Day 14

Ryan finally drank the rice milk! He had 2 servings of the Rice Dream rice milk, just the classic original one, not the vanilla flavored. We put it in his dinosaur decorated mug and he was very excited. He called it his "coffee" and said he was drinking "coffee" like nonna and papa. Still no luck with the supplements, but accepting the milk was a big step for today, and hopefully we'll be successful with it again tomorrow.

I went to Trader Joe's in Danbury today. I was able to find a few things that are different than stuff we've seen in other stores. And the prices were more reasonable than we've seen in some other stores. For example, the margarine he can have is over $4.50 for a little tub at Mrs. Green's but I saved over a $1.00 purchasing it Trader Joe's. But overall, I wasn't crazy about shopping there. Yes, there were tons of organic options, but I had trouble finding things that are gluten-free and wasn't able to find anything that said casein-free. While there were more choices and a bigger selection of organic items to choose from, I would not be able to go there for a majority of Ryan's food. But once a month it might be helpful and cost efficient to make a trip there to stock up on things that they do have.

Today I also purchased Omega-3 vitamins. They come packaged looking and sort of tasting like gummy bear/sour patch candies. He was interested in trying one but took one sniff and refused. Julia had no problem eating one; but even seeing her eat one and like it, he still refused.

DC

Day 13

Anyone trying this diet should read the book "The Autism & ADHD Diet" by Barrie Silberberg. It is informative, descriptive, and thorough. I unfortunately can't find the time to make some of the recipes available in the book, but maybe this summer. If we can keep this up until the summer. After tonight I feel like quitting.

I was finally able to get Ryan to step on the scale this afternoon. He has lost 4 pounds since we started the diet almost 2 weeks ago. I know this is not a detrimental weight loss but it is noticeable, especially in his face. His skin is still red and blotchy and he is constantly scratching it.

He didn't eat a lot today; his appetite is not what it used to be. He was uncooperative taking his supplements, and without Phil here to help me tonight, I was unable to get him to take it. I was so frustrated with him and his behavior that I had my own meltdown.

He still won't drink the milk. If I could go back and change something when starting this diet, it would be the way we handled the milk switch. We should have started by using a mix of 25% milk alternative with 75% regular milk and then when he got used to it, start slowly tipping the scales towards 100% milk substitute. Now I'm afraid he won't ever want to try the milk.

DC

Day 12

Withdrawal?

Ryan's skin was terrible today. His cheeks were a purplish red color all day. After his bath his lips looked a little blue and his legs were red and blotchy and he couldn't stop scratching. We took pictures to share with Dr. Bock. We're going to stop using his current shampoo and see if that helps. It's frustrating not having a doctor to monitor all of the changes we are making. I don't know how I could possibly handle waiting until November for our first appointment with him.

Ryan's teacher said he was cranky, moody, and clingy today. I think I may know part of what he is going through. Even though I haven't switched over the a GF diet like Ryan, I have eaten several GF items over the past few days. Yesterday and today I've experienced stomach pains, and after dinner tonight (which was gluten-free pancakes and agave nectar) I had the shakes and felt very queezy and nervous. I was explaining all of this to Phil and he said it sounded like the symptoms of withdrawal.

I am pleased that Ryan ate the pancakes, but he caught on to us putting the cod liver oil into his juice and didn't drink it. As per the advice of a friend we are going to switch him off of orange juice and introduce pear juice in case his body is reacting to foods with high amounts of phenols. This means we have to avoid apples, oranges, and bananas to name a few foods.

For me, the most difficult part in all of this is not knowing (not knowing what is going to happen and not knowing how Ryan feels). For those of you that know me well, I am all about results. I like to see the end product or at least know what I'm getting. When I start a new book I almost always skip to the end to read the last page or two. I'm very logical and it's difficult for me to make sense out of things that are erratic, out of order, and unexplainable. I hate not knowing exactly what he is going through. He is not good at explaining things to us and I worry that we're doing something wrong or making things worse for him.

