The Lonely Life of a Food Allergy Mom

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There’s one part of every kid birthday party I hate: the food part.

It’s always pizza and cake, and usually my son doesn’t care that he can’t have any. He eats his meal before the party, and I bring his dairy-free, wheat-free, egg-free, peanut-free cupcake in a little Tupperware.

But during the last party we went to, when the pizza came out and all the kids dove in, my son lowered his head, and I heard his little voice say: “I wish I could have some food.”

And my heart broke in half.

Mason is 5 years old and off-the-charts allergic to wheat, dairy, eggs, peanuts, and tree nuts. He’s had the allergies since birth, and they were diagnosed through blood testing, so he’s never actually touched any of those foods. Which means no ice cream, no peanut butter and jelly, no pizza, no mac and cheese, no milk and cookies, no pretty much any common kids’ food you can think of—ever.

He’s my eldest, so I’ve never experienced motherhood without food allergies. Which is probably for the best.

I can only imagine how nice it must be to be able to go places without a bag full of food, because you know you can always “find something.” To show up at a birthday party with nothing but your kid and your gift (and to not stay up late the night before, whipping up another batch of those dang allergy-friendly cupcakes). To send your kid to a friend’s house for a playdate without first explaining to the mom that he probably can’t eat anything in the cupboard—but like no seriously, he could die.

To send your kid to school without Epi-pens and Benadryl and an inhaler and a carefully documented, pediatrician and school nurse approved Allergy Plan, hoping to God that the teachers remember and then diligently monitor his allergies (on top of the 4 million other things they have to remember and do) and that some innocent kid doesn’t randomly offer your kid a cookie or a piece of bread.

People say that food allergies are so common these days. Everyone who hears about Mason’s allergies has a friend or a coworker or a cousin who’s dealing with them, and every teacher I talk to is “very comfortable” dealing with them.

But still, somehow, I don’t know anyone with kids dealing with multiple food allergies. There’s no one else in our family who’s had them, going as extended as you like. And every time I tell someone new about Mason’s situation, I get the same blank, confused expression—like, you’re telling me that perfectly healthy looking kid has never had a glass of milk in his life?

It’s hard for people to understand food allergies, or to take them seriously, because how could something as harmless as a glass of milk—literally every human’s first form of sustenance—be anyone’s kryptonite? How could a kid who doesn’t look sick at all be capable of violent, potentially deadly reactions to such an innocuous thing as food?

It sounds so ridiculous that it’s almost hard for me to wrap my head around it sometimes. After 5 years of extreme vigilance and only a handful of (relatively minor) blips and subsequent reactions, even we are getting a little blasé. I almost let Mason try some fries at a restaurant recently, having no idea what was in them or how they were made, because, gosh, they’re just fried potatoes and maybe it’ll be ok??

But then I hear the stories. About a teenager who died of an anaphylactic reaction to something unexpectedly cooked in peanut oil. About a boy who died after eating at a restaurant on vacation, even though the parents had done their due diligence in discussing the meal with the chef in detail. About a toddler who died after eating something she’d eaten a million times before, thanks to an undisclosed ingredient change in a packaged food, leaving a shattered mother to beat herself up forever for her tiny mistake.

It’s hard because, as horrible and inconvenient and frustrating as food allergies are, they are not cancer. They are not a heart or brain disease. They are not countless other afflictions that might be considered “worse.”

And yet, food allergies come with the same constant, looming fear: the possibility of death. It just happens to be wrapped up in a relatively-healthy-looking package, so that people have a hard time comprehending the severity of the situation or accepting that the threat is actually there. (Which, of course, compounds the danger even more.)

Mason, looking totally healthy and “normal.”

For many food allergy moms, the anxiety is crippling. I’ve read about moms who homeschool because of their kids’ allergies, and who are on anxiety meds themselves just to deal with all the fear. They don’t get babysitters, they don’t go on vacations, they don’t separate from their kids in any way—because who knows what could happen, and God forbid that thing happens when Mom and Dad aren’t there.

One of the hardest parts about the whole thing is that we don’t know what could happen with any particular exposure. Maybe nothing—but maybe everything.

