Infantile Spasms...a little seizure with big consequences

In november I noticed Finn started to have these startle ticks, more often than I have ever seen before. They were constant. About 15 an hour every single day. Finn hated them. They made him so mad. They would scare him when he was playing, and they would wake him up when he was trying to fall asleep. Luckily we had a neurology appt at the end of novemeber and I was able to tell his doctor about them. He was puzzeled by what he witnessed. To be sure to rule out any seizures he scheduled an EEG for Finn the following day. We waited to hear back from the doctor, but did not get a phone call. The holidays came and went and still nothing. Finn continued to have these ticks. Then in the beginning of January Finn started doing a new kind of movement. It looked like he was ducking his head trying avoid something being thrown at him. He rolled his eyes when he did this head movement as well as lift his arms.

Above is a video of Finn doing these movements. My gut told me this is not normal and probably not good. I called my neurologist and got the answering service. It took me 3 weeks to finally get someone on the phone (very frustrating for a concerned parent) and they were able to get Finn in right away. I showed the video above to Finn's doctor and he said he was 97% sure that what he was seeing was infanile spasms and that these were 'not good'. He told us that kids who suffer from infantile spasms are likely to be developmentally delayed, and in Finn's case he could be even more delayed than what we were anticipating. Ethan and I were crushed. I was just starting to accept the fact that my kid will be delayed compared to other kids his age. That he might not talk until later in life, if he is even able to talk at all. Now I have to deal with a whole other set of issues.

The doctors were able to get Finn in for a 24 hour EEG the next day. While we were waiting for the results the neurologists talked to Ethan and I about our options to treat infantile spasms. They said that we need to treat them aggressively now in hopes to stop them right away. They gave us a choice of 3 different medications; ACTH, Topamax, and Vigabatrin. Vigabatrin has a side effect of causing irreversible vision loss. So Ethan and I immediatley ruled that medication out since Finn already has issues with his eyes. Topamax is the less severe of the 3, but it could take up to 6 weeks for it to start working. We ruled that out because 6 weeks is a long time for Finn to keep having seizures. We came to an agreement that we would try ACTH. The doctors said this was the most common and most successful treatment for infantile spasms. However, with big results come with big side effects. ACTH is essentially a steroid and has to be injected into Finn's thigh. Its a 12 week regimen. The first week he gets 2 shots a day, then week 2 he gets the shot daily, then the rest of the time he will be getting his shot every other day.Another down side was that Ethan and I had to be the one to give him his shots. UGH! I can't do this! There is a reason why I didn't want to be a nurse! I don't want to stick people with needles, let alone my poor little baby! But a parent will do anything that is best for their child.

24 hours later the neurologist came to tell us what the EEG concluded. Finn was in fact having infantile spasms. The good news was that they didn't look like they were occurring very often. Also, the ticks that he does all day every day are the startle reflex that newborn babies have. Finn just has not grown out of his yet, because of his brain damage but they are hopeful that he will just grow out of them. The doctors said that because of the frequency of his infantile spasms and the lack of brain he has that they are confident that the ACTH will be an effective treatment for him. We started him on the drug later that day.

So here we are. We checked in for what we thought was just a 24 hour hospital stay turned into a 6 day stay. The hospital can't discharge us until we get the steroid shots delivered to our house because you can't just stop giving steriods once you start them. And the whole weekend is the reason why we have to stay so long. So Finn and I have been having a grand old time at Children's. He is the strongest,bravest person I know. Even though he gets poked and prodded, woken up, and squeezed he still keeps a smile on his face.

He has had 4 ACTH shots so far. and so far so good. It is Sunday night and he has not had a seizure yet today. I am hoping this is continues. I feel like he deserves good news for once in his life. I just keep hoping and praying that this works. My son has already defied so many obstacles. He deserves better. He deserves the best. He is seriously my hero. Ethan, Finn,and I appreciate all the love and support that we have gotten from family and friends. We appreciate everything everyone as done for us and we love you all!