Tuesday, January 19, 2010

What is the SCD? Or, How in the heck am I supposed to do THIS!!!!

It took me a year of owning and reading/rereading the book Breaking the vicious cycle by Elaine Gottschall to come to terms with the fact that I was going to have to do the Specific Carbohydrate Diet (SCD) with my eldest son. The diet is extremely intimidating all on it's own, but once you factor in no eggs or beans, limited nuts and a rotational diet it's a paralyzing task. I'm glad I took the year I did to do research, to learn about other diets that had food that would fit under the umbrella of SCD.

My biggest concern was finding snacks for my son. Cooking proteins for him was not a big deal and learning to make nut milks and then nut yogurts wasn't too hard. However, making baked goods (cookies, breads, muffins, brownies, chips) became a real challenge. We had already been Gluten, Casein, Soy and Egg free, but now we were losing rice, potato, tapioca, corn, arrowroot and all other polysaccharide (multiple sugar chain) starches. The raw food diet was our saving grace. I was able to make a multitude of raw cookies that could be dispensed on a rotational basis. The cookies were full of protein and "good" carbs (great for a growing child!). When his friends were getting cookies full of sugar and mind numbing "bad" carbs I took a great sense of pride in the fact that my child was getting a brain "boost" instead of a brain "fog".

The primary principle behind the diet is eating foods that the gut need expend no energy on digesting. Monosaccharides are readily absorbed by the gut without effort, now the gut can use all its energy on healing. It is a sound scientific principle and the diet has been proven over and over again. Our success was measured in solid stools for the first time in 5 years and FINALLY being able to potty train our son. It was a near on miracle for us. It was also a long haul. It was 3 years before we could successfully take our son off the SCD, and to this day at least half his diet falls under the umbrella of the SCD. His diet now includes some corn, amaranth, chestnut and sorghum, some starches (arrowroot, tapioca) and VERY occassionally potato. He still eats raw food cookies, and he still eat rotationally. He also has done all of this dietary intervention under the careful watch of a Registered Dietitian, www.holcarenutrition.com, and his regular pediatrition, www.drohara.com , and his pediatric gastroenteroligist. He also has, and still does, take several medications to help heal his gut, but without a doubt I can say the medicines didn't work until the diet pavedthe way for them. We even have biopsy reports to back that up! On my son's last endoscopy/colonoscopy the doctor stated that if he hadn't done the previous 3 scopes, that he would say my son had been misdiagnosed, almost all the damage in his gut had healed!

The following is a recipe for SCD chicken nuggets:

1 organic chicken breast
1/4 - 1/2 cup pureed squash (depends on size of breast)

Almond flour
organic cold pressed coconut butter/oil

Grind chicken breast in a grinder or food processor, then mix in squash. Scoop 1-2 tablespoons at a time and put in almond flour. Cover both sides in flour and place on wax paper lined cookie sheet or plate. Repeat until all nuggets are made. Refridgerate for 1 hour (or more). Heat coconut butter/oil in skillet over medium-low heat. Cook nuggets slowly being very careful not to burn the almond flour. Flip and cook on other side when almond flour has browned slightly. Reove to paper towels to drain off oil. Nuggets can be frozen and reheated in a 300 degree oven. Again watch not to burn the almond flour. Nothing tastes worse than burnt almonds!

I will post again when I get the chance. Thanks to everyone who reads this!

Monday, September 21, 2009

Education, record keeping and the rotation diet

Think about if you never went to school, how would you read or write? Wouldn't your life be terribly out of sorts? What if your doctor didn't go to medical school, just apprenticed under another doctor and just knew how to treat and diagnose certain ailments? Would they really be able to offer up the best treatment options for an ailment they had no personal experience with? That's what it is often like at the beginning of the journey for dietary intervention and bio-medical treatment of Autism. Your own personal education seems lacking and the local pediatrician often knows little of Autism other than behavioral therapies and also often disregards connections to G.I. problems, allergies and diet. I was thoroughly disappointed with the local responses we received and felt left with little choice but to acquire a doctor an hour and a half from our home, Dr. Nancy O'Hara http://www.drohara.com/ . Going through her practice was a very intense experience. We HAD to put our son on the GF/CF diet (we already had him on it on our own) and use Vicki Kobliner M.S., R.D. http://www.holcarenutrition.com/ as our nutritionist. Vicki was a true "Pro" and walked me through what I needed her to. There were a lot of blood, stool and urine tests. Then there were a lot of supplements to get him to take and weekly B-12 injections and monthly secretin and glutithione infusions. The worst part was there were many things I just didn't understand, like the methylation pathway and metalithione deficiency and many of other things. I was outside of my educational base and needed to catch up quickly for my child's sake.

