Allergist Mom: What My Food Allergic Kids Taught Me
It was several months later on a pretty summer afternoon when it nearly did happen. I was on call, so my parents were at our house helping with the boys. I was so excited to see the kids when I got home from work that I let them eat a little treat before dinner: homemade allergy-safe cookies.
Gino’s Big Reaction
It was not even a minute after his first bite when my dad yelled out my name and carried Gino to me. When I took him in my arms, I felt his weight; it is the strongest memory I have of that moment. He wasn’t holding any of it on his own. He was completely limp in my arms.
His coloring grew pale and grey, and he began to turn blue around his lips, so I screamed for the EpiPen Jr. Even though I can put teeny tiny umbilical lines into two-pound babies without a tremor, with my own child, I was shaking so much that I could hardly remove the gigantic gray cap from the EpiPen Jr. When I finally did, I jabbed it into his thigh with a thud and counted to 10.
Gino began vomiting profusely, mucous was bubbling out of his nose, and he was turning more and more blue. I could feel myself losing him and I believed that he was dying in my arms – dying from a cookie. Specifically, it would turn out, not from milk, but from the egg in that cookie.
Thankfully, the epinephrine began to work. His coloring returned and I felt an overwhelming sense of relief as he started to open his eyes again. That night in the hospital I remember crying and clutching to Gino for dear life, and thanking God that I could.
The Allergy List Grows and Grows
After this reaction, the list of foods Gino had to avoid due to serious reactions began to grow and grow until it included milk, egg, wheat, corn, oat, barley, grape, mustard, sesame, green pea, pinto beans, lentil beans, garlic, chicken, turkey, peanut, tree nuts, fish and shellfish.
Gino’s twin brother, Milo, has severe allergic reactions to soy and egg. Our youngest, Lucy, had anaphylaxis to milk at four months old requiring two doses of epinephrine. I spent most of the first several years of life raising children with multiple life-threatening food allergies feeling woefully unprepared. I felt alone, scared and confused.
I often think about why I felt this way and what could have been done to lessen those feelings.
Next page: Toward improved support
Larissa
Thank you so much for this. I am not a doctor but, could so relate. My first time in the grocery store, I cried in the bread aisle. A kind employee patiently helped me look for safe breads (my daughter has a sesame allergy).
Debbie Bruce
This is the story EVERYONE needs to hear…our allergists, our families, our friends, our schools, our politicians…
This is the story that need to be told because it covers, first hand, the simplistic instructions we are given and how those without intimate experience with anaphylaxis respond to those with anaphylaxis. How often do we hear – “so just avoid the allergen” or my personal favourite…”well your kids are old enough to take care of themselves now”.Until you live it -you do not truly understand what “just avoiding the allgergen” takes or that it doesn’t matter the age – a 30 year old is every bit as vulnerable as a young child – sometimes more so…
I truly do believe everything happens for a reason. Maybe you were meant to share this story from both sides of anaphylaxis, for those of us who can’t alway find the right words…
Thank you, Sarah for such honest sharing!
Krystyne Elliott
Thank you so much for this article! Although I would never wish allergies on anyone, i have always wished that allergist could see our side and how scary it is to be there. I have cried standing in the grocery store, and it has been 6 years since we got the diagnosis. I have become the allergy mom in our area and help in the schools and with other families. I have even gone grocery shopping with other moms whos kids have been just diagnoswd. I wish there had been someone there for me. We felt so alone to begin with.
Susan
What a beautifully written, powerful story. I’m crying at my desk at work right now because I so clearly remember having those same experiences. I’m looking forward to reading your blog now. Thank you.
Fiona
Thank you so much for writing this article – I was so moved by your experience. As a person with multiple food allergies it can be a daily challenge. I also have twins and I remember the dread I felt when we had them allergy tested for the first time – I didn’t sleep the evening before the appointment. For now my boys don’t have food allergies by I also know that there is no certainty for the future. Your article really highlighted the emotional experience of allergies – the parental fear and impact on families. Being a parent is hard enough and that fear becomes multiplied when allergies are involved. I’m sorry to hear that you are not practicing allergy medicine – however, with your experience it sounds like you have some wonderful ideas for providing support for families. Also, I think more public information is needed along with better food labels and good patient education (so we can protect ourselves) is so important. Thank you again for your important and very moving article.
