On Our Way to Maryland!

We are really excited to be leaving for Maryland tomorrow. Maya loves the airplane and her family members in Maryland, so she is super-excited for the trip. Shayne is so excited he is about to explode. This year Maya is a lot more interested in playing with other kids that she was last year, although she played with Sydney and Jonathan pretty well at the beach a few times last year. Anyway, when playng with her, there is no doubt that her cousins will notice that she is a little different, even if they didn't last year. This is mainly for Alison, Tammy and Sarah...if you want to maybe mention to your kids that Maya doesn't talk much, but she likes to play still, that would really help. Tell them that just because she isn't saying much doesn't mean she doesn't like them or isn't having fun. Also, if they want to play something specific with her, showing her what to do instead of telling her what to do usually helps. If she starts screaming and hitting herself, which we are really hoping she doesn't (she didn't last year), and any of the kids see her, it can be upsetting. You can just say something like, "When Maya doesn't know how to say what she wants, sometimes she gets really mad. Her mom/dad will take care of her. She will feel better soon." Again, we are hoping to avoid any of those episodes, and really hoping she develops her social skills a little more with her cousins this year. Thanks again for all of your interest and support with us and Maya. We are so excited to see everyone!

I Give the Second B12 Shot

Actually, compared to everything else, giving her the second B12 shot (the doctor gave the first one) was not bad at all. I decided to wait until a few minutes before I normally wake her up. I wake her up most days around 8:45, because if I don't she will sleep all morning and stay up half the night, her natural clock being very much like her mama's. Anyway, it was over in .5 seconds and she barely stirred. We only have to do it every three days. As far as any impact it seems to be having, we are seeing a lot of language, eye-contact and social interaction, all great to see. She seems to be continuing to move forward in all areas, especially the past 2 days. Hopefully she is through the rough patch and on a more permanent upward-curve. We are so happy to have our happy girl back (well, mostly happy...)

Gluten-Free Oats...Awesome!!

Maya started asking for oatmeal last week. Great, right? Usually...Well, it goes against all motherly instincts to forbid oatmeal, let me tell you. Luckily, a farmers market type health food store down the street just started carrying gluten-free rolled oats and they are great. Maya loves them and so do Shayne and I. I have been making them with a little brown sugar for breakfast for the past few days and it has been working like a charm.

B-12 Shots

So yesterday we had our appointment with the doctor so he could show us how to give the B-12 shots. I am actually glad they come in shot form, because it is virtually impossible to give her anything orally these days. I try to give her a teaspoon of multi-vitamin and mineral liquid each day and she usually forcefully expells at least half of it, even if she is laying down and I am holding her mouth. She is very determined not to ingest vitamins. I have tried mixing it with everything, and she can instantly detect the most minute amount, and will reject the food or drink with a simple, "Plah!" So the needle is tiny and the dosage is very small. She didn't seem to be very bothered when he gave it to her. We only have to give her one every three days. He said a lot of people just do it when they are asleep and often they don't even wake up, so that is what I will try on Thursday.
So the appointment went well and he said that the rough period we went through is "totally expected" and that it often takes a few months before you see significant improvements. A few months...so I guess we are going to stick with it for awhile. We are happy to be back most days to where she was before at least, because now we can go places again. We had forgotten how diffucult it was for us 1 1/2-2 years ago to really go anywhere or do anything. At the time it didn't seem as bad because we were used to it I guess. On Monday we went to downtown Phoenix on the light rail train, and walked around downtown for awhile around dusk, so it wasn't too hot. It was really fun. It took 2 1/2 hours all together and she was happy the whole time. That is pretty much how it was before, so hopefully we are on the upswing. I am glad to be, especially considering we will be flying across the country a week from today.

Even More Picky

Things are getting more difficult with the diet, as she has decided to stop eating some of the foods she was eating with no problem earlier. Some things she has stopped eating for the most part are:

• rotisserie chicken
• GFCF pancakes or waffles
• pasta
• sometimes eggs

I said to her this morning, "Do you want a pancake?" and she said, with a look of disgust on her face, "Pancake-plah!" While this may not seem like a big deal, we are already so limited, so this is not good. Hopefully we will be able to find some new foods she likes...

