James' Journey with TSC

This Monday, January 26, 2026, James had his fourth EEG. The doctors wanted to ensure that his new medication doses are working and that he’s not having any subclinical seizures (seizures you can’t see outwardly).

Preparation for EEG days are never very easy; James needs to go to bed an hour late and wake up two hours early and stay awake until his nap during the test. With an eight month old, that is often easier said than done. We managed to keep him awake an hour later, and almost managed to keep him awake in the morning of the test. We tried everything from musical toys, books, rattles, to even a little bit of screen time, but he still dozed off for a few minutes on our short drive to our appointment.

Once we got there, he did excellent! He woke up during prep for the test, but didn’t fuss while the technician attached his electrodes. They use a mild abrasive to clean the scalp, then the electrodes are attached using an electrolyte paste and tape. They then wrap the electrodes with a “hat” to keep them in place. After that, we got James all snuggled up for a nap with his sleep sack, lovie, and pacifier.

Before his nap, he has to do two short tests. The first test has James open and close his eyes a few times (with help) and the second test involves a bright light flashing at different intervals to see how his brain responds. Then he can finally fall asleep. They are looking to see how his brain handles falling asleep and waking up. This time he slept for about an hour, though sometimes it’s longer. He really rocked this EEG all the way around, and we are so proud of him.

Tuesday came, and we started new weekly therapy to help with his feeding. James loves his food, but hasn’t really shown much interest at this time in bringing anything other than his hands to his mouth. Part of his newfound oral aversion also stems from having been given oral medication since three months old. Our goal now is to make him more comfortable with new sensations around his mouth and to have him start to reach and grab for food and spoons.

Part of this involves stabilizing him since he hasn’t been able to sit independently yet, so he gets a special support for his chair that keeps him from tipping over. He also needs to be able to support himself with his feet, so we use a yoga block to prop his feet since he’s a little too small yet to reach the built in foot rest on his high chair. In just one week, we are seeing him start to reach for things in his mouth and are so excited to see him progress!

We also has his routine physical therapy appointment Tuesday after feeding therapy to work on building up his strength. Rolling over and sitting up both take a lot of strength that James doesn’t have yet, but he is starting to try and scoot a little, so we are doing our best to give him the building blocks he needs to move around.

Wednesday brough more occupational therapy, and a new blue vest that James gets to wear called a Benik. It is a compression vest that is customizable to support him where he needs it, whether sitting up or working towards those push ups, it’ll give him the attentional sensory input and support he needs. He actually seems to be a fan, because not long after we put it on, he fell asleep! Although he won’t be wearing it to sleep, it can offer comfort similar to a hug, so it wasn’t surprising to see him snooze towards the end of his appointment.

Thursday we met with his pediatrician to discuss some more referrals. James struggles with being sleepy often, and we are trying to get to the root of why exactly that may be. His medications have a drowsiness side effect, seizures can make him tired, teething can make him tired, growing can make him tired, therapy can make him tired… you get the picture. After discussing with his therapy team and pediatrician, we are going to see a doctor for a sleep consultation so that we can try to rule out other obstructions and get to the bottom of his sleep. We are also going to be referred to another dermatologist who we can be established with to follow up with James’ skin manifestations over the coming years, though we aren’t terrible concerned about anything right now.

Unfortunately, this week we also noticed that James began to have some odd eye movements (sometimes referred to as “eye deviation”) that resembled the same movements he had in December when his infantile spasms started. We were able to record the episode and sent it to his neurologist to review prior to our visit. Our anticipation grew for answers from Monday’s EEG.

Friday finally arrived, and we met with James’ neurologist, Dr. Filloux. He confirmed what we were concerned about: the EEG from Monday showed abnormalities that shouldn’t be there. While it wasn’t as bad as his long EEG from mid-December, it wasn’t as good as his EEG at the end of 2025 had been. Reversion is not something that you want to see, and is uncommon with his treatment.

At this point, we had two options. Our first option is to wait two more weeks and then have a repeat EEG to see if he had more episodes like the one we had recorded while giving the medication more time or work. Our second option is to introduce an oral steroid for a short time (roughly 20 days) to try and essentially reset his brain patterns then do another EEG. However, it does come with some common less desirable side effects such as irritability, poor sleep, reflux, and weight gain.

We’ve decided the best course of action right now is to wait two weeks and have another EEG to see what this pattern is trending towards. We are going to be earnestly praying over the next two weeks that his next EEG shows improvement, or stability at the very least and that there isn’t an increase in this odd activity. We also ask for prayers that he would continue to progress with his therapy team.

Thank you all for praying for our family. God is still good, and has our family in His hands.