Friday, October 12, 2012
24 Hour EEG
The day after David's 9th birthday and 2 days after Annelise and I got back from our Florida trip, Charles and I check into Children's Hospital for his 24 hour EEG stay, where neurologists view him on video in his room all day and night to see any brain activity and actually get to see him and what things look like when he's having a seizure or tremor or general weakness. It was a LONG 24 hours, but Charles did great. The floor has books and activities and movies for the kids that the nurses and volunteers bring to his room. In addition, a friend of mine (Courtney Clark -- Marianne and Heather's sister from Willow Creek Ward) was there with her son and they had been there for 6 weeks, so I really couldn't complain. It was nice to see a friendly face. Charles had a couple of seizures but they did not show up in his brain on the EEG as a "typical seizure" so once again, Charles is a MYSTERY.
I took lots of pictures, he was so cute the whole time!!!
Monday, October 1, 2012
Switching to a new Medicine
Today's appointment was with Dr. Levisohn - his new main neurologist (Very senior-level neurologist who we first met at Charles first ever appointment in the ER when he was 5 months old).
I was explaining that we still thought he was a little too agressive (throwing things, etc) and that it was probably due to his medicine (at least we hope he has a reason). He spent 15 minutes with Charles and said "you have a very difficult child"...in the nicest way possible. He agreed that Charles was agressive and busy and that it might be from the medicine. He also thought (as we have) that he was "failing" his medicine he's been on for 2 years because he's still having seizures on occassion even though we give it to him every day, twice a day and VERY rarely miss a dose.
So, he recommended we move Charles to a new medicine (old was was called Keppra) called Topamax. He said the main side affect is it can cause kids to sweat more in the summer, so you have to keep them better hydrated with more water when they're outside. We haven't seen that side affect as of yet (and now with Fall might not). There were a couple others, but nothing too alarming. However, you don't just take a child off one and put them on a new one, when it comes to seizure disorders - so for almost 2 months he's on both. Slowing building up the new one for a month, then slowing going off the old one for a month. Fast Forward 6 weeks...
It's now October 1st, he's been on Topamax for about 4-5 weeks now and he has about 2 more weeks of a lower dosage of Keppra to go. In his legs...He has had some seizures, weakness, and brief bouts of paralysis (like 1-2 seconds) in his legs (I think primarily his right leg) probably a couple hundred times over the month of September 10-20 per day). He's fallen almost every time. I feel AWEFUL for the poor kid. He's getting a sense of what is wrong with him this summer/fall and using the term "mommy, my foot hurts" - when he senses the tremor or weakness or paralysis in his foot/leg.
Obviously, I was concerned - Ken and I thought it might be because he's on 2 meds at once and possibibly overdosed. I called the neuro department several times in the last few weeks. They said just keep plugging along with the meds. In addition, one of the on-call neuro docs (since mine was out of town) recommended a 24 HOUR EEG where you check into the hospital and get hooked up with the wires and stay in a room for 24 hours. Because during past EEGs that only last an hour, they really haven't been able to "record" them. I was hesitant, and requested Dr. Levisohn sign off on that idea first. He did when he returned from vacation this week and so they called me to schedule it.
I will be taking him to Children's hospital next Wednesday (Oct. 10th) checking in at 1pm and staying overnight till Thursday at 1pm (about). He's not allowed to leave the room (although he can walk around the room), so we're going to pack up a LOT of entertainment, as you can imagine. Ken is going to work from home Wednesday all day and Thursday till 11ish. So if you want to stop in and see us you can (or help Ken/Grandma with other 3) :-). Charles will be on camera for the whole time as well being evaluated and a neuro doc will analyze the video and any seizures that show up on the EEG.
Wish us luck! I'm worried about it. It's going to be really tough on Charles to be hooked up that long.
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I was explaining that we still thought he was a little too agressive (throwing things, etc) and that it was probably due to his medicine (at least we hope he has a reason). He spent 15 minutes with Charles and said "you have a very difficult child"...in the nicest way possible. He agreed that Charles was agressive and busy and that it might be from the medicine. He also thought (as we have) that he was "failing" his medicine he's been on for 2 years because he's still having seizures on occassion even though we give it to him every day, twice a day and VERY rarely miss a dose.
So, he recommended we move Charles to a new medicine (old was was called Keppra) called Topamax. He said the main side affect is it can cause kids to sweat more in the summer, so you have to keep them better hydrated with more water when they're outside. We haven't seen that side affect as of yet (and now with Fall might not). There were a couple others, but nothing too alarming. However, you don't just take a child off one and put them on a new one, when it comes to seizure disorders - so for almost 2 months he's on both. Slowing building up the new one for a month, then slowing going off the old one for a month. Fast Forward 6 weeks...
It's now October 1st, he's been on Topamax for about 4-5 weeks now and he has about 2 more weeks of a lower dosage of Keppra to go. In his legs...He has had some seizures, weakness, and brief bouts of paralysis (like 1-2 seconds) in his legs (I think primarily his right leg) probably a couple hundred times over the month of September 10-20 per day). He's fallen almost every time. I feel AWEFUL for the poor kid. He's getting a sense of what is wrong with him this summer/fall and using the term "mommy, my foot hurts" - when he senses the tremor or weakness or paralysis in his foot/leg.
Obviously, I was concerned - Ken and I thought it might be because he's on 2 meds at once and possibibly overdosed. I called the neuro department several times in the last few weeks. They said just keep plugging along with the meds. In addition, one of the on-call neuro docs (since mine was out of town) recommended a 24 HOUR EEG where you check into the hospital and get hooked up with the wires and stay in a room for 24 hours. Because during past EEGs that only last an hour, they really haven't been able to "record" them. I was hesitant, and requested Dr. Levisohn sign off on that idea first. He did when he returned from vacation this week and so they called me to schedule it.
I will be taking him to Children's hospital next Wednesday (Oct. 10th) checking in at 1pm and staying overnight till Thursday at 1pm (about). He's not allowed to leave the room (although he can walk around the room), so we're going to pack up a LOT of entertainment, as you can imagine. Ken is going to work from home Wednesday all day and Thursday till 11ish. So if you want to stop in and see us you can (or help Ken/Grandma with other 3) :-). Charles will be on camera for the whole time as well being evaluated and a neuro doc will analyze the video and any seizures that show up on the EEG.
Wish us luck! I'm worried about it. It's going to be really tough on Charles to be hooked up that long.
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