I sent our case file to CSPI, who will forward it to the FDA. He ate his crayons on Friday, was great on Friday night, then boom! All week he was pooping crayons and finally on Friday again the last of it was out. Today, Saturday, we are retraining him how to speak and eat, he still uncontrollably hops around when he walks, and simply can't focus. The impulsivity, repetition, obsessions, and fits are down to mild. Tomorrow will be better after a good night's sleep.
dye write up to cspinet:
Describe problem caused by food dyes:
"Patience" and "in a minute" are the words of the day when he is going through a dye episode; I say these words at least once a minute. Where do I begin... Dye lasts in in his system for 3-4 days, maybe 7 if it is red #40. All colors effect him, and even the smallest amount will result in symptoms. When he first ingests it it takes about an hour for him to first get the 1,000 yard stare. When he eats dye, he first gets very upbeat and is having the time of his life. Everything is absolutely great for him and it is as though he is high. He is funny, and when he is around people it is a party. Then the 1,000 yard stare and deep dark circles, and puffy cheeks set in. He zones like this, looks confused, and starts mimicking children, and his facial expression becomes mask-like because he doesn't know what to do. He figits uncontrollably, constantly pulling on clothes, hair, shoes, picking on fingernails and nailbeds to where he makes hangnails, rubs eyes, stuffy nose sniffles, eyes loose focus. Next the distractability sets in. We took him to Walgreens after his grandparents babysat and gave him pickles and yogurt (red #40, yellow #6, Blue something) and we watched him go. He was having a ball, but it was like watching a drunk person. He was touching everything there at a super intense pace, picking toys up off the shelves, asking "what is this?" then on to the next thing before we could even see it. Flashing lights, sounds, everything caught his attention. He was jumping around, fidgiting the whole time, and slurring his words. I got him a bottle of dye free juice to help wash it out and gave him some benedryl (that is why we were there). After the high wears off he stares some more, and sits in his carseat (he never gets dye at home so I guess that is why the next stage is in the carseat) with wide eyes intensly alert, picking on his nails or clutching onto a toy. When he is out where there is enough stimulation, the first day I am usually not really sure quite yet if it is dye or or if he is just overstimulated. I know and sit there and wait until the next morning or that night to hear the sniffles all night, teeth grinding, and sometimes there is an uncontrollable night terror, or mabye a simple night cry. But it is in the morning that I know - he wakes up full throttle wailing about something that has to be a certain way and is not. "MY COVERS ARE NOT ON!!!!!" or "DAD YOU HAVE TO COME WAKE ME UP!!!!" and so it begins. This crying will go on for a half hour no matter what we try to do we can't even touch him. The days move on like this, and by day 3 or 4 it is in his stool and instantly he is back to our regular Mason. Physically dye constipates him terribly, and gives him hives on his upper arms, he has teeth grinding, and congestion, swells his tongue so he can't talk without a lisp (he told me this recently). I have a list of all of the symptoms that I have compiled while he was on dye most recently (this week). His behaviour is irrational, impatient, throwing fits, rigid about everything, obsessive, sensitive to smell, sound, and sight. He stares at lights blinking, is light sensitive, and seems to not be able to focus. He is exhausted and overstimulated even if he had 12 hours of sleep. He forgets his train of thought. For example, he wants something, and while getting it or while I am getting it, he either goes for or asks for something else. Perfectionist about toys so will throw or set aside anything less than perfect. He has moments of clarity. He looses his personality and 'becomes' other people he had fun with when last on dye and replays old scenarios. Most recently I found out that for days I have been a mom named Jule and he was Jack that he saw once when they gave him dye. Completely out of sync, won't look at me in the eye at all, can't listen, slurs speech, and is very intense. Prior to getting tonsils and adenoids removed, sleep was disrupted with apnea and snuffles were more than usual. Also he had very picky eating and would only eat salty food, or sweet food etc. Can't regulate bodily functions for example, doesn't know when he is hungry, full, has to potty, is tired, needs to rest etc. Can't transition. Is ok only when playing with me one on one, at home, with the lights easy and with no other sounds. If music plays, it effects his play. Clicks his tongue or swishes his saliva often to fill sound space. Sensory seeking. If I don't constantly talk to him, he gets his own ideas of what is next. Very intense. Sometimes bangs head onto couch, seat, or wall, bangs feet constantly. He taps on me. He will zero in on me or a child, or his toys will zero in on my toy, or a childs, and he will follow like a shadow. "Play with me" is his common phrase at home. If we are out it is, "I want a lollypop". If in a store it is "I want to see (insert toy he caught a glimpse of)."
