I have several hard posts swirling around in my head. This one has been
particularly heavy on my heart. My prayer is that by keeping it real and allowing myself to be completely honest on this blog,
others may be helped.
Why have we chosen to dramatically change Charlie's diet? For a long time (maybe since around 3 months, even), Charlie has chewed on his tongue. We didn't think it was a big deal and truthfully found it kind of cute. We actually met with a speech therapist when he was about 6 months to get her opinion. She told us to get in and stimulate his mouth daily. Done. Easy with a vibrating tooth brush, many textured toys and fingers. But as he got older, we noticed other sensory behaviors surfacing and the tongue chewing becoming almost constant. New behaviors- humming, obsessively playing with his hands and shadows, dangling objects (beaded necklaces, ribbons) in front of his face, strange throat sounds. My mother instinct told me this was much more than just Down Syndrome.
Then Charlie turned 1, and we took him off formula. True, his formula had always been "milk based" but putting him solely on whole milk sent him off the deep end (the whole milk itself I had a problem with but that's another post all together). His sensory/stimulating behaviors sky rocketed. Our sweet little baby seemed to be slowly withdrawing. Things I had heard- make sure he will still make eye contact and reach for you. Phew. He did both those things but sometimes it was harder for me to get his attention and the only way I could was to completely take away whatever his focus was on.
I began doing MUCH research and found one very interesting thing- a link between autism/sensory behaviors and gluten/
casein. Some people cannot break down the protein in dairy (casein). It acts like a
hallucinogen or opium in their sweet little bodies as several websites described it. Poison. Poison is what I had been pumping my baby full of. Gluten acts very much in the same way and causes all sorts of digestive issues on it's own. Since putting him completely on whole milk, his bowel movements had been terrible. The dairy was wreaking havoc on his system. I could tell he wasn't himself and just didn't feel good. He loved all things dairy- cottage cheese, yogurt, cheese. And gluten- LOVED pizza (gluten and dairy) and pasta. After reading several different articles, we were convinced. From that day forward Charlie was going to be 100% gluten and dairy free.
I read story after story about success and children literally being "freed" of autistic behaviors and sensory and stimulating
tendencies by going gluten/casein free. What an easy thing to change? No drugs. No addition of 17 therapies. Diet. I feed him several times a day anyway, right? If something as simple as changing WHAT we feed him would make him feel better, we were in.
So, has it been easy? Actually, yes. Rice "milk" replaced whole milk. Charlie is NOT a picky eater and eats anything and everything he is given. There are foods that are "legal" and those that are "illegal". Legal foods include rice (the darker the better), potatoes (the more colorful the better), any and all fruits and veggies. C loves vibrant fruits and veggies so making sure he is getting enough natural vitamins is not an issue. We make hummus and he loves it. Just today I found a rice spaghetti at our local Kroger. Do you have any idea how excited he was to be able to enjoy spaghetti with the rest of us this evening?!! He did not make a peep except "
mmmm" for an entire 15 minute meal. And that's the key- it must be rice or corn. Rice flour or cornmeal. ABSOLUTELY NO wheat anything! And no white flour.
The market for gluten and
casein free items has grown considerably over the past few years. True, companies have found yet another way to make a dime, but because of the demand, several wonderful products have been discovered. Charlie's favorite breakfast that I pair with yummy fruit is french toast by Van's. Another product is Pamela's Baking mixes. And one of the BEST websites (sent to me by my
SIL,
Markana) with loads of fabulous recipes is
Gluten Free Goddess. We have made many of her dishes and love them even more than their gluten/dairy full counterparts. My recommendations- Big Easy Soup, Jalapeno Lime Hummus, Sweet Potato Black Bean Enchiladas. There are so many more on my "to try soon" list- breakfasts, pizza, dessert, soups.
So....how is Charlie? PRAISE THE LORD, he is a different child than he was a couple of months ago. It's true! Does he still chew on his tongue? Only when he is tired or hungry. And all of his other behaviors have disappeared. I can tell when a little
gluten or dairy has slipped in because his behavior regresses a bit, but within a day or so he is back to normal. About letting any gluten or casein slip in- we try with all our might not to cross contaminate
any food. If I touch my sandwich before I feed C, I scrub my hands. I believe I probably scrub my hands 25 times during mean preparation.:) Silverware is never shared. Ever. Not even the knife I use to cut food.
Again,
Gluten Free Goddess is a fabulous site not only for the recipes but for learning the ins and outs of Gluten Free living. She has written a bit about
GF/CF (
Casein Free- dairy). If a recipe includes dairy, there is a substitute at the end of the recipe.
I have so much to learn about this new lifestyle and our little miracle boy, but very few things are more important.
In Him,
E
"blessed" $45 plus shipping
And yes, this one says "eat"- love it!
Oh how I love this little one! Ana is the daughter of a dear friend of mine, Dawn. She is a teeny, tiny fighter blessed with a little something extra (just like Charlie). Today is Ana's 3rd birthday- what a day to celebrate!!
