Here's a question you don't hear everyday... how can a siezure be CUTE?
Well, if you spend enough time around our boy, you would see that he is actually very, very cute when he has a siezure. It's the weirdest thing. Here he is, brain spazzing.... but he is talking and staring wide eyed and alert while he's having one. So many people, when they see this, think Nate is actually talking to them. Maybe he is, but I find myself biting my lip and saying, "Yeah, well ya know...". But anyway, that's the question of the day lately, how can this sweet angel who's cute constantly anyway, still be cute during neurological duress? It's crazy.
Well, since I've posted last, Nate had an EEG. He only had one siezure during the test, and the tech that did the test asked me after all was done if that was one. I told her yes and she said she wasn't sure, so she had to ask. I guess that's a good sign, maybe the spikes on the grid weren't to high or something. Then Sunday, the neurologist called to tell me that this EEG was significantly better than the last one in September. The test in Sept. was rated, in his opinion- on a scale of 1-10 (10 being the worst rating)- a 10. After that test, we added the Topamax med to Nate's daily meds. He is up to 125 mg 2xday of Topamax and 45 mg 2xday of Phenobarbital. Then, after this EEG, then neurologist rated this one around a 6. So, that's good I guess. He asked if we were happy with where he was siezure wise. Did we want to try another med? I really didn't know what to say, I was kinda like, "uh---well, I don't know. What do you think?" Now, our neurologist has a really, REALLY hard time answering a question with a quick answer. He always seems to extend the answer so much that you actually forget what the question was in the first place. So, I guess somehow, we decided to try to add another med and see if we can get Nate siezure free. My main concern is that he's not so doped up that he can't do anything. Keppra was the med he wanted to try. We would start with a half a tablet (125mg) twice a day and maybe go up after a few weeks. I filled the prescription, and stalled on giving it to him for almost a week. I was afraid of another med. The last "new" med we tried knocked him out so bad it was scary.
I decided to try to find some more answers about Keppra, maybe someone out there could give me more of a straight answer than what I was getting from the neurologist. I posted on a website for parents of children with epilepsy and one response I got was that we should consult with an epileptologist. A dr. who specializes in siezures. So, I found a pediatric epilepsy center in St. Louis and am in the process of trying to get Nate an appt. to be evaluated there. I do not believe that our neurologist is stupid or ignorant about the meds he's prescribing, I just felt as though it was time to have a second opinion weigh in. We will see what happens with that.
So anyway, I did decide to give Nate the Keppra and he's not knocked out. His seizures are not lengthy at all anymore, but do seem more frequent. Not really sure where to go with that. At the end of this week, we will probably go up to the full tablet of Keppra.
Nate got fitted for his hearing aid for the left ear. He will get that next Tuesday Dec. 9. I'm looking forward to seeing if that does anything for him. I'm still waiting for someone to call me to schedule the cochlear implant surgery. Maybe, I oughta take it as a sign that I should call them and see what's up. HMMMMM.
With Thanksgiving around the corner and the holidays, we are going to be incredibly busy. But I will try to post as much as possible!
Love to all!
-Carolyn
Hi Carolyn,
ReplyDeleteI'm so happy to hear about Nate's new cochlear implant. I am hoping and praying it will give Nate more access to the world around him and to those that love him.
The seizure med question. I have gone through that one many times. Logan started on Phenobarb and had only 1 seizure on it. But because he had been on it for about 5 years, the doctor wanted to switch him so we went to topomax. He kept having seizures on the topomax. Most of them were in the middle of the night. Since then, I barely sleep very much at night because I'm so worried he'll have a seizure and I won't be there. The topomax for Logan didn't work very well and we were up to about 150 mg's 2 x a day before they wanted to switch him to the Keppra. Logan has some behavior issues anyway because the part of his brain that controls impulse was so damaged when he was a baby. But when I read the side effects on the keppra about feelings of suicide or agressive behavior, I called my neurologist and said no. I didn't want to put Logan through anymore behavior issues, so we decided to put him on depakote (valproic acid). So far he's had about 3 seizures on it. It took forever to transition him from the topomax. At times, it can make Logan very lethargic and nauseous (sp?). I hate having to see him like that. He's been in and out of school for the last two weeks becuase of it. So this new neurologist (mine took a job in N. Carolina) wants to switch him yet again to Lamictal. With each new drug comes a whole new set of potential side effects. This one has the potential to cause a fatal rash or permanent scarring. And it must be transitioned very very slowly for kids on Valproic Acid (which is what Logan is on). I decided to wait. I just can go through with a huge medication transition right now with the holidays coming up and my husband starting a new job in Des Moines next Monday. The seizure medication transitions are some of the hardest decisions to make, because your child can't tell you exactly how he's feeling. I second guess myself all the time. "Am I doing what's right for Logan, or is there something more of different I could be doing?" It's a tough thing to have to do, but as a mom, you gotta do it! I hope the addition of Keppra will help Nate tremendously. It sounds like it might be helping on his EEG. These medications work so very different for each person. I am hoping that this is the ticket for Nate and you won't have to go through any more transitions for a while.
Happy Thanksgiving to you and your family! I hope it is a safe and peaceful one for all of you. We'll be thinking about you!
Dani