I set out very quickly to do just that. Just a few months after joining Dr. O'Hara's practice a Defeat Autism Now! (DAN!) conference was held in Boston. I went out of my way to attend. I stayed in the home of a family friend and walked over every morning and back again at night. I took in everything I could from the seminars, took extensive notes and highlighted items to research on the internet when I got home. At the end of each day I felt as if my head was going to explode. I was entirely overwhelmed. I now know that that was a good thing. It was the most expedient way to get from point A to point B. That all said, it wasn't enough! I found myself absolutely lost in the Science Session of the conference. The Science sessions are meant for medical professionals and very experienced parents, I was neither. Frankly, I think I felt left out in a way. It was like "they" had an inside track on how to navigate a certain path and I was on the outside trying to get my son on that path.

Soon after I went back to school. I had intended to get a masters degree in Nutrition, but that never came to fruition. I did however take Anatomy & Physiology and Biochemistry and suddenly I was on the inside track. When I went to the next DAN! conference I sat in the Science session with confidence and greater understanding. I still had a splitting head at the end of the day but maybe not quite as bad as the year before and I didn't have any feeling that things had been lost on me. My greatest recommendation to new parents is educate yourselves. Now with online classes it is even easier than ever. DAN! conferences now even post webcasts online for no charge at http://www.autism.com/ . It used to cost a substantial chunk of change to see those videos!

Once I understood what was being said to me and how to implement the necessary changes it was time to move on to documentation. Doctors keep charts on patients, scientists keep detailed notes on experiments, our lives became no different. I created a daily log sheet on the computer that allowed us to check off each supplement or medication our son took. It allowed us to fill in the blank for everything he ate or drank. It also provided a place to keep notes on behavior, allergic reactions (red cheeks/ears, swelling) and stool patterns. Creating that log was the best thing I did aside from dietary intervention. Two to three months of daily entries fit in the three ring binder at any given time. Patterns eventually revealed themselves, often subtly. Without that book I would never have seen them myself or convinced anyone else that there was a pattern. Having the book up and going also made doing a rotation diet far easier.

It was easy to slightly alter the computer sheets I was printing out to have four variants. The real challenge was finding the items to put into the rotation. Items he would willingly eat and drink and that I would be strong enough not to cave in and give him out of sequence. Each of the four days had a different protein, vegetable, fruit/juice and snack items. It was as simple as turning to the correct day in the book to see what to feed my son for the day. It actually helped simplify things. Eventually we bought a big freezer to keep in the garage that had four shelves and two bins. That became his freezer. I made his food in big batches and put it on shelf 1,2,3 or 4 depending on which day of the rotation it lined up with. It made it easy for us and for others if they came to babysit. I won't lie, the first few weeks were very difficult. He wanted amaranth waffles every single day. I did a lot of lying in those days (using my sad face), "Sorry, mommy doesn't have anymore waffles. We're all out. No more."

He still developed allergies to foods, but it definitely slowed things down and gave me some respite to work on new recipes. He has been on a rotational diet 6 years to date, in the last year we had to remove two foods due to increased allergic response, however we added back in five foods to his rotation because he is not reactive at this time! I'm so glad we stuck with rotating. It wasn't easy at first and it didn't stop the allergies from happening and it took three years to start seeing really significantly positive results but all told I wouldn't have done anything differently.

In my next post read about doing the Specific Carbohydrate Diet (SCD) for a child that is GF/CF and allergic to eggs, all beans, quite a few vegetables, needs to rotate and has sensory/texture issues with food! Lots of fun!

Lastly, I know I'm not posting with any sense of regularity. I'm sorry. I thought things would lighten up when my kids went back to school. THEY DIDN'T!!! Infact, m youngest son has developed a few new allergies in the last 2 months and I'm franticlly working on readjusting his diet. Please just check the site when you think of it. Eventually a new post will find it's way on here!