Donnie
I have Celiac and have to avoid gluten, and I’m severely allergic to corn, sulfites, onion/garlic and other foods. It is getting impossible to find foods and non-food products that are free of corn and the sulfites that are used in the wet-milling of corn. And sulfites are used to bleach, process and package other foods and products. Corn and sulfites are often not properly labeled, and in many cases, not labeled at all. Eating can be very hazardous to our health.
Kelly Martin
Thank you for such a powerful article – to just call it powerful is actually an understatement. Sarah very eliquently described my life as an allergic person and how my parents felt after my diagnosis. The worst thing one can feel is alone but we’re not. This article reassures us that there is a large allergic community with resources and skilled professionals. It also tells us that we still need to expand our knowledge and to continue to educate. It’s called being human… Thank, Sarah :)
Kathryn @ Mamacado
Thank you for this article Sarah. I always appreciate your perspective and eloquent writing. It’s difficult to put the emotions of food allergies into words sometimes, but you expressed it well. I hope those who don’t understand food allergies will read this article to gain a different perspective.
Violets
This is such a beautifully written article, thank you for sharing. I’ve often wondered if there was a way to educate the mental health community on food allergies. The process is so overwhelming, and affects the entire family. As you note, drs aren’t equipped to handle the emotional turmoil. It makes sense for them to refer someone struggling to understand and embrace their new restrictions to a therapist. But the mental health professionals I’ve spoken to get side tracked into eating disorder territory.
Alexsandra
This is a great article. Allergies were once something that I had to live with, but now as a Mom, they have grown into my worst nightmare. I have lived with food allergies all my life. I am allergic to anise (the spice) and some cold cuts (allergists don’t know what allergen in cold cuts, too many variables). I always tried to avoid my allergens but have found myself in the hospital several times for stupid mistakes (family party when I let my guard down, etc.) It never seemed like a big deal to me, it was just something I had to live with, like a diabetic has to carry around an insulin needle. However when my oldest son (3 at the time) had his first food allergy to hazelnuts, everything changed. It was my responsibility to make sure he never had contact with a hazelnut again: how could I do that, when I can’t always control the world around me. He already had two severe allergies where I had to administer the epinephrine all because my mom wanted spoil him with a little chocolate treat which contained hazelnut paste or at a birthday party where the cake had traces of hazelnuts. Allergies became not just a small thing that I just had to live with, they were now a terrifying reality that scared me to death. All of a sudden, I was always scared, scared for the safety of my son. I became one of those crazy Moms who stand in the isles of the grocery store for 25 min. reading side labels of every single box, who demands that any party my son attends there has to be a nut free menu and my presence is obligatory, and the kind that carries nut-free snacks as an alternative to dessert when we go to someone else’s house for dinner. Every time I send him to day care, I am terrified even though it is a nut-free environment. The question always remains…what if? It is nice to hear the struggles and pain that other parents go through. It reminds me that I am not alone
Miriam
When I found out that I had food allergies (through a skin prick test where 75% of my back turned into a Christmas tree), a part of me died that day. It was the second most traumatic day of my life. The Food Allergist basically said, “don’t eat any of this” (a list of over 20 different foods) and then left the room.
The problem was, my entire diet ONLY consisted of foods on that list. I had no clue what other foods even existed, how to avoid those foods, and what to do next.
I had a breakdown. I really needed a Nutritionist visit and a Psychiatrist visit scheduled to occur immediately after that diagnosis (I mean same day or at least same week). The Nutritionist could have helped me create a list of new foods to try and maybe some instructions on alternative ways to cook those foods since ALL the normal ingredients in cooking were now no longer available to me. The psychiatrist was necessary because I had just experienced a major trauma that I had no clue how to deal with in any way.
In the end, I was lucky that one of my friends was a farm kid who knew how to cook old world style from scratch of a wide range of foods. She helped me survive and figure out which of the food allergies were real, which ones were false positives, and which ones were false negatives. This process took over 5 years to master.
Since then I have tried to go back to different allergists several times. They could provide me no help at all past skin prick test and RAST tests. I guess it is because the doctors don’t have anything they can do for me. I can’t take any of the allergy medications, because they all contain or are grown on my food allergens. When I have tried, the medications themselves cause a reaction.