DC

Day 11

Frustration and a smelly living room! Our order from Kirkman Labs came today. Ryan's new sunscreen arrived, as well as liquid hand soap, and two trial sizes of cod liver oil. Several people have suggested trying cod liver oil, so we thought we'd give it a shot. Ryan thought he'd give it a shot too (literally)... one sniff and he shot it right out of the syringe and all over the wall in my living room. Yuck! Chaos ensued and here I am looking at a fish oil-splattered wall.

To make things worse, Ryan's cheeks were red most of the day today. I printed some articles about phenols. Bananas have high concentrations of phenols and considering all of the bananas he ate the other day, he may crave foods with phenols. I don't know if this is the cause, but I'm not sure what else it could be. His skin isn't as soft as it was last week and the improvements we were seeing with his skin have stopped and have started to reverse. I don't know if we are doing something wrong with the diet, or if he is sneaking in "bad" foods at daycare. It is extremely frustrating not knowing and it makes it difficult to fix the problem.

Phil developed a bad case of the gout in his left knee a few days ago and it is still not fully healed. His doctor believes stress brought it on. I'm also feeling a high level of stress. My mind is working overtime trying to process the enormous amount of information out there and while we're seeing improvements in some areas, we're still experiencing a lot of frustration.

DC

Day 9

Hidden Ingredients. If we have learned one thing today it was always double check the ingredients. We noticed that Ryan was off today and his cheeks were a little red in color. We have been giving him watered down OJ to get some vitamins into his system. While the brand we had purchased was ok (A little high in sugar but that is another battle) but we ran out of it on Friday. So we got another one from the garage refrigerator and started giving it to him. This was a brand that we normally do not get but it was on sale before we started this process and never bothered to read the label. Saturday he was fine but this morning he was off. He was running around like before, would not sit still, and was really rough with his sister. When we were playing he even bit me in the leg.

It was not until the afternoon that I looked at the label. He had been whining that he wanted some more OJ. Looking at the label it had 2 ingredients that we did not notice before. They were Calcium Lactate and Calcium Gluconate. The lactate is a milk derivative and we were giving him dairy without realizing it!

The lesson of the weekend was always read the labels and even though we found a food that he can eat, we have to pay attention to the brand as well. Tomorrow we are trying a new store, Nature's Pantry. A health food store that is close to our house and hopefully a good place for us to find the food that Ryan needs.

PC

Day 8

After not seeing Ryan for three days the progress he made was quite noticeable. He affectionately greeted me this morning with smiles and hugs and he was truly happy to see me. His sentences make more sense and are more complex than they have ever been. He's interested in things going on around him, and he is developing a sense of humor.

We ran into a few odd food incidents today. During mid morning he was craving bread. He ate two slices of rice bread, toasted, and then asked for two more. I made him two more slices realizing he must have been hungry since he didn't eat a very good breakfast (2 bowls of cereal had to be thrown out because he refused to eat them with the soy milk and the rice milk). After his fourth slice he continued to want more and broke down into several small meltdowns. We made him one more slice. Then in the afternoon he craved bananas. He ate three bananas today! He tried for a fourth this evening just before bed but we told him 'no' and he could have it in the morning; he accepted that compromise. However, he continued to talk about the banana as we went through his bedroom routine and tucked him into bed.

He looks thinner to me. I will weigh him tomorrow and see if he has lost weight in the past week.

DC

Day 6

Today Ryan was feeling like his old self. We tried a cereal bar as part of his breakfast that we had gotten from Mrs. Greens and he did not like it. It was a Banana and "chocolate" chip bar. He took one bite and the rest came home in a plastic sandwich bag. We are still trying to add variety to his diet yet still maintain our sanity (and wallet). This diet is so expensive, I am not sure how some people can afford all these different food options. As was posted earlier our food bill has tripled!

On a good note when I picked Ryan up today the teachers had snack set up for the rest of the class. Ryan was walking around the table looking at the snack (which looked like a party mix or left overs from previous days). He did not even whine or demand that he wanted some. He recognized that this was not for him and did not make a big deal about it. Before this diet he would have been losing his mind that he was not getting his snack. He simply asked for his snacks.