Tuesday, August 25, 2009

Why is my child doing this? And what can I do about it?

I am an avid believer in the fact that what you eat affects how you behave. We have all heard the phrase, "You are what you eat" and we all understand the vague concept that if you eat junk food and large amounts of fat that you are typically overweight and not very healthy. The converse being that if you eat "healthy", reduced fat, whole wheat, soy milk, lots of veggies and such you will have a typically healthy body. If only wishing made these things true. As with many, if not all, things in life the shades of grey take over. I personally know many people that when doing a "healthy" diet would be hideously ill, myself and my children included. Not to say there aren't "healthy for us" diets to be followed, there are, but finding those diets can be an absolute challenge. There are IgE allergy test and IgG allergy tests, scratch, patch and blood draw, and then there is the elimination diet.

Personal opinions vary on which methods are the best, and only a family or individual can make those decisions. Our family has found, for us, that the IgG test is a great detector of allergens. Our youngest tends to get tested about twice a year, and our eldest anywhere from 2-4 times a year depending on his reactivity and symptoms. We have found, especially with our eldest, that staying ahead of the curve on allergic reactions (i.e.- dietary changes made prior to strong reactions) has really helped benefit his health. Healthy people are often happy people, often well behaved and thoughtful of others, not always but often. On the other hand, people in pain or even general discomfort are often discourteous towards those around them, if they pay them any mind at all. Often their behavior is considered bizarre, thoughtless and even rude. Consider the case of chronic undiagnosed IgG food allergies, wherein the person afflicted doesn't know what is making them sick, hence they are unable to get better. Now imagine that same person is a small child, a child who hasn't learned to talk yet because he feels so sick he can't focus. Of course the child doesn't even know he feels sick because he has never felt any other way. Unfortunately this was the story for my eldest son, until we found a doctor that helped us figure out how to help him.

His behavior was often erratic and/or fixated, what we saw as quirky, and he would have these marvelous mood swings. He had auditory and other sensory integration issues, of course we had never even heard of those back then. I just knew I needed earplugs every time he needed a bath and that he needed to leave the house if I was going to vacuum. Never in a million years would I have guessed that all of this was a byproduct of his diet. It went against everything I had previously learned in my life to think that his behavior was caused by eating Wheat Thins, but it was!

Putting him on the Gluten-free/Casein-free (GF/CF) diet was the first step in helping him heal. It was also a real education for myself to see how much the "healthy" foods I had been giving my son were like poison to him. His behaviors began to change and it became quite hard to ignore what I was seeing. Then we got his first IgG allergy bloodtest done. It turned out that our adventure was just begining. Within six weeks of going GF/CF we discovered that he was allergic to eggs and soy. Now there are a lot of great products on the market as far as GF/CF, more now than 7 years ago, but to this day it is a challenge to find prepackaged foods that are GF/CF and soy and egg free foods. I hadn't baked in a while, not that I wasn't pretty good at it, but imagine if you will HAVING to bake form scratch, yet not being able to use any ingredients you've used before. It's a miracle that my son didn't starve in the first two weeks of his ammended diet, everything I made failed for those two agonizingly long weeks. Then something miraculous happened, the muffins stopped caving in on themselves, the bread rose and the cookies stopped falling apart. I had learned to cook and bake GF/CF without eggs or soy, a small miracle!

Slowly but surely I saw his behaviors and his comprehension of his surroundings change. Back then all we were doing was dietary intervention. We had yet to start any bio-medical treatment and we were seeing steady improvement. Eventually we hit a dietary plateau. That's when other bio-medical treatments took center stage in his treatment, however, dietary intervention has always remained a mainstay in his treatment. It is the least invasive and most natural treatment for autism available and is by far the first I recommend to any parent just starting out. In mid-September learn why rotational diets are a serious matter for some of our kids and the best ways to make it easy.

Sunday, July 5, 2009

Sign language as a bridge

I mentioned in a previous blog that I had, at the very outset of this journey, booked appointments with 2 separate speech pathologists. The first one could take us the very next day. In hindsight, I now know full well why his schedule was so free. Another practitioner could take us in six weeks time, Mary Pope. We saw her as well, she was the best speech therapist in the area. A great turn of luck opened her schedule up early for us and she actually saw our son within four weeks time. The difference of style, approach, sheer volume of knowledge and experience was evident from the outset. In addition, she was familiar with the GF/CF diet and was incredibly encouraging about our continuing with it. At this time, our son had been on the diet for a couple weeks already. He had regained a handful of words, however; they did not hold very functional meanings to him. Ball, could literally mean anything from, "I'm hungry" to "I want to play outside".

