April 22, 2008
On the 29th of this month, we’ll be taking Gavin here to begin biomedical treatment with Carolyn Walker. Since setting up the appointment a month ago, we were told to read Children With Starving Brains by Jaquelyn McCandless, MD. Oh my gosh, has this ever been good! It’s purely a medical book, but it is so well written and very easy to understand. I have learned so much about Gavin’s possible issues and I’m only on the 3rd chapter.
“There is a growing agreement that most cases of autism and ASD (autism spectrum disorder) derive from a combination of genetic and environmental factors. Genetic factors may set the stage for ASD, yet in many individual cases, environmental factors appear to be the necessary trigger whereby genes then cause the disorder to be expressed” (pg 18).
Some of these “triggers” can be: exposure to toxic chemicals (we’re breathing them every day!), heavy metal contamination (mainly lead and mercury-from dental fillings, fish, and other crazy places), and vaccines.
No two autistic children are alike, but one thing that links them together is their gastrointestinal problems. “Multiple studies have shown malabsorption, maldigestion, gut pathogen overgrowth (fungal, bacterial, and viral), and abnormal intestinal permeability…..” (pg 37).
Yeast overgrowth can also be common. “Many yeast species excrete toxic by-products which cause a variety of digestive illnesses including irritable bowel syndrome, chronic constipation, or diarrhea. One of these toxic by-products is an enzyme that allows the yeast to burrow into the intestinal wall which can contribute to what is termed the “leaky gut” syndrome. The yeast-generated toxins literally drill holes through the intestinal all and seep into the child’s bloodstream. Ultimately, the toxic substances may inflame or cross the blood/brain barrier and by interfering with the flow of nutrients to the brain, impair consciousness, cognition, speech, or behavior” (pg 42). YIKES!
ASD children can also have starving brains because of their body’s inablility to properly digest gluten and casein. “When ingested proteins are only partially digested, what remains are long chain peptides….Many peptide chains are flushed out in the urine. However, because many autistic children have leaky guts, an unacceptable amount of those substances can enter the bloodstream. ….When carried to the brain, these substances have an opioid-like effect with a potency several times that of morphine…” (pg 42).
After reading these first few chapters, it confirmed again in my mind that the GF/CF diet is VERY important for Gavin’s little body.
(I have also found some shocking things (to me) about toxins and heavy metals. More on that tomorrow after I do a little more research).
April 21, 2008
April 17, 2008
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.
April 15, 2008
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.
April 13, 2008
Another one of Gavin’s “issues” is his poop. It’s always been a little funny. I won’t go into much detail other than to say it’s not solid and it never really has been. (Sorry. I’m done.) For a long time I thought it was because his favorite (and pretty much ONLY) food he was consuming on a daily basis were Amy’s Bean and Cheese Burritos.
In my defense, Gavin is my “test waffle” and I had no idea what his poop should look like and that it’s not ok for him to be SO picky. I just thought kids were picky eaters. Most are. But not to this extreme. From about 18 months on, Gavin has had a very limited menu of foods that he has deemed acceptable. For the longest time it was the burritos. Then it was Mac & Cheese. Sam’s Club became our best buddy when it came to enormous boxes of Easy Mac. Oh those 4 minutes in the microwave are a LIFETIME to a hungry toddler. But I digress……….
After a year or more of weird poop, I talked to our pediatrician about it. I was told not to worry and was given a referral to a children’s gastro doctor. For a while I was thinking celiac disease. He displayed some of the symptoms. This doctor took one look, and I mean one look, and said that was not it. Whew! X-rays were taken (yes, of his stomach) and a few minutes later, it was pronounced that Gavin was backed up all through his intestines and that he just doesn’t like to poop. WHAT? You have to understand something. Gavin was pooping after every meal. How can you sit there with your specialized medical degree and tell me that he doesn’t like to poop when he does it 2-3 times a day? We were confused, but hey, he’s the doctor, he knows what he’s talking about.
We walked out of that office that day, a prescription for laxatives in hand. After a month of laxatives and a follow-up visit where we were told to keep up the laxatives, I finally got smart. This guy DID NOT know my son. I do. Gavin isn’t afraid or doesn’t like to poop. THAT’S NOT IT. I was angry at the doctor for not digging deeper into the issue. I was angry at myself for believing everything he said and not questioning anything. I was angry that I had paid for 3 prescriptions that were not helping. I was angry that I didn’t know what else to do.
So we did nothing, for a while…….
April 12, 2008
I’ve been thinking about blogging for a long time but felt I had nothing truly significant to say. All of my friends have blogs and there is just something in me that wants to rebel against all things everyone else is doing. It was just recently that we’ve taken some major steps in healing our son and I feel that others need to know. Especially those walking along the same road we are.
Here’s a brief snapshot of our lives over the last year: Gavin was about two and a half when we decided he needed to be evaluated for speech therapy. He wasn’t talking like he should and he had some other funny “quirks” (ie: carrying an armful of toys around ALL DAY, opening and closing doors, spinning objects). We contacted the public school system and was directed to the Early Access Education Program. Over the next several months, Gavin was visited weekly at our home by a speech pathologist and a developmental teacher. Both women were wonderful and it was always the highlight of his week.
About three months of therapy went by and it was mentioned that Gav displayed some “autistic characteristics” and should be formally tested. Needless to say, I was shell-shocked. My perfect little baby DID NOT have anything wrong with him! He was just a boy and boys always develop slower, right? THE WORD conjured up images of Dustin Hoffman in Rain Man.
Gavin was formally tested in September of last year and was found to have Pervasive Developmental Disorder-Not Otherwise Specified (or PDD as I will now refer to it). He didn’t score high enough on the test to be considered autistic (one test you want your child to score low on!) , but he still scored high in some areas, enough to warrant this diagnosis. (PDD is classified under the autism umbrella).
In January of this year, Gavin began school through the Early Access Program and LOVES it. Mommy had a hard time letting him go, but it’s been so good for him to have the social interaction in a classroom setting. He has specially trained teachers and lots of activities that I would not have been able to replicate. Heck, they get to go on skywalks almost every day!
We have already seen vast improvements in his speech and his eye contact. He loves his teachers and always talks about his friend Toby (whom the entire class refers to as Tobyoby)