In our case, my son was diagnosed when he was 6 months old and still exclusively breastfeeding, so we have never purposefully fed him any of his allergens. As a baby, he would only nurse for 5 minutes at a time, and then promptly vomit most of it up. I would literally cup both of my hands under his mouth with the burp cloth, after every feeding, and wait.

My doctor smiled and assured me that “babies spit up,” and encouraged me to keep feeding “on demand.” She even managed to explain away my poor baby’s head-to-toe eczema and unrelenting cradle cap, prescribing tub after tub of Aquafor and assuring us that it would pass.     

I was a brand new mom and didn’t know any different—I assumed this must be normal.

It wasn’t until we started introducing solid foods and Mason got some hives around his mouth after trying bananas—BANANAS—that our doctor suggested food allergy testing. On a scale of 0 to 100, with <5 being normal reactivity levels, Mason’s tests came back “>100”—literally unreadably high—for a dozen different foods.

I wasn’t devastated, only because I was too busy being relieved to have answers. Finally, I knew why this motherhood experience hadn’t so far been anything like the blissful, breezy experiences my friends seemed to be having. Finally, I could stop feeling like a crazy, paranoid first-time mom.

Finally, I knew how to take care of my own child.

Determined to keep breastfeeding, thinking that my poor allergy baby needed all of the “liquid gold” nutritional help he could get, I dropped those dozen foods overnight. For almost 6 months, until just shy of Mason’s first birthday, I lived on plain roasted turkey, gluten-free granola, a few select fruits…and not a lot else. I forgot food even tasted good—I just had to eat things, a few times a day, that wouldn’t make my baby sick.

It wasn’t hard. Really, none of the things I’ve had to do as an allergy mom have been, relatively speaking. I’m not scheduling surgeries for my son—I’m just swapping out peanut butter for sunflower butter, wheat bread for gluten-free brown rice bread, cow’s milk for coconut milk.

When it’s for your kid, and you know their health and life depend on it, you don’t really think about it—you just do it. After 5 years, I’m pretty used to dealing with food allergies, to the point where the day-to-day work (substituting ingredients, making two different dinners every day) is mostly automated, and it doesn’t take up that much space in my brain anymore.

But still: being a food allergy mom is lonely.

It’s really, really lonely.

It’s lonely being the only mom you know who has to bring cupcakes to parties and have extra meetings with teachers and nurses. Who drives 2 hours twice a year to take her son to a special allergist. Who can’t do “normal” things like swing through a drive-through for the kids’ dinner or take the kids out for ice cream or leave the house without a carefully scripted food plan.

I’m the only mom I know whose son constantly asks, “am I allergic to this?” Whose grocery bill is double what it would otherwise be, due to all the special everything-free alternatives in the cart.

It’s hard watching other moms navigate motherhood without the added stress of food allergies. (Because yes, of course I’m jealous—and of something most moms don’t even recognize as a blessing.) It’s hard swallowing all sorts of emotions when people say things like, “I’m so glad I don’t have to deal with that!”

It’s hard being different, in our society, in general. So on top of the fear of accidental exposure, there’s the fear of bullying and exclusion.

Oh, and then there’s the mom guilt. I’ve spent the past 5 years analyzing my pregnancy with Mason, and coming up empty handed. What did I do wrong? I took my prenatals, I ate relatively healthfully, I exercised, I avoided tuna and deli meat and alcohol and soft cheese.

Still, every time someone asks, “what do you think caused it?” I’m plunged right back into the guilt zone.

To date, we have no idea what causes food allergies. Some people have their beliefs—“it’s all the chemicals in our food” or “it’s that antibiotic hand soap” or “people are just too clean these days”—but my family eats real foods, we use all-natural products, and sure, I like a tidy house, but I’m definitely no clean freak. So why us? Why our son?

Our second son is allergy-free, lucky guy, and I haven’t spent a single second looking back on my pregnancy with him. And now that I’m pregnant with our third, I can only pray that she’ll come out allergy-free as well, for her sake.

But if she does end up with food allergies, at least Mason won’t be so alone.  

Because really, most days, it’s it the loneliness that’s the hardest part.