Naomi
Learning about allergies and how to avoid them is a daunting process, made more so when the list keeps growing. :-/ I was diagnosed again as an adult, with food allergies that we thought had “gone away” and instead brought friends. Fortunately, my allergist not only is well trained but also knows how it feels to be the one on the other end of the discussion. What I have found most helpful is getting together with others that either have food allergies or have children with food allergies and sharing information. We share information about not only about recipes (success and the “well even the dog runs from that one” lol) but also about where to find allergy friendly items at the best cost. And even better is having a friend to call on when you are out of ideas on what to do, or how to handle a situation, like sending kids to camp for the first time. The ongoing support of having friends that know what it is like is priceless.
nancy popkin
thank you so much for this article. I was there, too! The allergist tells you, no problem you just avoid eating these foods. Like you, ours started with dairy, then it grew to night shade vegetables and shellfish and asthma. And when you go back for a follow up they ask if you if you are still avoiding those foods – as if they are asking you if you still subscribe to the morning paper. I am a nutrition counselor, not an allergist. But I help people change their eating to fit their health needs. And there I was also – on the other side of the situation. If you can figure out how to help the allergy community, count me in! I can join you from the nutrition side of it….
Tanya
Did you not breast-feed your babies?? It helps to reduce allergies! Anyway, allergies happen even after breast-feeding, I did it for 3 full years, so long because I could not give much of “normal” food due to allergies, the first experience with yogurt send us to emergency – it was scary and shocking, I thought there was poison or something in the food (lol)- I had no idea that such things as severe food allergies exist! Now I am an expert. I left my career due to overwhelmingly difficult task of staying away from allergens, there were so many. After so many years – it is better, but food allergies are still present, thankfully there are cookies and ice-cream with no milk, eggs and nuts. It became a norm for us to consider allergenic foods as alien products that do not belong in “our” universe, like milk, eggs, fish, nuts, peanuts, peas (especially yellow!), and some other not horrificly but still allergenic foods. On top of that there is asthma, so breathing the vapours of the “poisonous” food should be avoided too. I never cried in the grocery store, but I do occasionally feel frustrated as it is very difficult to travel somewhere.
Tiffany
Thank you so much for your amazing article, my son Tristan who is now 4 was diagnosed at 6 months with severe food allergies. We did the testing and our allergist gave us the results and sent us on our way. I left with my baby boy who was still breastfeeding having no idea how I was supposed to feed him, all the normal foods that had been a stable part of my diet were now harmful to him. He tested positive for milk, soy, eggs, tree nuts, peanuts, garlic, oranges, green pea, all beans, chicken, wheat, and white potatoes. I remember leaving and being just scared to death of the future and feeling like my allergist just gave us the test results and nothing more. Like how do you make sure your child gets enough of what they need to grow properly, they really need to work with a nutritionist who is also familiar with allergies. We have had so many challenges, but Tristan is an amazing child who deals so well with everything than life has thrown at him. I really do believe that children with allergies teach us so much. Good luck with your children and thank you for bringing this subject to light.
Sarah M. Boudreau-Romano, MD
Thank you to everyone who has left a comment about my article. I greatly appreciate hearing from you! I hope that you will all consider sharing a link to this article with your family and friends – the more that we can educate the public on the reality of life-threatening food allergies, the better it will be for all of us, especially our children. Please also consider becoming part of our online community at theallergistmom.com as well as on Facebook and twitter. Have a wonderful day!
Carrie
Thank you so much for sharing your heartfelt and honest story. I, too, wish that other health care professionals will read your moving personal story. You truly touched my heart. The anguish, fear, and loneliness my family and I have felt over the last 12 years since my son was born with multiple life threatening food allergies came alive in the words you used to describe your experiences. Your ideas about follow-up phone calls and appointments and face-to-face meetings with veteran food allergy families would be extremely beneficial. Cheers to you!!!
Stephanie Von Dehn
Sarah,
I had tears in my eyes as I read this story (my daughter too has multiple life threatening allergies). I wish that everyone in my daughter’s life could read this article. You so eloquently say what so many of us feel. It is so validating to have a medical professional truly understand where us allergy parents are coming from. Your patients are lucky to have you in their lives. All your suggestions for increasing support for families are so needed…and right now! As allergies in kids are on the rise, the need will only grow. I just don’t think there is the recognition from the general medical community about the emotional toll that allergies can have on a family. Thank you for sharing your story!’
Nita
My tears just couldn’t stop while reading your story, especially on the reaction part of your precious children. Thank you so much for sharing it. I have a multiple food allergic daughter who is allergic to wheat, gluten, egg, milk, peanut, tree nuts, ginger, sesame seed and also she is highly allergic to cat danders and has asthma. Our kids are so special to us, so is every moment that happen with them. Thank you again!