We met with Mary for 2 hours, longer than with the other gentleman. She interviewed us, observed our son, played with him and worked with him for a short time. When we left he knew 5 pieces of sign language: More, please, all done, thank you, and no. The best part was that they were all functional. He used them all appropriately, right from the start. There was no question about it that he knew what he was saying to us. The best part was that now he could verbally say one word, but could now communicate a small sentence. Just by saying juice out loud, he could now use his hands to say please, more and thank you. Then we would verbally model the whole sentence verbally back to him: "I want more juice please." This was a sudden, huge step forward for us and him. We could see his frustration levels go down right away, not that that would last forever.

Our son began seeing Mary twice a week in the beginning. Eventually, it went down to once a week and in our case eventually discharged. She was a godsend to our family. She was able to work without food rewards, unlike many therapists. She was intensely dedicated and highly creative. Our son's allergies were on the rise and she was incredibly careful to use only products that he was not allergic to. Sign language was a large part of working with her in the beginning and she recommended the book More than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder by Fern Sussman http://autism.about.com/od/booksabouttreatingautism/gr/morethanwords.htm , I recommend it too. It helped a lot, it gave us a greater sense of what our new job as parents was. We were now expeditor's of language and puzzle solver's extraordinaire. Below is a photo of them working together towards the end of his therapy.

Around the same time we were discovering the severity of his allergies. He began having reactions to almost everything he was eating and soon began reacting to art supplies that he worked with. More than once therapists had to end sessions because his face had turned red and swelled up from having magic marker or glue on his skin. Soon I figured out the maze of art products, who to call ,what to verify and what he could safely use. I created a portable art box that travelled with him, one for home and one for school. The website www.gfcfdiet.com is an excellent resource for this to start out, but if there are more allergens than gluten and casein you need to call the companies yourself.

Then my son went allergic to beef. For the life of me I couldn't figure out why. He was on a rotational diet, he only ate beef once every 4 days. I'd known he was allergic to something for a while. I'd seen the telltale signs he gives off. Dark circles under his eyes, loss of appetite, lethargy, intermittent stomach pain and constipation and diarrhea at the same time (believe it or not). Certainly not one sign pointing to a specific food. Eventually one night he vomited up all the beef he had eaten the day before, nothing else just the beef. Ah, the final clue. A week later it was the pork. I couldn't understand why, though. We rotated his food religiously, we still do!

Then one day in the health food store I saw vegetarian pill capsules and asked the owner about them. He told me that gelatin capsules were derived from pork and beef! Maybe I'm just a big dolt, but I never imagined in a million years that the gelatin capsules (supplements) I was giving my son, daily, contained traces of beef and pork. It turned out he was having beef and/or pork everyday! I ran home and read every box of Knox and Jell-O I had in the house, they all contained "Gelatin". Infact, Knox is nothing but gelatin. Yet there is no clue as to it's origin on the box. Probably because most people would be grossed out.

Almost needless to say, we switched to vegetarian capsules immediately. I complained to all of the supplement companies I dealt with, and it helped. Apparently, I wasn't the only one with problems. We still use all the same supplement companies now that we did then, but they all use vegetarian capsules now. Power to the people! Never doubt that your opinion is important to a company that wants your money!

In two weeks, why networking, researching, record keeping and attending conferences is so important!

Monday, June 8, 2009

What do you mean that's not Gluten Free?

I consider myself a fairly well educated person. I'm not a genius, I'm not going to win hundreds of thousands of dollars on Jeopardy, but I do have a college degree in Psychology. Thanks to my mother's long term illnesses I spent years in and out of hospitals and doctors offices picking up medical terminology and a far greater understanding of the workings of the human body than even my education provided. Then my first post college position was in a psychiatric hospital working closely with the doctor, nursing team and social workers. I am more than capable of reading an abstract from a medical journal and extracting the information I need from it. So you would think that doing something as simple as removing Gluten and Casein from my son's diet would be simple. Guess again!

