• Post category:Infantile Spasms
  • Reading time:4 mins read

Are you fricking kidding me?! Fricking was not the word I wanted to use, but I thought I should keep it clean. I really wanted to use another “F” word…and a few other four-letter words.

Before I get into why I started this post with such strong language, let me back up for a moment and catch everyone up in case you missed some of my previous posts about infantile spasms. In mid-December James had an appointment with his neurologist. Stacy tried her best to describe these quirks that James had recently started doing. Based on her description, the neurologist thought they sounded like infantile spasms, but wanted to get an EEG to confirm. When the EEG results came back, the neurologist said that they were not infantile spasms, and he didn’t know what they were. About a month later, James was in the hospital for respiratory and GI issues. By this time Stacy had caught one of these quirks on video and show the GI doc in the hospital. She thought they were a classic case of reflux. James had fundoplication surgery while he was in the NICU so he shouldn’t be refluxing, but she was the expert in GI related issues so we trusted her judgement. She put him on Zantac to see if that helped. About a week ago James had another appointment with the neurologist so Stacy showed him the video and said that they do look like infantile spasms and ordered another EEG.

So now that we are all caught up, the results from this last EEG came back and James DOES have infantile spasms! We went from they might be infantile spasms, to no they are not infantile spams, to it might be reflux, back to they might be infantile spasms, to yes, they are infantile spasms. Now do you understand why I wanted to use a much stronger word than ‘fricking’ at the beginning of this post?

For the past two months we’ve been trying to figure out what these quirks were and we finally have our answer. We’re not sure if we like the answer, but at least now that we have a diagnosis, we can start treating them.

So, what are the treatment options? The go-to treatment for infantile spasms is ACTH (Adrenocorticotropic Hormone) so the neurologist sent the prescription over to Walgreens. When Stacy went to pick up the prescription, she was told that our insurance denied it because it was too expensive. Stacy asked the pharmacist how much it was, thinking maybe we could just pay for it ourselves. This time it was Stacy dropping the F-bomb (and a few other four-letter words). Are you ready for this? $74,000! That is not a typo. The ACTH shots to treat infantile spasms is $74,000! Holy mother of God! How in the hell does medicine cost $74,000?!

Stacy called our insurance company, Blue Cross Blue Shield, to see if she could get some answers. The woman Stacy spoke with was very nice and offered to call around to doctors and pharmacies to see how we could get these shots as soon as possible.

All we can do now is sit and wait; and think about ways to raise $74,000 in case insurance continues to not want to pay for it. The neurologist said that we need to treat infantile spasms as quickly as possible to get the best possible outcome and we’ve already wasted two months waiting for the diagnosis. Hopefully we get some answers soon!