Dinner tonight was more corn pasta and we found a vegan cheese that you can sprinkle onto the pasta. While he did not eat as much as he did last time he still ate the food without complaint. We just have to get used to the fact that he is not eating as much. In the past he would devour bowl after bowl of pasta. We always thought he was such a good eater but perhaps he was craving the gluten and/or casein. Hopefully his appetite will come back as he gets used to the new food.

We still are not having any luck in the milk area. We gave him rice milk to try tonight with no luck. We may have to try some of these "milks" in cereal and see if he will take it that way. If not then we have to figure out a way to get him his vitamin D and calcium. We will have to wait and see.

PC

Day 5

Today was easier with the Diet. It is now to the point that he does not ask for regular food. Ryan is now asking for his special food or his special snacks. Today both of Ryan's schools reported that he was off today. The report given to us was that he was more subdued then his usual self. I am starting to wonder if he is going through withdrawal? We will have to see if this behavior changes.

Dawn bought chicken nuggets from Mrs. Greens and we gave them a try tonight. He loved them. To prove the point he would not even let me try them. He told me that they were his special food and not for Daddy.

We are still trying to get Ryan to drink a "milk" but so far no luck. We will try the rice milk tomorrow but so far no luck. I guess it will take a little time and patience. Hopefully tomorrow will go as easy as today on the food front.

PC

Day 4

Two noteable events happened today. The first happened as I was driving to work. Here I am driving down the Taconic with Ryan and Julia in the backseat and they are arguing because Julia (2 years old) is asking Ryan (3 years old) to share his cereal with her. Ryan is suprisingly content eating his GF cereal out of a baggie and didn't want to share, but he decides to give her some. When she put her waffle down to grab the bag of cereal, he scooped up the remainder of her waffle and shoved it in his mouth. I yelled "no" but it was too late. I looked at him through the rear view mirror, with his mouth stuffed with waffle, and his eyes welled up with tears. His lips turned into a frown and he was about to cry. He wasn't sure if he was supposed to spit the waffle out or continue chewing. He eagerly waited for me to say something; I truly believe he was about to cry because he didn't want to disappoint me. I assured him it was okay and he could finish chewing. He didn't end up crying, or choking, or spitting out the waffle, but he did end up arguing with her the rest of the ride because she kept on insisting that his cereal was "yucky".

The second event was visiting Mrs. Green's in Mahopac after work. Another expensive shopping visit but I was pleased with the selection and had a great experience in the store. The employees were so helpful and it wasn't crowded. I was able to find lots of things to bring home and try, and for the first time I felt like an accomplished shopper!

I do have to share that I feel extremely guilty leaving for Washington for three days. We're still novices at this and now Phil will have to do this on his own while I'm away. I've asked him to keep up with the blog while I'm away!

DC

Day 3

First day of the diet at school. We spent an hour last night packing food for Ryan to take to day care and to nursery school. We purchased yet another type of "milk", a soy-based almond milk and sent that to one of his schools with him. We were able to get his theraputic nursery school to make a GF diet for him so that will help out a lot. Now we'll just have to worry about his daycare. They are not at all equipped to provide Ryan with a special diet. And it seems like every other day they are having a party for something. They use a lot of carbs for snacks with the kids and we're worried how Ryan will handle having to eat different foods than everyone else.

We did get him a little excited about his "special" foods. We put things that he can eat on a separate shelf in the pantry and we let him pick out what he wants to eat. He really enjoys Glutino pretzels. My husband tried them and said he likes them better than regular pretzels. Yes, the pretzels have salt on them and are probably not the best thing for him to eat, but that is not the battle we are fighting right now. In an effort to get him used to the taste of GF/CF foods we may need to bend in other areas until we get better at this.

I shared the "you're welcome" and "scissor" story from yesterday with a colleague at my job. She is one of the people who gave us the push to start this diet and has been very helpful sharing her knowledge and own experiences with us.

Two positives to share...Ryan's skin was smoother/softer and noticeably less irritated, and his teacher wrote us a note that he didn't drink the almond milk, but that he was calm in school today! Yay!

DC