In some respects, yes, it is easy to remove gluten and casein from a person's diet. That is if you are prepared to make all of the food yourself. Let's be honest. Truly honest. How many people make all the food in their homes' nowadays? We live in an automated society. We eat pre-made foods. Otherwise known as processed foods. Processed meaning as cheaply made as possible with as many preservatives as possible to maximize shelf life and therefore profit. That's life! Our lives. So let's move on from there.

There are many prepackaged foods for people with celiac disease on the market. Celiac disease is an autoimmune disease where the body is harmed by gluten. Some of these foods are casein free as well, and therefor ready made for the gluten-free/casein-free diet (GF/CF). My favorite company, personally, has always been Kinnikinnick. They are a Canadian company that is 100% gluten free. They also have a special product line called Alta. All products in the Alta line are GF/CF and the company has been working hard to remove soy from those product in response to customer feedback. You can view their product lines and prices at http://www.kinnikinnick.com/ . Another good company is ENER-G. Many of their products are gluten and casein free, but you really need to check labels very well. They can be found at http://www.ener-g.com/ .

You are most likely going to start at your local heath food store. I did. If you are really lucky you might have a Whole Foods Store in your area. You should check at http://www.wholefoods.com/ to see, even if it is 30-45 minutes away it might very well be worth the trip. Whole foods has a vast selection of foods and employees and guide books to help people shop for special diets. Know as much as you can before you go into a store and beware of packaging that says "Wheat Free". We learned the hard way, long ago that Wheat free and Gluten free are two very different things, please do yourself a favor and learn from my mistake. I was fortunate that my local heath food store had a decent selection of gluten free foods that were dairy free as well. Every piece of food my son ate on his new diet came from a package. I went on the diet with him to show him that Mommy was eating it too! Mommy was seriously unhappy. Within 3 days Mommy started baking and learned a quick lesson. Homemade is better.

I had been cooking for years so everything was okay. On top of that our son was the poster child for the diet! His recovery began immediately and no one could deny the progress he was making. Sometimes, however, GF/CF isn't enough.

About week five on the diet, my son's red cheeks (seen above in photo with Dad) returned. They had gone away once we started the GF/CF diet. Now he was also getting dark circles under his eyes and his progress was waning. I ran out one morning to run errands, leaving strict instructions about what he could eat. We had run an allergy test on him but were still awaiting the results. When I got home his entire face was red and swollen. I reamed my sister and husband who had been there with him and they swore up and down that all he had had was 1 donut. I read over the ingredients over and over again. I immediately called our dietitian Vicki Kobliner http://www.holcarenutrition.com/ . I was suddenly convinced that the soy protein or the eggs were the problem. She told me to calm down and administer some benadryl. Three days later I received a call from her. My hunch was right. She told me to remove all soy and egg products right away, he was a +3 to both on the allergy blood test.

I'm not sure I ever apologized, so Jim and Aunt Sweetie, I am really sorry I yelled at you guys that morning!
If cooking without gluten and casein is difficult then cooking without gluten, casein, soy or eggs is a nightmare. It's a miracle that my son didn't starve over the next two weeks. Not one thing I attempted to bake came out edible. I threw out tray after tray of cookies, muffins and breads. This was over seven years ago. Yes, there was ready made GF food and some of it was CF but I was only able to find 2 products my son would eat that were also soy and egg free. Now his food was reliant on my creativity and capability. There's a burden every mother yearns to bear! (too much sarcasm?) Here I was crying again, with my son right by my side this time. I was weeping because even more (really expensive) cookies were going in the trash can and he was weeping because Mommy couldn't do anything right!

Week 2 on GF/CF/SF/EF went by and suddenly something just clicked. The baked goods started coming out alright. I stopped ripping my hair out, figuratively, and my son stopped crying! I figured out some of the tricks of the trade for using gelatin and fruits to replace eggs and how to adjust baking times and temperatures. It just takes time and experience to figure out most things in life.
Next Friday, learn why you need to know what's in that supplement and why sign language is so important!

