Tuesday, March 9, 2010

Gluten & Casein Free Diet

Aidan (13) started showing symptoms of autism around his 2nd birthday. Korbin (9) didn't have eye contact or like to be held from birth. Here's a good site to learn more about autism symptoms http://www.autismspeaks.org/whatisit/symptoms.php We can't blame ourselves guessing at things we did while pregnant or their lack of veggies when they were toddlers, etc. It's just wasted energy. I've had to learn to deal with each day the best I can, with the tools I have. There's no harm in looking for more tools to help tomorrow. :)

I tried the diet for the boys when they were 7 and 3. Before we even started I researched for about 4 months. After having the boys gluten and casein free for 3 months and not seeing ANY difference we tested them with a huge cheese pizza. They ate themselves miserable and still there was no change in behavior. I found out later that their schools were allowing them to eat anything they wanted. Korbin even had an aide who felt sorry for him being restricted and brought extra food in her lunch to share with him.

We went back to gluten and casein free this past October and went soy free in November. Korbin has had a faster improvement than Aidan, but that's likely due to the years of damage to his intestines. We just tried Korbin back on soy without seeing a difference so we're allowing him soy again. Korbin's reaction to tomatoes is aggressive rage. It's like a sudden break from reality where he attacks anyone around him and destroys property until he runs out of energy and finally rocks himself to sleep. It takes 2-3 days for him to get over the nasty mood that's leftover. He actually fears that someone will put ketchup on his food. Aidan offered him ketchup for fries a few weeks after I figured out the tomato issue (thanks to a food & behavior dairy). Korbin yelled at Aidan "NO! It hurts my brain!" Korbin leaned over to me and said "I feel so much better with no ketchup in my head." Before October Korbin couldn't even put together such a complex idea into words.

In the world of autism there is no "gold standard" treatment like there is for schizophrenia. We know that antipsychotics help almost everyone with SZ. With autism parents are trying anything and everything they can to help their kids, with or without a doctor's blessing. The book Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi explains more about where the diet came about and why it and ABA therapy is the closest thing autism-land has to a gold standard. The best of the best researchers have come together and written the Defeat Autism Now protocol. I won't get into the details of it, but the doctors who are trained in it are getting great results.

I'm not going to say that removing some foods from my sons' diets have "cured" them. Within 2 weeks of removing gluten and casein from Korbin's diet we were astonished by his increased socialization and pretend play, which was totally new. Many kids have the same morphine-like peptide reaction to soy as they do to casein and gluten so we did a trial removal of it for 3 months. I kept a daily diary of every food and drink they had and a sentence or two about their behaviors. It was easy to spot that the days Korbin had tomato product (ketchup addict) he had a very aggressive rage and stayed in a foul mood for days. As soon as we removed it he was happier and had far fewer rages. He's also allergic to tree nuts, so we don't use nut milks or nuts in cooking (like in many fake cheeses)

Aidan is still gluten, casein, and soy free. While he's inpatient I can't make any changes. He's had bowel issues all of his life so seeing an improvement in Aidan wasn't likely until we got thing "moving along". It's taken prescription medication to help ease his backup issues. Now that his GI system is happy, he's becoming more happy. At this point I'm just trusting that the diet changes are making a difference for him. Being diagnosed with schizoaffective disorder at 13 means we have a long road ahead. Even if it's just a small improvement, it's enough to justify the work.

Yes, we miss pizza delivery. I've learned to cook all over again. I make a great allergen free crust. Basil pesto, alfredo-wanna be, and many other sauces replace our lack of tomatoes. There are are loads of fake cheeses that become acceptable once you've been without long enough. :)

I doubt this is THE answer, but it does help many people. My boys went through the winter without any asthma trouble. They are still on their daily medications for asthma and allergies, but the rescue inhalers have stayed in the drawer and I can't remember a winter that didn't require prednisone. As a mom I can only use this tool that I have today to do the best I can for my sons. I'll keep looking for other tools that might help in the future. We can only do the best we can with what we have and hope that it helps their tomorrows.

No comments:

Post a Comment