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Kim
Kim grew up in Minnesota, but moved to Madison to attend the UW and fell in love with the city’s spirit and culture. She's married with three sweet kiddos - Mason, Joshua, and Leah. When she’s not racing monster trucks across furniture or pretending to be interested in video games, she’s working on freelance writing projects or teaching strength training classes through her small fitness business, Lioness Fitness. Kim's a food allergy mom, which means she can read a food label like nobody’s business. She's also a sucker for good wine, good sushi, a good book, and ANY beach.

35 COMMENTS

  1. I love your post. We’ve met only in passing a few times. I have an 18 month old with all the same allergies, but wheat. I’ve already felt all these emotions and we have only been doing it for 9 months. I’m also pregnant with my second and wonder if we will face the same obstacles, but then think can I really have one dairy free kid and one who does consume it?

    • Your answer to total food freedom is in Long Beach, CA. I have two sons in the socalfoodallergy.org and they have over 8 severe food allergies. People travel all over the world to be treated by Dr. Randhawa. I referred another blogger allergy mum from Canada and she is doing it. It’s really remarkable, precise and safe approach. I just don’t want you to think there isn’t a way to help your child. It’s not too good to be true.

  2. I can relate to so much of what you wrote! My oldest is 10 now, he has five food allergies & many environmental allergies. My other two have none. We dealt with the head-to-toe eczema, the “he’s a happy spitter, it’s okay,” the longing for answers…it’s so exhausting! & so stressful, & expensive! & unfortunately refreshing, to know we are not alone. Thank you for sharing your story!

    • My son is 10 and anaphylactic to 13 foods.
      I get it.
      I was reading this and just nodding and nodding.
      We homeschool bc of food allergies.
      I have anxiety disorder bc of allergies.
      I hate food with the fire of a thousand suns.

      My other 2 sons are ONLY anaphylactic to 2 foods (egg and peanut) and it’s a walk in the park in comparison to my oldest. Which is weird, but true.

      It’s so tough.

      Just wanted to comment. It’s nice to not feel so alone in this.

  3. Your blog post made my heart hurt. I am wondering if there is a food allergy support group not too far from you that you could join to meet others (in real life and not just online!) in the same situation. Have you tried contacting the folks at http://foodallergywis.org/? I remember when my son was first diagnosed, I knew no one in the same situation. The internet helped SO much, and I met many people in the same situation online, but it is so much nicer to meet in person! Wishing you all the best. Keep up the great, heartfelt writing!

  4. Thank you so much for writing this. I am very new to being a food allergy mom. My youngest (1 year old daughter) was just diagnosed with egg & peanut allergies this past week and I immediately felt very overwhelmed. I also felt guilty, wondering what I did wrong during pregnancy. There is so much I need to learn & I hope it will become second nature as it clearly is for you. Thanks again for telling your story.

  5. Thank you so much for sharing. Our allergy child is starting preschool on Wednesday and I’m literally paralyzed with anxiety thinking of it. Packing his special lunches and snacks every day. Hoping he doesn’t accidentally get exposed. Hoping he doesn’t feel left out or separated from the other children. There are certainly much worse things but I’d be lying if I said that having a child with food allergies isn’t extremely stressful and isolating.

  6. I so relate to this article! My 3 year old daughter has wheat, peanut and egg allergies that we found out about after an ER trip on father’s day after letting her try french toast when she was just under a year old. Same thing with the constant throwing up after nursing and thinking she was just a happy spitter. It is tough and I still feel guilty wondering what I did to cause it since my older son has no allergies and we have no family history of food allergies. My husband and I both had bad asthma as children and a doctor explained to me once that food allergies, eczema and asthma are a triad of connected issues and they can express themselves differently in different people so for my husband and me it was asthma and for our daughter it’s food allergies and eczema. Who knows if I understood correctly or if I am explaining that right but it was a glimmer of hope for me that it wasn’t some terrible thing I did to cause it all. Keep up the good work mamas!

