The meds that Yusef was on for the infantile spasms just simply aren't working. His last two EEG's continued to show frequent seizure activity. Developmentally we are at a total standstill which is the most frustrating thing that has gone on. I'd say my 10 month old is still at a 3 month level, even regressing since this all began 6 months ago.
So two and a half weeks ago, we started the ACTH treatments. ACTH or adrenocorticotropic hormone is a treatment which is sometimes effectivce with IS for reasons not understood by medical science. The cost of the six week treatment is well over 100,000 dollars. No that is not a typo. It's craaazy. Apparently, Questor is the only drug company that manufactures it, and since it used to treat a rare condition, they can charge whatever they want! Well yay, for them, and thank God, thank God, we have decent prescription coverage.
These two vials costs $93,000, and there's more to come
It's quite stressfull to even have these vials in my house. I'm deathly afraid there's going to be a fire or something. Of course, even more stressfull is jabbing my sweet boy in the leg with a needle every morning.
The treatment is a six week course. We started at the highest dose 3 weeks ago, and are tapering down each week. The first week Yusef did great. He immediately became more alert and began cooing and gooing like never before. He had a light in his eye. He looked us in the face and truly studied us for what seemed like the first time. Then last week the insidious seizures started again, and he again became like a zombie, spaced out, seemingly oblivious to the world. Since then, the seizures have come and gone. One day, I'll see seizures, and the next he'll be back again, alert. He still hasn't smiled for what has seems like months. He's still never laughed.
ACTH is still considered the gold standard in treating IS, but there are still some treatment options that I'm quite interested in, namely the ketogenic diet which has shown to be as effective in some studies. There is also a drug called vigabatrin. I'm also seriously thinking about taking him to Children's Mercy in KC to get a second opinion as I fell like this Dr. has been dragging his feet with this. This has gone on now for 5 months! Why did we drag our feet so long before starting the ACTH and why did he never mention this ketogenic diet? I'm still learning about this, but I know that it will be the next step if this treatment doesn't work. I feel in my heart, it's not going to. And now I feel trapped since we're right in the middle of the ACTH and I feel guilty because I should have taken him for another opinion sooner when we weren't seeing results earlier in this journey. Then again, this could all be the angry rantings of a desperate mother.
This has been a heartwrenching experience and it isn't over yet. In some ways it feels like getting the diagnosis all over again, the same fears and grief, and in between glimmers of hope.