Much more than a Sneeze Part 2

Last night, at a routine family dinner, we started what I thought would be a routine conversation.

How was your day? My husband asked my son.

Well, it was my teacher’s birthday, and some of the kids brought in cookies and cake.

So you didn’t have any right?

Right. My son answers.

He gets up from the table and starts nervously tipping his chair back and forth, obviously irked.

Was it fun?  I asked. He had been talking about surprising his teacher for days; I knew he was looking forward to it.

Yeah, he said. But it’s really, really, really, really annoying. That I can never have anything.

I know I should be used to this.

But I’m not.

This initially surprised me, I have confidently assured family members, friends, teachers and other parents that Brett was OK with bringing his own food. Or saying, no thanks when a treat is offered.

But for the next half hour, no easy task, we try to calm him of the anxiety that he’ll have to live without, and be left out, for the rest of his life.

The conclusion? We all agreed:

We hate food allergies

And I was up at 2 a.m. unable to get back to sleep and get this conversation out of my head.

A little over a year ago, I wrote a post called Much More than a Sneeze about my son’s allergy to peanuts to show what it’s like to live with this disability. Allergy is a common condition most of us equate with stuffiness and sneezes and annoyance but nothing too harmful for the majority of people. Food allergy is often more severe, can lead to anaphalaxis, and can be life-threatening. The two conditions sharing this same name, causes confusion and misunderstanding, and often a lack of empathy or patience from people who are not familiar with the differentiation.

If you read public comments from any news article on this topic, it won’t take you long to scroll down and see blatent anger directed towards people with food allergies.

Often people assume the person is making up the food allergy.

Or just wants special attention.

Or they find some way to blame the parent or affected child:

Being overly clean. Not feeding nuts as a baby. Feeding nuts as baby. Bottle feeding. Using a dishwasher. Too many pesticides. GMOs. Fast food. Living in the city. Living in the country. Genetics. 

The list of who and what to blame goes on and on. Because, when most adults today were kids, they never knew anyone with a food allergy. There’s a blatant distrust that the disability, invisible to others, even exists. So why should anyone accommodate?

As I think about Brett’s disillusionment at his grim reality, I realized too, as a parent who has lived in the world of food allergy for a decade:

I’m not used to it either.

Pretending the repeated exclusion doesn’t bother us is what we are expected to do.

But sometimes you get tired of keeping up the facade.

It’s a reality that food allergies are known to lower a parent’s quality of life. So you can imagine what it’s like for the child on a day-to-day basis. But we are expecting these kids to just deal-with-it. Put on a shiny-happy-face.

Brett is 10 now.

An age I’m told by other adults he should be more independent.

Yes, he can now speak up for himself at school when those treats come out.

Yes, he knows he can’t eat foods that come from other people’s kitchens. He knows how to read labels.

Yes, he knows eating out at restaurants is conditional, and must include playing 20 questions with the staff on food allergy matters.

But as a kid, he doesn’t want special attention; he just wants to fit in.

And instead is forced into getting singled out and excluded

How many times can you see you are not welcome, before it starts to bother you?

How many times can you see you are not welcome, before it starts to bother you?

At every single event where food is part of the equation.

Think about it.

How often is food not part of the equation in daily life?

Almost every day there’s a reason to celebrate something with food at school: holidays, birthday’s, seasons, graduations, finishing a big project.

At camps, kids need a snack or lunch. If you are just out for the day and need to stop for lunch at an unfamiliar restaurant, food allergic people, even if reassured of their safety, are asked to assume a fry cook knows to keep their food away from the PB&J sandwich station. Ethnic foods (with peanut oil) and roasted nuts permeate the air in airports, and while on a plane, people nearby are munching on these nuts and foods at all hours, and in enclosed spaces. We wonder, will the smell and dust in the air cause him to react? If we ask the person eating nuts politely to stop, will they yell at us? We really don’t want to bother anyone, but….

These situations represent normal everyday life for most, but stakes are high for that food allergic child or adult, or parent, if they are near an allergen.

As a parent, what am I supposed to say?

How would any of us feel if we were  told to act normal and stop worrying when in the same room as something that could cause us to stop breathing, land us in a hospital, or potentially take our life?

And also, I read the news and know the reality.

As kids get older, and more independent, it’s more complicated.

As we let go, because “we can’t let our kids live in a bubble” more mistakes happen.

If only we could keep him in a bubble...

If only we could keep him in a bubble…this one looks good.

And more photos of these sweet kids, who did not make it because they simply ate a cookie. Or ordered food at a restaurant they were told was safe for them, but it wasn’t, and they forgot their epi-pens, or the medication didn’t work, start floating around Facebook, and our hearts skip a beat.

Unless you follow food allergy news, you may not see these headlines; there have been many, too many, in the last six months.

