Monday, June 16, 2008

One Mom's Journey Into Autism and GFCF

A new member of the GFCFKids Yahoo group posted the following today. I thought it might give some visitors to my blog some good insight on what it's like to start the diet and what reactions/responses might be possible. This has been re-printed with Shelley's permission.

My 26 month old daughter just recieved her formal diagnosis of autism, but I've known for several months. She's a twin, and her sister, A., is having complete conversations, while K. had not said a single word-until recently.

I pushed my pediatrition who thought everything was fine into a referral with early childhood intervention because of her speech delay. They finally got around to evaluating her at 22 months and mentioned to me that she had several red flags for autism. That was the first I had really heard of autism - I just thought she had a speech delay. After looking at several websites that listed red flags for autism, I clearly saw a picture of Kellan in thier words.

I was devastated because I thought this was a life sentence, end of story, but I started reading everything I could get my hands on. I quickly came to believe in the possibility that dietary intervention might help her, so on the advice of our caseworker from ECI, I took out gluten first and noticed a change. She was more alert, less aloof, she made better eye contact and initiate more interactions with myself and her dad. (she still hadn't really noticed that she had a twin yet). Encouraged by the changes in her, I immediately removed all dairy from her diet. She continued to improve daily. She has been gluten and casein free for about 6 weeks now and she is just not the same kid. ANYONE who knows her sees a dramatic change.

To date, she has said 5 words, mama, baby, up, go, and off. She's babbling more, and is working on other words. Just this morning, she had finished her fabulous GFCF homemade french toast with pure maple syrup, and she looked at me from her high chair and said "up". Her first purposeful use of a word EVER. I almost fell out of my chair I was so elated. I mean, you know, this is a lot of work, but what a payday.

She, like others, self limited her diet prior to the changes to tons of dairy, and tons of pasta and breads. I believe that the reason for this is because she was addicted to the substances gluten and casein which are protiens that breakdown incompletely in some autistic kids to form opiates. So, basically, she's been stoned for a long time. Imagine trying to develop a brain and nervous system while consantly stoned.

When I implemented the changes in her diet, in order to maintain some consistancy with her former diet, I did things like switch to rice pasta, so she's still getting her beloved pasta, but without the gluten. In addition to shopping at Whole Foods and other very expensive healthfood stores, I'm finding lots of things at Walmart of all places. Thier house brand, 'great value' clearly labels GLUTEN FREE on thier products as appropriate. You just have to read the labels for casein. I started out with a lot of premade products like breads while I was getting the hang of cooking in the new way, but now I am finding it more economical to make my own rice milk and breads and desserts and such. It also gives me more peace of mind because I know for sure exactly what's in the ingredients.

I was very hesitant to try this diet because I knew that it would be expensive and a ton of work. And guess what? It's expensive and it's a ton of work, but the results speak for themselves. Today, I believe that I can snatch my kiddo back from autism. It's going to take a ton of time and effort, and patience, and love, and therapy, and MONEY, but what would I not do for my child? What would you not do for yours?

I make my own rice milk and I have both of my twins off dairy. I have long been convinced that cow's milk is best suited for calves, not humans of any age. It's just such a big part of our culture and the dairy industry . . . don't get me started. That's another topic for another day.

We have our first appointment with a DAN doc coming up in a few weeks, but in the meantime, I have learned what I can and have implemented the following:

- Multi vitamin supplement
- Calcium, magnesium and vitamin D supplement
- B complex Supplement
- GFCF diet
- Speech therapy
- OT for sensory integration disorder
- Beginning ABA

That's about all I know at this point, but I'm learning more every day.

Peace-
Shelley

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DISCLAIMER. I am not a doctor. I am not a nutritionist. I'm just a mom who has been implementing the GFCF diet since October 2007 (and soy-free about 5 weeks thereafter). Please do not rely upon my blog as your sole source of information or advice. I only offer my personal experiences for your consideration and can not be held responsible for any adverse reaction or experience you or your child may have should you choose to try something I have tried. Remember that every child is unique, and what works for mine may not work for yours.