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If you’ve read my previous posts, you are aware that James was diagnosed with infantile spasms about two weeks ago. The diagnosis came after two months of trying to figure out what these weird “quirks” were that he would randomly do. The neurologist thought they sounded like infantile spasms based on Stacy’s description, but an EEG didn’t confirm it. A video taken of these “quirks” after that EEG was shown to a gastrointestinal (GI) doc who was fairly sure that they were a sign of acid reflux, so she started treating him for that. The medication she prescribed for the reflux did not seem to do anything to stop these “quirks”. Stacy showed the video to the neurologist during another neuro appointment and he said that those were definitely infantile spasms and ordered another EEG which finally confirmed the diagnosis. Meanwhile, Stacy and I spent the past two months feeling totally helpless, watching James have these spasms and not knowing what the hell was going on with him. Now that we finally know what they are, we can finally work on treating them.
There are a few available treatment options for infantile spasms, but the neurologist recommended ACTH because that seems to have the highest success rate. It is also the most expensive. In an earlier post, I mentioned that we had to fight a little bit with our health insurance company to cover the cost of this $74,000 drug. Actually, ACTH is not really a drug at all. ACTH, or adrenocorticotropic hormone, is a hormone that the body naturally produces. I know you are probably asking, if the body naturally produces ACTH, then why do we need to inject more of it into a person to treat infantile spasms? I asked the same question and haven’t really found an answer.
Now that James is finally approved by our insurance for ACTH, the next step was to spend the night at the hospital to get his first dose, and make sure he doesn’t have any bad reactions to it. That’s what we did on Thursday night. Before he got the first shot of ACTH, they needed to do some preliminary testing, one of which was an ECHO of his heart, as you can see in the picture below. An ECHO, or echocardiogram, is an ultrasound of the heart that shows how the heart and its valves are working. The ECHO showed that James has left ventricular non-compaction. We were told that this is nothing to worry about, but just something to monitor.
Other testing that was done was a urine glucose test that showed the blood sugar in his urine was good and there was no blood in his stool.
The first dose of ACTH was given at around 6 pm on Thursday night, and this is where I started to get a little bit stressed. ACTH comes in little vials and is drawn up with a syringe. It is given as a shot into the muscle in the thigh. Since Stacy and I will need to do these at home, we were instructed on how to draw it up and how to inject it. Okay, full disclosure… I hate needles. I can’t look when I have to give blood or get a flu shot. How am I supposed to give James a shot when I don’t like the sight of needles? Maybe I’ll let Stacy handle this one. Or maybe I just need to man up and do it. James will need to get a shot of ACTH every day for the next six weeks so I’m sure I will have to do at least one. We’ll see.
James survived his first dose without any noticeable reactions, andwe were able to go home on Friday. Now it is up to us to give him his daily shots. Please pray for all of us. Pray that Stacy and I give him his shots right. And pray for James that these shots work!
I have to share one more pic, because I just love it. James taking a nap on my lap with his monkey, Max.