Last Week: A Recap

So last week was pretty rough until about Friday. We knew that this was a trial and error thing and that things were going to get worse before they got better, but she really regressed a lot for a little over a week. We were seeing behaviors and sensory issues that we haven't seen for two years in many cases. Full-blown, face-hitting tantruming, and very little talking to name a few. It was very emotionally difficult for everyone to go back to that after coming so far. Right as we were about to throw in the towel with the whole diet thing, we gave her a piece of cheese on a cheeseburger (I read that gluten can take 3 months to work out of the system, where you usually know about casein in about 3 weeks). It had almost been 3 weeks, so we gave her the cheese, and she was great the rest of the night, and has seemed to be on the upswing since then, having days that are comparable to what we were having before. The only marked improvement from before has been her use of "my" (ex. my leg hurts, my popcorn, etc.) and her interest and improvement in fine-motor activities such as cutting, gluing, coloring and drawing. I will get my scanner hooked up and scan a few things so you can see what I am talking about.

Unexpected Events While Sticking to a Special Diet

I haven't posted in awhile...Things have been pretty hectic...

So while we were up camping a week ago Sunday-Tuesday, we packed very carefully so that we would be able to stick to the diet. We were only planning on being gone over night. That all changed in a hurrry when the car wouldn't start. We tried to do the best we could, a hamburger (she doesn't like the bun) and french fries for dinner, a sausage and egg for breakfast and then we were home by lunchtime.

She was still having a really hard time with being flexible on the trip. We were all tired of dealing with the car, but she had a full-blown meltdown once we got to the garage. We (Maya, Shayne and I) stayed outside, so it could have been worse, but it was pretty bad.

Marshmallows Are GFCF!!

This is great news for us as we prepare to go on our first camping trip of the summer tomorrow. She has been so excited about roasting marshmallows she even pretended to do it a few weeks ago with a stick and a balled up paper towel made to look like a marshmallow. What a relief!

GFCF Day 7 (Friday)

breakfast
a bunch of organic strawberries

lunch
GFCF pancakes made from Bob's Red Mill mix, really good, sort of taste like multi-grain pancakes

snack
strawberries
Trader Joe's GFCF brownies

dinner
pulled pork and BBQ sauce
blueberries

Her behavior was much better today and she is talking about the same as before the diet. She is showing more interest in fine-motor activities such as drawing, coloring and using the hole puncher.

GFCF Day 6 (Thursday)

breakfast
egg
chicken sausage (don't think she ate any)

lunch
organic apples and peanut butter
tortilla chips

snack
chocolate ice cream made with coconut milk (from Whole Foods, she loves this)

dinner
BBQ chicken breast
organic peas

Her behavior has been absolutely attrocious today. Like a bad day when she was 2 1/2. Hitting, screaming, tantruming, throwing things, making a scene everywhere we have gone today. She seems really itchy, headachy, angry, uncomfortable...I thought we were coming out of it yesterday, but today has been the worst so far. Hopefully this part will end soon.

Trader Joe's GFCF Brownies...Delicious!!

Today we made brownies from a mix we bought last week from Trader Joe's. They were delicious! You make them how you would normally make brownies, water, egg, oil, mix and bake. They are super-easy, inexpensive ($2.99 per box) and delicious! Maya was in heaven eating hers right out of the oven. This whole past week has seemed like me constantly denying her, so it made me very happy to give her something that just seemed like a regular treat. Of course just because it is GFCF doesn't make it healthy, but this will make a great once-in-awhile treat.

GFCF Day 5 (Wednesday)

breakfast
GFCF pancakes from Trader Joe's mix, frozen from 2 days ago, then put in the toaster, that worked well and was super-easy
1/2 of a home-made popsicle (cran-grape, frozen blueberries, raspberries and blackberries blended)

snacks
1 1/2 apples
banana
a few grapes

Lunch
left-over BBQ chicken pieces
orange slices
a little cran-grape with new vitamin and mineral supplement powder in it which just arrived today. She drank about 2/3 of it, then put it down and said "yucky"...not bad for day 1 of our first supplement...

Dinner
taco meat (The rest of us had regular tacos. She only wanted the meat anyway, so it worked out well)

Behavior was pretty good today. She also had an obvious language burst, mostly after dinner. She was downright chatty. One thing that she started to do was to say the less essential words like "a" and "the" in sentences, which she has pretty much always left out. For example, when Rick took a piece of her chicken off her plate, she said "Daddy, don't eat the chicken." Before it would have been "Daddy don't!" or "No chicken!" or even "Daddy don't eat chicken!" or something along those lines. She was also gesturing more than usual (waved once, pointed a lot and pretended to fly flapping her arms), smiled noticeably more and had very good eye contact. Right before she went to bed, she put on a bathing suit, spread a towel out on the ground, layed on it and said "It's the beach." That is different because she normally doesn't use "the" and I have never heard her use another contraction besides "don't". Rick noticed a lot of the same things that I have written about and Shayne even pointed out that Maya is "doing better with her talking" so I don't think I am imagining the growth.

