ANNIE’S STORY – PART SIX OF TWELVE
After Annie’s regression, I saw some encouraging gains from starting her on the Gluten Free Casein Free Diet (GF/CF) and some basic supplements. I had read all about the Defeat Autism Now (DAN!) protocol and was anxious to try it. I knew I was at the point where I needed professional help in order to get Annie to the “next level.” So, I found a DAN! doctor and made an appointment as soon as possible.
The doctor’s first step was to order tons of lab testing – blood, stool, urine, etc. The results confirmed what I already knew; Annie was a sick little girl!
Since Annie was already on the GF/CF Diet, her doctor wanted to begin by addressing her food allergies. According to the lab test, Annie was allergic (“sensitive”) to just about everything. Her doctor asked me to eliminate all the foods she was allergic to for 60 days. This was another drastic diet change. On top of eliminating gluten and casein, I no longer let Annie eat corn, soy, additives/preservatives, food coloring, chicken, potatoes, tomatoes, and numerous fruits.
I was overwhelmed. I had to learn to make everything from scratch. This was not easy for me since my idea of cooking was heating something in the microwave or thawing a frozen dinner. Annie seemed to hate everything I made. But after a period of trial and error, and a lot of help from my mom, I finally found new things she would eat. After 60 days on the elimination diet, Annie’s gut issues were significantly better and her language took another jump. Even though her doctor said I could add back in some of the foods Annie was allergic to, I decided to keep her on the diet. I didn’t want to do anything to cause more inflammation to her gut.
Next, the doctor wanted to attack Annie’s yeast (candida). He wrote us a prescription for Diflucan and I filled it right away. But once I had the pills, I was too scared to give them to Annie. I just stared at them every day, but couldn’t bring myself to give them to her.
This was the beginning of what Leah and I call my “supplement graveyard” – where supplements go to die. I have a cabinet, filled with supplements, that I once thought were going to be the “magic bullet” for Annie. But now, I have given up on them for various reasons and yet, I still can’t bring myself to throw them out. They are like my pets. I admit it – I am a supplement hoarder.
But back to Diflucan. From what I had read on the internet, Annie would have to be on and off of Diflucan (or other, even stronger prescription antifungals) for a long time in order to keep the yeast under control. To me, that just didn’t seem like it would be healthy for Annie in the long run. Since I had made a vow to follow my “mom instinct,” I opted not to give her the pills and explained my rationale to my doctor at my next appointment. I asked him if we could try natural antifungals instead. To his credit, he did not make fun of me or put me down and agreed to follow my intuition.
I tried probiotics, grapefruitseed extract, olive leaf extract, monolaurin, caprylic acid, uva ursi, and oregano oil. I tried them in various combinations and potencies. I rotated them. I tried everything to make them work. But the lab tests proved I was doing little more than keeping Annie’s candida in check. It hadn’t gotten worse, but it wasn’t any better either.
My doctor and I were at a stalemate on the yeast issue, so he moved on to other suggestions. He helped me add several key vitamins as indicated by Annie’s lab tests like: Vitamin D, Riboflavin, Magnesium Malate, Zinc, Co Q10, GABA, and Inositol. He told me to give Annie Melatonin and 5HTP to help with her sleep issues (they helped her fall asleep, but then she’d wake up at 2am ready to rock-and-roll). Lastly, he prescribed Methyl B12 shots to be given every 3 days.
From these additions, we saw more exciting progress. Annie’s vocabulary continued to grow, she was more aware, less stimmy, and her sensory issues were better. The most dramatic change came from the B12 shots. After a month of the shots, Annie was back to the social little girl she was before her regression. Once again, she marched right up to kids desperately trying to play and talk with them despite her limited language.
Next, my doctor spoke to us about chelation. He believed Annie could benefit from EDTA suppositories, since she had extraordinarily high levels of lead in her system (along with plenty of other heavy metals). I read about EDTA for myself and learned about the possibilities of chelation disturbing mineral balance in the body and/or the heavy metals doing additional damage to Annie’s brain on their way out of her body. The risks seemed too high, so I declined and asked my doctor if there was anything else we could try.
He suggested nebulized Glutathione as a way to improve my daughter’s immune system and perhaps, get the body to chelate itself. Well, that process was a nightmare. I had to wrestle Annie to the ground and try to hold a mask on a kid with sensory and anxiety issues! Not fun. And on top of that, it made her horribly hyper and stimmy. I wanted to try oral or topical Glutathione next, but the doctor informed me that they often lead to a yeast outbreak so, I gave up on Glutathione altogether.
Our doctor, bless his heart, was still willing to work with me despite all of my neuroticism. His next suggestion was the Hyperbaric Oxygen Chamber. Once again, I did my homework. But this time, I had a good feeling about it. For some reason, it made sense to me. I felt like inflammation and lack of blood supply to the brain were at the core of Annie’s issues and it seemed logical to me that hyperbaric could really help. I was beyond excited. We drained our savings in order to buy a home hyperbaric chamber. I could not wait to get started. I was fully expecting a miracle.
To be continued…
NOTE: I want to make sure that nobody thinks I am bashing DAN! doctors or the DAN! protocol. The DAN! doctors I’ve encountered are amazing human beings who truly want to help children with autism (in fact most of them have children with autism themselves). I know the DAN! protocol has recovered or improved the lives of many children and families struggling with autism. For Annie, I believe the DAN! interventions we did improved her health dramatically and laid the foundation for what was to come.
FOR PARTS 1-5 of ANNIE’S STORY: https://ventography.wordpress.com/category/annies-story/
For information on:
Allergy therapy: http://www.healthinducedautism.com/allergy-therapy.html
Candida treatment: http://www.healthinducedautism.com/candida-yeast.html