So often when I mention food allergy struggles to friends or acquaintances, I’m told:

“you know, food allergy can be cured! I just read something about this on the web!”

Statements like this give me pause.

If it was possible to easily get rid of this allergy don’t you think we’d be doing something about it?

I’m guessing you have seen these bold headlines declaring there is now a CURE for Peanut Allergies too.

Although I wish this was really true, I’ll give you my take on it.

The LEAP study has received tons of press recently, with headlines proclaiming (contrary to what physicians have recommended over the last decade) peanut allergies will be cured if you feed peanuts to babies. But it’s really not so simple. The takeaway from the study is actually that physician-monitored dosing of peanut could prevent some peanut allergies from forming in at-risk babies. Note: Parents, do not try this at home!

This is amazing news, if they can reverse the food allergy trend, that’s monumental. I wouldn’t wish it on anyone.

But it doesn’t change anything for us.

The most promising news to me is research on a patch, that uses small amounts of peanut protein to desensitize the child to the allergen. If a solution like this became available, it could minimize risk when a person with a peanut allergy is accidentally exposed to the allergen. We learned just this month research on the Viaskin patch has been fast-tracked by the FDA.

But do know it’s not available today and it will be years before it’ll be a viable option for us.

And there’s one more headline making the rounds: In one study, probiotics, along with other oral immunotherapies over time shows “promise” in treating peanut allergies. But this is one study. And it’s very controlled. Feeding my child gallons of yogurt, is not going to do the trick.

Contrary to what the headlines promise, the game is not over.

There is still no cure for Peanut Allergies.

My friends and family are all pretty awesome in their willingness to listen to our food allergy struggles. I know the topic isn’t all that interesting to those who are not affected, so I try to minimize how often I bring it up.

I am writing this updated post for a reason though.

It’s that realization the comfort zone we have created to minimize risk over the last few years is ending, and with growth, there will be so many new challenges, it makes my head spin.

I wonder:

Will there be a cure before he has to leave his current, food allergy aware elementary school, and if not, will this new school help keep him safe?

Will there be a cure before he starts to go on school field trips? Will he ever be able to go on field trips? Or will he be left out, once again?

Will there be a cure before my son starts to date, what about kissing?

Will there be a cure before he goes to college, and has to live in a dorm?

Will there be a cure, and not just the empty promise of a BOLD headline, EVER?

Because until there is a real cure.

A cure that promises us the stakes of making a food allergy mistake are no longer high.

I’m hoping you’ll be patient with us.

We may live with it everyday,

But we never, really, get used to it.

Have you seen the latest headlines? Did you think this problem was solved? What challenges have you faced or conquered, growing up with a food allergy or helping to manage your child’s allergy? Or do you have tips on managing anxiety? Love to hear your thoughts!

52 thoughts on “Much more than a Sneeze Part 2

    • Thanks so much for commenting Nikki–it’s tough to pinpoint some of our food allergy worries, the big questions especially, but once I get in down in words, it helps me understand a little better and can be a better parent (at least hope!). Take good care!

  1. Robin, I loved this post because it is exactly how we feel. Both of my children have food allergies. Joseph have allergies to nuts, eggs and seafood. Emma has allergies to dairy, nuts, and seafood. There has been times when we’ve asked about the ingredients and were assured there were no nuts or no seafood then 10 minutes later they have a reaction to what they ate because that person that made it forgot she DID put nuts, seafood, or dairy in the dish! Joseph is 16 now so often will go off on his own to attend parties. I can’t stop worrying until he gets home. I feel especially bad when one them asks what seafood taste like or will say, “Seafood must be really good because the family has it at every gathering.” WE HATE FOOD ALLERGIES!!!

    • Emilin, thank you so much for your comment. Wow, 2, and a sixteen year old? Without making this post so much longer, I thought about including going to parties, and bars, and such in college, really makes my head spin too–esp. after another headline I read (who knows if it’s true…) about alcohol making allergies worse. Ugh! My son also has multiples, including a few tree nuts and a new one: soy. The ability to even put these allergies on a hierarchy when you are out in public and trying to navigate what is safe, what isn’t and what’s good-enough to eat is mind-numbing too–his worst, we think is peanut so I tend to focus on that. Good luck to you, and thanks so much for reaching out!

  2. Love this post! It sums up what we all go through on a daily basis. My 4 yr old son is allergic to eggs and tree nuts. He will be starting school in the Fall and I am already starting to worry about having him in an environment with so many other kids. While the school he will attend is peanut, tree nut, egg and shellfish free, I still worry. I HATE food allergies!!

    • thanks so much for commenting Janice, love the support. And of course to know I’m not the only parent realizing sometimes you do need to let that guard down and admit. This is hard! In our parenting quest to always be positive, it’s exhausting!! It’s so great, for the time being, you have such a aware school for your son. You have a few years more–maybe, just maybe that super-cure will come before he’s more independent!

