I have not been on here much since Luke’s SRS in October. I want to provide an update on how things are going for him.
Last week Luke had his follow up appointments in the neurosurgery clinic at Cincinnati Children’s Hospital. This is a follow up after having SRS in October for some residual AVM that was found on follow up after his craniotomy in April. During this visit we discussed several things. First, his headaches have improved over the last month. Since he started school in August, we would get called by the school nurse at least 2-3 times a week for headaches. Since about mid November he has stopped getting headaches so frequently. The only time he complains of one now is when he is exposed to a lot of noise or some type of overstimulation.
Luke started telling me he was having some episodes of blurry vision not associated with headaches about a week before this follow up appointment. He said they would last a few minutes and eventually go away. I attributed these to his new VR headset since he had been playing it when he mentioned it to me. I had asked Luke if it was happening other times or just while playing the VR and he said he didn’t know. So I brought it up during our follow up visit and he told his neurosurgeon that it happened a few times a school during recess and in class too. With having had SRS recently, they decided to order a stat MRI which was done the same day we were there. There was concern for post radiation edema that could potentially cause intermittent blurry vision. Thankfully, the MRI did not show any concerning issues. His team was able to schedule him to see a neuro-opthalmologist while we were in town in addition to getting the MRI. That exam went well overall also. He does have a visual field deficit in the lower left quadrant of both eyes which we already knew about. We were told he would likely lose some peripheral vision from the surgery so this was expected and not a surprise. They expect he will compensate for this easily over time. The episodes of blurry vision he has been having is thought to be related to allergies due to some findings on exam from the neuro-opthamologist. So, some allergy medication/eye drops and a visit to the allergist should take care of the issue.
Luckily, Luke has not had another seizure since the one episode on 9/9/25. He has been transitioned from Keppra to Trileptal. He is tolerating the Trileptal much better. He is not having the mood swings like he was with the Keppra. While on Keppra, he would get overly upset over small things such as losing a game or being teased by his friends. He was having crying spells, he told me he would get really sad for no reason and sometimes he was going to the bathroom at school to cry. I had spoken with his neurologist about this by phone and he said that kids with these types of issues on Keppra seem to do well with Trileptal. We waited until after SRS to transition him and I can say there has definitely been an improvement in his behavior with this medication change. They still plan to keep him on anticonvulsants until he goes a year seizure free then they will attempt to wean off the medication.
We also met with his neuropsychologist to discuss results of the neuropsychological exam in November. Fortunately, his results were very good overall with no notable changes in his neurological functioning from a psychological standpoint. This was great news as we have had some issues with keeping up in school this year but it does seem to be improving. He currently has a 504 plan but we are going to request an IEP to help address some of the issues to see if that will help to ensure that his academic program is optimized for his needs.
Luke is actually doing great right now. He wants to continue to play baseball and has stayed active. His resilience is humbling and inspiring. We are so impressed with the skill and level of care at Cincinnati Children’s Hospital. They have provided the most excellent and skillful care we could have asked for. All concerns and needs have been met with such thoughtful care and compassion. We truly feel he is in the best hands for his AVM treatment with this team.
Even though this has been a hard journey, we are incredibly thankful to be in a season where Luke is doing well and feeling like himself again. We continue to trust God with each step forward, knowing He has carried us through the hardest moments and continues to watch over Luke. This road has been scary and overwhelming at times, but it has also deepened our faith and reminded us that we are never walking it alone. We are grateful for the incredible care team God has placed in our lives and for this community. All of the prayers, encouragement, and support have meant more than we could ever put into words.
Best Wishes,
Brandi