Madalyn's doctor tested her blood levels of depakote, along with the routine tests of white blood cells and liver function. The medicine can cause serious problems with both, therefore it will be monitored while she is on it.
Her blood levels were not quite to the therapeutic level, so we increased her to 3 pills at night and two in the morning. Each time she has increased Depakote, her appetite has also increased.
So, I called Michelle, the neurologist's nurse and left this message: This week, upon finally weaning completely off of Keppra, and being on Depakote, Madalyn's behavior is dramatically better. Her attention is still not very good, and her reading is much lower than it was previously, but I'm thrilled to report that she is no longer having long meltdowns every afternoon. However, I'm still concerned because her night wetting has not stopped (as it had on the first seizure medicine). I am also concerned about her increased appetite. She is grabbing food, and always worried that she won't get enough to eat.
Michelle relayed the message to Dr. Parker, and called back with the following message. Let's stay on the current dose for 7 days since we just weaned off Keppra and increased Depakote and see if the appetite subsides as she adjusts to the new dose and see if night wetting stops since we did increase Depakote. Dr. Parker is also concerned about the night wetting, and if it is still happening in 7 more days, we can add a low dose of a second seizure medication that also happens to have the side effect of suppressing the appetite. We don't like to use two medications if we can help it, but it may be needed, so we will just wait and see. If we add the second medicine and that doesn't help with night wetting and appetite, Dr. Parker may want her to come in for another inpatient Video EEG to see if they can tell for sure if the night wetting is being caused by seizures, subclinical seizures, spiking, or it was just a fluke that it returned when we came off Lamictal. That would be quite a coincidence, so I don't think anyone thinks that is the case, but before we continue to medicate (with all the side effects), I think it's very prudent to look further. I was thrilled with this message because it was the first time over the summer I was told about Plan B and C:) And knowing that there is a plan B and C told me that Dr. Parker is taking my concerns seriously.
Additional Notes (to help me keep track)
Today for the first time she was able to concentrate on her swim strokes, and alternate both hands out of the water! She was so proud:) All summer her strokes have been very messy paddles....so this was huge!:) Her smooth strokes with both hands was a beautiful sight!
We did have a couple of minor meltdowns related to reading and signing her name to a birthday card. but, I'm hoping the new dose of Depakote is making her tired (Madalyn's symptoms of tired is hyper, figety, and tearful)...and this will subside. None of this ruined our day, as she was able to recover from each incident quickly....A huge improvement!!!
Her appetite seems to be biggest in the morning and seems to subside to normal in the late afternoon. Maybe we can use this somehow to time doses, or at least keep her busy during those hungry times. Or maybe the whole issue is subsiding, and will soon be a non-issue:)
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