this is one of the questions any allergy parent has the hardest time dealing with. if you aren't an obsessive-compulsive personality before your child gets diagnosed with multiple and/or severe food allergies, you're going to fit the description of one by the time they are. you have to learn to be paranoid about all food situations, all caregivers, schools, anywhere food could be served to your child. the tests aren't even that accurate, especially the younger your child is. you may find yourself having to tailor or modify your doctor's advice or diagnosis to fit your child's true level of allergy response. and you may find that the doctor doesn't support you in doing so.
for example, my allergist told me that corn, soy and wheat were fairly mild allergies for my then 1 yr old. he said all i had to do was cut anything containing the words, 'corn' 'soy' or 'wheat' out of his diet directly, but that i could continue to eat these things as his breastfeeding mother and the minimal exposure in my milk shouldn't hurt the baby. the picture above with him with red, swollen eyes is how he looked until i realized i had to cut those things out of my diet completely, as well. he still looked like that and was a miserable, screaming, non-sleeping, constantly nursing mess until i learned all the hidden terms for these foods plus his other allergies and cut them out, completely, to the last trace, for both of us. luckily for me, my doctor could see the improvements with every extra step i took to cut out every trace of his allergens and supported me. lucky for me, i have found doctors who realize this is a fairly new problem increasing in children today that we are all learning about together.
the picture of his torso was taken a couple of weeks ago, at 2 years, 5 months - when his older sister spilled some of her cereal with vanilla rice milk on his shirt. the only thing in the rice milk he's allergic to is the vanilla, which is made with corn. the milk was on his shirt for less than 5 minutes. the picture of my little girl's face was also taken a couple of weeks ago, at 5 years. we bought a bakery cake for her father's birthday. she has life-threatening peanut allergy with anaphylaxis, so we knew she could never eat a cake from any bakery unless it is a dedicated peanut-free facility. i took a chance on this cake, that the bakery assured me had not come into direct contact with any peanuts. she picked up a napkin a brother had used who *was* eating the cake and she wiped her own face with it. right after taking the picture, her lips began to swell and she said her tongue itched - both signs of impending anaphylaxis. luckily i'd given her benadryl at the first sign of a bump and we didn't have to use the epi-pen or go to the emergency room - this time. i can't give my mulitple-allergy son benadryl for any of his reactions, as he is so allergic to the corn it is made with that he just has another reaction on top of the primary one.
i could post dozens of photos and stories about the terrifying reactions my kids have, but that's been done relentlessly on food allergy sites and i tend not to respond well to shock tactics myself, so i'd prefer to take the position of describing what it's like to suddenly find yourself in this position. here are a couple of articles that illustrate some of the opinions you find yourself up against when you learn that your child has severe, life-threatening and/or multiple food allergies:
i especially like reading the comments on these, because that's where you see the real parents responding and talking about real life situations. articles like these are terrifying to parents like me. they scare me even more than they make me angry. if being a parent is like having your heart walk around outside your body, then being a severe and life-threatening food allergy parent is like having your heart with a time bomb strapped to it walking around outside your body. and the detonating button is in a place that anybody can push it.
i want to believe that, as soon as they hear my child could die from a food, any other person would do their best to keep that food away from my child. then i see articles like these. or the story where the nanny felt the mom was just being neurotic and fed the child a sandwich with peanut butter that landed him in the emergency room. what mom *wouldn't* become obsessive or neurotic, living with these possibilities?
i remember the first time i'd heard of a child severely allergic to multiple foods. we had two - going on three- children of our own and the first one was starting kindergarten. we didn't do preschool, so this was our first school experience. there was a little boy in class with my son who was allergic to eight things. all the parents in the classroom were told we couldn't ever send anything containing peanuts or egg into the classroom. our sons lived on peanut butter and jelly sandwiches and i kept giant bowls of boiled eggs in the fridge by the dozen for my huge-appetite children.
