Tuesday, April 12, 2011
Well, the neurologist decided that the right medication for Drew would be leveriracetam (Keppra). He will be on the lowest dose to start out with and if he does ok, then he'll stay on that dose. If not, then they'll increase it. The good thing about this drug is that the side effects are minimal (tiredness, sleepiness-which will go away, irritability, and sometimes insomnia) and you can't get toxic off of it. The aggression and irritability are a couple of my biggest concerns, but the doctor said that if he shows signs of this, call them back and they can adjust things. My other big concern is that being on drug therapy requires a two year commitment. Drew has to be on the medication every day for two years. If in that time he has no seizures and a normal EEG, he can come off of the meds. I'm hoping this works, and that I don't forget to give him his medicine. That would be bad. So, today was day one of the drug and so far so good. Even though it was day one, and it's not really in his system yet, I have felt much better. Drew did good today, but it was only day 1! I'm keeping my fingers crossed that this drug works. Love you all so much!
Thursday, April 7, 2011
Ok, so here is the big update about Drew. Tuesday we went to his appointment for his EEG. This is where they put about 27 electrodes on his head, then covered the electrodes with a gauze wrap to hold them in place. It looked like he was wearing a bicycle helmet!
He was then asked to do all sorts of things, open his eyes, shut them, open them, shut them. They then asked him to blow on a pinwheel for 3 minutes. It was such a long time for him! He would blow little bursts of air, and then a few long ones! After that the technician told him to close his eyes and try to rest. I ended up having to lay in the bed with him to calm him down. He was so restless. After they did that, the technician came back in and did a strobe light test. This test is done to try and cause a seizure. Well, Drew handled it just fine and no seizure happened.
When that was over, we headed down to have his MRI done. They were initially going to sedate him because they needed him to be really still. But they decided to do a trial run so see if he could in fact hold still. They put headphones on him and goggles which played a movie. I went to the recovery room and waited. They came back about 30 minutes later saying that he was able to hold still and the scan was done. We could go home. This was about 10:00 in the morning.
Later that afternoon, about 1:50, he had another seizure. This was probably due to his lack of sleep (they wanted us to sleep deprive him a bit before the EEG). I was so glad that we had an appointment with the neurologist the next day, Wednesday.
Well, when we got to the neurologist's office on Wednesday afternoon, the most wonderful PA came in and did a full neurological check on Drew. She was fantastic. The results to the tests the day before were in and she and the Neurologist gave us the news. Drew's MRI was normal. No tumors or lesions were found...Yay! Then the EEG. They found an abnormal burst on his EEG during his rest period. So what does that mean? It means that the likelihood of Drew having a seizure again in the next 6 months in 90%. It also means that since his MRI was clean, he has a great chance of outgrowing the seizures!
Another thing we found out is that he has Epilepsy. The definition of epilepsy is two or more seizures. Also, epilepsy is basically a diagnosis for idiopathic seizures, meaning they have no idea why or what causes them. And since Drew has had two unknown seizures within 10 days of each other, this is his diagnosis. So, now what do we do? The neurologist said that it is a good idea to treat him with medication. He told Doug and I to think it over and decide which drug route we wanted to start with. The drugs will prevent him from having seizures. Which, being that summer is coming and he'll want to be swimming, he should be medicated. What else does this mean? That this will require a two year commitment. He must be on the drug for two years. If within those two years he doesn't have a seizure or any severe side effects, then he can be taken off the medication. This also means that we will be experimenting with the drugs and their doses, since the side effects can be tamed with dosage adjustments.
So, there you have it. Our son has epilepsy. But don't be too afraid by that word. If you don't like it, use seizure disorder...it's the same thing. Epilepsy isn't as scary as people think it is. It just means that from now on, Drew needs to stay hydrated, have enough rest, and needs to have some sort of supervision. Other than that, he is a normal kid who can do normal things, like play T-ball-which he had his first practice yesterday!
Thank you to all of you who have prayed for us. It has meant the world to me. Please keep us in your prayers that we might find the right drug for Drew and that it will control his episodes. I love you all. I couldn't ask for greater family and friends.