I have learned a lot in the last few weeks.  We are still waiting for our first appointment with the specialist on August 24^th.  

It took us several days to learn about hidden chemicals in our food and get rid of them.  Now it was time for me to go down the next rabbit hole.  Why is she sensitive to MSG?  I keep going back to the question why she had arm tremors half-way into her Accutane treatment which we now know is a pre-cursor to a seizure.

I kept reviewing the data we got from the hospital visit which was limited to minimal blood and urine tests.  Everything fell within normal ranges except for 1 thing.  The level of bacteria in her urine was listed as “moderate” when it should have been negative.  Yes, it could be a false positive because the sample was contaminated but I’m just going to assume it was not.

This made me remember something Sheryl and Sarah organized back in September 2020.  Even though Sarah was done with the Accutane her face was still red and inflamed.  They found a doctor who ran a very extensive blood test and stool test just to see where everything was at making sure she is getting the right nutrients.

I ran into the other room to ask Sheryl if we still have the lab results.  We did.  I reviewed them again and this helped me remember the second meeting we had with Dr. Nicole

When we had our second online meeting to review the results, we discovered she had moderate overgrowth of candida.  I don’t know much about this but we all have some level of candida in our gut, but our body naturally keeps it in check.

The doctor explained the heavy use of antibiotics will do this since it kills off all the gut floral we need in order to have a heathy digestive system.  I think you see where I’m going with this.  Above I had made a correction to the definition of Glutamate where it said most Glutamate is handled in the digestive system.  I corrected it to say it must be a healthy gut.

Sarah was on antibiotics for months to manage the infections in her toes.  Sarah said the tremors started about half-way in the 7-month treatment and I will be going back to that doctor to get a complete list of antibiotics she was on and when she started.

It’s also a possibility Sarah has a “leaky gut”.  This term was new to me as well so did some research to understand what it meant.  I also learned there is a test that can be done to determine if one has a leaky gut.

8/12/2021

Today is the first day back to school.  The day before I made a few calls the school nurse and Sarah’s counselor and explained the situation.  A note went out to all teachers and staff and what to do in the event a seizure happens at school.  The thought is just horrific to think about that but she really wants to go to school and we want her to go as well.

I told her if she feels the arm tremors to text her BFF and she will come to her immediately and in the meantime step outside and sit on the grass waiting for her.  All teachers have seated Sarah but the door.  Based on the past events we know the arm tremors are a pre-cursor to the possibility of an event and she has about 15 minutes if one is going to happen.  Of course, that could change.

Plus her BFF is in her first two morning classes and since this has always been a morning thing that helped comfort me.  Her BFF is also a certified lifeguard and in CPR.  Plus I gave her specific instructions on how to handle if an event should occur.

Sheryl came and woke me that morning which she never does so I immediately knew something was up.  She said, “first day of school” but she looked scared.

Sure enough Sarah was having arm tremors at about 8:00am.  Oh boy, here we go again.  But this was different in the sense that were not as frequent, not as many, and very minimal in nature.  I immediately gave her more MCT oil which I know gets into the blood very fast to give and immediate release of ketones.

I also gave her a tsp of C60.  So, two tablespoons of MCT, 1 she took when she first woke and the second at about 8:15.  The arm tremors stopped.  9:30 still clear since 8:30.  10:00am still clear.  She was adamant about going to school.

We took her to school at about 10:45am.  Talk about nervous parents.  I could not focus on anything but the clock that day.  Well, I also asked myself why did this happen since we thought we were doing so good.  I review my notes from the day before and found something that would have knocked her out of ketosis.

Sheryl had found some pasta made from foods like almond flour, cauliflower flower and when I looked and just quickly said it looks heathy.  What didn’t register to me was that it was not keto friendly.  I calculated she had about 65-80 grams of carbs.  That will for sure kick someone out of ketosis.  Is that the reason?  Hell if I know but that’s all I had to go on.

The last time she arm tremors on August 2^nd and 3^rd,  it was shortly after eating 3 baskets of strawberries which I believe also kicked her out of ketosis.  The rest of the day went without issue