A lot has been happening these past few weeks for us, so here’s an update. Oliver has some motor problems that the neurologists think may be due to subclinical seizures. He has been walking for 5 or 6 months now, and he is still really wobbly and appears dizzy. He actually looks like he has ataxia, which is a motor problem caused by damage to the cerebellum. According to his MRI, Oliver’s cerebellum is just fine though- no tubers are on it. The neurologists are concerned since they can’t figure out why he is so ataxic, and they think it may be due to seizures that are hard to notice.
Oliver was in the hospital overnight for a video EEG at the end of August to see if they could see anything in his brain wave pattern that could possibly explain his unsteadiness. To be honest, I was hoping they would see something during the EEG because Jadey and I feel like he is having breakthrough seizures. It probably sounds strange that I was hoping for seizures; the reality of the situation is that if Oliver is having seizures, I want to know about it, and I want the doctors to know about it. I want to have some absolutes: knowledge that certain types of odd-looking movements indicate a seizure is happening. It’s really hard to be constantly questioning every little thing he does and wondering if he is having a seizure. What they found at the EEG was that Oliver has abnormal background brain wave activity that makes seizures very likely, which is no surprise considering the amount of tubers in his brain. They found that he has “frequent discharge” from a couple of his tubers, one in the left temporal lobe and another somewhere in the right hemisphere. They saw no seizures and nothing that could explain his ataxia. After seeing him walk around, the neurologists were more concerned than ever; actually, the word his main neurologist used was “puzzled”. She told me in an email that they still think it could very possibly be seizures causing his motor problems, and if it isn’t seizures, then he could have another rare disease in addition to tuberous sclerosis. That put things into perspective for me. When I had been hoping for seizures to happen during the EEG, I wasn’t hoping that he was having constant seizures causing his dizziness. Now though, it seems like constant seizures are the lesser of two evils. I’d rather the problem be that Oliver’s seizures aren’t being controlled on Topamax than that he has some other horrible degenerative disease. I posted questions on a bunch of websites, and I got some responses from some other parents of children with TS that make me hope the problem is neither seizures nor another disease. Some people said their children had dizziness and ataxia when they were on Topamax, and when they went to a different medication, the motor problems mysteriously disappeared. I had discussed this possibility with Oliver’s neurologists before, and they didn’t think it was related. I am still hoping the med is what is causing all of this though; that would be an easy fix, especially since Topamax hasn’t been working as well lately.
I really do like to have absolutes, knowledge that I can count on and know is true, and I realized after the EEG that my desire to be able to believe something absolutely could adversely affect the care I give Oliver. When the doctor came in and told me Oliver wasn’t having seizures and that this was good news, I believed him. I needed to believe him, that his words were absolutely true. I picture it as if I am a survivor of a shipwreck in the middle of the ocean. I am desperate to find any floating item I can hold on to, because if I don’t have anything to hold on to, I won’t have the strength to stay afloat. I wanted to grab hold of that doctor’s words, that Oliver isn’t having seizures and that his seizures are well-controlled on the meds. This is a problem because when I see something happening to Oliver that looks strange, I will use that doctor’s words to convince myself that is not a seizure. This keeps me from taking these episodes as seriously as they need to be taken. Another absolute decision that I had made was that Oliver’s neurologist was good. However, she could someday make bad calls that jeopardize his future. I have to make sure I don’t stick to my decision rather than do what needs to be done and get a new neurologist. As nice as it would feel to believe the EEG results, I have to remain skeptical.
After the 24-hour EEG, a neurology appointment, and a barrage of emails between the neurologist and me, we got Oliver scheduled for a 5-day video EEG. I am relatively anxious about this one because they are going to wean him off his meds while he is hooked up. They want to see where the seizures are occurring and what type of seizures he is having. They want to see if he is having seizures that could be causing ataxia, and they want to know what type(s) of seizures he is having in order to switch him to the most appropriate new medication. It’s scary because he is going to have a lot of seizures. From talking with the doctors and with other families who have done this before, the hospital will be a really safe place to take him off Topamax. He will have an IV in throughout the study in case they need to administer rescue medication (used to stop a long seizure that would cause brain damage), and there are plenty of specialists available. We have to find out why these motor problems are happening. I would like to attach myself to the idea that Topamax is causing the dizziness, but I have to force myself to keep an open mind.
This is where we are with Oliver’s care right now. I’m coming to terms with the idea of taking him off seizure medication for the EEG, although I think it’s going to be hard. Throughout these past few months dealing with the dizziness and ataxia issues, I have been happy with Oliver’s medical care. I’m thankful that the doctors are really persistent about finding out what is wrong rather than just assuming things are fine since nothing came up on the overnight EEG. Oliver and Jadey are checking in October 10, so we are counting down the days until then.
