Living with Chemical Intolerance: The Trick-or-Treat Nightmare
Halloween starts off a holiday season filled with hard-earned bags of candy, warm baked pies, cookie decorating and candy canes passed freely! It is the most wonderful time of the year... unless all of these delicious treats turn you into a monster!
Two years ago we made a frightening and enlightening discovery just after Halloween. It has since changed our lives for the better! My son, who is now six years old, has a chemical intolerance that causes severe behavior and attention problems, as well as severe head pain. He cannot tolerate eating food with any chemicals, including chemical food dye, preservatives, high fructose corn syrup, artificial sweeteners and more. Prior to early November 2017, I believed that he was sensitive, difficult and would likely ruin every holiday, vacation and celebration that we attempted. This is because those were the times that his behavior was the absolute worst. I thought it was my parenting, his personality or just our horrible luck. I never thought that what I was feeding him could be causing him to feel so angry and agitated. Gingerbread houses stacked with Skittles, cutout cookies covered in red food dye, and blue Airheads were wreaking havoc on our holidays!
Before we started figuring things out, I really believed that my beautiful, smart, funny little boy just had a dark side that we could not control. He was a challenge from the day one. He was sensitive to every formula and immunization, loud noises, crowds and any disruption to his routine. He had sinus issues, frequent ear infections, headaches and reflux. I thought the holidays and travel stressed him because of all of the parties and changes in our schedule. We stopped going places and turned down most invitations to parties for fear he would make a scene. If we took a chance on a get-together or flew home to see family, it was almost always a nightmare that didn't seem worth repeating.
Around his fourth birthday, the book Raising Your Spirited Child by Sheedy Kurcinka was recommended to me. I found it extremely helpful and comforting. She described many of Jack's sensitivities and suggested different approaches to foster better interactions. I made some major changes to my parenting style and started looking for positive ways to describe Jack's personality. I said he was extremely perceptive, persistent and sensitive, instead of stubborn, difficult and agitated. I felt more confident that I could handle the outbursts, but others in our family found it difficult to respond calmly when he was being so disrespectful.
I will be forever grateful to his extremely loving, patient and dedicated teachers from that year. As much as they loved him, they could not deny that he made things challenging at times. His report at fall conference was that he was having difficulty with peer relationships, stood outside of groups, created disruption to get negative attention, refused to follow rules and instruction at times, and sometimes these actions put others at risk because the teachers were pulled away to deal with him. They had positive things to say too, but these are the only things I heard.
That October, I noticed things getting harder for Jack and the confrontations were coming more frequently. Everything agitated him, the seams in his socks, music in the car, sunlight... He was hitting his sister for no reason. He said terrible things to family members. He screamed and threatened me if things did not go exactly as he wished. Sometimes he screamed even when they did go how he wanted. I would describe him as "No Jack" or "Yes Jack" depending on which version of him woke each morning. Many days we didn't get to see the happy, hilarious little boy that we loved so much. It was getting really hard.
Each year we celebrate Halloween with a trip to Mickey's Not So Scary Halloween party with my friend and her daughter. In 2017, we made that trip mid-October. It was the first year we let Jack join us. We got bags of candy to bring home. Jack was allowed to have at least one treat from the bag most nights. On Halloween he got a lot of his favorite candy, blue and red Airheads! His behavior leading up to Halloween was not good. It had steadily worsened since Disney, but a few days after Halloween it hit an all time low.
I got a call from his teacher. He was pretty much out of control at school. He wouldn't follow directions, go with his classmates to specials, or agree to do anything asked of him. Below is a video of part of our conversation that night.
Two things stood out to me in our conversation and from the weeks leading up to this day. He was extremely agitated and acted as if he could not control that agitation or his behavior, even though it clearly bothered him on this particular day. He also described his brain as blinking. He went on to beg me to make the blinking stop later that night. It broke my heart to see him hurting.
It was a low for him and for me. I felt helpless watching him trapped in this angry place, clearly wanting out.
