The Organic Acid Test, Yeast, and the end of the Feingold Diet. Tuesday, Mar 17 2009

Yeast!

Well, we got the results of our Organic Acid Test back a couple weeks ago, and have made some decisions based on the results. For those folks who don’t know, the Organic Acid Test is a urine test performed by a lab. We used Great Plains Labaratory, and they are great. The test gives you a “metabolic ’snapshot’ based on those products the body discarded during urination” according to their website. This snapshot gave us our first inkling that Feingold was not the right diet for us.

A few words about Feingold. I have been resistant to the stricter diets because I thought there was no way we could handle the additional stress and preparation. I was totally wrong. Once we decided to do it, it became possible. I won’t say it was easy, but it is manageable. That being said, Feingold is a good diet and works for many kids. We did see improvement, and I attribute a great deal of that to getting the crap out of Raymond’s diet. Without artificial preservatives and dyes, Raymond’s metabolism started getting back on track. However, it did not solve as many issues as we had hoped, so we were still searching.

So, we sent Raymond’s urine to Great Plains, and they sent us back a comprehensive report. Oh, and our insurance company did pay a good portion of this, so it was not as expensive as some tests. At any rate, the report shows that Raymond has increased 3-oxoglutaric acid, which indicates a possible yeast overgrowth. We knew he had yeast, but didn’t realize it was quite so high. Also, a number of the other test results were consistent with leaky gut and issues with oxalates.

So what are oxalates? Naturally occurring substances in foods, similar to salicylates. Vegetables produce them naturally, and they are present in a large number of foods. Some of the indicators that clued us in were high levels of oxalic acid and low ascorbic acid. Low ascorbic acid means you should supplement with vitamin C, right?

Wrong. The way Raymond’s gut is functioning, vitamin C supplements would aggravate the problem. He can’t absorb them, and the oxalate issue will be aggravated by supplementing with C. Other factors in his metabolism show low levels of pantothenic acid, or B-6, and elevated kynurenic acid, which requires B-6 for metabolism. However, we had him tested for B vitamins several months ago and found out he cannot metabolize them properly, so supplementation is not going to fix the problem.

Quite the impasse. Kelly and I have spent the last couple weeks wrangling with it and doing more research. Our pediatrician has been unavailable due to some unfortunate family matters, which has left us to our own devices. We watched his behavior get more “yeasty” and decided to do a yeast detoxification ourselves. We typically treat for yeast with homeopathics, but they were working too well. By that I mean that yeast was pouring out of Raymond, so badly that his skin was cracking open. That is just not sanitary. We almost kept him home from school some days because the tops of his hands were red and cracked open. We put aside the homeopathics and went for a more direct method of yeast killing.

Our choices were limited, especially since Raymond cannot tolerate any prescription antifungals, so we decided to use oil of oregano. Oil of oregano is a powerful antifungal and high in antioxidants. We have used it before with major success but also negative side effects, which I have determined to be my fault. The last time we used oregano oil, we started off with 1 drop per day. However, as it started killing off yeast, I kept increasing the dose. It got up to 2 drops twice a day. We did kill off a ton of yeast, and Raymond even passed what we believe to be a nest of parasites. It was a large clump of what looked like eggs, and it totally freaked his grandmother out. However, the down side is that Raymond began vomiting uncontrollably, and his vomit smelled like sour beer. It was the nastiest, yeastiest smell I have ever encountered. So, we stopped the oil and his behavior and attention improved dramatically. We know it works, but we have to take it slow.

First off, we made sure he was getting his probiotic regularly. That is key when killing yeast. If you don’t replace the yeast with good gut bacteria it will come right back. We gave the increased probiotic a few days to start working, and then we started his Vege Greens. Once you kill yeast, the body has to bind it with something to pass it. We used activated charcoal in the past, but upon further research we discovered we could use concentrated green veggies to bind and remove the die off. Naturally we went back to our old pal Vege Greens, as it has a ton of other benefits. In fact, I’ve posted the label below so you can see what’s in there.

Vege Greens Label

Finally, after a few days of reintroducing Vege Greens and checking for changes, we added the oregano oil. Just one drop every other day. It is pretty strong stuff, so I put it on half a bagel and then cover it with smart balance spread, and Raymond eats it no problem. Then, 45-60 minutes later I give him his Vege Greens. We have been on it for 5 days now, and die off started one day after the first dose. However, it is much gentler this time. We are not getting the crazy runny stools or vomiting, so I think we are handling it well. We may up it to one drop once a day after a couple weeks if he tolerates this, but only if we have no other die off issues.

