Today I’m still very excited about the last couple days of discovering and confirmation from a licensed Dr. Camile.  I’m also very anxious because we are getting in that range of 15-20 days in between events.

It feels like glutamate accumulates in the body and if it is not being converted into GABA via the GAD enzyme is when it causes a problem over a given timeframe.  And maybe it takes Sarah 15-20 days for Sarah to get so much glutamate in her body that she pops.  Again, this is just a feeling, but it is also fact that her events have been spaced 15-19 days apart.  Today is day number 17 in the clear.

BUT, and yes, this is a big BUT; We are also 17 days into a very strict diet with strict nutritional supplementation including the B’s and a magnesium that appears to have better ability to pass the BBB.  We are also well into the Keppra medication which is designed to block the glutamate via the calcium channel blocker.

I try not to talk to Sarah about my research because the last thing I want to do is create false hope.  I simply instruct her in what she needs to be doing.  However, this time was different for a couple of reasons.

The connection of the GAD enzyme with the conversion process from glutamate to GABA and a confirmation by Dr. Camile that a GAD deficiency is a common reason for this is something I had to share.  

I asked Sarah if she had a few minutes to talk after she finished her homework.  I got that look.  I said it is up to you but I want you to know where I’m at with everything we have learned from the doctors and my research.

I showed her all my notes and explained the GAD connection with glutamate to GABA conversion and what can cause a GAD deficiency.  I drew out a nice diagram on paper showing the flow using the gas pedal and breaks as a visual.  

This diagram depicted how the Keppra is working to block a glutamate excitatory event vs how the GAD is supposed to work naturally by converting the excess glutamate to GABA.

This also allowed me to explain that candida is a very difficult thing to cure, and it takes times and discipline and that we are not out of the woods yet.  I wanted her to understand it is possible she may have another event without saying it so it won’t be as destructive to her if that’s even possible.

Later Sarah and Sheryl went to the bank or something.  When they got back, I asked Sheryl how was Sarah?  Did she say anything?  Sheryl said, “yes, she says does this mean I won’t have to take Keppra for 2 years?”  Sheryl told her that is our plan if we can find and solve the root cause which we think we are getting very close to.  Sarah was very happy to hear this!”

And to top off a great day, Sarah pooped her 2^nd sample.  Only 1 more to go before we can mail them in and get the results.  I just wonder if it will show anything or could we have been making progress these last weeks with our eating habits and supplementation.  Either way, it will be good to see some real data.

The only baseline I have is the poop and blood samples from October 2020 with Dr. Nicole.  And that showed candida overgrowth, low vitamin D (almost deficient), low B6 and B12.  I can only assume the condition got much worse as time went on since the first event didn’t happen until July 18^th 2021.

I do have some data from the ER visit that day, but it really doesn’t have much.  However, it did show moderate bacteria in her urine test which could be another sign of Candida overgrowth as urine should come back clean.  They tested for Sodium, Potassium and Chloride but not magnesium. 

I just realized today that I have 4 doctors involved and soon to be 5 when we go to the other neurologist on September 30^th.   One of Sarah’s friends, Adam, plays football and had a game in Monterey last Friday.  Adam is aware of Sarah’s condition.  Adam’s parents came to pick up Sarah and take her to the game.

I chatted with them for about 10 minutes reviewing Sarah’s events and to make sure they were ok with taking her.  Susie, Adam’s mom, told me about a friend who had similar issues and the doctor that treated her found the root cause.  

I called them the next business day to set the appointment.  Sounds like a neurologist who is willing to look for the root cause.  GOD is guiding me through this!

Not the number of doctors matter but rather a doctor or doctors that are willing to actually try and find the root cause.  I don’t like hearing from doctors that 70% of seizure fall into the “unknown” category.

9/11/2021

I am finally caught up with my notes today.  The morning is going very well.  Everybody is in a good mood.  Day 18 and I’m a nervous wreck.

Next Saturday we will be going on our road trip to Idaho which everybody is looking forward too.

Today is a good day to review the supplementation Sarah is taking.  Everything listed below are taken twice a day.  Just before bed around 10pm and first thing in the morning between 8am – 10am depending on if school day.

• Probiotic 100B by Aylish Herbs Inc.
• Magnesium Threonate, 48mg by Jigsaw Health (labeled Brain Boost)
• Active B-Complex by Integrative Therapeutics
  • B1 (Thiamine), 25mg
  • B2 (Riboflavin), 25mg
  • B3 (Niacin), 50mg
  • B5 (Pantothenic Acid), 50mg
  • B6 (Pyridoxine), 25mg
  • B7 (Biotin), 150mcg
  • B9 (Folate), 400mcg (DFE)
  • B12 (Methyl Cobalamin), 500mcg
  • Choline, 125mg
  • Inositol, 125mg
• Wild Alaskan Fish Oil, 900mg
• D3 + K2 by SR
  • D3, 5000iu
  • K2, 100mcg
• Turmeric, 1000mg mid-day only (just added per Dr. Nicole)
• MCT Oil, 1TBSP (fight candida)

Hopefully we have been making progress with healing her gut and she is actually absorbing these nutrients.  

Some interesting research:

What is the Role of GAD?

GAD is an enzyme found in the pancreas that is necessary for the synthesis of a neurotransmitter called gamma-aminobutyric acid or GABA. Neurotransmitters are essential structures in the process of nerve messaging. GABA is an amino acid that reduces nerve transmission in beta pancreatic cells.