  7. I’m right there with you. My son has food allergies as well and was diagnosed when he was two. He also has asthma and eczema. It breaks my heart every time we go to a party, or there’s a school function where he can’t have the food. I hate seeing his sad face and hearing him say, “I wish I could have that food” or “I hate my food allergies.” I wish I could take them away from him and that I was the one who had them instead. And it is SO HARD when those around you just don’t/can’t understand what it’s like. I am so very grateful for the friends who try so hard to help, though. Like today, we are going to a birthday party and the mom is making all of the food nut free for my son. Just for him! It’s so amazing! When I told him he would be able to eat the cake, snacks, and candy, he was so excited. The look on his face was priceless and I will never forget it. I wish there were more people like her who understood and helped our little with food allergies. Thank you so much for sharing your heart and your story!

  8. I am pretty sure you hacked into my brain, stole my thoughts, and wrote this article. I was having a really rough being an allergy mom sucks day and I really needed to see this today. My daughter has dairy, egg, and avocado allergies for sure we are about to test peanut, some of the tree nuts, fish, and shellfish. I am so nervous. I have literally developed an anxiety disorder over it. We are homeschooling for kindergarten I just can’t with the public schools where we live feel confident she is safe. It is super lonely, I wish you lived in Georgia so we could hang out.

  9. Thank you for writing this! Our daughter has a peanut allergy. Her IgE level was >100.

    I was incredibly lonely also. I was angry, isolated, and terribly sad. My relationships with friends and family were strained and our marriage was tested.

    In 2014, our then 5yo daughter started OIT (oral immunotherapy) with Dr Richard Wasserman. We drove from KS to TX for 24 consecutive visits. At the end of the gradual and steady exposure to her allergen she was able to successfully eat 24 peanuts. Her most recent bloodwork showed a significantly lower IgE level of 38.6. She still maintains a daily desensitization dose of 14 peanut m&m’s. OIT has been a game changer for our entire family. Anxiety, loneliness, isolation, etc are all gone.

    Please look at this website and possibly seek a consultation with a provider to learn more. http://www.oit101.org

    • Our 10 year old is also doing OIT! Her IgE is over 100 for peanuts as well, and she can now handle 8 peanuts twice per day. I cannot explain the huge weight of anxiety that has been lifted off of our shoulders after spending 9 years feeling just like this author. Sending big hugs to this mom and all of the allergy parents out there fighting to keep our kids safe!

  10. Kim I am living a parcel life in CT and write for Fairfield CountyMoms Blog. In fact I’ve written many posts about being an allergy mom. If you want to connect, feel free to pm me Maria ASette

  11. We are right there with you. Our 4 year old has a long long long list and ana food allergies. We have started to step our toes into the water of regular life = food allergies. It is scary, but we are doing pretty well so far! I found a private Montessori school that was already Peanut. Tree nut free. (I’m an educator and have fallen in love with it.) There was already several kids in the class with epic pens…hanging on the wall of the 3-5 year old classroom. Our list, the inhaler, the other medications, the risks….they listened…they were nervous, we were nervous. We decided to start half days/3 days a week. We went through the classroom and outside looking for potential problems. The decision was made to only have fruit for snack on our daughters days. We took a deep breath and lingered near by. One week down…you gave her a gummy bear? I know you read the ingredients, but no, nothing that does not come from home! Birthday parties? spontaneous? “Okay here is a stash of her goodies.” Please keep her away from the other kids and make sure they all wash their hands afterward. 5 months so far with no reactions, no breathing treatments, tons of smiles and lots of self advocacy! Oh and as for Birthday parties…we discovered a trick. We found a nut free bakery (I had no idea they existed). I then posted pictures all over fb when a family went out of their way to order a nut free, egg free, milk free, coconut free (the list goes on) cake for out little one! Now lots of friends are doing it! People care, they just don’t know to do it until they see others making it happen and the smile on our faces! Huge hugs! Oh and allergy Moms unite! Start a meet-up group if you can. We were luck enough to have a few Mom’s with older kids make it happen in our community – now it is my turn to plan the food free halloween bash and Easter egg hunt! I know it sucks, but reach out and if there isn’t a community, make one. You got this strong brave exhausted overwhelmed loving Mama!