Also, we are looking into the low oxalate diet, but I’ll have to write about that some other time. We think that might address a wide spectrum of issues, so we are definitely going to try it. We want to be prepared, however, like we were with Feingold, so we are still reading and researching. Hopefully by the weekend we will be ready to roll with it.

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The Feingold Diet Phase 1: Week 2 Monday, Jan 26 2009

Raymond lost in thought

Okay, this diet is amazing. We are getting some cognitive and creative things we have never seen before. However, there is still a down side. We are still having some behavior issues. However, after talking to his pediatrician last week, we feel that those may be due to the fact that these chemicals are passing out of his body, and once the six weeks of Phase 1 is over it should improve.
In fact, it has improved somewhat. We made one big discovery this week. Monday was tough, as he was active, all over the place, crying and out of sorts. Tuesday at about noon I knew something was going on. I called another mom we know who has been on the diet for years and started talking about what we were giving him, what his diet was like,etc. She had some great suggestions.
We had been giving Raymond a cup of lemonade in the morning with all his supplements, and then sending him off to school. This mom suggested that maybe he was getting too much sugar without the stabilizing influence of a protein. She said her kids were great as long as she paired her sugars and carbs with proteins. That made a lot of sense to me, so we tried it.
Wednesday we skipped the lemonade and sent a bagel with egg in to school for his breakfast. He had a turkey sandwich for lunch, and when he came home he was calmer, more possessed and more well behaved all the way around! Success!
We have since determined it is not just sugar, but he has a specific reaction to lemonade. I don’t know what it is, but we switched his drink to pineapple juice and he tolerates it better. He still needs protein, but its nothing like the lemonade.
We also had to take him off some of his supplements. This diet is more work intensive than anything I’ve done yet, but the rewards are outstanding. Raymond is pooping in the potty, which we had despaired of ever happening. He also has made some major changes in his art.
Raymond loves to draw, paint, color or do anything involving art. He normally draws trains. Although they are very detailed, he is totally limited in his subject matter unless we insist he draw something else. That is, until now. He spontaneously drew the front of trains, with faces, instead of the sides. He also drew mountains, animals, and people on his own. We were ecstatic!
Not only that, but he is also expressing a new interest in math. Raymond has always loved numbers, but now he is trying to add and subtract. We are overjoyed that he is finally growing this way, and look forward to more.
Oh, and I made one more discovery. Instead of sweetener in my pancake batter, I started using butternut squash puree. It is more fibrous and gives a greater nutritional value to the pancakes. Plus, Raymond can’t tell its in there and he loves them! Thanks to Jessica Seinfeld and her book Deceptively Delicious for the idea.

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The Feingold Diet Phase 1: The first week Monday, Jan 19 2009

Okay, since I haven’t posted much over the holidays I will try to make up for lost time this week.  First off, we started back on vision therapy with Dr. Kaplan, and visited his office in lovely Tarrytown NY last weekend. We had a great visit, and our new vision exercises are much easier than the last set.

Second, we started the Feingold diet.  For those of you who are not familiar, the Feingold diet was designed by Doctor Feingold, an allergist at San Francisco’s Kaiser Permanente Medical Center.  He began working with patients who he thought had aspirin sensitivities, and discovered that many of these patients also had allergies to various food dyes and additives.  Next, he documented changes in behavior due to the allergic reactions.

The Feingold diet eliminates ALL food dyes, food additives, artificial colors, artificial preservatives and artificial sweeteners. Additionally, it removes foods that contain salicylate, which is a substance similar to aspirin. Oddly enough, many foods contain salicylate, which came as a huge surprise to me.  Apparently salicylate is a natural pesticide that plants produce to protect themselves from insects.

Anyway, we got started a few weeks back when we described some behavior to our pediatrician.  Raymond and I had just come home one day, and Raymond promply went and sat down beside one of our friends.  Then, after a few times of his mother saying “Raymond” he looked up and said “Mommy!”  Then he quickly ran over to his mother and sat beside her.  We believed that, since our friend was sitting in his mother’s usual seat, he assumed she was his mom and didn’t do any visual “follow up.”  We have seen this sort of tuned out behavior a number of times with Raymond, and his pediatrician commented that it was typical for kids with ADD/ADHD.  That led her to begin questioning his diet more, and we settled on Feingold as it has been shown to be effective in treating ADD/ADHD.

