As for her diet, no modifications were made. She gained 2 pounds since September! She's around 40 inches or so, and weighs about 42 pounds. Not such a lightweight anymore! Her initial labs came back good, so that is a relief. Hopefully the rest will be good too.
I spoke at length with the doctor about coming up with a new plan of action for her. She is basically seizing around the clock these days. I realize part of this is because of her ear infection (which, by the way is hopefully clearing up). We also realized that her seizures have increased A LOT since we upped her Keppra dose back in September.
So, here's the plan: once her ear infection clears, we will lower her Keppra back to its maintenance dose. This should take about 3-4 weeks to do. At the same time, we will be increasing her Zonegran levels to 100mg twice a day. We were never sure if the Zonegran made an impact after it was initiated. At the same time, a couple of changes were made to her diet and she was recovering from an illness that required antibiotics. So, after about a full month on the increased Zonegran, we will hopefully have an idea as to whether or not it is really beneficial.
Plan B is a little more complicated. We have a few other potential medication options. Lyrica is on the table, so is Felbatol, Depakote, and Clobazam. However, Lyrica was nixed by her neuro in January this year already. He stated it wouldn't be effective in helping her. I plan on reintroducing this drug idea to him when we see him in March. Felbatol is a black box drug, meaning that it has a very severe and fatal side effect called aplastic anemia. Parents are even required to sign a waiver stating they are aware of the potential side effects. However, this particular drug has proven very effective for controlling seizures in persons with refractory epilepsy. Depakote can cause liver problems, and she would potentially have to come off of the diet to start that one (fat chance!). Clobazam seems to have proven pretty effective with some of the cdkl5 children, but this is not FDA approved. Liver toxicity is its reason for not gaining US approval. But, there may be a small chance she can replace her Klonopin with this, if I can persuade her neuro to do so.
So, considering my alternatives, I ask you: What the hell would you do?!
1 comment:
I say you wait and see what happens with the Keppra, but I want to know - what was the real reason the doc gave for nixing Lyrica? And about Depakote - I think you were against this before, but why would she have to go off the diet? Has the doc said anything about going off the diet?
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