What is IS?

About 3 weeks ago now, I was up around 6 am with Brock, and had recently been dared to do the ice bucket challenge. I thought it was as good a time as any to set up my camera. Little did I know, that video would be both a complete blessing and the cause of another little roller coaster in this journey.  I posted the video on social media, and not long after was contacted by a mom asking about Brocks mannerisms in the video. That, in turn, made me make a call into the neurology department. I explained his “eye blinking” and “arm flailing”, and was told it was most likely a seizure and his meds would be adjusted at his appointment the following week. No big deal. Two days later, I saw Brock do it again. I called neurology again, but this time, I also posted the video to a couple of facebook groups of families who are walking similar journeys. I immediately became aware that we had reasons to be majorly concerned. I contacted our pediatrician, but he was full for the day. After 3 hours of waiting for a call back from neurology, I started heading to the hospital. I was pulling into the parking lot when the nurse finally called back. I told her I was bringing Brock into the ER unless she found a way to let our neurologist see my video and then tell me we didn’t have reason to be more concerned. I mentioned several people saying it looked like IS. I got a call back not long after confirming my fear. We were told to check into the hospital the next morning for a 2-7 day hospital stay, and possibly life changing news. What is IS? It’s also called infantile spasms, or West Syndrome. It sounds harmless, but from what I have gathered, it’s anything but. It is considered one of the “catastrophic childhood epilepsies.” Brad and I held Brock down for 20 minutes while he screamed “mama” and the EEG probes were glued onto his head. We spent a little more than 24 hours hooked up to an EEG in a room that had cameras on him constantly. It was the closest thing to prison that I ever plan to get. Someone had to be with Brock at all times- both because he had cords that would wrap around his neck with his eagerness to explore and get around, and because it was our job to notify nurses of any seen seizure activity. At the end of 24 hours, we learned that Brock had a completely normal EEG. If you compared his EEG to another child his age without his medical history, you would not be able to distinguish them. Now, that does not mean Brock doesn’t have brain damage. We know he does. It does not mean he isn’t having seizures. We know he is. But, his seizures show no “pattern” and he doesn’t display hypsarrhythmia (chaotic brain waves). We were discharged shortly after with nothing but a medication adjustment- definitely the lesser of two evils. However, we also left the hospital with the word “epilepsy” added to his medical history- a reminder to me that we will have lifelong battles to fight because of this nasty germ. It seems silly to have such a reaction, but it has honestly been really hard for me. I see Brock and his progress, and I like to think he won’t have to fight so hard forever. I’d like to think we can really put all of this behind us. I easily get overwhelmed with what is before us. Like the fact that Brock had an MRI Friday and we have a surgical consult on Monday. Or the fact that the neurosurgeon that we fell in love with and thought would do Brock’s surgery if he needed it is on an 8 week leave of absence. Or that based on Brock’s last physical therapy evaluation, he has caught up enough that insurance no longer wants to pay for therapy. They are little things that equal big stresses in my life.  Please be praying for our appointment on Monday- and for peace about our decision. Also, pray for Brock’s health this fall. With or without the surgery, it is going to be very important to keep him healthy. I’m going to add a small, hopefully very kind reminder to everyone that if you aren’t feeling well, please stay home. A small cold for you can be a huge thing for a child (or adult) with a compromised immune system. A stomach bug for you means a few miserable days at home, but it’s an instant ER trip for us. I refuse to live my life in fear, or in a bubble (regardless of how tempting that can seem at times). I’ve learned more than anything in all this to enjoy and be thankful for the time we have together on this earth. And please, please, please don’t put your finger near my child’s mouth. He will try to chew on it, and you are not a chew toy! Plus, fingers are germy. 

Oh, and check back Monday for an update!

That’s all, folks!