Describe how your child benefited from avoiding dyes:
This is a hard question because there are 2 Masons: the one on dye and the one off dye. The boy off dye is eager to help and eager to please, funny, caring, sweet, well spoken (12+ word sentences), mentally creative, he has typical 3 year old frustrations and can generally cope with regular stress. He is generally happy-go-lucky. He still wants things a certain way, has some difficulties with senses, tests most of the time, and responds best to positive reinforcement. He can understand his bodily needs, for example, I am uncomfortable or sad... maybe eating will make me feel better. But when on dye, he says, "I am sad I am sad I am sad." I say, "you are hungry lets go eat." To which the response is "NO! I AM NOT HUNGRY! Maybe a new toy will make me feel better." He has been diagnosed with a social developmental delay and mild Sensory Integration Disorder. He has always had sleep problems, and as a baby always had to be upright or he would wake up crying, or start to cry. Colicky baby, ear infection prone, alert, and learned to speak early. We started seeing more problems after 18 months, when he started eating table food. I had no idea what the problem was until he was about to turn 3 and we realized that before the blue cupcake he was the happy Mason, and after the cupcake the whole process began. The food coloring does not process in him; it comes out the exact same color it goes in.
What other ingredients/additives contribute to the problem, or are food dyes the main problem?
Food dyes are the biggest problem, then artificial flavors, and some natural flavors. He can tolerate some flavors as long as it is not too much. Dye-free Medicine with intense grape or strawberry flavoring have the same effect as dye, such as his antibiotic and Tylenol Cough and Cold. We avoid artificial butter flavor and anything with strong artificial flavoring because it has the same effect as dye. Dye-free foods we avoid due the 'dye-like' reactions include Peppercorn Ranch Sun Chips, Cheez-It Party Mix, Hot Pockets, Totino's Pizza Rolls, Juicy Juice Fruit and Vegetable Fruit Punch, . I have yet to figure out what all these products have in common. Also never give him any food that is targeted to kids due due to mild or questionable irritation (I always know the minute I pick him up from school if he shared a snack due to the 1,000 yard stare, followed by the fearful, hyper, overjoyed, intensity). Butter and Yogurt must be organic. And most pizza, even without dye listed, gives him dye-like symptoms. Pizza Hut is safe. Domino's is questionable but I won't try it again.
Has your or your child's doctor been helpful? Unhelpful? Please explain.
The doctors have been sort of helpful. The pediatrician pointed me to an allergist who told me to keep him off of dye. This is impossible for two reasons: every time he is with another caregiver (preschool, or camp etc) he is ingesting it. The most recent bout was with him eating crayons at gymboree. And second, I can't put him into a bubble; dye is everywhere. A friends had him kiss her on the cheek that had blush makeup, a child with chapstick on the playground kisses him, a child opens a container of sauce next to him, it sprays out, lands on him and he licks it off his skin. The allergist pointed us to an ENT and we discovered he had to have his adenoids and tonsils removed. This helped immensely with the sound sensitivity and impairment, stuffy nose, and gurgling sleep issue when undergoing inflammation from dye.
List any other food allergies or sensitivities that your child (or other person affected by dyes) has.
He also has a sensitivity to Annatto, and does not process peanuts. More than one serving a day of milk or cheese constipates him. Ice cream, chocolate, and cinnamon, we keep to special occasions only because he gets uncomfortable in his skin, and distracted after he eats it. He gets gassy very easily from hotdogs, eggs, dairy, and more than a handful of blueberries constipates him.
How did you hear about this website?
By doing personal research on food coloring. Please contact me if you need more questions answered. I am very willing to let scientists study Mason's intolerance, since it is so obviously night and day when he is on dye. I know in my heart that if I was not aware of dye being the trigger, he would have an autism diagnosis. I see now how it is affecting not just mason, but other children to a lesser extent. When at a social gathering as soon as the children start eating those artificially colored cookies or candies they ramp up, get more boisterous, and the more ramped they get the more they keep reaching for it. They don't know it is what is making them high, but their bodies do. I think also that it is no coincidence that as the amount of dye in the American diet increases, so does average body weight. It is perhaps the dye in the Dorito, M&M, or cake that makes us want and crave just one more. My 3 year old has realized that he likes the initial high that he gets from dye, and will sneak it at any chance he can get. This saddens me, and is like giving an addicting drug to a child. In 2004 researchers discovered that blue food dye, which crosses the blood to brain barrier, blocks an ATP receptor called P2X7 located in the central nervous system. ATP is the molecule that normally provides energy for the cell (http://www.wired.com/wiredscience/2009/07/bluerats/). If parts of our central nervous system is being blocked, who is to say that our senses are not being deadened? Combine that with the slight high, and maybe we ignore that our body is full and reach for more? After being off of dye myself, I can see a tremendous decrease in cravings and I can listen to my body more than I ever could before. Maybe this is the link that dye has been proven to mess with the central nervous system, and more children are being diagnosed with central nervous system dysfunctions more dye is being ingested in America.
In the 1940's severe methemoglobinemia poisioning occured in children who ate crayons, some resulted in death (1). Hemolytic anemia is a condition in which there are not enough red blood cells in the blood, due to the premature destruction of red blood cells. The color studied was Para Red which was originally produced by
