On December 4th 2015, my son (12, has Down Syndrome-but highly functioning), my daughter, and I were walking into our family doctor’s office to pick up a prescription. We were holding hands as there is a very busy medical center there and drivers often do not pay attention to pedestrians. Anyway, we were walking across the parking lot when suddenly my son stopped, jerked his hands away from us and began to scream "stranger!" But pointing at myself and my daughter. We tried to catch him but he kept pulling away, yelling help, and saying he didn't know us. I knew immediately by the look on his face that he was not playing a joke or kidding in any way. He truly looked afraid. I was terrified, my daughter was crying and yelling "momma, what's happening, what's wrong with him?"

I said we've got to get him inside- we yelled for the nurse and a couple of men who were there as patients, also assisted us in getting him inside. The staff knew immediately something was wrong and took us straight back to an exam room. The doctor came in and began a routine exam, drew blood, took urine, a blood pressure reading and temperature. Everything was within normal limits. He sent blood and urine off for stat testing and sent us to the hospital to a brain scan done (MRI), which was also normal. His urine came back positive for cysts and blood, but no bacteria. His liver test showed no signs of disease but appeared slightly enlarged on ultrasound. For 10 days we went through this hell of not knowing what to do or what could be wrong. Test after test. We were certain he had a stroke of some sort, or possibly a seizure. We could find no proof other than his disturbing behaviour. He could no longer walk on his own, he could no longer read or write. He had distorted vision that made him question everything he saw. He had fits of screaming as if in horrible pain. He was rocking constantly. He would stay awake 2 to 3 days at a time then sleep for only 4 hours. He couldn't hold a fork or spoon. He couldn't dress himself. He was terrified of water, and he was still having times he didn't recognize any of us. I stayed up late with my oldest daughter as she had moved in to help with her little brother until we could find out what was wrong. He had even had to go back to wearing diapers because he would pee and sadly even poop himself and not even realize what he had done.

The doctors said that they thought maybe puberty was coming for him and that some children with Downs were affected by this and regressed to 4 and 5 year old mentality. I just knew in my heart they were wrong. I believed that if it were what they said it would have happened gradually, not all at once. All I got were  “I’m sorry” and offers of strong medications to "control" him. I couldn't do that and I didn't accept that. I cried Christmas Eve and prayed with my daughters for a miracle. I put my youngest daughter to bed and my oldest daughter and I started putting things together for Christmas morning. We were wrapping the kids’ gifts and talking about Christmases past when my daughter said, "remember how their kid would only eat chicken nuggets and Mac and cheese and it was sick all the time"? She was speaking of an ex family member, but I suddenly interrupted and said "YES! I remember! It was something about food dye that Kraft was using in their mac and cheese!"

It hit me all at once, that was it, I knew in my heart immediately but how could I find out for sure. Suddenly I was looking up every food my son had eaten in the last month that was not completely made by me or put together by God (not being sarcastic). I pulled out boxes, went through food labels and if we had no more of something he had eaten , I looked it up online. He had been on a kick of 3 mini chocolate donuts and a scoop of vanilla ice cream for a snack each afternoon and ate either Cheese Nips or MovieTime buttered microwave popcorn at night for a snack. He had been getting a "smoothie" made with Coffee Mate, ice, water, banana, vanilla, and sugar at breakfast with a poached egg and 2 sausage patties. His lunch was a Kraft single, and deli ham or turkey on whole wheat, with lettuce and tomato and frozen French fries that were oven baked. Supper meal was always a roasted meat and plain steamed vegetables, cottage cheese and sometimes a home-made bread or roll. After reading ALL the labels almost EVERY FOOD ITEM HE WAS EATING contained Annatto. The French fries, the crackers, the ice cream, the coffee mate, the popcorn, the cheese slice, EVERY meal except our evening meal contained Annatto. I knew I had been given the answer I needed. I started searching annatto online and kept getting RECIPES to prepare with it!!! I needed someone who knew it was bad for you too, someone who knew some people could not metabolize this stuff! I finally came across your site and read what you had to say. I had the verification I needed and now was gonna figure out how to flush that out of his body.

I immediately began using food grade diatomaceous earth on him by mixing it in unflavored yogurt. I gave him 15 drops of ConcenTrace Trace minerals in fresh squeezed orange juice that morning. I started giving him purified water and squeezing lemon in it or making him purified water with fruit infusion in it. Black tea with raw sugar or wild honey and the day after Christmas I got on Amazon and ordered bee pollen, green propolis, and more ConcenTrace minerals, plus concentrate vitamin paks.

