At the end of Part III I mention the mother of all blood tests - the NutraEval. This test measures levels of vitamins, amino acids, neurotransmitters (indirectly), toxins, heavy metals, yeast albicans (indirectly), and various other things that I am sure I'm not mentioning. The big "take-away" for us with Cole what that 1) he was not detoxing 2) He was not methylating 3) he was deficient in all his B vitamins and 4) he most likely had candida (yeast overgrowth). This was a lot to digest but also very important pieces to the puzzle.
If you aren't sure what methylation is, join the club because I had no idea either. Methylation (and this is just my interpretation of it - for a real definition, google it please) is the process of the body absorbing the vitamins and nutrients from food and transferring that energy to the brain. I could be off in my interpretation but I do know that if a person is not methylating, they are not getting enough energy to the brain and the brain is not producing important amino acids like glutathione which is a detoxer. Hence the reason why Cole was a poor detoxer. One was probably related to the other. I have read that up to 20% of the population has genetic mutations on the MTHFR gene (the gene that controls methylation). These mutations can cause issues in the methylation process which is illustrated like cogs or gears in a system. So when one gear stops turning, the entire system doesn't work. Many children on the autistic spectrum have issues methylating and most likely have mutations on their MTHFR gene. I did not order any genetic testing for Cole YET but its something I may look into down the road.
We went home that day from Dr. Taz's office with a new list of things to add to our current regimen. it was becoming a full time job to take care of my son and at this point I had to take a leave of absence from my actual paying job. It was a very hard decision to make but in the end it was the right one and I have no regrets. In addition, I happen to have the best boss in the world and he completely understood what I was dealing with and was incredibly supportive of my decision to focus 100% on my son.
So the next step in the process was to deal with the candida. From what I have read and hear first hand, killing yeast in the body is one of the most difficult things to do because it keeps growing back if you keep feeding it. The reason why its so bad is because it kills all the good bacteria in the gut and weakens the immune system. It also releases toxins that cross over an already permeable gut and cause neurological damage. Yeast feeds off of carbs, sugar, acidic foods, vinegar (not apple cider) and many other things, the list is long. If you plan on killing yeast you MUST go on an anti-yeast promoting diet such as the Specific Carbohydrate Diet or SCD. This was too much for Cole to handle so I modified it. I was terrified but I knew I had to battle through this. I knew the rewards at the end would be well worth it.
But let's answer one question first. You may be asking yourself, how the heck did Cole get yeast to begin with? I mean, he is only 5! I believe that it started at birth. He was a C-section baby so he did not get the good bacteria from the birth canal. He started life at a disadvantage but like I said there was nothing I could do about that. He took many doses of antibiotics from age 2 - 5 for recurrent ear infections and a diet high in sugar and processed food (even though the processed food was considered "organic"). All these factors probably created a nice environment for the yeast to grow and take hold, weakening his immune system and slowly causing neurological damage. It just took 5 and a half years to get to the point where it was glaring and "screaming" for my attention.
Dr. Taz wanted me to put Cole on Nystatin. Its a presciption anti fungal that does a pretty good job at killing off the yeast, especially in kids that have a hard time accepting an SCD diet. I was afraid to put him on this so I chose Grapefruit Seed Extract instead. Its an all natural anti fungal and some say it kills the yeast while leaving the good bacteria alone. I put 3 drops in his NAC (the amino acid) tincture in the AM and 3 drops in the PM, titrating up to 8 drops a day.
