Thursday, November 12, 2009

Tying up loose ends

When I entered the post the other day, I warned that it might not be coherent. Well that wasn't the issue (I don't think), but I left out some details that I wanted to share. Now I promise that this post will be pretty random as I try to cover some things that people have asked about or that I just forgot to share.

We have been sleeping well the past 3 nights! Woo hoo! We have decided to give Emily Prevacid from now on until she is off Depakote. She has had no reflux problems since we took her off in April, so I firmly believe her recent issues are caused by this lovely drug. So we had added Prevacid to her 7pm feeding. She has been sleeping peacefully ever since (and so have we!).

Some people have said "Oh great!" when I tell them that the EEG didn't show any seizure activity. Well, it isn't really great. We know there is seizure activity going on, we just weren't able to capture it. So really that means the test was pretty useless. The nurse practitioner said that the reason could be that Emily was not sleeping. I also asked her if the 2 meds she is taking could affect the test and she said possibly.

We are happy with the new plan to increase Keppra and then get rid of Depakote. We have liked Keppra, Emily has reacted well to it and until just recently, it has worked well to control her seizures. We are supposed to increase the doses over the next week or so (it isn't a huge jump up, but it is best to do it slowly). After we reach the goal dose, we will give her both for a week or so and then start to wean the Depakote. We are planning a trip to RI for Thanksgiving. We may not start weaning her from Depakote until we get back - we don't want to overwhelm her with too much at once. So we will see how it goes.

My theory is, if her seizures are not controlled when we increase Keppra and remove the Depakote, I would like to have another EEG before we start trying any other meds. At that point, it would probably be a good idea to do the 23 hour EEG so we can really get a clear picture of what is going on before we make any decisions about what to try next. Plus we do have more room to go up with her Keppra so that is also an option.

Before all this craziness started, I did make an appointment with a doctor in our neurologist's office for December. Our doctor left the practice about a year ago and we have only seen the nurse practitioner since then (not by choice, but because that was all we could get). I am planning to keep that appointment so we can have a doctor that is familiar with Emily. I may just move the appointment to January so we can see him after the weaning is done, but I haven't decided yet.

At this point, we will probably not keep our appointment in Cincinnati. Yes, we get frustrated with the local neurologist's office but for right now we are comfortable with the plan that we are following. So we will stick with them and not get "more hands in the pot".

We also have not decided what we will do about hippotherapy. Emily has been continuing all of her other therapies, though.

As for Emily's eyes, she has never been given an official diagnosis. We know that she can see. She will look at us, at her toys, at the TV. She will give you eye contact. She just isn't consistent about doing these things. We also know that she struggles with distance. When she is in the living room and we are in the kitchen, she looks in our general direction, but seems to struggle to look right at us (and we are only about 7 or 8 feet away). We have seen improvement with her tracking objects, but we still see her struggling a bit in this area.

Well, I think that covers everything. If there is something I left out, let me know. : )


Stephanie's Mommy Brain said...

Funny how people have questions about different aspects of your post. :)

Here's another question.. Could the cause of her increased seizures be because she's grown so much? Kind of a bigger body needing a larger dose of the meds. kind of thing?

After all, we know she's a Weed. :)

Jeanne Hall said...

I don't remember how I first came across your blog (probably the CP mom's group) but I have enjoyed reading about your beautiful Emily!
Just wanted to let you know that if you ever decide to see a neurologist at Cincinnati Children's I highly recommend David Franz MD. My daughter Natalie does not have seizures but she does have CP and Dr Franz is probably our favorite of her doctors! He is very positive and takes a lot of time to explain and listen to parents. We live in Columbus but find it is worth the drive to see him.
We also have a blog about our daughter Natalie (now 3 yrs old and a former 23 week preemie) at

Marie said...

Frustrating when the tests don't really seem to help, isn't it?
Prevacid is a wonder drug!!! Our son has been taking it for severe acid reflux since he was a baby, well at 4, he's still a baby to me. Just a tip...prevacid works best on an empty stomach and I noticed that you said that you were giving it with her feeding. You are probably already doing this but if you give it 30 minutes before her feeding it will be most effective.