The good news is my entries are getting less and less.  Today we are 54 days clear!  There really hasn’t been much to update.  Sarah has been in a great mood these past few weeks and I think part of it is because she is interested in a new boy whose name is Ashton.  I’m sure the other part is she is feeling confident that we may have solved her issue.

Still, my problem with this is it because we are on the Keppra and just masking the issue or have we really solved the fundamental issues that was causing the seizures to begin with.  I want to believe that we have made major progress with her gut health and bloodwork (related).  

As I have stated many times, only time will tell and we just have to take this one day at a time.  Sarah is pooping very regular now.  

We are still waiting for the those last two tests to come back which I also hope will show all normal with the neurotransmitters and methylation. 

I sent an email to our doctor at Stanford asking if it is ok to be giving Sarah Chlorella and charcoal as part of detoxing her for the elevated nickel and mercury.  Still nothing.  Ugh.  Pray you never have to rely on western medicine.

However, we are confident that her jewelry was the cause of the elevated nickel and the amount of fish we were eating was the cause for elevated mercury.  I’m really looking forward to doing the poop and blood tests again to see these things improve.  I think I will ask for the test again during the beginning of December to get them out of the way before the holidays.

There was so much information overload these last 3 months that when I think back at the beginning and what I know now is night and day.  I was so desperate to stop these events from ever happening again.

This may change of course but I think the main takeaways to date are fairly simple and all people need to know this whether they have brain disorders, gut disorders or just general health issues.

• If you ever take antibiotics, make sure you restore the good gut bacteria.
• Avoid MSG at all costs.
• Stay away from processed foods that come in packages.  By default, you will be eating healthier.
• Stay away from fast foods and sugar.  This includes limiting your carbohydrate intake since it turns into sugar.  And for God’s sake, DO NOT DRINK SODA!
• Take a good supplement.  At a minimum, Vitamin D and a good B-Complex.  Additional supplements include, magnesium, zinc, pre and probiotics and turmeric.
• Do your best to eat clean, whole foods.  Just because it says organic does not mean it’s clean.

We are by no means done with this story but I just have also say, you need to question everything western medicine tells you.  Western Medicine has its place of course but they do not have a vested interest in determining root causes of health issues.  They simply want to treat the symptoms, which is fine, but you must take responsibility in finding the root casue(s) if they won’t.  If you don’t, who will.

10/22/2021

Yesterday we had our follow-up meeting with Dr. S from Stanford Children’s Center.  We did it tele-health to avoid the long drive.  We basically gave an update that Sarah is feeling good, sleeping good and no other events including the arm tremors.

I proceeded to give my update in terms of her test results from Dr. Nicole.  Basically, candida is gone, urine clear, vitamin levels back in the normal range.  I explained the high B6 levels but he was not concerned and I told him we also reduced her B-Complex to just once a day.

As I was giving this update Dr. S was patient while I know I can be long winded sometimes.  He did wait for a moment of pause from me before interjecting.  He basically was saying that these issues, candida and low nutrient levels, and Sarah’s seizures are not related.

Well, I probably got a little defensive and responded, “well, whether related or not it is something that needed to be addresses and we have done that and thought I’d update you.”

I then asked if I could read something to him from Dr. Nicole’s college, Dr. Camile, to get his thoughts.  Remember, Dr. Camile is the first doctor who was talking about neurochemistry and the GAD enzyme which is what I have been trying to discuss with the neurologists.  I quoted Dr. Camile, “A GAD enzyme deficiency is common in these cases.”

It was at this point he asked if he could go get his senior neurologist on staff today.  We waited about 10 minutes and he came back with Dr. Val.

Dr. Val explained that after reviewing Sarah’s chart that they believe with high confidence that her diagnosis is “GCT upon wakening”.  This stands for General Clonic Tonic seizures or Grand-Mal seizures.  I guess this is because Sarah’s grand-mals have happened shortly after waking.  

He talked for a while and I waited to hear what this thoughts were on the GAD enzyme which never came.  I then proceeded to brief him on the this with the detail tying in candida, mal-absorption of nutrients and that the B’s, specifically B6 as it is a major co-factor for the GAD enzyme to function properly converting excess glutamate to GABA.

His response was very enlightening.  He asked, “GAD enzyme in the gut?”  I was surprised by the question.  I responded, “well, yes as I believe that is where it is lives but also in the brain.”  He stated, paraphrasing of course, there are new areas of research in this area as it relates to a healthy gut and brain functionality.  

Holy shit!  I was so shocked and taken back by his candor.  This is what all my research has led me too and I finally got a neurologist to indicate same.  I know I’m not a doctor but when you spend over 2 months learning as much as you can about a certain subject you can learn a lot with the internet.

So, what does this really mean.  Is our medical industry so stuck in their ways in treating brain abnormalities from decades ago?  Is this gut/brain relationship really new areas of research?  How could this be when I learned so much about it on the internet?

Are they embarrassed that a desperate father who spent two months researching might have found the root cause against their years of education by our archaic medical industry and big pharma?

This just reinforces that we the people must take charge of our own health and medical issues.  It has never been so clear to me.  

His response was very encouraging to me as I wasn’t dismissed as just another parent who thinks he knows everything from reading a few articles on the internet.  It was more like hundreds of articles by the way!

Maybe I’m being too harsh but after being dismissed several times it gets very frustrating, and it was refreshing again to hear that it is plausible.  These were his words that gut health is a plausible root cause.