Sunday, May 31, 2009

How it all began

People who know my 10 y.o. now have a very hard time picturing him nonverbal, but he was. He met all his developmental milestones, definitely on the tail end of most of them, but in a timely manner. That was until he was treated for a dog bite with I.V. antibiotics and then received his MMR 2 weeks later. He was about 15 months at the time. His language acquisition ceased to progress after that and he actually started losing language. He was our first child and the first grandchild on both sides. We had no point of reference for neurotypical progress and were ushered in and out of doctors appointments at the speed of light.
I would ask questions about his diarrhea and be told that that was just toddler's stool "a little wet, but just fine". Mind you, no professional ever looked at it or ever took a sample. I would ask about his red cheeks and be given a myriad of answers ranging from "he has a sunny disposition" to "he has your complexion" to "it is sunny/rainy/windy/hot/cold outside" all given to me in a completely dismissive tone. Until one day a doctor at a walk in clinic basically called me a 'village idiot', and said to me and my husband " This child clearly has Autism. What's wrong with you that you don't know that?" I suppose what was wrong with me was that I forgot to go to medical school after I discovered that I just didn't like biology. This doctor had a horrible bedside manner, and seemed almost giddy to be delivering this life altering news to us in a completely superior manner. His best suggestion was to get our son on a list for a group home and get myself a good psychiatrist.

The next morning I made several appointments. The Neurologist would see us in 2 months. The Audiologist could see us in 3 weeks. One Speech Pathologist could see us the next day, the best in the area could see us in 3 weeks at the soonest, I booked all the appointments. I was trying to remain calm and my husband rationalized that the doctor was not a specialist, and clearly a jackass (my word, not his). It would be stupid to just take his word for it.

A week later we had an answer. A formal evaluation from a speech pathologist gave a diagnosis of moderate autism. His recommendations were hardly any different than that of the clinic doctor. I initiated birth to three services at that point.

My mental breakdown started later that night. A deep, deep sense of despair filled me. The memory of my mother's voice filled my head, "Don't have children. It will ruin your life!" A reminder throughout my life how much she did and didn't love me, even after she departed this world. Clearly, very clearly, this was all my fault! I wasn't able to go more than twenty minutes without crying. I don't mean a couple tears down my cheek. I mean uncontrollable sobbing, chest heaving, crumpled on the floor, our lives as we knew them are over crying. Three days went by like that. Cradling my child in my arms whenever I could sobbing "I love you" whilst he desperately struggled to get out of my grasp. My poor husband had no idea what to do. I had always been so strong no matter what horrible thing was happening. I remember hearing him on the phone, quietly talking to his mother in the other room, saying,"I don't know what to do...". I knew she was saying to him that I'd cope, I always had before. Almost a whisper, "Not this time! It's different."

In hindsight, he was right. The very fact that it was a this time circumstance made all the difference. I was in my thirties. I didn't have an easy run up to my thirties. I was raised by an undiagnosed manic depressive mother and a workaholic. Adding to that my mother was chronically and eventually terminally ill and as I grew older I had greater responsibilities in taking care of myself, my sister, my mother and the household at times. My relationship with my mother had become horribly enmeshed which made relationships with others incredibly difficult and then when she died I suffered from PTSD (Post Traumatic Stress Disorder) and a chronic depression.

Now, I had a child with Autism, too. The only consolation the professionals could give me was that there was nothing that could be done about. So get over it! This was the straw that broke the proverbial camel's back.

The third day was my turnaround. At some point during the day, I was on my knees praying. Begging. Desperately beckoning to God to show me the path out of the madness. There on my knees, praying, I had a moment of clarity. I realized how ridiculous it was to believe that this is what God wanted for me, or for our family or my beloved little boy. I thought in my head "I know this isn't what you want for us, just show me what to do." Suddenly the phone was ringing. I answered it. It was Sally Brockett the chapter head of the Autism Society of Connecticut. I had left a message earlier in the week. We spoke for a good 45 minutes. It wouldn't have taken so long if I hadn't broken down in tears quite so many times. I had the feeling she dealt with that a lot. She handled it well. She couldn't give me any professional advice without seeing my child, but I was relentless in begging her to give me an idea of what I could do myself. She finally mentioned a website that might help me, http://www.gfcfdiet.com/ . I have recommended, and used this website so much over the years. That night, and that website was the turning of the tide for our family.

After my son was in bed for the night I hit the Internet. I was very sceptical when I read the information. How in the world could taking wheat and dairy out of a child's diet possibly make autism go away. This was crazy! I decided to read the testimonials. I was still very sceptical. About the 15th testimonial down was a mother, who had heard about the diet a year prior. She wrote that her biggest "regret" was that she hadn't done the diet when she first read about it. It seems the diet had been nearly miraculous with her child.