  12. Wow, that was an amazing read! Thank you so much for this!!!! You seriously tugged at my heart… I really thought I was reading my own thoughts. This is me EVERY. SINGLE. DAY!! Almost to the T. My 3 year old is allergic to peanut, dairy, egg, wheat, beef, pork (cat, dog, & possible environmentals). I’ve suspected it since he was 4 months old (just breastfed) & went to many dermatologists for his skin (he also has allergies/irritations to certain products) & pediatrician/allergist appts until finally he has a reaction at 9 months old to a yogurt melt, they finally did testing. I have developed anxiety, I let no one make food for him, even having some family member watch him is hard bc they don’t get it. They think it’s “no big deal” it’s “just” food. I talk about it ALL THE TIME bc I think it helps me cope with it. We bring food everywhere for him, as well as for me now. Our second son is 7 months old and showed signs basically at birth, got tested and he’s peanut, dairy, egg, and soy so far. I’m not happy he has allergies but was almost relieved they had almost the same allergies to make it a little easier food wise in our home. Just wanted to share a little of my story to know you are NOT alone!!! I feel very lonely as well, especially now that my 3 year old is starting to realize things and asked me the other day if he could have the cake that was at the bday party we were at. But as a fellow food allergy momma, I totally feel for you and understand completely. Thanks again for sharing your story and reminding me as well I’m not the only one out there who is doing this!!! 🙂

  13. This post hit home my 1st currently 11 yrs old had a milk allergy which he out grew and an egg allergy but can handled eggs baked in breads cakes etc… we have been given the ok to try “fresh eggs” but than there’s my 2nd child she’s 9 yrs old highly allergic to wheat contact reactive and also has a dairy allergy. We learned about the dairy allergy by 3 weeks didnt learn about the wheat allergy till about 13 months when my mom gave her wheat crackers we are on a waiting list for a food challenge for the dairy allergy her last trip to the ER by ambulance was for a contact reaction to wheat she didn’t even eat anything but her gluten-free cereal bars she eats all the time a friend had eaten a wheat cereal bar and touched her they were playing around we started with benadryl but when she started having trouble breathing we used her epipen. So my oldest is scared to try “fresh eggs” since he’s seen first hand with his little sister what can happen during a severe reaction so i don’t push the issue it’s one more thing we don’t have to worry about. There school is terrible about handling food allergies and I don’t personally know anyone that handles severe allergies nor anyone that carries epipens everywhere and allergy safe foods.

  14. I just wanted you to know that it does get better, and you are not alone (obviously with all the comments from other mom’s). But also that Mason is not alone. I have several severe food allergies myself (artificial sweeteners being the worst of them, and the hardest to avoid) and it’s difficult with the reading every label, knowing every name for every substance to look for (seriously one common artificial sweetener goes by 3 different names) but it does get easier. In the 30 years my family and I have been dealing with my allergies a lot has changed. And it will continue to get easier as more people are aware of allergens.

  15. Hi Kim: We are visiting Madison next week to see my in-laws and I ran across your blog when I was googling “food allergies” and “Madison, WI”. Are there any recommendations for restaurants we can visit in the area that might be able to accommodate my oldest son’s allergies? He has significant allergies to milk, eggs, peanuts, tree nuts, sesame and shellfish. The grandparents want to go out to dinner with us and are asking for restaurant suggestions. Do you know of any that might be accommodating? We are not aware of the area and never visit restaurant generally due to his allergies. Let me know. Thanks,!!

  16. Reading this brought tears to my eyes; you expressed so well my experience. We deal with anaphylactic allergies to wheat and egg, along with daily intolerance. Shellfish and nuts we don’t know about because I can’t even face deliberately trying them… The fear of losing my son never leaves me and others really don’t understand how stressful that is to live with on a daily basis, not even my husband. Even when life is going along quietly, a reaction can come from nowhere and pull the rug out from underneath you again. Today it was a teacher who knew about my son’s wheat allergy, but thought it was OK to conduct a science experiment with flour in the classroom with all the children gathered around to watch…

