Meara had a EEG stay at the end of June. Were were there for three days and during the stay she had one seizure. The rest of the movement in her sleep they identified as arousals. So, that is good news. She might not be having as many as we think based on this snapshot.
So, the current seizures are coming from her motor strip, or right behind it. This means that a "third player" showed up. The first surgery took care of the first player, the second surgery took care of the second player by isolating the activity in the frontal lobe. The latest EEG did show some spikes/seizure activity in the frontal lobe that they disconnected in the second surgery. Basically with the second surgery it has prevented the second team from affecting the rest of the brain. Think of it as putting the "bad guys" on an island by themselves.
In terms of a surgery perspective the next course of action would be to do a hemispherectomy and she would lose all motor function on her left side regaining some of it with intense physical therapy. We've already decided a firm no to that route. What it means though is that her current seizures could be affecting her motor control anyway. Now, Megan and I haven't seen any noticeable loss yet. Given the fact that she's had seizures since was two weeks old perhaps it is not out of the realm of possibility that her brain has moved her motor function somewhere else in order to avoid interruption or damage from the seizures. Well, at least that is my own positive lean. The other positive lean is that at least they are not affecting the cognitive part of her brain. The meds affect her cognitive development but at least the seizures aren't.
We had an appointment with Meara's neurologist this afternoon at Childrens and we informed her that we are pursuing the Charlotte's Web strain of CBD. To our awesome surprise the neurologist shared with us that the hospital is in the process of securing a clinical study of a synthetic version of CBD. She'll present to her boss next week. They will have to choose between two different competing manufacturers of the drug and then hopefully begin trial within a few months. We told her that we would like to be considered for the trial if Meara qualified. This could be huge if it works. If it does work it means that since it is a synthetic version and FDA study approved that we could travel with the drug and it would be included in our insurance formulary later down the road. In other words, it would be legal across state lines and also managed by the doctors that we've been seeing for the last six years. We are still on the waiting list with Realm of Caring but since we are at the mercy of how many crops they can grow/harvest it might take a very long time until they can take Meara on as a patient. And it is important for Megan and I to keep in mind…that it might not provide control for the seizures. But at least it is another route to pursue with a heck of a lot less risk and definitive deficit loss than another surgery.
Meanwhile, Meara is doing well. She is highly active and looking forward to first grade next year. She loves her sisters and continues to beat the odds. Resilience baby. Resilience.
Love to all,
Aaron & Megan
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