So I've gone back and forth over the last month since the first discussion with our neurologist about the possibility of Beau having an additional congenital brain abnormality known as cortical dysplasia. The doctor, not having seen it on Beau's early MRI had ordered another one but even still had told us, it most likely wouldn't show up on MRI and that we would have to have a PET scan. Of course if you're reading this, you've most likely read our post earlier this month about the MRI and how it didn't show cortical dysplasia. We were prepared that it might not show up on MRI so it wasn't a huge let down, but it still made us want the answer that much quicker.
Fast forward to Wednesday (2 days ago).......We took Beau to Iowa City for his PET scan and were fortunate enough to get the best sedation team nurse, Roger, once again. I feel like he's becoming part of our family. I guess in some ways he really is - he's a part of our hospital family. After a stressful time for Beau of getting his IV put in, in the Pediatric Specialty Clinic, they sent us downstairs to the PET scan department. Roger met us down there and explained to us that he would be administering 3 different drugs to Beau - different drugs than were used for the MRI because this test would be longer and required that he not wake up and move at all during it.
The first drug, Versed, was administered. This is a drug that for a long time, we actually used as a rescue drug during a seizure. This is commonly used among anesthesia as it helps to calm a person. It calmed Beau and next came the Propofol - or as many people now know it - the drug that killed Michael Jackson. Roger had warned us that when the drug is administered people can become excited and their limbs can kick and flail. I was holding Beau during this and his body did just that, but the movements became very erratic and his eyes rolled back into his head and his legs tightened up. Roger recognized it as a seizure right away and grabbed him out of my arms. A doctor and a PET scan nurse were in the room as well and all jumped into action. The seizure was short lived, only about 20-25 seconds. I was shaking badly and Andy and I just stared at each other. It wasn't exactly the way we had thought the day would start for Beau. The seizure changed the way that they would read their test, but they said that they could still do the scan. After Beau was out from the sedation, they started administering the radiotracers. That process took about 45 minutes for it to get into his body. After that was completed, they took him in for his test which took about 30 minutes to do. After a short time in the recovery room, they drew some labs and we were free to go home.
Yesterday I got the phone call from our neurologist. She started off talking about the most recent blood level of Tegretol. It was low once again. It seems that Beau's body just doesn't seem to be phased by some of these drugs. Because he has had some different types of small seizures over the last month and because he had a seizure right there in the hospital, she increased his Tegretol once again. Three times in the last month he's been asleep for at least an hour and then he opens his eyes, they have a blank stare, his arms and legs elevate off of the bed and they are stiff, straight out and begin to shake. The episodes last about 30 seconds and then are over. Once again, some seizures that are breaking through 3 different drugs.
The next discussion was the PET scan. She talked about his seizure and how it made them read the test differently but how it really helped in lighting up the affected area in the brain. And when I say area, it's singular. As of right now, they see ONE small area near the midline, on the left side of the brain. The amazing thing is that this is exactly what Dr. Joshi had predicted a month ago. She noticed how he tends to drag his right leg, the EEG showed certain information and she went off of what we told her happened during a seizure. Without having a picture, she had predicted she would find cortical dysplasia, near the midline, most likely on the left side. We found just that. The area affected, is so close to the area that controls his right leg. Which obviously makes sense since he has a tendency to drag that leg when he walks. We now know, that surgery IS an option, although it's likely that something may happen to the function of his right leg as a result of the surgery.
Here is what the plan is. When a child is diagnosed at such a young age with epilepsy, she likes to have it under control within 2 years before surgery is considered - if surgery is even an option. We're at 2 years now, but she likes to call our first year after his diagnosis a "honeymoon period" because his seizures were under pretty good control. So for the next several months I have to contact the neurologist every 2 weeks to update her with information from his seizure log. As breakthrough seizures continue, the drugs will continue to be adjusted. Once the Tegretol is at it's max (we're pretty close) then the plan may be to switch to Depakote. The goal is not only stopping the seizures, but getting those constant spikes in the brain under control to try and help his intellectual growth. The spikes occurring every second in his brain are hindering his intellectual development. The key is having the right combination of drugs, that work differently, making sure one of them is controlling all the spikes and getting it right to prevent breakthrough seizures. If the multiple medications don't work for Beau then we have to talk seriously about the risk vs. benefit of brain surgery. No parent wants to think about that nor should they have to. The risk is high that surgery could damage his right leg. But, is the risk higher that constant brain spikes and seizures would be more harmful?
I guess I praise God that maybe there is an answer for Beau. Some people with epilepsy don't have an option. More testing would be required to be 100% certain, including another PET scan (one where he doesn't have a seizure) and another inpatient EEG. The way it looks now though, is that surgery is an option for Beau down the road. Theoretically the surgery would remove the abnormal area and hopefully eliminate the seizures and the spikes. If that really worked, what might Beau's potential be? Maybe he'd be able to learn even more, but maybe he'd walk with a limp. There are no guarantees in life and certainly no guarantees that everything is full proof. Beau is who he is and he's wonderful and will always be intellectually disabled but the thought that maybe he could have an even brighter future gives me some peace.
This result was my "best case scenario". I had let plenty of people know that this is what I thought could be the best possible outcome. She didn't call and say that multiple areas of his brain were affected and that surgery would never be an option. That was my worst case scenario. Beau has an "out" if these drugs don't work for him. I cry when I think of brain surgery on a toddler and not just any toddler, my toddler. BUT, I rejoice in the fact that he may have an opportunity to potentially live seizure free. What an amazing life that might be for him......
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