  3. Robin, what a wonderful post. In addition to working to keep you son safe, you are eloquently speaking up for all of the food allergy families. Hopefully, articles like yours will help educate the rest of society so that people with food allergies are treated more respectfully.
    My almost five year old son is allergic to milk, eggs, peanuts, tree nuts and shellfish. We are lucky to have a strong support system made up of friends, family and his school. — Especially his school which allows me to make all of the special treats so that he can have the same treats as everyone else. However, the farther out we go from our safe environment, the more he sees he is different and excluded. I would love to buy one of those bubbles if you ever find one.

    • Beth, so you just need a little water, glycerin and dish soap for those extra big bubbles! Definitely start making them :). Thanks so much for your support and comment. It’s so great to hear the safe situation your 5 year old has now. Our school is like that too now (my son is in 4th) but the prospects are not quite as good after 6th, and that’s where all the expectations from “others” come out. “Well, shouldn’t he be old enough by then to deal with this himself?” “Other kids deal with it, yours will too!” I can just hear it now….and it’s worrying… And this new situation, I guess I was blindsided by my son’s recent sadness because he seemed just fine about this situation from K-3. His teacher did mention to me 10 is the age where they start learning fairness. This condition is really not so fair and he’s feeling it. And so do we, as parents.

  4. Thank you for this – it is SO spot on!! I just do not understand why people continue to think it is just fine to exclude kids. Yes, it is their life and there are many things they cannot do, or cannot do without a whole lot of questions and advance work – BUT why do they have to also be left out at school? deliberately. by teachers even?

    • Kimberly, thanks so much for your comment– I think some us, including me, and the teacher thought if the kid sits nicely and eats his little safe treat, w/out complaint, it’s all just fine! Let’s keep doing it! But, this conversation the other day showed me it really wears and tears on these kids, even if they silently just endure it. With my interest in health, not even for allergy reasons, I’m always questioning food as reward, or food treats anyway. If they could stick to something else, non-food, it would be so much better. I think I’ll now be a better advocate for him–and will alert his teacher, or friends or whoever, that this situation is just not ok! Again, so glad to hear from you!

  5. this was a wonderful post – my 14 yo is allergic to dairy. And we notice her avoiding social settings and parties – so we’re working on her gaining confidence and ordering at a restaurant and speaking up – even if she’s just ordering a salad to reconfirm that the server write on the order DAIRY ALLERGY (no cheese/no croutons). Just to increase awareness. We teach her to take little bites, wait 5 min to see if there is a tingle (especially if its a new restaurant) the other day in an order of fries there was a lone cheese curd – luckily she didn’t eat it. She’s ok with fries made in the same oil as cheese so we confidently order fries – sometimes that is all she can have at a restaurant. We also always pre-eat, pack hi protein bars in her purse and bring safe food to share at any party we attend. We also bring our own salad dressing to every restaurant especially if it a salad bar.

    • Sue, thank you so much for your input. And that’s a great tip about taking a bite and waiting–I think we may try that too! I see this avoidance of social settings too in my son, and it’s weird, I wonder if he can truly be anxious because that’s his personality, or is it really the food allergy that’s causing it? I so wish I knew. thank you so much for your comment and it sounds like you have taught your teen really well!

  6. Thank you for this post, Robin… you explain everything so well. I appreciate your concise question, “How often is food not part of the equation in daily life?” My husband and I have a 17-yr-old daughter who is allergic to peanuts and tree nuts; we’ve known since she was just under 2 yrs. I hate food allergies, too! The last few years have been the hardest due to 1) a youth worker who, over about a year and unbeknownst to us, told others he thought we were lying about our daughter’s food allergies plus ridiculed her to others and a couple of times to her face (tried to disguise it as “joking around” about her allergies but our daughter and other kids didn’t buy it), and 2) helping our daughter “fit in” with her new youth group as much as possible which means that many more food situations. Ugh! I don’t allow myself to think much about the upcoming years of her gaining more and more independence; we prepare for the worst, pray for the best, plus take it all one day at a time (or I’d go crazy)! 😉

    • Natalie, thanks so much for your thoughts. I have tried to reiterated w/ my son food does not equal fun. I think social settings today so often revolve around food as more of a hobby!! If we all ate first and took a walk or a hike or went to a movie, or at least something different, that would be pretty great. But sadly, most of the people around us think this is kind of a miserly way to go, because hey, Food is FUN! I’m so sorry about the youth group situation though. I’ll bet your daughter has been silently keeping in the frustration too…And I so wish I didn’t think about FA so much either–it’s definitely the reason as much as I’d like to write about food allergy issues more often–I keep these posts more sporadic –it is so hard on me too. So glad you wrote in!