After he went to bed that night, I just started Googling and using medical search engines for the words I thought described him (agitated, behavior, 4 year old, angry, anxiety). The first articles to come up were all related to food dye. Most medical articles discussed its relationship with Attention Deficit Disorder, but the news articles and blogs described kids like Jack. There were stories of children convicted of crimes and later cured of their behavior problems by dietary changes dating back to the 1990s. I could not believe that we could fix this by removing food dye, but I had to try.
I removed all foods from our home with artificial colors, flavors and preservatives. I quickly realized it was in everything. The kids medicine, mouthwash, toothpaste and much of our food with artificial colors and flavors. After two weeks of clean eating we were seeing major improvements. On Thanksgiving my daughter was sick, and I bought blue Gatorade. As crazy as it sounds now, I didn't hesitate to let Jack have some. The agitation and wild behavior came back with a vengeance. I was disappointed with myself, but even more confident that we were on to something.
Despite the looks of doubt from those around us, I stayed focused throughout the holidays. When we flew home to St. Louis for Christmas, it was the most enjoyable flight we ever experienced with Jack. My family noticed a difference, though I don't think they were quite convinced about the behavior's relationship to food dye.
In January, Jack went to the pediatrician for an ear infection. I told her what I was up to, expecting her to look at me the way others did when I shared our experience. Instead she was excited that we had started figuring this out and explained his past medical history suggested he probably had a chemical sensitivity. She recommended going chemical free and all organic. So we did. It was not easy. I promised him that I would not eat anything he could not have. That was and is ALOT of things!
In February of 2018, we shed tears celebrating Jack's victories at his parent-teacher conference. He had become a leader in the classroom with many friends. His humor entertained his peers, and he was figuring out how to use it appropriately. He could sit in circle time consistently for the first time, ever! He was thriving. Everyone was noticing. It was amazing!!!
Everyone continues to be amazing by the change in Jack's behavior and personality since removing chemicals from our lives. We try to keep chemicals in the home to a minimum, and continue to find ways to do that. I believe everyone in our home feels better. I know that I do.
We have had a few setbacks when we thought we could re-introduce a few things. Each time we have allowed Jack to have a few things from the forbidden list, we have seen behaviors return either over time or immediately.
The most recent time has been this past week. Once again we took our annual trip to Disney! Everyone was eating candy passed out at the Treat spots, and Jack would have to wait until the end of the night to collect his candy from the allergy candy center. I forgot his organic candy at the hotel, so I let him have some candy bars that were dye free but not organic or free from other chemicals. He ate a few throughout the weekend, as he seemed okay. Unfortunately, he was not well at school this past week. The behaviors we never see resurfaced. He indicated that his head was zapping him over and over. Maybe a migraine... I can't be sure. I was out of town when things got bad this week. As I sat across the table from his teacher listening to his behaviors from Monday, I could not help thinking of how lucky we are that we know something is wrong when he acts this way. I knew immediately what was happening based on what she described. Jack did too. He just doesn't know how to tell us when it is happening.
It has now been two years since I desperately removed chemicals from our pantry and refrigerator hoping it would save my little boy. I don't know where we would be if we didn't figure this out. The few times we have seen the symptoms return, I cannot believe how bad it is. I can't help but think of how damaging his anger and hostility would be to every aspect of his life. I also think of families who don't know their child has this same chemical sensitivity. Where will those kids end up?
I am writing this post tonight because I have been reminded of how important it is to share Jack's story. As time goes on, we begin to wonder if his sensitivity is as bad as we remember. Then he gets the wrong food, and we realize it is worse. People used to tell me that they had a "difficult" child and it would never get better. I wonder how many of those kids suffer from a reaction to the chemicals in their food, and what would happen if it was gone.
I hope that Jack's story reaches someone who needs to hear it. Please share it if you think others could benefit. I will try my best to make more posts on this blog to share our experiences over the past two years, as well as things we learn along this path!