Letter to Valerie, Dr. Bell's nurse

Dear Valerie,

As far as seizures go, Rick is doing fine. But there are some other things that are concerning to me and I wonder if they could be side effects of Topamax.

I think maybe he is having some hallucinations. It is hard to tell since he can’t talk. But he gets very anxious, maybe frightened, at times, saying, “Ohh..oh no.” Once he even slapped his leg like something hadn’t gone the way he thought it should. Sometimes he has said , “I’m sorry.” He wakes up at night at least once each night with a start, jumping up in the bed and trying to get out of it, very anxious. I can calm him down in just a minute or two and he goes back to sleep. Then usually sleeps the rest of the night without incident. May get up once to go to the bathroom.

He seems to be a little more agitated this week also. Friday was a great day. I can’t remember when he started getting this way. But most of this week he has been more agitated, rubbing his hands together. Not staying focused on his eating. Not sitting still in his chair. Looking worried. More resistant to my direction. Hard to get him to sit on the toilet and chairs. He pulls his hand away when I try to lead him somewhere. Sometimes he doesn’t want to move his feet.

These things have happened in the past but I felt they were medicine induced. Especially since he has been so good about all of this with the Dilantin gone.

Do you think that his Topamax is too high? I just started with the generic yesterday and these symptoms have been going on all week.


Valerie's response:

Dr.Bell says to try staying at current dosages of Topamax and Keppra for now---give it another week to see if these symptoms resolve. If not, then he says we can try reducing the Topamax by 25mg to see if that will help with side effects but keep seizure control.. He feels like if we give it a little more time, that he will become more accustomed to the medication and the symptoms will fade away.


My comment:

I didn't think about the fact that these symptoms might be part of the adjustment to the medicine and may go away in a little bit. I will keep observing.

No More Seizures

Rick is doing fairly well now. He isn’t a zombie. He is much more alert and talkative. He is eating well. It seems the Topamax is working. He hasn’t had any more indications of seizures. Praise the Lord!

He seems to have some hallucinations. It has been hard for me to tell if he has had any before this since he doesn’t talk much. But he wakes up in the night with a start and is very anxious. I can usually calm him down quickly and he goes back to sleep. He sleeps all night except for these occasions and that is usually only once a night.

This morning on the way to the center, He started saying “Oh! Oh! Oh no!” over and over, slapping his leg. I asked him what was wrong. Of course he couldn’t tell me. But he looked at me with a frown on his face like something terrible was wrong. I wondered if he was hallucinating then. I need to ask Valerie to ask Dr Bell it this could be a side effect of Topamax.

Good Report

I got a very nice note from Lynn, RN, at the center today.

Hello Joyce,
I wanted to let you know that Rick had a great day! He took a bath without struggling with the CAN’s, he’s been very alert, smiling and talkative. No seiqure activity noted! He ate lunch without assistance and walked about most of the day.
Thought I would send you a happy note. :)
Lynn

Praise God for a good report!

A good night

Well, Rick slept all night except getting up at 12:30 am to go to the bathroom. It is 6:30 am now and he is still sleeping. He woke up a little bit and rubbed his eyes, but has gone back to sleep again. I don’t know if I will take him to the center today. I need to be able to observe him yet, until he gets back to normal. I decided to not work today too, so that I can observe him better.

He ate good for breakfast. I only gave him 75 mg of Topamax this morning. He has been walking around and then finally sat down on the chair and went to sleep.

I talked to Valerie, Dr. Bell’s nurse, this morning. She said it was ok to only give him the 75 mg this morning but then go to 100 mg bid from here on out. I hope he doesn’t become a zombie on this medicine also.

More seizures

So I increased Rick’s Topamax Thursday to 75 mg bid. He seemed to be fine. Then on Sunday he was having the little starts off and on all day and then again on Monday morning. I called Valerie, Dr. Bell’s nurse, and she said Dr. Bell said to give him 100 mg at his evening dose and keep the 75mg at his am dose. So he got his first 100mg dose about 6:30 pm last night.

I went to Bible Study Fellowship last evening and Debra Riley was here with Rick. She said about 8 pm he had a seizure-ish episode with muscle jerking and being out of it, not unconscious, lasting about 5 minutes. Then he was ok and ate a bowl of ice cream all by himself.

This morning he seemed ok and was easy to get along with. I took him to the Center. About 8:45 am I started getting calls on my cell. I was on a conference call for work and didn’t respond to them. But then my home phone called. So I decided I had better answer it. It was Lynn, RN at the Center, saying Rick had a grand mal seizure there this morning about 8:30 am. He fell forward and bumped his forehead on the floor and got several abrasions on is face from the carpet. So I went to pick him up. I spoke with Dr Bell’s nurse, Valerie, who spoke to Dr Bell and they said to give him a bolus of Topamax today of 50 mg when I got him home and then another 50 mg this afternoon and then his regular dose at supper. She told me that it takes about 7 days for the Topamax level to get up in his system and become effective. So hopefully the bolus will help to bring it up faster.

Rick is home now and sitting in his chair in the living room watching TV.

Rick has been so much more social since he has been down and off the Dilantin. He is more alert, stays awake more, tries to make jokes, says more meaningful things and laughs a lot.

The other evening we were sitting on the couch in front of the living room windows. It had been a beautiful day and I had the window open and the whole house fan on pulling the cool air in from outside. It was getting a little chilly. All of a sudden Rick looked at me and said, “I’m cold.” He does get cold a lot easier than I do. That was a very good statement letting me know what to do for him.