  7. your post rings so true and more so for me. My daughter is severely allergic with anaphylaxis to 8 or 9 foods including dairy, tree nuts, eggs, shellfish and some fruits and vegetables. So if you think having a peanut allergy is bad, at least that is well known and understood. Schools and institutions understand the value of being peanut free. People don’t really understand my daughters allergies. Teachers, pharmacists and family members who themselves have food allergies (peanut and tree nut) have all caused my daughter to have severe reactions including anaphylaxis in all cases and asthma attacks on top of that through their carelessness. And no there was no cure before she went on school trips, over night retreats, the prom or had her first kiss or went to college. There is no ground breaking research being done on the foods she is allergic to that hasn’t caused other side really bad effects. All attention is on peanut allergy. And that sign from the restaurant that says it won’t accommodate food allergies, she assumes that no restaurant can ever accommodate her. She brings her own food everywhere. She will be bringing her own food to her wedding. Oh if she “only” “just” had a peanut allergy.

    • Nancy, wow, just wow! So you definitely know the drill to the full extent, and I’m so sorry it’s so hard for your daughter and your family. My son also has to avoid all tree nuts and soy too, I focus mostly on the peanut though, as far as we know (and honestly, we don’t know….) that’s the one proven the most severe. Thanks so much for your input–multiple allergies multiply the exclusion, and it’s just awful…..take good care!

  8. Your put into words exactly what our life was like…we lived with life-threatening FAs to PN and TN for over 10 years, and I also worried about my son’s transition to middle school. I stumbled upon info online about private practice OIT…and learned there are many board-certified allergists providing this therapy, insurance is covering it, and there is lots of research supporting it. Many already used probiotics, too. Now, a year later, my 12yo son has a much more normal life! I encourage you to look into this. Our story is at bignuttyworld.com

    • How awesome—I will check that out, thank you! It’s great to hear your son has had some success with the Private OIT, we go to a great allergist but they have never mentioned any of this to us, but maybe it’s up to us to seek them out?! thanks for letting me know about that Lori!

  9. This post made me cry. My grandson Elijah ( my only grandchild) will be ten soon. He has so many food allergies and is so limited in what he can have and it’s very sad because although he does understand he can’t have what most kids enjoy, it still isn’t easy. Especially when an unexpected treat is brought to school and even though the other parents are made aware of the kids in the class that have food allergies, many times they forget so these kids along, with my Elijah, get left out. What hurts him most is not being invited to parties, even some family gathering because they just either don’t understand or don’t care to take the time to provide something else for him. As you said, tell us, invite him and we will be more than happy to bring his food and treats prepared at home, we would actually prefer this. Just don’t hurt him by leaving him out! Elijah is allergic to peanuts, tree nuts, soy, fish, shell fish, peas, eggs, dairy, spinach, and any tree fruits (unless they are cooked). We can’t even give him a cheese substitute so he can have pizza because most of the substitutes are made with pea protein. That’s just the food allergies. He has a condition called Eosinophilic Esophagitis, he has to eliminate dairy and egg because it causes his esophagus to close up, he has stomach pain and throws up everything. This requires him to have to have an endoscopy and biopsy every 6 to 8 months and take medication twice a day 😦 This can also cause his asthma to flare up. I hate it when people make jokes about all of his allergies. It’s NOT a joking matter!! There are so many more allergens for him, like trees, grass, animal dander etc. And WOW, since he’s only 9, I hadn’t even thought about dating (kissing) and college until just now. It’s sad and it’s scary, but we continue to pray for him to out grow his allergies and continue to be as careful as possible. God be with our children!

    • Jo-Ann, I’m so touched that someone like me, with a less complicated situation (with JUST peanuts/tree nuts and soy), can touch someone like you who has so much to deal with. We just started dealing with the Asthma last year too, and honestly, I had no idea how scary that is. Especially with a food allergy, when you don’t really know sometimes if it’s food allergy or asthma, or pet dander or outdoor allergies. My son says he basically is blowing his nose all day long–as with you, I just HOPE as he gets older this will be less hard. You are right–I have a great sense of humor, but not about this either. Take good care, and I’m so glad you wrote in!

  10. Great post! The part about your friends and family struck a chord with me. Generally, my friends and family are pretty awesome too. However, recently, during one of my frequent rants, by bff looked at me and said “if you worry that much about it, why don’t you home school”. I am use to the question, but, certainly not from the one person who is suppose to have my back. She is the one person who is suppose to “get it”. I really try and not let that one comment bother me, but it does. I don’t mention allergies to her anymore… at least not in a ranting, “I am scared” kind of way. I guess the simple truth is that the only people that are going to “get it” are the people that have a child with a food allergy.

