Is it an allergy even?

The topic of my child’s allergy is the only one I know of that can bring a good conversation between myself and friends, family or coworkers to a screeching halt. The silence is immediate, the eye contact faulters, the person nods but stops listening, unsure of the route they’ll take to change the subject. It’s the closest I’ve come to ever feeling like a conspiracy theorist, and it makes me wonder if conspiracy theorists lack the ability to read other peoples emotions, or if they simply endure these encounters, the way I now have to. It seems we don’t know how to handle information that goes against our deeply engrained truths about the world we live in. It’s not that they don’t believe me, It’s something else I can’t figure out.

My daughters’ allergy to food dye came on swiftly after some Dollarama candy she’d picked out herself with a gift card from her 5^th birthday. It was a rare treat, blue powdered sugar in a small plastic baby bottle. I scoffed when she chose it, but it was her birthday treat, how could I get in the way of that? She’d had some variation of this candy at other times in her short life, at birthday parties, along with birthday cake frosting, doritos, skittles, and various other junk foods. But I can tell you with confidence, it was most definitely not something that sat in our cupboards regularly.

It started so simply, the last week of summer. We were getting in the car and she refused to put her seatbelt on, her mouth still blue from the candy. It escalated quickly, her whole body revolting against this simple act we’d done countless times before. Every time we’d click the seatbelt in, she’d reach over and unclick it, screaming in our face. We were at my friends’ house, slightly embarrassed and unable to leave his driveway. He didn’t have kids so he assumed this was all part of the gig. We pretended it sort of was, but when we looked in eachothers’ eyes, there was a bit of fear. Eventually we backed out of the driveway, Marty in the backseat essentially holding the seatbelt in place while her whole body spasmed in tantrum. We drove 3 blocks before pulling into a park, completely overwhelmed and unsure how to proceed as the screaming was too distracting to drive. We opened her door and her turbulence flew into the parking lot where she kicked and hit me with every ounce of her being. Her poor 3 year old brother had started to cry from his own fear. We closed the car door, Marty staying with him, and me joining her in the parking lot. After awhile we switched.

A car drove by slowly and then stopped as though they were checking on her welfare, making sure she wasn’t in an unsafe situation and that we were in fact her parents. I wasn’t sure we were in an unsafe situation. Eventually the car drove off. She was screaming “Mom! Mom! Mom! No! No!” over and over again all the while kicking and punching me with everything she had. This went on for 40 minutes before she collapsed in a heap into her booster seat where she stayed in a daze for the next 2 hours, the life drained out of her.

After this experience, we were all different, not the same people we were that morning when we woke up. Something tiny had broken in our family, and in our daughter, and it was going to get a lot worse before it would get better.

This continued to happened every couple of days for the next 2 months. Each time it was more disturbing, more emotionally draining than the last. I found myself googling “abusive daughter” and “aggressive children”, finding only articles about CBT therapy, big emotions and ADHD medication. I called my former teacher sister, crying, begging for her advice. She suggested I take a course on holds you can put children in so they don’t hurt themselves or others. This made me cry more.

On December 3^rd I brought my daughter to a Christmas market with her Grandma who had seen a glimpses of these outbursts but usually left when they started to come on. But this time it happened while we were at Grandma’s house. I barricaded my daughter in the playroom while she reeled on the floor, told Grandma it will be about 40 minutes, not to worry, then as I closed the door I noticed the half-eaten candy cane on the counter that the lady at the market had given her. That’s it, that’s the cause of this, I know it . My head was spinning. I sat on the floor, my arms acting as a cushion from the impact of a 44 lb girls arms and legs flailing . I scrolled through the last few months in my head, the birthday cake, the starburst, the chocolate milk, the movie theatre popcorn. I connected the rainbow-coloured dots until I was left with the first incident, burnt in my brain, and that god-awful blue powder in a baby bottle. I cried again, but this time out of relief. There’s a solution, there’s nothing wrong with our daughter, there’s something wrong with her world.

My most heartbreaking discovery since learning of her allergy was that it was in her toothpaste. We fed it to her, unknowingly twice a day, everyday. The news stories about artificial food dye don’t ever mention that it’s in children’s toothpaste and medicine. They cover stories on the potential health problems associated with food dye, but they only ever mention the junk food. Why is that?

It's been 15 months, and my daughter has only had food dye (by accident) 3 times since that day. Each time, she reacts the same way, her whole body in spasms, craving violence, screaming “No Mom No!” But this time it was different because I was different. I was forgiving, telling her it’s okay, you’ve just had dye, it will be over soon, it’s not your fault. I made notes of what she’d eaten and asked her more questions about how she feels once it’s all over. She shared with me that she feels tingly all over and sad. I learned that this feeling doesn’t go away in 30 minutes, she’s off-kilter emotionally for about 72 hours after eating dye.

This isn’t the only change in her since cutting the dye. There was a freneticness to her movement before this discovery that came and went, that doesn’t really exist anymore. She gets excited, like all kids, but it’s  leveled out.
 
We’ve spent a lot of time ruminating on her early years, and we remembered there was a “fruit loop incident” when she was 3. Even further buried in my memory was the time she had a fever at 2 years old. We fed her Tylenol and her whole body vibrated, her eyes wide, unable to sleep for 3 hours.  I’d completely forgotten that I’d written the company and they replied to me suggesting we buy dye-free, which we did forever after that. How could my brain not piece this together sooner? How could dye seem and feel so innocuous to me even after these two incidents with food dye? Why had I never questioned their effect on us?

From a very young age we are told some version of the reality we seem to carry as adults. We all know how sugar affects us, how too many calories make us gain weight, the role fat plays in our diet, but I neither learned nor carried any sort of feelings about the calorie-free, sugar-free, colourful dye made of petroleum by-products.

Since scientific studies involving mice and small groups of children being fed dye for 3 months never amounted to any conclusive evidence either way, Health Canada cannot decide whether this substance is harmful or not. But seeing as a major dye-manufacturer had the definition for the word harmless changed in the American court of law in 1961, I suspect the companies are aware of the harm they cause some children. Some was the key word in many studies on the subject, as some kids remained unaffected and some were affected; 8% to be exact. Health Canada is so confident in this decision, that they’ve allowed it artificial colour in all medicine and all dental products, a fact that frightens me even more than the food. If my daughters ever hospitalized with an infection, the only available antibiotic is a deep pink amoxicillin. Not to mention every capsule or vitamin is coated in red or yellow or made whiter by titanium dioxide. So Health Canada has decided that 8 % of children can endure a little neurobehavioural outcomes every once in awhile, so the other 92% can enjoy bright, shiny, candy and while I see the logic, I cannot forgive them for allowing it in our medicine. 

For the most part I've stopped bringing the topic of food dye up at outings with other parents, and I try to ignore the licorice at the office, because the look I get when I sound like a conspiracy theorist makes me feel shame, and what we experienced is not shameful. The shame should be directed at the individuals responsible, everybody in the room at those FDA and Health Canada meetings, where they took a vote and declared those 8 % of children aren't worth protecting.