I spoke with neurology about Mira's ongoing head-drops and what look like myoclonic seizures. We basically haven't really seen any improvement in the frequency or intensity of Mira's head drops, so we decided to actually decrease Mira's dosage back down to 25mg 2xs daily. We are going to see if things get worse and if so, we will increase it again, most likely above and beyond her current dosage, which is 25mg 3xs daily. All of this is on the direction of our neurologist of course.
Our neurologist (and the neurology clinic in general) doesn't have the experience with kids taking Lyrica, since it is so new to the market. We agreed that it has really been the miracle medication for Mira and we are not about to abandon it yet. This sort of 'reverse' trial dosage is to really see if Mira is really reacting to the Lyrica or to see if we need to look at alternatives or adjunct therapies. I hope that it is just that we need to do some tweaking with her dosage and the aim is to not have her so over-medicated that she isn't able to do anything. There's some action or mechanism at the cellular level (I guess) with Lyrica that has been helping Mira, which could be a clue as to why she is having seizures. If she reacts to lowering the dosage, we will know for sure.
We are also going to push for another EEG, since Mira hasn't had one since last November and all of this new seizure activity would warrant another.
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