    • Jeannie, you are so right. One of my friends once told me I was too “hovering” of a mother, and when I explained how hard this allergy was to her, she tried to equate it with her fear of flying and letting her daughter on a plane. Seriously? Ok, it’s a lot more likely someone will feed my kid nuts accidentally and not know how to use an epi-pen in an emergency, than it is for a flight to go down. Anyway, like you, I have to “know my audience” on food allergy matters and pace it–not too much, not too little. Definitely why I only sporadically write about it here on my blog….thankfully you and other food allergy folks do appreciate it!

  11. Robin,

    I’m speaking to you from your not so distant future. My daughter is 17. She’s severely allergic to peanuts and tree nuts (she shimmied out of soy, milk, and egg allergies during elementary school). She will be going off to college next year and we’ve been doing college tours, dining halls and midnight snack cafes, and all…

    We’ve had some near misses and some very sad disappointments while encountering unempathethic teachers, parents, or administrators of camps/schools/enrichment classes. We’ve also had lots of triumphs and lots of support. She’s been on many, many field trips… Including a week long backpacking trip, and 2 international service trips abroad. Epipen and inhaler, check!

    During middle school, we sought support from a family therapist to help all of us deal with the anxiety that you have named. It was immeasurably valuable, and I strongly urge any family with food allergy to do so. You may not realize how much anxiety you have internalized. More specifically, how much anxiety, social anxiety, food allergy can cause adolescent kids. They need help to sort out coping strategies to deal with the separation/exclusion that they feel from being kept at arm’s length by their allergy from the food that brings everyone else together. Food is often used as a catalyst for social interaction. If you can’t have the food, you aren’t invited into the interaction.

    Our kids live full, happy, healthy lives. We need to keep supporting them and each other so that they can do so, without the pain associated with being put in a corner while everyone else eats cake.

    We can all eat cake.

    • Nicole, I sooo love your story, thank you! It can be done. I think you need to write a post for us! Please? Great tip about the food allergy support, I’m going to mull that over—my boy will probably need it. Thanks again for writing in, and giving many of us hope!

  12. Great post! Our son is 12, and he has been severely allergic to peanuts his whole life. It’s been limiting, challenging and anxiety producing (especially for him). Recently, at the prompting of another food allergy mom, we have gone through oral desensitization to peanuts. It’s over a 20 week process. He is now eating 10 peanuts twice a day. After a month he will go on a 10 peanut daily doseage and he will be able to eat foods without worrying about cross contamination. He’s still overcoming the mental anxiety that is imprinted on his mind from 12 years of treating peanuts as a deadly poison. But, he will have more freedom and hopefully less anxiety. It’s not a cure, you still carry your Epi-pen. But, it does allow you more freedom and less worry.

    • Wendy, thanks for sharing that! There was another comment above from Lori mentioning OIT too, so I’m now intrigued, although we did a soy challenge a few months ago, where my son failed. And it was one of the most agonizing experiences in both or our lives. I worry he wouldn’t be up to it because of that, but maybe in a few years. Thank you so much for the hope!

  13. Thank you!!! And amen to every word you said!!! My 11 year old niece is anaphylactic to even traces of milk protein by contact, inhalation, and ingestion. This is our reality as well. And I’d give everything I own if I could just trade places with her and allow her to live a carefree childhood like I now realize I took for granted!!

    • Mendy, thanks so much! Milk is so tough too! I had never thought of that, trading places, but would do that too! I have given up all nuts/peanuts too and just wish I could tell the world, hey, it’s not that hard! I did it!

  14. this is everything I think every day! I have a son who had an anaphylactic reaction to peanuts at two. Afterwards we found out he is allergic to many other things. We moved to Europe (much more difficult than the states!) for work and thankfully his school is nut free but when we travel he feels it (now he is 6). Traveling in Europe, so much of the culture is food and he can’t eat much of it. We can’t stop at a bakery for a treat, we have to say no to many things… Latest disappointing was gelato in Rome. And we all agreed “allergies suck and it isn’t fair”. The disappoinent breaks my heart it’s just something he needs to deal with every day and it is frustrating for them no matter how long they have had the allergy.

    • Jessica, thank you so much for your perspective. I have actually wished sometimes we lived in Canada, or the UK because they all seems so much better than the US on allergy matters. With the UK listing twice as many foods as allergens as we do, and now that new bill that makes restaurants list the allergens. And Canada seems very up on it too. But you are right–BAKERIES! None of that…..I’ll bet you learned very quickly how to make gelato at home though! 🙂 Again, so glad you wrote in!

