Monday, September 21, 2009

Education, record keeping and the rotation diet

Think about if you never went to school, how would you read or write? Wouldn't your life be terribly out of sorts? What if your doctor didn't go to medical school, just apprenticed under another doctor and just knew how to treat and diagnose certain ailments? Would they really be able to offer up the best treatment options for an ailment they had no personal experience with? That's what it is often like at the beginning of the journey for dietary intervention and bio-medical treatment of Autism. Your own personal education seems lacking and the local pediatrician often knows little of Autism other than behavioral therapies and also often disregards connections to G.I. problems, allergies and diet. I was thoroughly disappointed with the local responses we received and felt left with little choice but to acquire a doctor an hour and a half from our home, Dr. Nancy O'Hara http://www.drohara.com/ . Going through her practice was a very intense experience. We HAD to put our son on the GF/CF diet (we already had him on it on our own) and use Vicki Kobliner M.S., R.D. http://www.holcarenutrition.com/ as our nutritionist. Vicki was a true "Pro" and walked me through what I needed her to. There were a lot of blood, stool and urine tests. Then there were a lot of supplements to get him to take and weekly B-12 injections and monthly secretin and glutithione infusions. The worst part was there were many things I just didn't understand, like the methylation pathway and metalithione deficiency and many of other things. I was outside of my educational base and needed to catch up quickly for my child's sake.

I set out very quickly to do just that. Just a few months after joining Dr. O'Hara's practice a Defeat Autism Now! (DAN!) conference was held in Boston. I went out of my way to attend. I stayed in the home of a family friend and walked over every morning and back again at night. I took in everything I could from the seminars, took extensive notes and highlighted items to research on the internet when I got home. At the end of each day I felt as if my head was going to explode. I was entirely overwhelmed. I now know that that was a good thing. It was the most expedient way to get from point A to point B. That all said, it wasn't enough! I found myself absolutely lost in the Science Session of the conference. The Science sessions are meant for medical professionals and very experienced parents, I was neither. Frankly, I think I felt left out in a way. It was like "they" had an inside track on how to navigate a certain path and I was on the outside trying to get my son on that path.

Soon after I went back to school. I had intended to get a masters degree in Nutrition, but that never came to fruition. I did however take Anatomy & Physiology and Biochemistry and suddenly I was on the inside track. When I went to the next DAN! conference I sat in the Science session with confidence and greater understanding. I still had a splitting head at the end of the day but maybe not quite as bad as the year before and I didn't have any feeling that things had been lost on me. My greatest recommendation to new parents is educate yourselves. Now with online classes it is even easier than ever. DAN! conferences now even post webcasts online for no charge at http://www.autism.com/ . It used to cost a substantial chunk of change to see those videos!

Once I understood what was being said to me and how to implement the necessary changes it was time to move on to documentation. Doctors keep charts on patients, scientists keep detailed notes on experiments, our lives became no different. I created a daily log sheet on the computer that allowed us to check off each supplement or medication our son took. It allowed us to fill in the blank for everything he ate or drank. It also provided a place to keep notes on behavior, allergic reactions (red cheeks/ears, swelling) and stool patterns. Creating that log was the best thing I did aside from dietary intervention. Two to three months of daily entries fit in the three ring binder at any given time. Patterns eventually revealed themselves, often subtly. Without that book I would never have seen them myself or convinced anyone else that there was a pattern. Having the book up and going also made doing a rotation diet far easier.

It was easy to slightly alter the computer sheets I was printing out to have four variants. The real challenge was finding the items to put into the rotation. Items he would willingly eat and drink and that I would be strong enough not to cave in and give him out of sequence. Each of the four days had a different protein, vegetable, fruit/juice and snack items. It was as simple as turning to the correct day in the book to see what to feed my son for the day. It actually helped simplify things. Eventually we bought a big freezer to keep in the garage that had four shelves and two bins. That became his freezer. I made his food in big batches and put it on shelf 1,2,3 or 4 depending on which day of the rotation it lined up with. It made it easy for us and for others if they came to babysit. I won't lie, the first few weeks were very difficult. He wanted amaranth waffles every single day. I did a lot of lying in those days (using my sad face), "Sorry, mommy doesn't have anymore waffles. We're all out. No more."

He still developed allergies to foods, but it definitely slowed things down and gave me some respite to work on new recipes. He has been on a rotational diet 6 years to date, in the last year we had to remove two foods due to increased allergic response, however we added back in five foods to his rotation because he is not reactive at this time! I'm so glad we stuck with rotating. It wasn't easy at first and it didn't stop the allergies from happening and it took three years to start seeing really significantly positive results but all told I wouldn't have done anything differently.

In my next post read about doing the Specific Carbohydrate Diet (SCD) for a child that is GF/CF and allergic to eggs, all beans, quite a few vegetables, needs to rotate and has sensory/texture issues with food! Lots of fun!


Lastly, I know I'm not posting with any sense of regularity. I'm sorry. I thought things would lighten up when my kids went back to school. THEY DIDN'T!!! Infact, m youngest son has developed a few new allergies in the last 2 months and I'm franticlly working on readjusting his diet. Please just check the site when you think of it. Eventually a new post will find it's way on here!

2 comments:

  1. I am glad you posted! Keep it up!

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  2. Thanks for the post. I really related to the "inside track" re: science when it comes to my Lyme. A lot of people do b12 and glutithione,and the methylsomething you said. I have a blog reader. (google reader) So, when I want I go to my blog reader, I don't have to bookmark blogs and the like.

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