Monday, September 21, 2009
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
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
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
Sunday, May 31, 2009
Saturday, May 30, 2009
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).