This wasn’t the update I was hoping to share.

Maddox had a follow-up EEG today, and almost immediately I had a feeling we weren’t going to get the news we wanted.

Although Maddox hasn’t had obvious physical spasms since October (one may have occurred yesterday, which neuro agrees with), every follow-up EEG has continued to show hypsarrhythmia. From my understanding, this is what we desperately want to stop, not just control, but completely eliminate.

Unfortunately, today’s EEG still showed it.

What does that mean? Another failed treatment, and more time that Maddox’s brain is enduring the hyps. I won’t go into all the details of what that can mean long-term, but ultimately, not controlling it carries a very high risk of ongoing brain injury. The only way to fully know the extent would be another MRI.

Next steps:

Even though we already tried a high-dose steroid that didn’t work, I asked if we could try ACTH. Years ago, this was actually the first-line treatment for infantile spasms. Neuro isn’t opposed, mainly because we would know within a few weeks if it’s working. He isn’t confident it will, given the steroid failure, but we’re trying anyway.

Now comes the insurance battle. ACTH is extremely expensive and will likely require appeals. If approved, Maddox will need injections twice a day and monitoring three times a week for blood pressure and glucose. There’s also a possibility he may need blood pressure medication while on it. The treatment itself lasts 28 days.

We may see another very irritable Maddox, but if this has a chance to help, we will push through a month of hard.

If ACTH doesn’t work, the next option is a ketogenic diet, which would involve adding a dietitian to his rolodex of doctors and providers. I’ll share more if and when we get there.

I’m defeated. I don’t even know how to explain how this feels. It just sucks. Why do some treatments work for some kids and not others? Why Maddox? Questions I have, and answers I’ll probably never get.