Next step was to join the Feingold Association. The link is http://www.feingold.org and costs $82.50 to join.  Believe me, that is money well spent.  These folks investigate food more thoroughly than any other group I’ve ever encountered.  So we joined and our books arrived a few days later.  We received the general guidelines to the diet and a foodlist, as well as a restaurant guide.  The restaurant guide was pretty thin, as most restaurants use stuff that is off the diet.

The next step was to take an entire sunday and create a menu, shop, clean out the cupboards and prepare foods.  Let me tell you, that is too much for one day.  We only got a 5 day menu done, but it did help us become really familiar with what Raymond could and could not eat. We made a shopping list, and hit the store.  Then, since we don’t have any local breads that fit the bill, we spent the rest of the day baking bread and cleaning out the pantry. We gave away a huge box of food, and threw away about half that.  We were careful to keep things that are allowed on stage 2, but since the pantry had mostly processed foods that didn’t apply very often.

After that, we started the school week!  We decided to follow the diet as well, thus reducing the possibility of having something in the house that was off the list. One of the first things we noticed monday was how calm Raymond was!  According to the literature, some changes may be immediate, some may occur over several days and some may several weeks.  Apparently many of these chemicals accumulate in the body, and it takes time for the body to shed them.  At any rate, Raymond was wonderful on the first day until…

We went to our pediatrician’s office to pick up some supplements.  We set Raymond up with some magic markers to color while we talked to her.  As soon as he got some marker on his skin he became uncontrollable.  We racked our brains until we put 2 and 2 together.  The markers are full of artificial coloring!  We got Raymond home and calmed down, and then realized we had a bigger job ahead of us.

Many of these additives are also present in cleaning products, soaps and other household items.  We have a fairly toxin free home, as we have weeded out all of the paraben and sulfate products in addition to removing all chemical cleaners, candles and soaps.  However, there were still some additives in his soap, shampoo and other things that he couldn’t tolerate.  We lived with them for the week, but I’m happy to say that after a trip to Whole Foods (and a ridiculous amount of money) we finally have a clean environment for the diet.

Tuesday was rough.  It almost seemed like Raymond was going through some withdrawal.  Wednesday was better, although he was still a little off.  Thursday was wonderful.  Not only did we have school, but he also had speech and OT.  He did great in speech, but would not cooperate with his OT until she found some trains. Still, the fact that he was able to do both therapies in one day in addition to the work we did at home says a lot about his ability to concentrate and sustain activity.

Friday was a nightmare, which didn’t make sense to me.  He woke up in a good mood, and was great all the way to school. When I picked him up, his teacher and para both told me that he had a rough day, which didn’t jive with what I experienced that morning.  It bothered me so much that I called back about an hour after we got home.  Raymond was wired and on edge.  I’m sure plenty of parents have had days like that, where your kid is into everything, climbing the furniture and doing everything he knows not to do.  Well triple that and you have our friday!

My first thought was that he had a dietary challenge. So I called the school and spoke with his para, who said he definitely didn’t have any food off the list.  Then I thought about the markers, and asked about that.  Then she said that he did get some marker on his hand, but it wasn’t very much.  I knew it didn’t take much, but somehow felt there had to be more to it.  After all, Raymond had marker on his hand earlier in the week and it hadn’t been this bad.

Then the teacher called back and we went through the day step by step.  Apparently one of the kids had an accident in the bathroom, and they had to call the custodial staff.  Then, after they left, the teacher sprayed lysol all over the bathroom.  That clicked with my wife, as she had spoken with another mom who has a very sensitive child, and lysol has a number of chemicals that affect her kid.  Finally we knew!  We explained to the teacher what happened, and why he was so difficult, which was a relief.

Saturday and Sunday were okay, but we did eat out at a restaurant for the first time since starting the diet.  Let me tell you, that is tough.  One of the stage one no-nos is tomatos, which are tough to avoid in an italian restaurant!  Still we got by, and Raymond had a good weekend. We’ll see how this week goes.

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