Call me crazy… BUT I think we’re seeing some changes. Okay, I know, I said this after each of the three stem cell treatments. Though there really did seem to be a slight shift – a change in her speech, better eye contact, longer more complex sentences, a more grounded presence in the world and I don’t think we were wrong about any of that. I’m pretty sure Emma really did make some progress. However, here’s my latest theory (Richard, please refrain from rolling your eyes) – what if the stem cell treatments were helped by the fact that she also wasn’t eating all the dairy she normally ate. What if in addition to giving her a little boost, the fact that she ate very little and therefore almost no dairy and hardly any wheat contributed to the progress we saw? What if these food intolerances really are making it difficult for her to concentrate, focus, stay on task, carry on a conversation, maintain eye contact?
Today is the 6th day on Emma’s modified gluten free/casein free diet. I use the word modified because, according to Dr. D she can tolerate dairy products from sheep and goats. However she is not allowed to eat anything containing soy, corn or potato. Which pretty much eliminates all pre-made foods, no matter how organic and gluten free they are, they all, every single one of them, contain either soy, corn or potato and often all three. In addition she cannot eat anything with chicken eggs as she cannot have the whites, yolks are okay, but not the whites.
I’ve been doing a great deal of baking. Which is a bit ironic considering how little Emma is actually consuming, but I keep trying to find things she might like. I also love a challenge. My mother told me about one of those cooking shows she likes called Chopped or a name like that. I’ve never watched it, but she described how the chefs are given bizarre items such as (I can’t remember what the actual ingredients were on the episode she told me about, so I’m making this up) – sweetbreads, licorice and coca-cola – and told to create something edible. The chef then whips up some amazing concoction using those ingredients as their base, which looks delicious and the judges proclaim it a work of art.
The list of Emma’s “CANNOT EAT” foods sits on our kitchen counter, where I refer to it, reminding myself that if someone can prepare a fabulous dish with lifesavers and sweetbreads (or whatever it was they were given) then surely I can create something Emma will eat with all the foods she CAN have. Still it does seem daunting. And I’ll bet Emma wouldn’t touch any of those dishes prepared by those fabulous chefs, no matter how talented they may be. Emma is one discerning customer. Or as my son Nic said in answer to my question as to why he didn’t like the girl who keeps texting him at all hours of the day and night, “I’ve got very high standards, Mom.” He then went back to playing his video game, involving lots of blood, various weapons no one has ever heard of and screams of agony.
When I first told Richard about taking Emma to Dr. D, he asked, “So what’s the science behind this?”
And the truth is I cannot answer that. Though the following non-biased paragraph from the website, about.com is a pretty good description of the theory behind foods, intolerances, GI issues and autism:
“Why Does GFCF Seem to Work?
GFCF diets are difficult and expensive to administer. They require a lot of dedication and knowlege, and most professionals suggest that the diet be implemented over at least three months. Given all of this, it’s possible that parents who desperately want to see improvement could report improvement that may or may not actually be present. In addition, many children do gain new skills over the course of three months, with or without special diets.But there’s more to the story than just wishful thinking. Allergies to gluten and cassein are not uncommon, and those allergies often manifest themselves in diarrhea, constipation, bloating and other symptoms. About 19 to 20 percent of autistic children seem to have significant gastrointestinal issues.
If these issues are caused by gluten and/or cassein, then they would certainly be significantly improved by the diet. By removing a source of constant discomfort and anxiety, parents may well be opening the door to improved behaviors, better focus, and even lowered anxiety.”
It may be that I am trying to find improvements that have nothing to do with the change in her diet. It may be wishful thinking on my part. It may be that what I’m seeing may have happened had we not started her on this radical new diet. But I began this blog as an honest documentation of Emma, the progress, the lack of progress and everything in between. Since we began the diet I have seen the following:
Greater sustained eye contact. Less spaciness and a more solid grounded presence. An interest in her Dad and a desire to include him beyond what she normally displays. This morning, when I told her we didn’t have time to finish her study room and that we’d finish it tonight, she said, “Study room later. We get to show Daddy.” Now this may seem insignificant to most, but I can tell you, to Richard this sort of acknowledgement is a long time coming.
Emma – last night – October 20th, 2011
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com
This is great news. When we eliminated the dairy from my son’s diet we saw improvements quite rapidly( I didn’t know his sister was ASD too at the time ) Can you freeze some of the baked goods you make Ariane so you can make them in batches to save a little work?
That’s such a good idea and one I hadn’t thought of. I will do that. Just made the most fabulous cupcakes with a maple/brown sugar icing. I was so proud of myself, because honestly the bread products we’ve made so far are uniformly dreadful, but these cupcakes are pretty good. Emma tasted one just now, scraped all the icing off and said, “No bread, thank you.” I couldn’t believe it, particularly as I made a basic white gluten free, casein free yeast bread yesterday and she ate a sandwich of almond butter & apricot jam. She ate the whole thing! Yesterday was the first time she’s eaten a real meal. Today she ate well for all her meals. Such a relief. She lost almost four pounds this past week, so I am very happy and not so worried. Time consuming, but it will be well worth it, even if it means she eats a wider variety of foods and is less constipated. We will see. Always love hearing from you, Liz. I hope you and yours are well.
Kind of funny about the cupcakes. Probaby not to you though after all yor work. Roslyn would be like that and not want the cake but eat the icing! She eats cake now though.Perhaps freeze some and keep offering them to her. Sometimes you have to offer foods may times before the child will eat it. I keep racking my brain for other ideas for how to present the food- If I think of any I will let you know. Can Emma drink rice milk? Peanut butter smoothies are delicious. Just substitue the peanut butter for almond butter, use maple syrup and rice milk, and throw in some icecubes instead of ice-cream, and the rice milk and blend it all up. If bananas are okay you can put those in too- but it tastes great with out them too. Maybe Emma would help you? Roslyn loooves making smoothies.
Love the smoothie idea. I will try this. I meant to ask you awhile ago about the smoothies you mentioned that you make for Liam. Then something came up and I forgot to send you the email. So glad you thought to tell me. I will have her make one with me.
Emma didn’t like the cupcake because it wasn’t white in color. She eats the yeast bread because it’s white, I’m pretty sure and not because of the taste. It tastes horrible in my opinion, but she eats it! I’ll let you know how it goes with the smoothies.
You can put in any fruit that blends well and sweeten it with the maple syrup or honey. Ice cubes really froth it up when you cant have ice- cream. Goodluck. The rice milk would look really white too.