Oliver's CHOP Update

We have some big updates after our visit to CHOP, and honestly, we left feeling more hopeful, more confident, and more supported than we have in a long time.

We are officially transitioning Oliver’s ketogenic diet management to CHOP, and I cannot express how excited I am about this change. Their approach is so research-based, individualized, and data-driven. They have a plan for Oliver, they are thinking ahead, and we finally feel like we have a team that is going to actively use every tool available to help him.

🧠 EEG UPDATE

Oliver had a repeat EEG at CHOP, and while it is still abnormal, there was significant improvement compared to his previous EEG! His EEG did not show hypsarrhythmia , did show abundant abnormal electrical spikes, most commonly in the back portions of both sides of his brain, particularly the occipital and posterior regions. There is also slowing in the left occipital region.

While we still have a lot to work through, seeing improvement is encouraging.

The doctors also took time to explain what we need to watch for if Oliver’s seizures or spasms change or progress. And what surgeries would be beneficial at what time. We now have specific plans for what to do, when to intervene, and when to alert the team. Rather than waiting to see what happens, we have contingencies in place depending on how his seizures present. We know what to look for and who to contact if something changes, and that peace of mind is huge.

They also explained that the presence of hypsarrhythmia alone does not determine a child's developmental outcome. In children with structural brain malformations, developmental difficulties can be driven substantially by the underlying brain differences themselves. That was an important distinction for us to understand.

We also discussed the possibility of Oliver developing Lennox-Gastaut syndrome (LGS) in the future. While that is something the doctors will continue to watch for, it is NOT a certainty. LGS is a specific epilepsy syndrome defined by a pattern of seizure types and other clinical features. Even if Oliver develops different seizure types over time, that does not automatically mean he will develop LGS. His seizures could remain epileptic spasms or myoclonic seizures, or they could evolve into other types. We simply don't know yet, and we are preparing for the possibilities without assuming the worst.

The team believes the ketogenic diet is an especially important treatment option for Oliver across the different seizure types he may experience. They are being thoughtful and cautious with medication choices while still taking his seizures seriously and making sure we have a plan.

🥑 A WHOLE NEW APPROACH TO KETO

One of the biggest things we learned is that CHOP believes Oliver’s ketogenic diet can be utilized much more effectively than it has been. They are going to be much more intentional about using it as a treatment for his epilepsy.

Their monitoring system is next-level! They are tracking Oliver’s seizures daily, including whether he has one, what type it is, and how long it lasts. They are also tracking whether he finishes his prescribed bottles or meals and whether he stools. They are monitoring the little details that can make a big difference, and if something is concerning, the system flags it so the team can follow up with me.

Through their Care Companion system, his doctors can stay updated on what is happening with Oliver on a regular basis instead of relying solely on what we remember to report at appointments.

They will also be checking his ketone and glucose levels weekly as we make these dietary changes so they can see how his body is responding and make adjustments as needed.

And the food-planning system they use for his blended ketogenic diet is SO user-friendly! I can enter the fat, carbohydrates, and protein for a recipe, and it calculates how much of each ingredient I need to add to meet his prescribed nutritional requirements. For a mom who has to carefully manage every part of her child's diet, having tools that make this process easier and more precise is a huge relief.

💊 MEDICATION CHANGES

We are also making some medication changes. One of Oliver’s medications, sodium bicarbonate, is being replaced with potassium citrate. The team feels potassium citrate is a better option for his situation and is easier on the liver. They have also been reviewing his medications in the context of his diabetes insipidus and the issues we have been dealing with.

I appreciate that they are looking at the whole picture, including how one treatment can affect another part of his medical care, rather than treating every issue separately.

🏃‍♂️ DEVELOPMENT & THERAPY

One of the most encouraging parts of this visit was our conversation about Oliver’s development.

The doctors explained that his neurological diagnosis does not automatically determine what he will or won't be able to do. His course is his own, and the fact that he has a complicated neurological history does not mean we should put limits on his future. There is reason to keep working toward walking, continuing to develop his words, and helping him gain new skills.

We also discussed DMI therapy (Dynamic Movement Intervention), which they believe could be one of the best options for helping Oliver develop his gross motor skills. This is an outpatient therapy focused on helping children improve movement, strength, balance, and motor control.

We were able to get him scheduled for three therapy sessions a week: one feeding therapy session and two physical therapy sessions!
He's already showing improvement in balance and accepting oral fluids. 

There is a financial piece to this, unfortunately. The therapy provider only accepts our primary insurance, so we will owe a $30 copay per session. That adds up to $90 a week, but we believe these therapies are important for giving Oliver opportunities to work toward his goals, and we are going to do what we can to make it work.

We are so excited to continue and see how he progresses!

🩺 A TEAM THAT PLANS AHEAD

Another thing that stood out to us is how intentional CHOP is about testing and treatment. They aren't ordering tests simply because a certain amount of time has passed. They want to test when there is a clinical reason to do so, and they have plans in place for different scenarios instead of taking a wait-and-see approach to every change.

They have also been willing to revisit decisions that were made previously, including medications that may have contributed to problems with Oliver’s diabetes insipidus. They are looking carefully at what makes sense for HIM, and that matters so much.

Even the EEG itself was a better experience! They used a water-soluble conductive gel instead of the cement-like paste Oliver has typically had at Pittsburgh. He was calm with just a little fussiness and did significantly better with getting the electrodes put on and removed. Something as simple as that made the experience easier for him.

The knowledge, attention to detail, and willingness to explain things have meant so much to us. We left feeling like we understand more about Oliver’s condition, what we need to watch for, and what we can do to help him moving forward.

Most importantly, we left with a plan.

We know Oliver still has significant challenges ahead. We aren't pretending everything is fixed, and we know there are still unknowns about his seizures and his development. But we also know that his future is not predetermined by the hardest parts of his diagnosis.

Oliver has his own course, and the Lord is already there in every part of it. We will keep fighting for him, celebrating every bit of progress, and trusting God with the things we cannot control.

Thank you to everyone who continues to pray for Oliver and our family, check on us, encourage us, and walk alongside us through all of this. Your love and support mean more than we can ever explain. ❤️

We are so grateful for this next chapter at CHOP, and we are praying that this more proactive, research-based approach will help Oliver get the very best care possible.

One day at a time, one milestone at a time, and one prayer at a time. 🙏🏻❤️