The seizure monster has returned

For the past few months I noticed Finn doing a weird twitching/pulsing with his right arm. It happened frequently during the day and it was always his right arm. It had me confused.. I found I could stop the pulsing if I put weight on it. So I thought it was just tone related. I got opinions from his therapists and doctors and they too thought it was tone related....until I asked our neurologist. Something she saw concerned her so she suggested we do a 24 hour EEG. Which I was actually interested in doing since Finn hasn't had an EEG in 3 years. Finn sometimes does random movements some days that make me question what is going on in that little head of his, so with a long term EEG I could get some answers to some of my questions. So we set up the 24 hour EEG for early December. For those who have never had the pleasure of experiencing an EEG, it takes an hour to put all the little electrodes on the head. Usually Finn hates this process and it's filled with tears, but not this time. He was a perfect little angel. Then once you are in the hospital room the nurses give you a button that you push every time you see the movement that you suspect is seizure activity. I filled up 2 sheets front and back in the 24 hours that we were there. That is how often Finn does these twitches in the right arm. Right before we leave Children's they tell me that they do see seizure activity, but that they can't give me definitive answers until they have the doctor analyze the whole EEG and that we might want to think about changing up his meds. That is how they discharge us! It's like Ok we will go home and wait for 2 weeks until we can see the doctor and Finn will continue to have these seizures...awesome. 

 


Two weeks later we see our neurologist. She tells me the reading of the EEG was kind of "murky" but that they definitely see seizure activity. He is experiencing 3 different kinds of focal seizures throughout the day. Which basically means that there are 3 different areas of the brain that are misfiring, and when that happens he experiences the arm twitch. However, not every time his arm twitches is a seizure. So it is very confusing. During these twitches, which only last a half a second, Finn is totally aware and engaged and talking through them. Which goes against typical seizure activity! So basically you can't tell between just an arm twitch and a seizure. Leave it to Finn to do another thing uncommon. We increased his Topamax but haven't seen a change in the frequency of twitches.

Finn has been doing amazing things in the last few months. I feel like he has been having a cognitive burst! He's nodding his head, he's walking like a champ in his walker, he is doing amazing things with his communication device, and actually started being more vocal in trying to say new sounds...he's been doing amazing! The neurologist let me know that these types of seizures are not doing any damage to his brain. It's apparent that they are not affecting his cognitive abilities and they don't appear to bother him, so instead of continuing to increase his medications in the hopes to stop these twitches all together (which may never happen) we should keep everything the same. Until it appears that these seizures are interfering with his life and/or learning we don't change anything. and I am in agreement with her. And plus I don't believe that I will ever be able to totally stop Finn's seizures. I feel like we will always be dealing with focal seizures because of his brain damage. But he is in great spirits, and he just continues to amaze everyone around him <3