A Ventography!

Just two moms letting off some steam

AUTISM RECOVERY CAN FEEL LIKE BANGING YOUR HEAD ON A BRICK WALL

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ANNIE’S STORY – PART EIGHT OF TWELVE

To recap, Annie had just gone through a second regression from too much hyperbaric oxygen therapy and I had hit another emotional low. I knew our Defeat Autism Now (DAN!) doctor didn’t have much more to offer us since I was too afraid to try most of his suggestions.

I felt I had two choices – give up on recovering Annie or strike out on my own. I decided to take some time off from the DAN! stuff and to go it alone.

A lot of the moms I talked with on the chat boards had experienced success with Nutrigenomics. To me, it made sense to customize Annie’s supplementation based on her unique genetic mutations, so I decided to give it a try. I sent in some of Annie’s blood and anxiously awaited the return of her Nutrigenomic panel results. This test was designed to tell me what mutations Annie has in the genes related to the methylation pathway and how to support those mutated genes with supplementation. Supporting the methylation pathway leads to better brain health, immune support, nerve health, and energy.

When I got Annie’s results I was relieved and yet, strangely disappointed. I was relieved because Annie did not have any double mutations (mutations inherited from both her father and I). In other words, all of her genes were functioning to some degree. However, she did have several single mutations (or genes that were not functioning optimally). I was disappointed because the supplement plan to support single mutations was confusing and ambiguous… sometimes you need to support the gene and sometimes supplementing it could make it worse. I was back in the land of guessing and experimentation.

The plan required giving lots and lots of supplements in low doses. You were advised to start each new supplement several days (if not weeks) apart so you know if each particular supplement agrees with your child. The idea being that if adding the new supplement was the only thing you changed for your child in a given period of time, then you can safely attribute any positive/negative changes to that particular supplement.

Annie’s tantrums seemed better after starting the first couple supplements (about a month on the plan). I was so excited that I stupidly stopped waiting the advised number of days before adding new supplements. Before I knew it, Annie was on over 20 different supplements, she had gone crazy, and I had no idea what was causing it. I had to start over.

I took her off all the supplements and began again, but I quickly realized that this plan wasn’t for me. It was too confusing to try to figure it out without being able to talk with someone. I think if Annie had double mutations where supplementation is clearly needed, this plan would have worked better for me. I was back on the hunt for a new direction. HEAD BANG NUMBER ONE.

I had read a lot about Linus Pauling’s work with Vitamin C – that it can chelate, kill viruses, build the immune system, etc. So, I decided to give high dose oral Vitamin C a try. Annie’s diarrhea got worse, she got more stimmy, and became ridiculously hyper and aggressive. I called my DAN! doctor to ask for help and he informed me that the reason he does not advise high dose Vitamin C therapy is because most forms of Vitamin C are derived from corn, and many children with autism have severe corn allergies. Well, Annie is one of those children with a major allergy to corn – mystery solved. HEAD BANG NUMBER TWO.

Our doctor told us he could recommend a Vitamin C derived from Cassava, but he advised against doing high dose oral therapy. Instead, he suggested I try intravenous (IV) Vitamin C therapy. I decided to give it a try. To this day, I think the IV Vitamin C therapy might have worked, but getting Annie to comply with the IVs was just too stressful. During our first IV treatment, it took 3 people to hold Annie down (me, my mom and a nurse) and another nurse to administer the IV. Annie only spoke 1 or 2 words at a time back then and yet, she managed to mutter, “Mommy make it stop. I promise I’ll be good.” My heart broke. I knew at that moment I couldn’t torture her on a weekly basis. I went back to the drawing board. HEAD BANG NUMBER THREE.

Her DAN! doctor suggested we work on improving Annie’s sleep. Ever since we tried hyperbaric, her melatonin wasn’t cutting it anymore. She was pretty much nocturnal (only she didn’t sleep during the day either). Annie’s doctor suggested a “sleep cocktail” for bedtime – a mixture of GABA, Magnesium, Melatonin, and 5HTP. I had to give Annie high doses of all of them to finally get her to sleep. And month after month, the effects would seem to wear off and I had to keep upping the doses. For an explanation of what I believe caused this problem, please read  https://ventography.wordpress.com/2011/10/19/lessons-learned-part-three/.

What I took away from all of this was that I was done with high dose supplements for good. In my opinion, there is a reason the saying “All things in moderation,” has lasted throughout the ages. I needed another new game plan. HEAD BANG NUMBER FOUR.

About this time, Leah had put Brody on the Specific Carbohydrate Diet (SCD) and was experiencing amazing results! Brody had miraculously started talking up a storm right in front of my eyes. So, I figured maybe SCD would be the missing link for Annie too. I started her on the diet right away. But, the diet didn’t seem to help Annie. In fact, she lost weight and seemed to get sicker and even grouchier. I was beyond upset. Nothing seemed to be working. HEAD BANG NUMBER FIVE.

Was someone trying to finish me off? Was God trying to tell me to give up on healing my daughter? Should I just accept that this was the hand I was dealt and stop putting every last drop of effort I had into recovering Annie? But how could I ignore her real and devastating health symptoms? I knew she was in a state of constant pain and anxiety. How could I look the other way?

Right as I was reaching the point of giving up, I got a call telling me that I had received an appointment with a DAN! doctor who had a 2 year waiting list. I truly felt like I had won the lottery! While I still had tremendous respect for our original DAN! doctor, I felt I needed a second opinion. So, I made an appointment with the new doctor right away.

I learned 2 key things from the new Doctor. One, Annie had severe metabolic acidosis. Two, there was a new chelator I could try that was not a drug, it was an antioxidant, called OSR.  Once again, my hope for Annie’s recovery was renewed.

To be continued…

For Parts 1 – 7 of Annie’s Story https://ventography.wordpress.com/category/annies-story/

For more information on Nutrigenomics http://www.healthinducedautism.com/nutrigenomic-dna-testing.html

For more information on the Specific Carbohydrate Diet http://www.healthinducedautism.com/specific-carbohydrate-diet-scd-information.html

For more information on Methylation http://www.healthinducedautism.com/methylation.html

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Author: A Ventography!

A Ventography is about: 1. Encouraging and empathizing with other parents on the autism spectrum. 2. Recycling and simplifying information on the latest autism news and health and diet tips. 3. Asking thought provoking questions designed to make us rethink what we've been told about autism. 4. Helping connect the dots that show, in some cases, autism is more than a brain disorder. 5. Challenging parents to rethink what they've been told, refuse the status quo, and escape the whirlwind of confusion.

One thought on “AUTISM RECOVERY CAN FEEL LIKE BANGING YOUR HEAD ON A BRICK WALL

  1. Hi there, have a look at liposomal vitamin C: it is claimed that it can reach the cell penetration of intravenous but still being oral.

    Like

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