Love,
Nita
Ann
Thanks so much for such a great article. I sometimes have that feeling of jealousy…lately about eating out at restaurants. It would be nice to not always worry about what my daughter can and can’t eat! Thanks again!
Marie Routledge
Thank you for this article. It’s always good to know you are not alone.
Now that our food allergic son is 10 he craves more independence, but that means that he has to learn to carry (and keep track of) his Epipen and medication, as well as, know how to use it in an emergency. I’m not sure how to prepare my self or my son for the teen years! I wish there were support groups for the kids to meet and talk about how they deal with social situations. Right now, my son is embarrassed about his allergies and does not want to talk about them. It’s a daily struggle…
mamajoy333
Thank you for writing and publishing this article. Any parent dealing with food allergic children quickly become advocates for further training, awareness, fellowship and support, all out of necessity. I am lucky to have supportive friends, fellow parents of allergic children, and local support groups, but it took time to find and develop a comfort level with all of them. The first few days, weeks, months after diagnosis are a tightrope between fear and faith, overwhelming at times, until you realize and accept that you’ll be doing that balancing act for the rest of your life. Although this article didn’t address issues when your children become school-age, much support is needed to navigate that fear-inducing minefield as well. So hear-hear for the call for more understanding, support, and advocacy. We’re all in this together, heart-to-heart.
Cheryl
Thank you for this. I have read your blog and know your story, but this article is so heartfelt and straight from the mind of every food allergy parent. Thank you. Being jealous of the other mom’s cart as you are on your knees reading labels is a place I have been, and it is that feeling that I go back to whenever someone claims hardship when their child’s pb&j cannot be given up for the sake of my child’s life. Because a turkey sandwich is harder to make in their minds than a peanut butter one, my child has to sit at an exclusion table. The anger flares so easily, but I know there is jealousy beneath it – I wish I could feed my child “whatever” sometimes. The blessing is that because my daughter has food allergies, she is an amazingly healthy eater. She grew up eating real foods, not processed ones, so she prefers carrots to candy, water to juice boxes, and she is trim and strong because of it. We can’t buy bread at Target, we have to go to at least 2-3 grocery stores to complete a shopping trip to work around her food allergies, if she’s in the mood for ice cream there are only about 3 places to buy it and it’s twice as expensive as the regular stuff, but she’s ours and she’s wonderful.
cheryl hough
OMG – three kids with severe allergies. How do you survive? My only one is allergic to: peanuts, nuts, milk, soy, rice, all grains (oats, wheat, rye, etc), pork, shrimp, entire legume family, strawberies, blueberries, cranberries, bananas, kiwi, mango, avocado, latex, apple, cotton seed, sesame seed, tomatoes, dust mites, cat and dog dander. Our whole life revolves around what our daughter can eat and where. To date, we have experienced 3 major analphylaxis attacks requiring the EPI-Pen…knock on wood that will be the last :-)
Anastasia Neal
I have two children with severe allergies. My first daughter spent her first 19 months throwing up food and formula constantly until her pedititian gave us the go ahead to see an allergist. They were both allergic to so many things.she treated me like a number not a person and was also the first person to suggest that they were allergic to milk. Every doctor we saw never mentioned to take her off of milk. Every bit or reading I have done tells you with severe ecsema take milk out of their diet.
I read the article with tears in my eyes because I have been so used to cooking and shoppoing for their allergies i never thought of how hard it has been. Its tough to tell your 2 year old no you cant have the yogurt that I have been buying you for the last year. My heart goes out to every parent reading this. And yes its finally nice to know that we are not alone.
Vicki Jarrett
Thank you so much for sharing your experiences as both a professional and a mother. I too am a mother of a child with severe food allergies and though our allergy specialist in the UK was amazingly supportive (suffering with allergies herself), I still felt quite alone when I left her office.
We are now four years into my sons allergies and have learnt to cope. Like you I want to help others like myself who have cried themselves to sleep at night wondering what they did wrong. Fed up with the trawling of shop after shop for good food for my boy, I am opening a grocery store in my hometown in Australia specifically for Allergy sufferers. It will be a place where they can come for all sorts of food products and associated goods (badges, teeshirts, school bags etc) to raise awareness, and more importantly where families can come in for a chat with someone who has “been there” and feel that they are not alone. No more crying in the supermarket!! To all of you reading this, YOU ARE NOT ALONE! And thanks to articles and websites like this one, we have support.