We were all up early and exhausted. I did not sleep. Got to our appointment for our first EEG at about 8:30. Our appointment with the actual doctor wasn’t until 1:30 so we spent time shopping at Stanford Mall and found a place for breakfast.
Because of Covid, only one parent could accompany Sarah and it made sense that it was me. We met the doc and he spent about 30 minutes with us listening to the history of these events.
He said that the EEG did not show any anomalies but suggested we do the 24-hour EEG where we come to Stanford to get wired up and go home. We said of course. He said, he was going to go brief the head of neurology and they will both come back to talk to us.
While we waited, I was writing down questions, so I didn’t forget. I asked Sarah if she had any questions. Hers was simple, “why 6 months?” Which of course meant why do we have to wait 6 months before the doctor will sign-off on her driver reinstatement.
The decision was to put Sarah on a drug called Keppra. Although I don’t like western medicine, I’m very motivated to stop the events. The plan is to stop the seizures for 6 months at a minimum, remove driver license suspension, and stay on meds for another 2 years before trying to back them down and see what happens.
Ugh! I mean I get it, but WHY is this happening! The response was basically, it just happens and can happen in adolescence, and some grow out of it, and some don’t.
I presented my possible theory with the Accutane and 4 months of being on antibiotics because of the Accutane side effects and basically destroying her gut. Furthermore, I explained that the arm tremors had started 4 months into the Accutane treatment after about a month on antibiotics but never resulted in a full on grand-mal seizure.
I said, “if it looks like a duck, walks like a duck, quacks like a duck, it must be a duck!”. Well, they basically rationalized it away by simply saying the Accutane/Antibiotic treatment could have just exposed an underlying condition.
Well, not good enough for me. We are still going full throttle ahead with Dr. Nicole to check out her gut. We are waiting for Sarah to get three poops in so we can get three samples needed. That in itself is a very tell-tale sign in my opinion. It’s almost been a week since her last poop.
Don’t get me wrong, I really do appreciate the doctor. He is just trained to do what he does which is to simply treat the problem and not look for the root cause. This is the major problem in western medicine.
As you may have surmised, I have cried a lot in private and sometimes in public when trying to describe these events. Well, this happened in the office with the doctors even though I tried so hard not too so Sarah did not see my weakness.
The doctor saw my eyes and he teared up as well in seeing my pain. I don’t know if he has kids or could simply see how torn up I was, or both.
8/25/2021
Although we do not like to use western meds we were grateful because we at least had something to give us some hope that we may be able to stop these events. However, watching how this Keppra effected Sarah was not fun. It made her lethargic, like she just woke up and still trying to gather her thoughts.
It seemed it took a couple days for her to adjust to the medicine each time we increased the dosage. It was a step-up of 500mg twice a day for three days, 750mg twice a day for three days then 1000mg twice a day. Each time we increased dosage we observed the same lethargic, malaise behavior.
8/26/2021
I keep coming across Taurine as a supplement to help increase the GAD enzyme production. I should say I keep coming across the GAD enzyme as the primary enzyme that converts glutamate to GABA. I first came across GAD on August 4th as it made it to my notes for the first time. More on this later.
Let’s think about this for a second. Sarah is not the only person who gets overloaded with glutamate. It’s in all our foods naturally and in all our processed foods. We should all be walking around having seizures but we don’t; why?
Perhaps we have plenty of the GAD enzyme to convert the excess glutamate, the excitatory, into GABA, the inhibitory.
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