Rick was in the living room in his lounge chair watching TV. I kept checking on him while I did other things. He didn’t seem to fall asleep at all. He just sat there with his head up looking toward the TV. I decided that I should be able to go back to work after lunch, so I emailed Mary Beth, my manager, to let her know this.

Then I proceeded to prepare lunch. I got out some frozen hamburg and put it in the microwave to thaw it. I was going to make sloppy joes. It took me about 30 minutes to get it ready. Just then Rick came walking out to the kitchen. So I sat him down at the table and brought his plate to him. He picked up his fork right away trying to eat it. I hadn’t gotten it cut up for him yet. As I was cutting it, I noticed he was having those little starts every few seconds. I went to get his second dose of Topamax bolus – 50 mg. I gave it to him but he had trouble swallowing it. Those little starts interfered. I was afraid to let him eat much because he might choke on it.

So I decided to call the doctor again. I reached the receptionist and told her that I needed to speak to Dr. Bell or Valerie in person, not just leave a message. She went to get Valerie. Before she got back Rick had a second grand mal. He was sitting in his chair, so didn’t fall. As soon as the jerking was over, about 30 seconds, I pulled him in the roller chair over to the couch to try to lay him down. This was a very difficult task. He was limp, dead weight. Just as I got him on the couch I saw that he was wetting himself…and my couch. I also found blood on his mouth. He must have bit his tongue during this seizure. I hadn’t noticed that at all with the others.

This all happened about 1 pm. I had to email Mary Beth again to let her know that I wasn’t going to be working at all today. Rick slept until 3 pm. He then woke up enough to get to the bathroom. I was able to take off his wet clothes and put his pajamas on. He is in the bed sleeping again now.

Valerie called me back saying that Dr Bell had two options. We can wait to see if the Topamax will take effect, or we can give him a bolus of Dilantin to hold him until he gets regulated on the Topamax. She said Dr. Bell would call me after he got out of his meeting this afternoon. I opted to wait until this afternoon to talk to Dr. Bell. I really hate to put him back on Dilantin, but will if Dr. Bell thinks it is the best thing to do.

4:05 pm. Rick is waking up again, but has just turned over in the bed and is settling down again.

Dr. Bell called me about 5:30. Rick had been sleeping most of the afternoon, only getting up to go to the bathroom a couple of time. We decided to see how he did with this bolus of Topamax instead of going back on the Dilantin.

It is now 6:30 and Rick is starting to get more active. He got up by himself and walked around the end of the bed and then it happened. He had one of those little starts. I said, “Oh, no. You are not going to do that.” As if that would stop them. I put him back in the bed and went to get his supper time pills. There is 100mg of Topamax in that dose. I crushed them and put them in maple syrup and he took them without difficulty. But he keeps having those starts. Even while he is lying still in the bed. I just don’t know what I’m going to do. I hate the violence of the seizures. It hurts me to see him have them. I hope the medicine kicks in soon. It’s 6:40 pm and he has gone to sleep.

7 pm. We just got back up to the bathroom. He didn’t do anything but he had very minimal little starts. I could hardly make them out. He is back in the bed resting. Not asleep, but close to it.

7:07 pm. Rick is asleep. Praise the Lord!
7:14 pm He is awake again. He went back to sleep again and has been sleeping for the last 2 hrs. He would wake up and change positions and then go back to sleep again. I sure hope he will sleep tonight when I’m ready to go to bed.

Rick's Journal

I have finally entered Rick's journal into the blog. It goes back to May 2008. If you want to read it chronologically, you will have to go back to the May 2008 link and scroll down to the last post and work your way up.

These are the notes and comments that I have written down as things happen to him. I hope they are not too boring.

Finally off Dilantin, but now seizures

Rick took his last Dilantin Saturday night 050209. He hasn’t had any indications of seizures. One morning he had a couple of those little jerks that are probably the beginning of a seizure but it didn’t amount to anything. I hardly noticed them.

This morning, after sleeping all night, he had a grad mall seizure. He had gotten up and gone to the bathroom. I washed him up and had gotten his underpants on. He had a little trouble getting them on but he did with my help. We had gone over to his side of the bed to get his clothes on when he started his seizure (6:51am). I was able to lower him gently to the floor. He jerked for about one minute and then slept with deep breathing for a couple of minutes. Then he slept with normal breathing until 7:06 am. Then he woke up trying to get up. He couldn’t get up so I was able to get him comfortable on the floor again. He slept like this waking up off and on trying to get up. Finally I was able to get him in the bed. Again he would sleep and wake up restless, sleep and wake up restless. He finally went to sleep and stayed asleep for a good while. He just got up to the bathroom (9am). He was a little unsure on his feet but we made it there and back again. He has gone back to sleep.

He got up about 11:45 and we got lunch. He ate well and he has been up ever since. I tried to get him to lie back down, but he didn’t stay there.

We went outside for a little bit to look at how the garden and flowers faired in the thunderstorm last night. He did fine, acting his normal. I had to keep calling him back or he would wander away.

3 pm. I think he is back to normal now. I still haven’t heard from Dr Bell. I hope he calls me soon.

9 pm. We came home from church and had a message on the phone. Valerie, Dr. Bell’s nurse called saying she talked to Dr. Bell and he said to increase Rick’s Topamax to 50 mg am and 100 mg pm.