  17. Kim, reading this brought tears to my eyes. I can relate to everything you are saying. Being a food allergy mom is tough. Having to manage multiple food allergies is so stressful and it does feel lonely at times. My little guy is 4 and is Anaphylactic to 8 different things and has over 30 food allergies that we know of. His safe food list is shorter than his food allergy list. Trying new foods is really scary since he’s reacted to 90% of the foods he’s tried. The mom guilt can be crippling at times. It’s been 2 years since he went into anaphylaxis from a soup I made him. Turns out he was allergic to everything in it. I had given him the foods separately and thought he did ok with them. Pureeing them together created the perfect storm for anaphylaxis . It happened so fast, I’m so grateful to have had an EPI pen and used it right away. Riding in the ambulance and being in the hospital was really intense and I am so grateful for everyone who helped stabilize him.
    Navigating new situations has been interesting and I’m still learning how to advocate for him. So far most people have been very kind when they find out about his situation. My neighborhood has hosted non food events, just so he could participate. I have been blown away by people’s kindness and concern. I know other people will never truly understand what it’s like. It’s just something you have to experience to fully understand. I want you to know you are not alone. Thank you for telling your story. Best wishes.

  18. Thank you for writing this blog. My two kids has similar allergies and I also feel so so very lonely at times. They were also diagnosed as infants four months old. DD was covered head to toe in eczema, cried all night long, and had bloody stools. The doctors dismissed it could be allergies and she was prescribed steroid creams. We finally got to see an allergist at 6 months and I was happy we knew what was wrong but at the same time devastated at the impact of what life will be.

  19. My son also has all the allergies. Egg milk wheat peanuts and treenuts (except almonds ) and banana
    Your blog I finished and cried !! I always feel so lonely. Not even near and dear one understand what am going through !!
    I would like to know if your son has outgrew any of his allergies ? Mine started tolerating cooked form of banana. Even that small change means a world to me..
    please let me get in touch with you thru FB

    • I can relate to this so much. My son is 10 mos and has had food allergies since about 3 weeks old. I’ve EBF, but he reacted from what I was eating. We’ve tried some solid foods, but I’m so concerned to try new foods because of the reactions he’s had so far. I’m worried he has some undiagnosed food or environmental allergens. He reacts by contact to foods he hasn’t ingested as well. It can be so scary. At 4 mos the blood test only showed one allergen, but at 9 mos he had 6. The doctor said it can change and he can outgrow them, but his reactions seem to be escalating.
      I’m sorry you all are going through this. It’s nice to know I’m not the only one. We should start an online group to connect.

  20. Your article is very good and very valuable knowledge in it.

    Your immune system produces substances known as antibodies. When you have allergies, your immune system makes antibodies that identify a particular allergen as harmful, even though it isn’t. When you come into contact with the allergen, your immune system’s reaction can inflame your skin, sinuses, airways or digestive system.

    The severity of allergies varies from person to person and can range from minor irritation to anaphylaxis — a potentially life-threatening emergency. While most allergies can’t be cured, treatments can help relieve your allergy symptoms.

    But before buying the meds from online pharmacy always consult with your doctor and there are many online drug stores on which we can buy meds for anti alcoholism, mygenericpharmacy is one of them which i have searched.

  21. Thanks so much for writing this. My two children have multiple allergies. I didn’t learn of them until we became expats working abroad in South Korea. So along with culture shock and challenging language barriers; I had to learn about allergies and management of them while residing in a foreign country where the general public is not as sensitive to food allergies compared to the US. I had to beg just to get a prescription of one Epipen. It has been an extremely lonely process for me; especially since the pool of “westerners”, like me, is very small.

    I wished I had known about the baby’s allergies prior to moving. I had my suspicions at the second month mark when 5+ hours of colicky crying every day, milk strikes (refusal of breast & bottle) were occurring, next the doc said I wasn’t changing the baby’s diaper enough because of the rashes (which was absolutely far from the truth).

    When we arrived in S.Korea my youngest was 3 months old and my oldest was 4. Through elimination dieting, while breastfeeding, I was able to see my baby’s improvements when dairy was cut out. So I found a South Korean manufactured Hypoallergenic baby formula and supplemented out of fear that breast milk wouldn’t be enough or couldn’t be sustained. (The S.Korean brand is “Maeil” Absolute HA baby formula & it smells much more pleasant than Nutramigen). The baby is 20 months now and is still drinking it today.

    After navigating the health care system here, in S.Korea, I have learned through blood tests that my youngest is allergic to peanut, egg white, dairy, wheat and garlic; the older child: walnut, dog, peanut and sesame. I learned about cross-reactions as a result of my oldest going through anaphylactic shock. The one Epipen I had begged for was used to save him.