my husband and i were both annoyed that we couldn't send these favorite foods along to school with our son. then the mother of the allergy child sent a note home clarifying that if the eggs were baked in other things, they weren't as dangerous to her son, so baked goods containing eggs could be sent in. i was confused and wondered where that left things like egg salad sandwiches. just too much egg like that would be harmful to him, i assumed. but i didn't really understand. to make matters more complicated, his allergies changed as he grew. he'd get over being allergic to one kind of food and suddenly become allergic to another - it was crazy! i'll be the first to admit, i was very skeptical and confused about what the burden on other parents should be when a child has multiple food allergies - but i still felt completely obligated to follow the mother and school's mandates to the letter. if this mother had wanted to make the issue seem more 'legitimate', it would have been more effective for her to say, 'no eggs ever, under any circumstances - they can be life-threatening to my son'. by saying they were okay under some circumstances seemed to make her claims of the seriousness of his allergies less valid to the rest of us parents.
however, had she taken the more militant stance against eggs, she would have been doing exactly what we allergy parents are accused of so often: exaggerating and hyping the issue -and being hysterical. she was doing exactly what she should have: patiently trying to educate other parents and give a true and accurate description of her son's changing allergy needs. she didn't ask the school to take any extra measures for his lesser allergies, only the severe to life-threatening ones. regardless of our ignorance and feelings about what we wanted to feed our son, we never even considered sending anything in w/ even a trace of egg or peanut. for us, a big part of parenting is about reducing risks to our children in every way possible until they are old enough to do it for themselves and we couldn't imagine even taking the chance of being responsible for harming any child.
when i finally met her in person, all i saw was a concerned mother trying to keep her child safe and not the neurotic, attention seeking, overbearing parent these articles portray food allergy parents to be. i will never forget her describing her allergy kit to me. it contained his medications, his epi-pen, his photo and other instructions and identifiers should he have a life threatening reaction while at school. she asked the school to keep one in multiple locations where he spends time in the school building. i remember thinking what it must take for her to let him go and trust he would be safe every day. all i felt was sympathy, awe and respect. and if i'm being honest, gratitude that i didn't have to do the same.
and then i woke up one day and found myself in the same boat as her. in fact, she was the first person i called after my 11 month old daughter was diagnosed with life-threatening peanut allergy. and i forgot that there are still people out there that are as ignorant as i once was - or even willfully opposed to having their rights to feed their children whatever they choose restricted. i am still shocked every day when i read these articles or meet people like this.
if this were a breastfeeding issue, i would be ready with facts and sources and experts to quote and wouldn't back down until i'd made sure my point was made. but when faced with a parent telling me if my daughter is that allergic, she should be home schooled before they should be asked to modify what they send to school with their child, i just wilt. how do you argue with someone that seemingly would put your child's life at risk to prove a point? why would you even want to fight for the right to have your child anywhere near these people?
i met a mother in the park this past summer with a child attending the same school as my three oldest. my two youngest are the food allergy children and are not yet in school. a food allergy group was recently formed at our school due to other children with peanut and tree nut allergies - (though there are no children with life threatening level reactions at our school yet and peanuts and tree nuts are not restricted from the lunch room). they requested that the school make classrooms peanut and tree nut free. i went to the initial meetings and am very excited about the posters and instructions for reading labels and alternatives they have displayed for parents, teachers and students at school.
however, this mother in the park was fuming. she said that her son would eat nothing but peanut butter and jelly sandwiches. it was all he liked. and he needs his protein! i pointed out that there are some great alternatives, like sunbutter. she wrinkled her nose and said it sounded nasty and she should be able to feed her child what she wanted - if it could kill or harm another child, then that child shouldn't be in public school. i was stunned. i said, "but you don't think having a life-threatening disability to be around peanut butter trumps you giving your child a convenience food?" and she replied, "oh i don't believe it's that bad, people just exaggerate it to make a point, peanut butter is the new "bad" thing and it's really rare to be that allergic and if a kid is, then they shouldn't be in a public school!"
i couldn't believe what i was hearing and just walked away, bewildered. how can you argue with something that has no basis in fact at all ? why on earth would any sensible parent want to do away with peanut butter if they didn't have to? it's a great source of good fat and protein and tastes wonderful - we miss peanut butter every day! do people seriously think parents today have nothing better to do than exaggerate food allergies and try to get attention for it and make schools cater to their demands?! i have so many better things to do! i'd rather battle my states' lax laws on smoking in public areas than try to restrict what foods kids can have. or spend my time on my original parenting mission: to help educate parents about breastfeeding and help mothers and babies breastfeed successfully.