Withdrawal Symptoms

We noticed quite a few withdrawal symptoms on days 2-5, peaking on day 3. Here is some information about that:

" Some children, especially those who are making opiate-like peptides from their foods, are actually physically addicted to those foods. When the foods are removed from the diet, they can experience symptoms that are similar to a drug withdrawal. The most common symptoms are irritability, and sometimes anger or rage. Children may also temporarily regress in their behavior or in their developmental skills. Withdrawal symptoms can actually be viewed as a good sign, as this indicates the foods were having some effect on the child. Anytime there are negative symptoms from removing a food from the diet, the food is a problem."

From The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet, by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.

More on withdrawal symptoms:

Immediate Symptoms of Withdrawal from Gluten and Casein:

• Insomnia
• Anger and anxiety
• Fatigue
• Night sweats and day sweats
• Hyperactive behavior
• Constipation or diarrhea
• Clinging and whining
• Upset stomach
• Cognitive dysfunction
• Return, or amplification of prior ADHD or autistic behaviors

From Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies, by Kenneth Bock, M.D. and Cameron Stauth

GFCF Day 4 (Tuesday)

breakfast
GFCF frozen pancakes from Trader Joe's
strawberries

snacks
banana
tortilla chips
Lays potato chips

lunch
maybe a little leftover brown rice pasta with sauce and chicken sausage...not sure if she ate much of it.

dinner (this one was a hit)
BBQ chicken breast (a whole one, pretty good sized, cut into bite-sized pieces and dipped into more BBQ sauce)
a bunch of peas

Behavior a little better today, still a little irritable, but better than Monday. She was talkative and playful most of the time.

GFCF Day 3 (Monday)

breakfast
GFCF pancakes made from Trader Joe's mix- ate these all morning, probably 4 or so altogether
A bunch of organic strawberries

lunch
mainly snacked on tortilla chips, Lay's chips, pancakes and strawberries
offered a whole hotdog, but she did not eat it

dinner
made brown rice pasta with Classico sauce (no preservatives) and chicken sausage (no nitrates)
broccoli she didn't eat either thing, but ate left over taco meat and an organic apple, the rest of us liked the pasta. It is actually more like traditional pasta than whole wheat pasta is.

I tried giving her a homemade popcicle made with rice milk, peaches, mangos and sugar, but she didn't like it. Shayne did though! A side-effect of this whole thing is that we are all eating healthier than before.

Her behavior was awful for a lot of the day, especially in the morning- a lot of screaming, face hitting, banging things, crying, OCD (with doors being open, lights off, etc.) and inflexibility, things that we haven't seen this much of in a year and a half or so. Again, this is actually a positive sign at this stage, as she "withdraws" from the things that have been causing her problems...that has been our mantra lately anyway...worse before better, worse before better...

GFCF Day 2

Well, today here is what she ate:

breakfast
GFCF pancakes frozen from Trader Joe's (2) with maple syrup

lunch
1/2 banana
2-3 strawberries
a few tater tots with ketchup

snack
banana

dinner
salmon
peas
orange slices

Her behavior totally went downhill on day 2...this is actually a good sign, believe it or not. It means her body is withdrawing from the opiate-like effect that gluten and casein have on her body. If gluten and casein were not much of an issue, we wouldn't see many behavior changes, positive or negative. It should mean that after we get all of it cleaned out of her system, we should see some improvements. Hopefully it won't take more than a few days.

GFCF Day 1

Well, Saturday was our official day to start the GFCF diet with Maya. Everything went well and she ate a variety of healthy foods.

Breakfast:
GFCF pancakes with real maple syrup
strawberries

Snack:
dry corn cereal sweetened with a little cane sugar-she likes it cause it has panda bears on the box.

Lunch:
Pulled pork and BBQ sauce- she has never liked a bun with this, so it worked out great. We all had buns and she didn't mind at all.
blueberries

Dinner:
Taco meat
tomatoes (she didn't eat many of these, but loved the meat, we had regular tacos)

As far as any imporvements go, it is supposed to get worse before it gets better if the diet is having an impact. Not much change on day one.

GFCF Here We Go!

Why gluten and casein free?