    We have started OIT in South Korea on my youngest and she is showing progress on egg, wheat and dairy. OIT for walnuts is being incorporated now but, is a constant threat to my son. It’s stressful just having the walnuts in my cabinet knowing it could kill my son but, the Allergist here says it’s a must to keep my daughter safe in the future. My son will be starting OIT here soon too.

    As my little family’s journey through our allergy experience continues to develop, I will continue to remain vigilant. My little ones understand. The baby won’t go near playdough. My son won’t go near nuts & has started asking for a pet cat instead of a dog. My son is starting to look out for the baby too. It is a lonely process for me but, blogs like these and online communities really help. Many thanks for blogging!

  22. My food allergy group posted this. This is so true of the food allergy life. My son is 6.5 years old and allergic to dairy and soy. It is lonely. So lonely. My anxiety is on high alert all the time. I am constantly looking around for potential food products my son could react to. He is also contact reactive. The random hives we deal with is so hard at times. I just want him to be normal kid for once! My grocery bill is double what it should be. We are also a dairy and soy free home so our son has one safe place in this world. I nursed my son for 18 months. I constantly question what I did wrong while pregnant. Our allergist thought he would out grow around 5 years old. Not yet. Thank you for telling your story because this is what all food allergy moms go through everyday. We rarely attend parties(it is just too risky) and often leave story time early when the snacks come out.

  23. This is an old post but I happened to find it while looking for answers to my own anxiety. And having shared it on the Facebook food allergy moms group, so many people loved it and could relate to it. So thank you for sharing how you feel.

    I have signed up my son for a new treatment which is only offered in Long Beach, CA – so across the country we fly. Our first appointment is Monday, thus the relentless anxiety. But as you said when it comes to ensuring the safety and well being of your child, nothing is hard.

    • We’re also signed up!! Bringing me so much hope. And such a break from the loneliness. The SoCal group is amazing! Best of luck

  24. As I was reading your entry, I couldn’t help but keep saying, “yes, yes, yes…” You really captured the emotions that I believe so many food allergy moms go through. Thank you for sharing! Your post is invaluable!💗

  25. I’ve never written on a message board before or replied to a post I’ve seen on any website. This is my first. This story sums up my life exactly. My son was extremely sick (rash, digestive issues) from birth and every doctor told me it was nothing. When we finally learned at four months that it was allergy I was thrilled. At least I had an answer and knew the cause. It soon became clear how lonely and difficult allergy life is. It can’t be described with mere words and absolutely no one – not even the most involved and loving grandmother – can fully comprehend the burden we bear and the immense responsibility we have. Thank you for putting my experience into words. It is beyond comforting to know that I am not alone in this and that others like me exist.

    We are starting a form of OIT with my son in the coming months. It’s called TIP and in Long Beach CA. We will be flying from NY. Look it up if you’re interested. Much more effective than traditional OIT.

    And I’m here if you ever want to talk! I know I do. Xo

  26. Great job capturing how so many parents feel. It helps so much to be reminded that we are not alone. And to hear from other people who have experienced almost the exact same thing

  27. Wow I started to tear up when I read this because I feel like I could have written the exact same story to the tee. Old was diagnosed with the exact same food allergies at 6 months after exclusively breastfeeding, and 6 months of torture as I watched my baby cry, spit up everytime she fed and fuss the remainder of the day. And the doctors thinking you’re an overreactive mom. And other parents or teachers treating you like a hypersensitive parent who is just trying to be difficult when asking for special accommodations.
    Thank you for writing this. It is interesting thst as “common” as it’s becoming, there seem to be few people around to relate.

  28. You are NOT alone Kim! Like 40% of all other kiddos with food allergy diagnoses, my eldest is not allergic to 1 of the top 8, but 3 of them. Between Vegenaise (for tuna fish) and Sun butter (with jelly, of course) I make lunch for school work but with an egg allergy there’s always the pain/guilt associated with not being able to eat cake at their friends’ birthday parties. I personally do my best to bring more awareness to the issue for example when it’s our turn to host a birthday party by requesting info about food allergies/sensitivities (such as gluten) with everyone’s RSVP so that I can make sure that all friends can share the same kind of treat TOGETHER.

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