August 24, 2006 by Marj Hatzell
Two weeks ago Bugaboo had an EEG (24 hour hospital stay, loads of fun!). Yesterday the Neurologist called us with the results and it was very interesting news. We aren’t sure if we should be happy or worried but we feel so much relief. Relief because we finally have an answer to the question that has been plaguing us for months: Why is Bugaboo heading down hill with his skills and behavior and is there anythign we can do to stop it?
The Neurologist (who could have spent 5 minutes on the phone with me, giving me a diagnosis and a prescription) actually talked to me for over forty-five minutes explaining exactly what they were looking for, what they found, which areas of the brain are affected, what it causes and how to treat it. He was very thorough and patient and answered all of my questions. He was also very supportive and calmed my fears. So this is what he said (very abridged version!):
Bugaboo currently has “multiple abnormal misifirings” of the brain in his frontal and temporal lobes. In other words, he is having tons of teeny seizures all day long, every day. Like, possible one hundred or more a day, and that was just the day they did the EEG. And they have no idea how much damage these little seizures have done or how long he has had them. We know it has been at least a year judging by the behavioral changes we have seen in him.
Now, this is sort of good news. It can be controlled with meds. We will have to monitor him monthly to be certain the meds don’t do damage to his liver or kidneys. But he has to start meds before it does more damage and turns into epilepsy, which would be much more difficult to control. Once the medication levels are attained and they feel the seizures are stopping, it is a matter of time to see how he rebounds, if he rebounds or if we see any improvement in his behavior.
The doctor feels that most of his behaviors can be attributed to the seizures. The poor kid has auras and headaches constantly. That is why he is banging his head on the couch, biting his hand, having temper tantrums and mood swings, running around like a spinning top and spacing out so much. He also is having short-term memory problems and committing things to long term memory (since much of the time he can’t remember five minutes ago!). He can’t remember eating a few minutes after he does it so he asks for more. He can’t remember he just polished off a full cup of juice. He can’t remember that he learned how to drink out of a straw. At the playground he tends to find a circle and stick to it, like going down the slide, walking in a circle and then going back down the slide again. And he will do that for an hour if no one interrupts him or until he snaps out of it. It is a bizarre thing to watch.
We are very hopeful that once things are under control we will see the real Bugaboo emerge. We have felt so strongly that there just isn’t something right about our son, that he is in there somewhere. And we were right. The doctor said all along that he didn’t feel Ian has the severe autism we thought he had, he kept looking for something else when everyone else blamed it on autism. I’d like to kiss that doctor (but he is married and so am I! But he is really cute!). So now we wait to see what happens. They expect significant changes and we pray for them. There is even a good chance he may regain some speech! If only!
Stay tuned, I will update with more info later…