So after that fateful trip to the neurologist’s office, we went straight home and googled Infantile Spasms. We had never heard of it before and had no clue what it was or what to expect. It’s funny how your mind can play tricks on you. I remember when I first read about Infantile Spasms I unconsciously tricked myself into thinking it didn’t sound that bad. All the stuff we were reading was painting a pretty bleak picture for our boy’s future, but I didn’t see it. I guess I just wasn’t ready to go there yet. By the way, I don’t believe it’s grammatically correct to capitalize Infantile Spasms, however, I feel the need to do so because of the large impact the diagnosis had had on our lives. So for those of you reading this who are grammar police, I sincerely apologize.
The next day, Owen was admitted to the hospital. An EEG was done which showed the dreaded hysarrhythmia brain wave pattern indicative of Infantile Spasms. Hypsarrhythmia is very disorganized and chaotic brain activity. To me, it looks like a brain that is very angry. When this type of brain activity shows up on an EEG, the likely culprit is Infantile Spasms, but not always. Before Owen was given the official diagnosis, they did a test they called the “pyridoxine challenge.” Sometimes seizures such as the ones Owen was having can be caused by a vitamin B6 deficiency. If that is the case, all he would need is some vitamin B6 and voila, the seizures would probably be history. While I hoped this would be the case, somehow deep down I knew we weren’t going to be so lucky. Don’t ask me how. Unfortunately, I was right. The hysarrhythmia persisted. Within 24 hours, give or take an hour, we went from thinking Owen’s seizures were improving to learning he had Infantile Spasms, a rare, catastrophic form of epilepsy with a bleak prognosis.
The best case scenario for any child diagnosed with Infantile Spasms is to get the spasms under control ASAP. The longer they go on, the bleaker the prognosis. The first medication Owen was prescribed was ACTH, or adrenocorticotropic hormone. Easy for me to say, right? Not really. Had to google it to make sure I spelled it correctly. The medication was to be given over a 6 week period of time. First we would gradually increase the dose and then we would begin to taper. The medication is administered via injection. We had to stay in the hospital for several days after his diagnosis to learn how to give our a 5 month old baby shots into his chubby little baby thigh. For some reason, that is not the part that bothered me. Measuring the dose of medication is up paralyzed me with fear. I’m not sure if I was afraid of measuring it incorrectly and giving my son the wrong dose, or if I was afraid of dropping the vial of medication. No sure, but my husband and I tag teamed on this. He did the measuring and I jabbed the needle into Owen thigh. Good times!
More about ACTH. It’s expensive. When I say expensive, I mean very, very expensive. I was actually at work when I got the new of Owen’s diagnosis. My husband was off that day so he took Owen to the hospital. The plan was for me to come right after work. When he called he informed me that Owen would need ACTH and told me how much it cost. Each vial of medication would cost $20,000 and he would need several vials. No, that’s not a typo. He ended up using 4 vials of that liquid gold. I remember thinking about how we were going to pay for it on my drive over to the hospital that day…..second mortgage, credit cards, prostitution? (trying to inject humor in here, so remember, don’t judge) The hospital was awesome in that they handled the issue of payment for us. They contacted our insurance company and came back to us with the verdict. We would need to pay $100 out of pocket. The lady who delivered the news looked worried like we were going to go off on her. Quite the opposite. I was so relieved, I had to fight the urge to run up and hug her.
In addition to the expense, ACTH has some nasty side effects, including high blood pressure, high blood sugar, compromised immune system and irritability, to name a few. It can also cause weight gain and increased hunger. We were told a nurse would be coming to our house weekly to check on Owen and we would need to test his blood sugar daily. Due to his compromised immune system, Owen wouldn’t be allowed to go out much and be around other people. Thank goodness Owen was being watched by his grandmother and not in daycare, because that would have meant the end of daycare, and perhaps one of us would have had to stop working to care for him.
We spent the next several days in the hospital while they ran tests to see if they could determine the cause of Owen’s Infantile Spasms (more about that later). We also learned how to give Owen his medication by practicing on an orange. Once they completed their testing and thought we were competent in giving him his medication, they sent us on our merry way. It was time to embark on our new reality. I was terrified, but hopeful that this was only temporary and that one day we would have a happy ending.
I Don't Have Time for This Sh*#! 