Regret. I rarely experience regret. I wish I did. Instead, I end up emotionally "beating" myself up. Over and over and over again. I still hear my mother's wicked ramblings in my head. Could I afford to add my own voice to the cacophony in my own head? Wasn't I on my knees praying for a path when the phone rang? Wasn't this a path? Wouldn't it be blasphemy to ignore a course I was steered to while literally on my knees praying? Yes. At the very least, I was obligated to give this a try. My husband, so delighted to see me not crying, gave me his blessing to go buy whatever we needed from the health food store. I did, in plenty. And so began our foray into dietary intervention.

At the time, http://www.gfcfdiet.com/ had links to Defeat Autism Now! (DAN!) doctors and nutritionists. That was how we originally found our doctor http://www.drohara.com/ Dr. Nancy O'Hara and our dietitian Vicki Kobliner M.S., R.D. http://www.holcarenutrition.com/ both first rate assets in our life journey. I've noticed lately they no longer link to DAN! practitioners but the Autism Research Institute at http://www.autism.com/ does. I can't stress enough how important, how very crucial a role both practitioners have played in bringing my son back into his true self.
Ours was a textbook success. Within 3 days our son began talking again. When we started the diet he had a vocabulary of five words, and not all of them held meaning for him. Six weeks later he had a vocabulary of over 200 words and they all held meaning.

Next week, hear about the early days. The easy mistakes. And why GF/CF just isn't enough sometimes!

Saturday, May 30, 2009

Thank you Dietary Intervention!

Welcome to the Autism Cottage blog!

My rantings are not always short. They are rarely sweet. They are however, from the perspective of a mom who has successfully been using dietary intervention for over seven years. My eldest, on the right, was recently declassified as a special education student by his school district. I attribute that to seven years of hard dietary work by his Dad and me.

From our childhood adults tell us that we are what we eat. Then they feed us Hershey bars and Kool Aid. I'm not quite sure what that says about our society, but I know it is something less than positive. We learn from the earliest possible moments that sugar is the beginning, middle and end of every snack and meal. My own mother, who professed that there were only "two" food groups- nutritious and "no"tritious, took pride in giving us Kool Aid because we weren't drinking Coca Cola like the kids down the street. In hindsight, I really don't know what she thought was wrong with water.

My kids drink a lot of water. It's good for them. It flushes toxins out of a human body. It keeps a human body hydrated and working properly. Especially important for many kids on the Autistic Spectrum, water helps the G.I. tract work, not necessarily smoothly but at least working . It's not all they drink. They have pure organic juices, but far more water than juice.

My children both have severe multiple food allergies. They both adhere to rotational diets that are extremely limited in scope. Both are the better for it. This journey, our family's journey, has not been easy. It has been wrought with peril, it has been continually challenging. It has also been equally blessed with the discovery of who our children really are once they were freed from the poisonous effects of foods they were "secretly" allergic to.

Many people don't know that there is more than one type of allergy. IGE, an immediate immune system response, is what most doctors and people consider an allergic response. Many doctors say that if a reaction doesn't occur in 20 minutes it is not an allergic reaction. Many others will say that if there are no hives and breathing isn't affected then, again, it is not an allergic response. I disagree with these point of views. Our doctor, http://www.drohara.com/ , firmly believes in the impact on health by IGG reactions. So do most chiropractors, naturopaths, dietitians and holistic healers. Our dietitian, Vicki Kobliner M.S., R.D. first ordered my son's IGG testing. http://www.holcarenutrition.com/ IGG reactions can occur up to 72 hours after a food is ingested. Seriously, think about that. Three days after you ate some strawberries you could get a migraine, a stomach ache, joint pain, even numbness. Or it could happen to your child. Your child, who may not have the expressive language to tell you what hurts. That is how things initially began with us.

This is it for my first post. I will try to post at least once a week. I will eventually try to cover all the topics that helped us. Please feel free to stop by my store at www.AutismCottage.com and view different treats that I am selling online. They are all Gluten-free and Casein-free(GF/CF). Some are Specific Carbohydrate Diet (SCD).


Michele Noble