They warned me about yeast die off and to be prepared for it. Yeast die off is when massive amounts of yeast die at the same time releasing a deluge of toxins into the body (more so than when the yeast is alive). The body becomes overwhelmed and can't detox fast enough so "die off" symptoms will occur. These symptoms can mimic the flu. After one week of Grapefruit Seed Extract, Cole woke up and said he felt hot but had no fever. After he drank some water he began to vomit uncontrollably. He could keep nothing down and I had to take him to urgent care. I felt terrible but they gave him a zofran to stop vomiting and they could not tell me what was wrong. There was no fever, no infection, no sore throat, no nothing. I told them about yeast die off and my hypothesis and they looked at me like I was a crazy lady. So I just took the zofran and went on my way. By 3pm that day, Cole was playing on our play structure doing flips off the slide. I can not explain what happened to him that day. Dr. Taz thinks it was a stomach virus, I believe it was die off. The reason being, that the next day Cole's tics went from a 7 out of ten (in intensity and frequency) to a 2 out of 10. My husband and I were in shock. We hadn't seen Cole like this in months. He could actually go 30 minutes with out ticcing. It was huge!!! I felt like I could breathe!!! We had bits and pieces of actual silence in our house and my anxiety level went way down. There was definitely a connection between Cole's die off symptoms and this new level of ticcing. Whatever it was, I was accepting it with open arms.
As I mentioned before, we had to modify Cole's diet as we were killing off the yeast. I removed almost all sugar. The only sugar he got was 4oz of organic OJ, berries and a low sugar, gluten/corn free cookie (which he loves by the way). All in all it was less than 20 grams of sugar a day. After about a week on this diet some amazing things happened. My picky eater suddenly was opening up to different foods and he actually ate a vegetable!!! For the first time in his life he picked up a piece of broccoli and ate it. Before this, his sensory issues prevented him from allowing any vegetable to even touch his plate or come with in a 2 ft radius of his body. Now he was picking it up, putting it in his mouth, chewing and swallowing! Hallelujah!!!!! He started eating grilled chicken, turkey, brown rice and wait for it.....salmon! I was making him bacon and eggs for breakfast, almond butter on gluten free bread for lunch with berries and grilled chicken with brown rice and broccoli for dinner. Water with every meal. It was astonishing to witness. My Cole was now eating better than his brother and I attribute this to cutting out all the sugar.
What was interesting to see was the yeast cravings that he had. As the yeast was being killed off, it was trying so hard to regrow in his body. It would cause him to have sugar cravings. Intense needs for sugar where if not met, he would go into a full blown temper tantrum. My son never had tantrums as a child and I certainly didn't believe he was starting them up now at 5 and a half. This was something biological. All he wanted was sugar and he begged for it like his life was ending. Trust me, it was hard not to give in. I felt terrible but I stayed focused. I withheld. I battled through. Cravings are now gone.
So this whole die off, new diet renaissance thing happened 4 days prior to our annual trip to NY. I was elated. All my worries about how my family was going to perceive Cole disappeared. He was still ticcing but at a much lower level and we could go to NY and enjoy our time there. For two weeks we went to the beach, met up with my best friends and their kids, hung with family and just enjoyed our summer! Cole ate so well in NY too! We were able to maintain his diet and supplements consistently even though we were on a relaxed summer schedule.
What I came to realize now that Cole was eating such a wider variety of foods was that I could finally eliminate the processed crap. So out went the cookies, crackers and chips and in with the berries, almond butters and homemade grain free muffins. That's right! I was baking from scratch all of his snacks now. I will share these recipes with you in another post but for now just know that its possible to remove the processed food from your pantry. Its a crutch, its convenient but its hurting our health!
We got back from NY and things were still good but I noticed Cole's tics slowly increasing again. Now those long periods of time without any tics were getting shorter and shorter until we were back with constant ticcing. My anxiety level increased again. Every time I heard a tic it was like a sharp knife was stabbing me in the stomach. Call it dramatic but its true. That is how I was feeling. It HURT me physically to hear these noises and see these forceful movements that my son was making. Plus, it was 3 weeks till Kindergarten and I was not sure what to do.
I called the principal and the special ed coordinator. I told them what was going on and how I wanted to get an IEP started right away. We had the diagnosis and I wanted the full support of the school. They were completely willing to work with me but encouraged me to wait and see how Cole did in Kindergarten before starting the IEP process. I was terrified. If things kept on like this, it would be very difficult for a teacher to teach around all his noises, some of which were very loud and explosive. Things were heading in the wrong direction for us and even though I still had Cole on the anti fungal regimen (5 weeks at this point) and plenty of other options awaited me, I was still discouraged.
That was when I connected with Shannon from SC. God sent her to me and she truly helped me change the course of this entire journey. She is my angel.......
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