my two food allergy children aren't in school yet, but i'm already agonizing about it. i've been lucky enough to meet far more supportive and concerned parents at our school than not, but it only takes one dissenter to put my child's life at risk. one parent sending in m&m's for the valentine's day party could cause my daughter to die. i already know i can't let her have lunch at school, even sitting at the 'allergy table'. all it would take is another child that ate peanut butter touching my daughter's face or hands - or somewhere she will then touch - for her to have an anaphylactic reaction.
it's such an isolating issue to deal with. i put her in gymnastics a couple of summers ago and explained her allergy to the staff. they agreed to let me put up a notice asking other parents to wash their children's hands before attending the class she was in and asking them not to eat peanuts in the common waiting area. the owner of the studio cautioned me that he couldn't claim 'peanut-free' status nor would he force parents to comply with my sign - nor did he want to. he didn't want to alienate paying parents who felt the peanut was a healthy snack, and he agreed with them.
i wondered why i didn't matter, with the 5 children i was paying for classes for, but figured since i was with her constantly, i'd see any problems in advance. i counted on most parents already knowing about the peanut issues in society today and being more proactive and supportive than the owner of the gymnastics studio.
i counted wrong. i came in one day to find two boys eating "drumstick" ice cream cones from the vending machine, covered with peanuts on top. peanuts which were dropping and scattering all over the floor she was going to be walking barefoot on. peanuts she would then have to pick off her feet. peanuts that would leave proteins on her fingers that she might then rub her eyes with or poke into her nose or mouth. even as i tried to tell myself not to overreact and tamp down the adrenaline i felt beginning to surge toward my heart, one boy wiped his sticky, messy hand on the back of one of the seats we would have sat in. you would have thought they were in there playing with a loaded gun, the way i felt.
we turned and walked out of the room and went to the office, where i was told that perhaps i should train my (then three year old) daughter to recognize and avoid peanuts on her own and then i wouldn't have to be so worried. i calmly explained that she had her 1st anaphylactic reaction at 11 months and hasn't been able to be near peanuts since then - how could i familiarize her with peanut products besides when we go grocery shopping? she wouldn't know what they are out of the packaging because we have been a peanut free household almost all her life - to keep her safe! not to mention all the look-alike products out there made to replace peanut butter. would any parent of a child not even in school yet trust that they would know peanut butter from sunbutter when the containers are almost identical?
it went on and on like this and i even asked the owner if he'd allow me to leave a loaded gun lying in the cubbies while i attended the mom and tot class with my son. i pointed out that was almost exactly what he was permitting to happen to my daughter by providing and allowing peanuts to be eaten in the main waiting area. i also pointed out that a drumstick was hardly the healthy option he'd championed for budding young athletes.
i knew it was a lost cause when he told me he understood and sympathized with my plight because they'd had an adult employee with airborne peanut allergy that they wouldn't even ban peanuts for. no longer employed there - and no wonder!- he told me she'd had an anaphylactic reaction right there at her desk when someone opened a container of peanuts around her - and they still didn't ban peanuts from the premises!
he just felt it was the principle of the thing, it wasn't fair to other paying patrons to have their foods restricted nor did he want to take on the legal liability of trying to make his place 'peanut free'. as soon as i heard that, i couldn't get my daughter out of those classes fast enough. and the really strange thing is the owner is a religious, upright and well-respected pillar -of- the -community type man with several children of his own.
you just never know how people are going to react when it comes to food issues, you can't trust that they are going to put your child's safety first - you simply can't. and that's what gives us allergy parents the reputation of being neurotic and paranoid. neurotic and paranoid is what has prevented or lessened most of my children's exposures to their allergens, so i guess i can live with that label.
the label i can't live with is that we are exaggerating or hyping these allergies for attention or a need to manipulate others. any point i could make has already been made in the comments of the two articles i posted . suffice it to say i'd never pick this issue to exaggerate about. i've been on both sides of the fence. i was a blissfully ignorant parent of kids with no food issues. now i'm a parent of kids with and without.
even in my most ignorantly blissful state, however - i never would have taken the chance on a child's life or health for my convenience of food preferences. we are one nation that could afford to give up a little freedom to eat whatever we want, wherever we want, whenever we want - and not suffer for it. we are rich - in fact, gluttonously rich - in other options.
i actually think this wealth of easy options is what has led to my children's food allergies as we have no genetic predisposition on either side of our families. this is one issue where i learned firsthand that you might want to be a little open minded and accommodating just in case you find one day the shoe is on the other foot.