I never thought Andrew had any real diet problems except milk. We removed milk from his diet a little after diagnosis because he always seemed to be a little more congested when he drank it. We had not read anything yet about milk allergies and autism. There was improvement when we removed the milk. The first book that I read was given to me by another mom whose autistic son's behavior greatly improved on the diet. Any time something not on the diet managed to get into his diet, he really acted out and had other problems such as disturbed sleep, loose stools, and wild behavior or stimming. The book was called Unraveling the Mystery of Autism & Pervasive Developmental Disorder: A Mother's Story of Research & Recovery by Karyn Seroussi. I had put off the diet because I was still working and I knew it would be a major overhaul in our life. After reading this book I knew that I should not wait a single second. I could be hurting Andrew every time I gave him one of those foods (which were his favorite). Thankfully I had removed the milk from the beginning and tried to avoid dairy products for him. I encourage you to read this book before deciding not to try the diet. The diet is an all or nothing approach for it to work. A lot of people are finding that soy can do almost as much harm as milk.
I would suggest that your child be tested for food sensitivities, yeast overgrowth, bacteria, viruses and parasite. I would also suggest that families look into "the diet" but especially remove milk. I feel that all families should try digestive enzymes whether or not they are doing a special diet. Before deciding not to try digestive enzymes, visit the Enzymes and Autism List (a Yahoo e-group). They have a great FAQ's section that I printed out before trying the enzymes. It really helped to be prepared and make a success out of it. If you join the list, you can post your problems or questions about starting enzymes and others can help you. Call 1-888-KIRKMAN to receive a free 176 page Guide to Intestional Health in Autism. This gives you a lot of information about how various supplements can help your child. Whether or not you purchase your vitamins from them, this free book is a great reference. We use Kirkmans because Andrew is soooooo sensitive to things. Their hypoallergenic line is the only thing he has been able to handle at all. He would even show some regression with a Flintstone Vitamin.
Update Summer 2004: We have changed a lot since 2003. We saw Dr. Jaqueline McCandless in 2003 and she changed a lot of things. We did TTFD for a while along with GSH and MC B12 shots. We take Kirkman's Spectrum Complete, Klaire's Mycelized A & Therbiotic Complete, Tyler Eskimo Oil, Kirkman's Cod Liver Oil, B Complex, extra mag and calcium. We also see an awesome new DAN doctor-Melissa Kempf, MD. She is awesome.
Update 8-2001: We did try the diet for over a month and Andrew had problems with it; his behavior became out of control and he was stimming all of the time. We are going to have him tested for food allergies to see if there may have been something that we added that was causing this. After we find out the results we will try the diet again. We are also testing for yeast to see if maybe that was related. The bad reaction could have been from withdrawals (opiod effect) or an addition of a food that he has a hypersensitivity to. We will let you know what we find in the blood, urine and stools tests.
Update 9-10-01: We have the results to Andrew's MRI LEAP food sensitivity test. His main food reactions are: Milk, Soy, Yeast, Rice, Banana, Cherry, Pork, and Beef. Out of the 150 foods and chemicals tested, he had a reaction to 41. Wheat/Gluten was not one of them, in fact it was one of the best foods for him to eat. My doc's theory of why he did so poorly on the GF/CF diet was because we eliminated any gluten/wheat (which is not a problem for him) and substituted rice and soy products (which he is reactive to). No wonder my poor little guy was so bad off! I was all of a sudden giving him rice and soy products and his body was sent into a highly reactive state. We are now on an elimination diet and hoping to add in foods that he was tested non-reactive to, and then go from there, one week at a time. He does have a yeast problem and we will be starting meds for that in 30 days. They doctor wanted to give him 30 days on the new diet before we added anything else. I highly recommend everyone doing one treatment at a time so that you can better determine what is truly helping. To help judge how much a treatment is helping go to: http://www.autism.com/atec/ and answer the questions. You will get a score to compare how things are going. You may hear other parents talking about an ATEC improvement score for a particular treatment and this is where you can score things and help Dr. Rimland track treatments. Under the assessment period I would suggest you say baseline on your treatment information.
I will keep you posted on how things are going. By the way, soy is in most everything that is store bought or fast-food. It's forms include vegetable oil and partially hydrogenated soybean oil. I am having to make most everything from scratch to avoid the milk, soy, and yeast, not to mention the other 38 things he cannot have.
