I get to share a win for Maddox and our family today. 🤍 

 Thor took Maddox for another EEG to check how the ACTH treatment is working. I let go a little and went to work, but told him he had to call me anytime a doctor walked in 😂 

The first call was about Maddox’s low heart rate while sleeping. This also happened when he was on high-dose steroids, and I noticed it again once we started this treatment. Thankfully, after our cardiology appointment Friday and another ECG today, the results came back overall normal, just a lower heart rate for his age. So for now, nothing further. 

Now the part that matters most, his EEG. 

 

These are always nerve-racking for us. I told my husband, “I’m eager to know and worried.” Shortly after, the neurologist came in and shared that he sees improvement compared to Maddox’s previous EEGs and treatments. Not completely normal, but definitely better. 

What does that mean? A win for today. 🤍 

We’ve started the weaning process for ACTH (it’s not something he can stay on long term). In two weeks he’ll be completely weaned, and we’ll go back for another day-and-night EEG to determine next steps. 

We know improvement doesn’t guarantee it will stay this way. There’s always a chance the spasms could return. If they do, we can do another round of ACTH, we just have to space it out. 

Because statistics show that babies with infantile spasms often go on to develop more serious epilepsy, his neurologist is being proactive. We’re still planning to pursue a ketogenic diet and meet with neurology and the dietitian on April 2 to discuss what that will look like. The long-term goal, for them and his neuro, is to use the minimal amount of medication necessary while keeping his seizures controlled. He just doesn’t want to make too many changes at once.

Aspyn, Tatum, and I are grabbing dinner and heading up to the hospital to spend time together as a family. I’ll swap with Thor and stay the night with Maddox while he finishes out his EEG.