We have thought for awhile now that Maya shows the symptoms of someone with food sensitivites or allergies like being itchy, having dark circles under her eyes sometimes and "brain fog". Here is why so many kids with autism respond so well to a gluten and casein free diet, taken from the website http://www.gfcfdiet.com/:

The theory is that many if not all autistic children have a damaged intestine/gut. The damage may be there from birth but more likely comes from some immunological injury like a bad reaction to an immunization. (keep in mind this is mostly theory). Autistic children seem to have weaker immune systems, and a lot seem to have digestive problems.This "leaky gut" allows some food proteins to pass through into the bloodstream only partially digested, particularly the gluten from wheat/oats/rye/barley, and the casein from milk and other dairy products. These partially digested proteins form peptides which have an opiate-like affect (opioids is another term for them). They can bind to the receptors and cause harmful effects in the brain just like a regular opiate. Opiates can either cause or magnify autistic symptoms. The opiates are a type of narcotic. There are receptors in the brain that they bind with to reduce pain and induce pleasure, but they also have harmful side effects. An example of an opiate is morphine or heroin. Until it can be figured out how to heal the "leaky guts", many parents are putting their children on the gluten free/casein free diets . By Barbara Byers

So the theory is that the kids aren't exactly allergic to gluten and casein, but that they can't break it down properly, and it is absorbed into the bloodstream in this partially broken down state and that causes all kinds of problems. So we thought we would give the diet a try.

So in practical terms, what does a GFCF diet entail? It means cutting out wheat, oats, rye, barley, and dairy and all things that are made with any of that. A lot, right? Yes, until you consider trying to do this diet 5 or 10 years ago. Now, so many people are following the diet that there are tons of books, web resources and products to help. From what I have learned so far:

5 Most Difficult Foods to Cut Out:

1. doughnuts-those are her favorite. There is a GFCF doughnut recipe that I may try at some point soon. If I do, I'll let you know how they taste...
2. cheese-Maya loves cheese-string cheese, cheese slices, grilled cheese, cheese burgers, etc.
3. pizza-that'll be hard for all of us...we can't exactly eat it in front of her.
4. bread-toast, PB&J, etc. We tried making one kind of GFCF bread that I thought was pretty good, and even Shayne liked, but Maya wouldn't eat it.
5. chicken nuggets-Maya would eat these at every meal if she could. No luck with a GFCF version, although there are a few recipes I might try.

Foods/Condiments that I am so happy are GFCF:

1. steak-she loves this
2. A1-the only way she likes to eat steak. This was a close one. Vinegar has gluten in it, but distilled vinegar or cider vinegar don't. A1 has distilled vinegar...:)
3. salmon
4. ketchup (Heinz) and most kinds of french fries (not McDonnald's fries though...I think our McDonnald's days are over, at least for awhile...probably not a bad thing)
5. BBQ sauce-same story with the vinegar. There are a few brands out there that are ok because they use a gluten-free vinegar type. She loves dipping anything in BBQ sauce.
6. The taco sauce she likes...this makes GFCF tacos very easy to do. The only thing you have to leave off is the cheese, but they are still pretty good. I even snuck some cheese on Shayne's and she didn't seem to care she didn't have any.
7. Mission tortilla strips-yes, those are the kind that come in an enormous bag at Costco and we all like them :) Salsa and guacamole (homemade) are GFCF also.
8. eggs-she has always liked those for breakfast

What great GFCF substitutes have we found so far?

1. GFCF pancakes from Trader Joe's- they taste very close to the real thing and don't cost too much. We all four like them. This was such a big deal to me because she LOVES pancakes.
2. GFCF chocolate chip cookie mix from Bob's Red Mill- not exactly the same, but good, and again, everyone likes them. Also, they have this mix at the regular grocery store.
3. Ice cream made from coconut "milk" instead of dairy. It tastes great, but it's 5 dollars a pint... There is a recipe that I have that is made from coconut milk also. I will give it try soon and let you know how it tastes.

I will write more later about how our first few days of going GFCF have gone.

Why Biomedical?

On Monday, we went to go see a new doctor for Maya who is a integrative pediatrician and one of his specialties is treating children with autism. He is also a DAN doctor, which means he believes in biomedical interventions for the treatment of autism and has been trained in that area. There are tons of people who have seen amazing improvements in their children as a result of treating the underlying medical issues that many believe cause autistic symptoms or cause them to be more severe. There are others who do not believe in this approach. Why are we doing it? As we were reading case study after case study, so much of the information shared by parents and doctors was so similar to our experiences with Maya that it seemed worth trying. Nothing that we are planning on doing is more than "inconvenient" at this point. If there are underlying medical issues that are having an impact on her behavior, we want to address them in as natural a way as possible. The three things we will start with are:

1. Gluten-free casein-free diet
2. A fairly potent multi-vitamin and mineral powder, formulated specifically for children on the autism spectrum.
3. Vitamin B-12 shots.

I am keeping this short, as I do not want to bore you by repeating everything I wrote on our family blog.
I will post separately about why these 3 interventions work for some kids and what our experiences are.