  15. Thank you for speaking for us parents. Our son is 8 and was diagnosed the day after his first birthday with a peanut allergy. He’s also allergic to some tree nuts and strawberries which came as a surprise because for a few years they were the only fruit he would eat. We have been living in Bermuda for the past few years and it has been both a blessing and a challenge. When he started preschool, he was the first child most people knew with a peanut allergy so we spent a lot of time educating people. The blessing has been that he has been around most of the same children for the past 4 years so we don’t have to keep reminding people and they have been very good when it comes to snacks and such. The challenge is now some of those same children some times say to him that peanut butter tastes great and he doesn’t know what he’s missing. My son came to me crying when he told me that and asked me why does he have to be different. It broke my heart because I didn’t know what to say. He’s only had peanut butter by accident one time in nursery school so he doesn’t remember the reaction. I know it’s the next time I really have to worry about because there may be a worse reaction. I feel like he thinks I just don’t want him to eat it and I should let him taste it just so he knows what can happen but I can’t do that. I wish we were back in the States because then he would have more children around him who understand what he goes through but that will come soon.

    • Janice, thanks so much for telling us what you are going through. That is so tough, where they are so young they don’t remember. For some reason, my son does vaguely remember the first time we did the epi (at 3) and was so horrified, he has no desire to go near PB. But, thankfully, there are so many good substitutes you can tell him are like it? Like Sunflower seed butter and such. I totally get what you are saying though, being the only one. We are in a small town and even though I read statistics that 1 in 13 (I think that’s what it is…) have some sort of food allergy, for some reason, my son and one other boy who will be leaving to go to middle school next year, are the only ones in over 100 kids??! Makes me wonder… but he does feel alone, wondering why?? It’ so tough, as a parent because we have no answers! Good luck to you Janice and thank you again for sharing!

  16. Robin: Thank you for such a wonderful post. My son is 16 now and allergic (all his life) to peanuts, tree nuts, milk, eggs. He is home schooled since middle school because in our area the epi-pen has to stay locked in the nurses office! But he is going to start college in the spring. I worry about that and his going off on his own…so scary! I hate food allergies!! Good luck to your family and we are in your corner!

    • LuAnn, wow, homeschool all his life for this! I can imagine that was quite a challenge for your family. It’s hard to believe the school would not accommodate you–especially since so many do! College at 16 though? Sounds like you gave him an excellent education! This is going to be quite a transition though—good luck and I hope you tell all of us how he does! thanks so much for your comment!!

  17. Thank you for this article. I just shared it- it captures the true food allergy experience for anyone who is interested. I have 16 year old twins with PN, TN, one with soy, the other with sesame allergy, and asthma . They handle it beautifully, but being constantly on the outskirts of events with food, having to quiz people at restaurants or family gatherings sure gets old. College is the next challenge . One word of advise for elementary and middle school – when meeting with school staff about field trips, etc, ask them to be tactful- not make a big public deal about carrying your son’s meds. That was one thing that bothered my girls the most, looking back now. They also hated the nut- free lunch table. You can ask the school to designate a couple tables for those with nuts, instead. I put a stop to teachers handing out candy as a reward, which is wrong on so many levels, goes against wellness policies, etc.

    • Lorna, thanks so much for the tips–those are great and ones I hadn’t really thought of yet–about the meds and lunch table. It’s so great to hear your 16 year olds are doing well–one exactly the same as my boy (PN,TN, Soy & of course…..asthma)…so it kind of helps me see it can be done. Love your comment about treats as rewards–that’s my pet peeve too, regardless of allergy, it’s just not necessary! I wrote about it a few months ago too, in this post https://afitandfocusedfuture.com/2014/07/24/a-sweet-treat-at-every-stop/…but could go on and on and on for whoever will listen (not many unfortunately!) I’m so glad you wrote in about your boys–thanks for sharing!

  18. Robin,
    My heart goes out to you and your son every time I read your posts. While our immediate family has been pretty free from allergies (other than the annoying kind), I have a cousin whose son has the nut allergy, an aunt-in-law who has severe celiac and is becoming allergic to more foods/ingredients every year, and a cousin and another mom friend with Crohn’s disease (not an allergy per se, but can definitely be life-threatening over time) — so info think about these things often. I am currently trying to figure out the source of my youngest son’s more-frequent-than-normal stomach aches and trying no dairy first. And I know how much I worry and stress over the normal bumps in the road of kids and illness, and wonder how in the world I would EVER hold up under some more serious threat, or something that consumed our lives every day. I’m not sure I’d be good at it, or do as well as you guys seems to do.

    I also had to take my mom to the ER months ago and remember groups of sobbing family members streaming in behind us in fits and starts after an ambulance arrived — a young man of 19 had amaphalaxis at a get-together, and the epi-pen didn’t work. My heart (and my gut) seized up right there, and I disnt even know him.

    All this long winded stuff just to say — keep telling the truth of your life, your family, and all the emotions that go along with this life. I think the only way for us to grow and understand each other is to speak our truths one person at a time, and keep speaking it even when we may sound silly, have to admit mistakes (large and small) or risk being hassled or ridiculed. Bless you, bless your family, and most of all, bless your son and keep him safe.

