Some Slight Medication Changes

Raquel had a great week at school last week. She's been seizure free at home since those first couple occurred the days following her hospital release. She's been happy and content, and seemed to be adjusting well to her increase in Keppra.

Then last Thursday and Friday, she had a seizure at school, coincidentally at the same time - between 1:30 & 2:00pm. Thursday's was very slight - one aide didn't say she'd particularly call it a "seizure" because she was responsive. But on Friday, it was much longer and she apparently seemed disoriented for a few minutes. And on both of these days she was so tired when I picked her up, she fell asleep in the car and I carried her into the house that way. So I called Dr. Mower - AGAIN - and explained what was happening. Have I mentioned how much we love Dr. Mower? Just checking. :)

What he recommended I do was split up the doses a bit. Instead of giving her 6ml in the morning and 6ml at night, he wanted me to try 4ml when she wakes, then 4ml right before being dropped off at school, then keep her regular dose at night. She's pretty much maxed out with this amount of Keppra now, so if this doesn't work, it's time to wean her off of this an on to Lamactil, which is what he preferred her going on before Keppra. But I'm stubborn and do what I feel is best for her because of side effects, and she has really responded well to the Keppra.

I started this new dosing on Saturday, and I have to say that she seems to be adjusting very well to it. She's happier and more playful than I've ever seen her. And she seemed a lot more vocal. No seizures at all over the weekend and I was concerned as to how she'd do at school. Being overly tired for her seems to trigger some of the seizure activity.

Yesterday was a great day at school and they commented on how she was being a lot more verbal and were happy to hear that. She took a brief nap after being in the motor lab (not uncommon for her), but overall had a great day. Today when I picked her up, her class was outside on the playground. I love watching her play with the other kids and parked a little bit away so I could spy on her. But I couldn't see her. Gabby ran over and asked Miss Heather where she was and we went to the classroom and found this:



Apparently this is what she likes to do when the speech therapist walks in. Doesn't she look comfortable...



... on the giant bear?



So I had to wake her up and carry her half way to the car before she fully woke up. When I got her home, she easily went down for a nap and slept for over an hour. But she came out of her room all smiles when she woke up and was ready to play. Because they know that being overly tired can cause her seizures, they are letting her rest when needed. And today she had occupational therapy and then speech along with all the other daily activities. I'm glad they let her sleep instead of insisting she go on the playground. That could've been a bit much for her today.

I'm hoping that this new medication schedule will help. So far, so good.

Getting Settled Again

I kept Raquel out of school the remainder of last week due to all the medication changes plus the seizure activity going on. I wanted to keep a close eye on her. If she has two or more seizures in one day, I have to give her a heavy valium dose for two days after, so it's important to make sure all is well. This dose is so strong that I had to provide a hard copy of the prescription (they are typically just faxed/emailed in these days), and the pharmacist had to speak with the neurologist to confirm the order. Dr. Mower prepared me for all of that though, and assured me it is okay. And he's not saying to give it to her on a regular basis - just if that happens and then to call him.

Since we've been home, she has had two seizures. One on Thursday morning and then one on Friday morning. Both were very brief - nothing like when we were in the hospital - and probably only lasted maybe 10 seconds. I definitely think the increase in Keppra is helping. In the hospital, she was very stressed by it all and Dr. Mower thinks that because she was so stressed and sleep deprived, that was triggering them. Whatever the cause, I'm just glad it happened there and am glad to have her home. She was a bit out of sorts on Thursday and Friday and had difficulty sleeping. She kept waking up and looking all around as if she was checking to see where she was. That got better over the weekend and she's pretty much back to her normal self today. I'm doing my best to keep everything calm around here. That is definitely an environment that suits her best. Me, too.

She had a great day at school today. She didn't have any trouble getting back into the swing of things, even though she was out most of last week. Her teacher and aides were so happy to see her and kept telling her how much they missed her. Miss Sara even called this morning to make sure she was okay and would be back today. I'm so blessed to have finally found an awesome class for Raquel, and am so saddened that she's only going to be in it for a few more months. :-(

So my last post was done with very minimal sleep and with a spinning head, so I've been asked some clarifying questions. I'll do my best to fill in the blanks...

First off, I was not implying in any way that it was a good thing she is having seizures. What I am happy about is that they were happening while she was hooked up to the EEG machine. This is the third time she's had the EEG done - one at home, two hospital stays - and all of those just showed abnormal brain discharges, particularly during sleep. Because she had multiple seizures during this last test, Dr. Mower was finally able to see what part of her brain was doing what, and has given her a primary diagnosis of Epilepsy, which he can now treat her for. That is a good thing. Knowing what to treat is half the battle. I think back to all the tests she's gone through, all she's endured, and can finally say that I feel a bit of relief. I know it's still an uphill road we're facing, but at least now there is a sense of direction.

So what is the treatment? Basically finding the right medication to prevent the seizures from happening. The Prednisolone she's been on did help decrease some of the abnormal discharges, but not enough to continue on it because of the severity of side effects. This weaning process is going to take 4 more weeks. If the Keppra starts to lose its effect, we will most likely move on to Lamactil. She has also started taking B6 supplements and there is a Ketogenic Diet that is supposed to be amazing - although extremely structured. I just joined a Ketogenic support group of parents using this diet. I'd like to research it a lot more before committing to doing it, but from what I've read, this diet dramatically decreases seizure activity.

And the research begins...