Update January 2002-January 2003: Andrew is still on his elimination diet and things are better. We have seen a little improvement that started after initiation and we are much better at implementing it. We have also added digestive enzymes (started December 2001-present) and have been doing these deligently with every meal and snack for over a year. We started with Kirkman's Complete with DPP-IV and then switched to Houston's enzymes-Peptizyde and HN-Zyme Prime. So far we have been pleased with the results that the enzymes have given us. He is a little more focused and seems to be happier and yes, he has more energy. One of the reasons we started the enzymes is because we heard about the "happy child" effect that they seem to give a lot of children. A lot of children are improving with adding these enzymes before each meal, snack or diet infraction. Everyone should take a look at the Enzymes-And-Autism Yahoo group at http://groups.yahoo.com/group/enzymesandautism/ . They have an amazing amount of information about enzymes and children recovering. We also finally found a vitamin and mineral supplement that he can handle. All of the other supplements we tried would cause regressive behavior or actually make him sick. The new vitamin we are using is Kirkman's Everyday Hypoallergenic Supplement. It suggests 2 capsules a day but we see the best results with only one a day. For all of these things, we open up the capsules and hide the contents in a special gutted out spice drop that he can have. We have tried pudding, applesauce, ice cream, putting it in his juice, etc... and nothing else worked. He has a radar system that the US Military would be interested in studying, ha, ha.
is also sensitive to phenols in some
foods. We try to avoid foods that are high in phenols. The Feingold list
of highly phenolic/high salicylate foods are: Avoid anything -- food, toiletries,
cleaning supplies, art supplies -- that has any of the following ingredients:
Synthetic/artificial colors and flavors [for example, FD&C colors,
vanillin], BHA, BHT, TBHQ, [all the preceding are made from or related to
petroleum], Natural Flavoring (may contain salicylate), Natural Coloring (may
contain salicylate), Aspirin and products containing aspirin or salicylic acid,
Salicylates, Almonds, Apples, Apricots, Berries (all), Cherries, Chili powder,
Cider & cider vinegar (apples), Cloves, Coffee, Cucumbers & pickles,
Currants, Grapes & raisins, Nectarines, Oranges, Paprika, Peaches, Peppers
(bell & chili), Plums, Prunes, Tangerines, Tea, Tomatoes, Wine & wine
vinegar (grapes), Oil of wintergreen (methyl salicylate). Other items to
consider are perfumes and fragrances, nitrites and nitrates, monosodium
glutamate [MSG], Hydrolized Vegetable Protein [may contain MSG], sulfites/sulfiting
agents, benzoates, and corn syrup [made from hydrogen sulfide + corn starch and
many other added chemicals].
Mega doses of Vitamin B6 and/or P5P can increase the PST problem of some children. We use epsom salt baths to help with PST problems. We add 2 cups of epsom salts to his bath water every 1-2 days. This can really dry out your skin so make sure to keep their skin moisturized. We are trying to use just mineral oil (non-fragranced baby oil) for his skin since so many lotions have a lot of things added. We noticed that the Carmex that we were using on his lips actually contain phenols. We also purchased the Magnesium Sulfate Cream from Kirkmans. If you are concerned with prices, here are two options that I have been told are okay:
1. Buy your Epsom Salts in bulk at a Feed Store. They come in 50lb bags for around $20's instead of the expensive prices at your local drug or grocery store.-A hint from a mom on the Enzyme List.
2. Use Epsom Salts in smaller containers like just soaking their feet or mixing it in a spray bottle and "misting" them throughout the day.
Make your own "Epsom Salt" cream. Below is an example of a
4. Check out this URL for a take on Epsom Salt baths: http://www.racingsmarter.com/epsom_salts.htm
We are also looking into the other tests mentioned in the DAN Protocol including chelation for heavy metals and mercury, primarily Andy Cutler's protocol (a very well-known chemist who does not agree with the large doses the DAN recommends and he also believes in the 4 hour protocol for DMSA, 3 hour for ALA, and 8 hour for DMPS). I would highly suggest reading the FILES at the Autism-Mercury Yahoo Group before making any decisions on chelation or heavy metal toxicity.
Check out the new information out of the Pfeiffer Treatment Center about Metallothionein (MT) and Autism.
THE DIET LINKS
Great Plains Laboratory
Roben's Allergy Foods
Gluten Free Pantry
Seroussi's article from Parent's Magazine
Frequently Asked Questions About Dietary Intervention
List (Fighting Back with dietary Intervention)
& Diet: Eight Years of Experience
Autism Research Group
Autism Treatment Center
Foods (makes DariFree™ potato-based milk substitute)
Baked Creations by Kristin
Labs (SerenAid, etc.)
The Modern Herbalist
The Vitamin Lady
Great Smokies Diagnostic
DDI - (800)
323-2784 (Monday-Friday, 8 AM to 5 PM, central time)
LEAP Blood Test
for Food Sensitivities
MADORE FAMILY'S AUTISM RESOURCE SITE: