May 15, 2008

First of all, I am happy to announce that Gavin has successfully gone potty in his potty chair-sans crumbs- and we now have a good sample to take to the lab (and frozen pee in our freezer).

Anyway, back to the reason for this post. Myself, Josh, and my extended family have been AMAZED at Gavin’s turn-around over the last two weeks. Gavin now eats everything that is put in front of him, whether or not he’s had it before. This never happened prior to the GF/CF diet.

Before trying the diet ourselves, I had kept reading about all these kids who were getting better on the diet, but my big question had always been how parents even got their children to start it. Autistic children are commonly very picky, as was the case with Gavin. To get him to try anything apart from his favorite four things was impossible. He would look sideways at his plate and refuse to even try one bite. I figured the same thing would happen on the diet, especially since we had to cut out all of his favorites.

A strange thing has happened. He no longer refuses food. He tries everything and more often than not, cleans his plate. He’s been asking for broccoli for goodness sake! This coming from the child who flat out refused vegetables most of his life. Gavin has suddenly become a bottomless pit. We had dinner at my parents’ house last night and we literally ran out of food to give him. He just kept eating! I know he feels better and the enzymes are helping his food digest the way it should. What I don’t understand, though, is what changed his mind? Did he know certain foods hurt his tummy hence the pickyness? Does he now feel so much better that he’s not afraid to try new things? Why does he suddenly like (dare I even say, love) vegetables? Why hasn’t he even asked for the old standbys? He’s a completely different person when we sit down to eat. Meal times are enjoyable now. Before it was a battle at almost every meal unless he was eating a favorite. I caved more often than not and let him eat what he wanted, just so he would eat something and be full.

To anyone who is contemplating starting their child on this diet, please try it! It is hard at first (and expensive), but the results are amazing and fast. I am so excited to see what Gavin will be like even a month from now! The possibilities are endless!

On a sad note…….I was informed by a Hy-Vee worker recently that they are going to stop carrying A2 milk because they are not selling enough. Apparently, they are one of the last Hy-Vees in the area who even still carry it. Bummer. Guess we’re just going to have to get an A2 cow for the back yard.

“Salu” Again

April 21, 2008

Gav came home from church yesterday and asked for a “salu” (salad). That’s the 3rd time this week!

He also ate a HUGE bowl of chili for dinner!

Think he’s feeling better?! 🙂

My friend and I met today for almost 3 hours and it was SO helpful. We talked through a lot of different foods, found great recipes, planned a menu, and I’m now feeling much better. I was very excited to hit our nearby Hy-Vee Health Market and stock up on some things knowing that I’ll get 10% off because that’s what they do on Wednesdays. (GF/CF food is VERY expensive so every little bit helps!)

I grabbed some essentials and a few “special treats” for the boys and was feeling good about life. When I got home I double checked my receipt and realized that I had not gotten 10% off of anything!! I had paid full price! (If I had been paying more attention during check-out, I maybe would have noticed, but with two squirmy kids in the cart, I didn’t).

I was ready to put the kids in the car to go get some money back. I was sure the checker just hadn’t realized his mistake. High school kids….like they know what health food is! 😉 I called to see what I could find out and low and behold, OUR Hy-Vee health market section is on sale on THURSDAYS. Tomorrow. A lot of good that does me now. (After thinking about it, I realized that everyone I know who uses the section frequently lives in Ankeny-where their section is on sale on WEDNESDAYS).

I tried……..chalk it up to figuring out how all this works. Some day I’ll be a pro.

(A big THANK YOU to Em Alberhasky’s neighbor Kristen who let Gav sample some of her yummy treats!)

So we’ve just entered Day 6 of our Gluten-free/Casein-free diet (GFCF). I had been leaning this way for a while because I have read a lot of testimonials of recovered children who are on a GFCF diet. (More about why it’s a good thing for them another day).

A friend and I attended a Gluten Seminar at Campbell’s last week and it just confirmed in my mind that we MUST do this for Gavin. EASIER SAID THAN DONE!!! For those of you who are wondering what the heck a GFCF diet is, let me explain. Gluten is a protein found in wheat, rye, triticale, barley, and spelt. Casein is the protein found in dairy. People with a sensitivity/allergy to wheat or dairy must cut out all foods containing these things. There has been much research done on autistic children and their body’s inability to process gluten and casein. (Again, more on that another day).

So, I came home and announced to Josh that we must start this and the sooner the better. We went through our fridge and pantry that night and were literally left with NOTHING we could feed Gavin. Gluten and casein are in EVERYTHING. (Some places gluten is found just to name a few:durum, semolina, flour, citric acid, malt, dextrin, modified food starch, vegetable starch, soy sauce, seasonings, vegetable protein, packaged meats, etc, etc, etc). It doesn’t help that Gavin’s all-time favorite food right now is Kraft Mac & Cheese (gluten and casein and just plain bad for him). Just for fun, go through your pantry and see what you’d be left with. I’ll bet you’d be surprised.

After many trips to the health food store, and many dollars spent, I had a few meager things to offer the boys (we’re doing this for Liam too-why discriminate?) I have to say I am (STILL) very overwhelmed by this. I basically have to throw out my cookbooks and recipes and begin again. It also makes it harder that Gavin is incredibly picky and won’t try new foods. But enough about my near panic attacks every time mealtime approaches.

Some good things we’ve already seen since beginning this diet less than a week ago:

  • Gav’s poop has already changed in consistency. (If you read my previous blog, you’ll understand that this is a big deal).
  • On the way home from school yesterday,without any prompting, Gavin says, “I played with teachers today, Mommy.” For those of you who know Gavin know that he has pronoun confusion and pretty severe echolalia (when asked a question, he repeats the question instead of answering). So by making this statement, he is entering into normal conversation WHICH HE DOESN’T NORMALLY DO.
  • This morning he and I were sitting next to each other at breakfast and he looks at me and says, “I’m glad you’re my mommy.” (!!!!!!!) Once again, Gavin has never made statements like that. Most of his dialog are rote phrases we say a million times a day.

On the flip side, the doctor who conducted the gluten seminar stated that on this diet, it will get worse before it gets better. Gluten/casein acts like morphine in little bodies that can’t process it. So when removed from the diet, the body goes through withdrawal, much like a drug addict in recovery.

Last night, I think we experienced the beginning of this “withdrawal”. Gavin woke up around midnight screaming and talking incoherently. He literally screamed for a solid 15 minutes and could not be consoled. He sounded and acted like he was in incredible pain-it was very scary. Thanks to Josh’s patience and calm spirit, he was finally able to calm him down and eventually got him back to sleep.

I know that this diet is going to be so beneficial for everyone in our family, but it appears that it’s going to be really tricky too. Even today, Gavin was given cereal at school because one of his teachers forgot. THIS IS NOT A GOOD THING. This is one diet that you can’t “cheat” on. Even a tiny amount of gluten can set the whole process back days. Sigh……….

Tomorrow I’m meeting with a dear friend who is going GF/CF with her family too. We’re going to collaborate and plan meals and menu ideas so we at least have something to feed our families. I’ll post more when I’ve got some good ideas. So far all we’ve had is rock-hard rice bread and muffins. ICK.