    • Tina, wow, thank you so much, I can’t tell you how much your comment and continued support mean to me. It all goes to show, everyone seems to have something going on and we ALL need to have to just trust and learn to respect and show empathy, rather than distrust situations we don’t really know much about. Just that story about you seeing the 19 year old in the ER? Exactly what I’m talking about–this past year not a day goes by where I don’t see a headline about a teenager in this same situation and it is absolutely gut-wrenching–to anyone! I just read a story today about another mom on a flight, who was sitting in front of a person eating peanut butter sandwiches, with her PA child, and the people made a huge fuss, and the whole flight was disrupted. It just shouldn’t have to be this way….I wouldn’t wish this allergy on anyone else, BUT just wish I could show others, really, it isn’t that hard to be accepting of others! Try it! I’ll do it for you! So Tina, let me know how the dairy testing goes for your son–stomach aches are so tough because they can be food, or even stress-related. I hope it’s not food—but if it ever was, I know you’d be up to it, just like we are in no time. So I’m going to read that last paragraph you wrote over and over again to keep me going Tina, and I SOOOO wish, once again, you would start writing. Love it when you do!

  19. Hi Robin, When my daughter was about 4 months old. I went to a lecture presented by a very well respected pediatrician in my town about introducing foods. She said that while some people would have food allergies no matter how they were introduced to foods she blamed pediatricians for the massive increase in many food allergies. She included herself in this. Parents, she said, try to do what is best for their kids and relying on their medical professionals advice is often a responsible way to do that. However, she said the advice pediatricians were giving wasn’t really research based and now all the research coming out is saying that parents should basically do the opposite of what the Dr.’s have been recommending for a long time. I am sure this a real bitter pill to swallow for parents who have children with extreme food allergies. That is why she has made an effort to educate the public and not just her own patients about the new research on introducing foods.
    I followed her advice and started giving my daughter of touch of different foods almost everyday. But for peanuts, which a family member is allergic to I was holding off introduction in order to do it before a Dr.’s appointment- so that I would be in a medical facility with her should she have an extreme reaction. Well, we didn’t get the opportunity to take that precaution because she found a peanut butter filled pretzel on the floor at a playgroup and ate it. Fortunately, she was fine but I still shudder to think about what could have happened had she been allergic. It terrifies me for people who have food allergies and their parents. I am so sorry for you and your son that you have to deal with this constant stress.

    • Hi Anne! thanks so much for your comment! Your Dr is definitely quoting the thoughts of this new LEAP study that was just published–she must have known ahead of time, but it’s just making the news now! It is kind of a bitter pill about the Drs. reversing what they think we should do regarding feeding peanuts as infants. I think many of us know our kids are in the population born with it, so it probably wouldn’t have made a difference. And also, this was just one controlled study, so we’ll see if they even backtrack on this one! Can you see I’m getting a little skeptical :). Definitely consider yourself lucky, kids have lots of different “somethings” that are unique to them and stress them out but this one? Wouldn’t wish it on anyone else! I love to see as person who isn’t affected by FA how informed you are though–we need more friends like you!

  20. Oh, that restaurant sign!! Ugh. I suppose I’m glad to be pre-warned we won’t be welcome, but can you imagine walking up to a restaurant that says “Sorry, we just don’t have the money to build a handicapped ramp. Keep out!” or “We’ve decided serving (insert culture of choice here) is just too much trouble, so please don’t try to eat here.”

    My niece has life-threatening food allergies and she’s SUCH a little trooper. She’s said “No, thank you” to more foods than she’s probably ever eaten. She’s a positive, happy girl, but there was no mistaking the look on her face–guilt, shame, sadness–when our entire family was turned away by a restaurant that refused to attempt to serve her a safe meal.

    I’m all for research, and I hope someday food allergies will go the way of the dinosaur, but in the meantime, we have people feeling scared and frustrated and unwelcome and being bullied and discriminated against, and that’s not okay.

    • Debra, you totally get it! What you mentioned about your niece, you describe that look on their faces perfectly. The worry. The inconvenience. The not-so-great focus on them. And it’s’ just heartbreaking to watch. The sign is amazing isn’t it? The funny thing is there were about 5 of that same sign in this cafe and everywhere you looked you could see it. I stopped just to get a cup of coffee and asked my son to wait with me, but instead he ran straight out the door and waited for me there. If a company receives so many “is it safe for me” questions that they feel they need to put signs like that up where-ever you look, then you’d think they could turn it around and make it positive and welcoming. Like, create a section with a few allergen-friendly packaged foods and say something like “ask our staff about some allergen-safe choices”. It’s all a matter of perspective…. Typically my son would go with me to a place like that and get a water or yogurt, or smoothie and he’d be fine. Instead, everywhere he looked it said “not welcome” and “not safe” and he bolted…. You are so right, it’s really not ok. Thank you so much for your comment!

