiplegic cerebral palsy and infantile spasms

Sunday, November 16, 2014

We LOVE our neuro, hate epilepsy

The next day after Karsen's EEG was a busy Friday, like any other Friday. I was told that it could take a week to have the results from his EEG. It has to be read by two people then gets sent off to the neuro who also reads it her self along with the reports. So I really wasn't expecting to hear back anytime soon. I had a  brief 15 minute break in my day at work. My phone rang, I looked down a saw the caller ID read off our neurologist. My stomach dropped. I knew getting a phone call that soon wasn't a good sign. It had been less than 24 hours since we were there. Don't get me wrong, I am SO grateful they are prompt and on it, but in the back of my mind I was hoping.... well ok maybe it was not the back it was probably more like all over.... that I was over reacting, Karsen wasn't having seizures, he was just tired, we was just stuck in a stare like I do. Well, deep down I knew. I knew it was something, just like I knew when he was 7 months old and would have these weird spasm jerk things. I'm so glad I listen to my mommy gut, I'm so glad I ignored our epileptic specialist and went to our neuro. If I wouldn't have been so proactive Karsen's seizures could be getting worse. Our neurologist told me immediately that his EEG showed spiking that was accurate to the type of seizure I was describing. He also is having these spikes for 2-3 seconds, just short enough for us to not even think it was a seizure. The risk of not doing anything is having the seizures take over his whole brain, have them last longer, turn more severe. So, again, I'm grateful for speedy results. We are starting Karsen on Keppra which has been known to cause extreme agitation (perfect, right?! Let's add that on top of his frustration to not be able to communicate.) but our other drug choice option was not one I would choose for him (known to cause speech delay, and cognitive impairment). We'll also be giving him B6 with the meds, since it's been known to help with aggression. Praying this works. Praying for no more seizures. Praying for strength. Praising God for answers.
Couldn't leave you with out a cute pic of my handsome little man. His first school picture. 

1 comment:

  1. That is the most adorable school picture I have ever seen! I am so sorry....I hope the meds work with very minimal discomfort to Karsen (and YOU!) <3

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