I threw out every single annatto item I could find and flushed his system with all the good stuff I could get in him. It took about 7 days to hear him laugh again and within ten days he could walk straight. Three weeks before he could get his sense of comedic timing back and tell jokes like his old self and about a month before his vision cleared. I thank God so much for answering that prayer. That is truly all I could ever want. To know my son is gonna be ok. We had a setback lately however which is how I found your site again as I has forgotten to bookmark it. Anyway, he's been getting that look in his eyes again, like he's not sure who he's talking to. He's also has a couple of toilet accidents and not wanting to come out of his room because he's seeing shadows after him? Anyway, yesterday I found that his "all natural" real fruit juice gummy multivitamins contain none other than ANNATTO! These were recommended by our pharmacist. My (our) doctor, has listed Annatto on my sons chart as an allergen under "food and medications" now. He said he had it listed under food only, as he had no idea it was used in medications. The pharmacist said she had NEVER heard of it so she had no way of knowing it was used in vitamins (it was listed under ingredients on the bottle) anyway she wouldn’t refund the $35.00 for a product he should never have had. She swears her "autistic" son has taken them for years. I suggested that she take him off them and any other things with annatto in them, just to be sure he has autism at all. She told me there are always going to be "websites and parents out there looking for an excuse for their child's illness" and that sometimes we just have to accept what we are given. I just looked at her and said how happy I was for such "websites and parents" or I would have never had verification that I was on the right track with my son.

My son has not yet learned to read fully again and still can't write. But, I believe in time he will be completely himself. I am just shocked at how much a simple waxy seeded plant took from him and how hard we've had to fight to get him back from its clutches. I have seen some horrible things as a nurse, but I have to say I think the damage from Annatto his more harmful than any drug addiction I've ever seen and certainly needs much more attention from parents and the medical community. I don't know how it is in AU and European countries or in the Asian countries. I am sure that in the United States that this "natural," food additive is in far too many food items. Almost everything from cookies to casseroles contain this "poison" and the U.S. seems to have no plans to cut back on it. It is dangerous. Period. Sadly, too many people here are afraid they will have to cut out a food that their family just loves or their kids can't get by without its taste or convenience, so they would rather give them a pill to counteract it. Another sad reality is some parents find they can get a social security disability check for their children who have learning disabilities of things like attention deficit disorder, and they are not gonna give up that check for a cure (this is not ALL parents, but I have met MANY who call it their "fun money" for "having to take care" of such a child).

Thank you for letting me tell our story. I pray that its better every day and I will be far more diligent in my label checking, so I can be sure Annatto is out of our lives FOR GOOD ! I hope someone out there who even suspects that they or their child could be affected by a food additive that they try an elimination diet just to be sure. Just because everyone isn't bothered by it doesn't mean you or a loved one isn't. Doctors don't always have an answer. Trust me, our doctor is a great doctor and a good friend and he never even GUESSED something like this was affecting my son. I've had 5 children and been a nurse for 30 years and neither did I. If I hadn't had my memory jostled into remembering Kraft taking the dye out of their mac and cheese and all the complaints about it, I would never have thought to look it up. I would have never found your site and my son likely would be in a very bad situation right now and we would still be hopping from doctor to doctor in search of an answer. You will never know,....never know, how much stress we were under. How much fear I had that my son had some horrible disease creeping up on him and stealing away his life. That any moment he could possibly just stop eating, or breathing. I didn't know and no doctor could tell me otherwise. Now even though I haven't read of anyone's case as extreme as my son. What if they don't know. I think of children who have died from unknown causes and young people in institutions because their families couldn't care for them anymore because one day they started with an unknown illness they never could overcome. That could have been my son. He just turned 13. If I hadn't found out, how long could I have continued to change diapers and spoon feed him? Would he keep growing bigger?  Would he have gotten worse? He was already getting worse by the day. Would it have leveled off or continued? These thoughts are there now but not because I fear a return but because I fear there are others out there who are in the same position we were.

I pray not, but if there is someone out there, just try and see if it is something they have always liked or something that they started not long before. Flavored pudding, Ensure, yogurts, or any plain old everyday foods that everyone else eats. And remember, just because you've never had an allergy to a food or a reaction to an additive before does not mean you aren't now. Allergies can develop at ANY time.

I'm just thankful that a website like yours is out there to help point someone in the right direction. I appreciate it very much and hope you keep up the good work in letting people know what is out there and what can be done about it - Lynn from USA

(Sue's comment: Thanks to Lynn for sharing this amazing story. A few warnings: If you think you are affected by annatto 160b, you do not need to take any special products to detox. Simply stop consuming annatto - and expect some withdrawal symptoms within two weeks. For behavioural reactions, normally these present as a day or two of increased symptoms e.g. on days 4 and 5. Withdrawal symptoms can include agitation or tearfulness, followed by increasing improvements. Most people who realise they react to one food additive are likely to be affected by some other food additives - and possibly some "healthy" natural foods - as well).

Introduction to food intolerance

Reader reports of reactions to annatto in adults and children, from headaches and stomach aches to asthma and children's behaviour

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