  21. I can relate, although we’re not yet as cautious, although I wonder whether we should be. My son, when he was two, ate a cashew my husband gave him and turned flaming red within seconds. We had a scratch test done and he tested positive for cashews and peanuts. He’d never had a peanut, so it was worrisome because the docs said that the other tree nuts should be avoided – just because there wasn’t a reaction didn’t mean that he wasn’t affected – just that his histamine levels weren’t high enough as he’d never been exposed to register.
    We’re supposed to qualify for a more in-depth blood test this year and I really look forward to having more answers. Sigh. Sorry that your son is dealing with this being a drag (it is!!!) and wow – never thought about kissing!

    • Kristi, thanks so much for your comment. When my son was maybe 3-5, I don’t think I really understood the allergy or the severity of it. And used to take him to restaurants or other people’s houses without much worry except “staying away from nuts”. And bought items w/out worrying about cross-contamination. But then it changed. I think the first time was when he reacted to peanut oil in the air. Then there was a time on an airplane, I think he was 5, where he was coughing and sneezing throughout, and I kept draping myself over him to protect him from whatever was making him do that (the guy eating peanuts next to me!!?) while he was pumped up on benadryl. I never want to be in that situation again, it was horrifying. At this point, he started changing too, more aware of the smell of it and how it made him feel. You could see he didn’t want to go to those potlucks w/unknown foods anymore. Or out to a restaurant because it’s easier just to stay home. I booked another consult with an allergist (because the 1st one when he was 2 didn’t give us any information) and then started reading up on it more, and became much, much more aware of what I needed to do better. So maybe you are doing just fine. We learned when he was 2 how severe this was, because we took him out and gave him pad thai and he reacted– but since your experience is through the scratch test, I can see it is a little harder to believe. And definitely get that allergists recommendation–that does help a ton. I think they are much better at giving parents tools on how to navigate this life where they really didn’t a few years ago.

  22. Robin-
    It was like you were speaking my thoughts. We live through it everday and I feel like people do not understand without the constant vigilance it’s a life and not just a sneeze or a rash. I really see the overwhelming anxiety he sometimes shows and though rarely does he let it crack through his happy facade, it is sometimes so stark I just die a little inside. We teach them to be safe and we give them the skills to handle the allergy life, but food is constantly bombarding him and then I feel guilty so I let him eat some of the things I wouldn’t let my girls eat because there is so much less for him to enjoy. You certainly can’t escape food!

    • Melissa, so great to hear from you and thank you for your comment and support. I totally feel the same–about sometimes overcompensating because of the disappointment over food allergy matters. I probably don’t do this with extra food, as my son isn’t super motivated by that, unless others are eating it in front of him…but probably with extra Minecraft time, and just being a “softy” of a mom in most other ways…. Such a really good point, I hadn’t thought of! Probably something to re-think!

  23. Thank you for reposting I missed the first one. This is truely how I feel. I also hate food allergies. I always remember what the doctor said how you deal with food allergies that’s how they will deal with it too.. It really makes me feel depressed when I see all the times she gets left out. I believe food allergy awareness and educating others About food allergies is so important but then you get people who just dont care what do you do about that . I remember the time whole family went out to a pizza restaurant wasn’t thinking about what if they order dessert but it happened all her cousins ordered these-great looking deserts which I was hoping there moms her aunts would say no. So I had to leave the restaurant and buy her a safe cupcake thank God next door at the same time crying in line feeling all alone. I will definetely think ahead next time. Or the time I had ask the man at the counter selling pizza twice about if there was any peanuts or cross contamination issues who yelled at me in front of my daughter after he already told me no there were no peanuts. I couple not even yell back for fear or not being served and my daughter being hungry. No one really truly understands what we the parents of food allergy children have to live with every day ,the anxiety that you feel every time your child eats, or the time your phone rings during lunch hour at school , I could go on ….and I am so thankful for these support groups. For now I just pray and try to take one day at a time.

    • Sue, thank you so much for connecting and commenting. I can relate to every experience you mention. As parents, people assume we want to be these overbearing helicopter moms but honestly, we want nothing less…but we are forced to ask these question, and in return don’t really get the understanding we need from others, and sometimes, like you mentioned, the abuse with rude comments back. Your comment about your Drs advice–I almost feel like that gets me into trouble, because all these years I have been trying to model “go with the flow” behavior–oh yeah, he’s fine with his own snack!” but really, I feel now that I know it does bother him, that I wasn’t really addressing his needs, I was glossing over them, and telling him that how he truly felt inside was something he should just ignore. Know what I mean? Hard to explain. Anyway, thank you again for adding to the discussion!

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