What we wish we knew about food allergies before our son nearly died...
On the worst day of our lives, we fed our 7 month old son his first tiny bite of egg and it nearly killed him.
We started very slow like we were advised to, but he still had anaphylaxis, the most severe allergic reaction that could result in death. Afterwards we found out he has life threatening allergies to egg, peanut, milk, wheat, and more.
Since then we've learned so much about food allergies, and we realize how unprepared we were to deal with a life threatening allergic reaction. We both don't have any food allergies and we were so uninformed on the topic before we witnessed anaphylaxis first hand. We have heard of food allergies, but we just didn't know that taking a bite of EGG could kill, or that eating something as common as WHEAT and MILK could kill.
Looking back, it's unbelievable to us that we aren't guided and educated more about this topic as new parents, especially since approximately 1 OUT OF 13 children has some form of food allergies. Before being discharged from the hospital with our newborn, the nurses went over basic safety topics like putting baby to sleep on their back and how to prevent choking, but there was no mention of food allergies and how potentially dangerous they could be. During pediatrician visits, we heard some basic things like "introduce a new food slowly because of possible allergies" from doctors and nurses, but it was nowhere close to the info we needed to actually recognize and treat anaphylaxis.
We really believe info about food allergies and anaphylaxis should be incorporated into all childbirth/baby care classes, postpartum hospital care, and pediatrician office visits especially prior and during the introduction of solid foods. We did the baby care classes, took CPR and First Aid classes, everything conscientious parents would do, but we still were not prepared with the knowledge to deal with a severe allergic reaction. We feel there is a desperate need for more education and awareness on food allergies and anaphylaxis for everyone, and especially for new parents. This knowledge could save someone's life! There is absolutely no room for error when it comes to severe food allergy reactions - it can truly be a life or death scenario. Anaphylaxis needs to be treated right away with epinephrine and every single second counts.
Thankfully our son is well today because we called 911 and he got the life-saving injection of epinephrine in time. But this situation should have been prevented in the first place. We saw many pediatricians in our search for a solution to our son's severe eczema, and they all failed to identify this as an early warning sign that he was at high risk for food allergies (allergens were being passed to him through breastmilk - this we learned after the fact). The pediatricians should have referred us to an allergist for allergy testing, then the allergist would have created a customized plan for safe food introduction. And we would have responded better and faster had we been more educated on recognizing and treating his anaphylaxis.
What if we had waited a bit longer before calling 911? What if he didn't get the injection of epinephrine in time? What if, what if, what if? We don't even want to think about these scary scenarios, but we understand he could have died that day. It is extremely difficult and painful for us to think about that horrible day when we saw the light in our sweet son's eyes fading away. We are so thankful every day that he got epinephrine in time. But it was close.
We revisit that dark day in our minds so that we can learn from it and do better for our son. We are always improving and thinking about how we keep our son safe in world full of allergens, where cheese, sandwiches, and peanut butter are poison for his body. These days we try to keep his life as normal as possible, but the shadow of food allergies is always hovering over us. We take him to do normal "kid things" (toddler classes, play groups, playgrounds), always on high alert for the unattended sippy cup of milk and dropped cracker crumb.
His safety is our #1 priority. We spend countless hours researching and cooking nutritious safe meals given his restricted diet. We double and triple check ingredient labels. We carry EpiPens and backups for our EpiPens at all times. We see one of best allergists in the country. We are nowhere near perfect, but we have learned from this experience and taken the right steps to keep him safe. Eventually, our son will grow up and he will be his own best advocate. We want him to be vigilant and confident in handling his food allergies, and not live in constant fear.
Here are some things we wish we knew back then:
We started very slow like we were advised to, but he still had anaphylaxis, the most severe allergic reaction that could result in death. Afterwards we found out he has life threatening allergies to egg, peanut, milk, wheat, and more.
Since then we've learned so much about food allergies, and we realize how unprepared we were to deal with a life threatening allergic reaction. We both don't have any food allergies and we were so uninformed on the topic before we witnessed anaphylaxis first hand. We have heard of food allergies, but we just didn't know that taking a bite of EGG could kill, or that eating something as common as WHEAT and MILK could kill.
Looking back, it's unbelievable to us that we aren't guided and educated more about this topic as new parents, especially since approximately 1 OUT OF 13 children has some form of food allergies. Before being discharged from the hospital with our newborn, the nurses went over basic safety topics like putting baby to sleep on their back and how to prevent choking, but there was no mention of food allergies and how potentially dangerous they could be. During pediatrician visits, we heard some basic things like "introduce a new food slowly because of possible allergies" from doctors and nurses, but it was nowhere close to the info we needed to actually recognize and treat anaphylaxis.
We really believe info about food allergies and anaphylaxis should be incorporated into all childbirth/baby care classes, postpartum hospital care, and pediatrician office visits especially prior and during the introduction of solid foods. We did the baby care classes, took CPR and First Aid classes, everything conscientious parents would do, but we still were not prepared with the knowledge to deal with a severe allergic reaction. We feel there is a desperate need for more education and awareness on food allergies and anaphylaxis for everyone, and especially for new parents. This knowledge could save someone's life! There is absolutely no room for error when it comes to severe food allergy reactions - it can truly be a life or death scenario. Anaphylaxis needs to be treated right away with epinephrine and every single second counts.
Thankfully our son is well today because we called 911 and he got the life-saving injection of epinephrine in time. But this situation should have been prevented in the first place. We saw many pediatricians in our search for a solution to our son's severe eczema, and they all failed to identify this as an early warning sign that he was at high risk for food allergies (allergens were being passed to him through breastmilk - this we learned after the fact). The pediatricians should have referred us to an allergist for allergy testing, then the allergist would have created a customized plan for safe food introduction. And we would have responded better and faster had we been more educated on recognizing and treating his anaphylaxis.
What if we had waited a bit longer before calling 911? What if he didn't get the injection of epinephrine in time? What if, what if, what if? We don't even want to think about these scary scenarios, but we understand he could have died that day. It is extremely difficult and painful for us to think about that horrible day when we saw the light in our sweet son's eyes fading away. We are so thankful every day that he got epinephrine in time. But it was close.
We revisit that dark day in our minds so that we can learn from it and do better for our son. We are always improving and thinking about how we keep our son safe in world full of allergens, where cheese, sandwiches, and peanut butter are poison for his body. These days we try to keep his life as normal as possible, but the shadow of food allergies is always hovering over us. We take him to do normal "kid things" (toddler classes, play groups, playgrounds), always on high alert for the unattended sippy cup of milk and dropped cracker crumb.
His safety is our #1 priority. We spend countless hours researching and cooking nutritious safe meals given his restricted diet. We double and triple check ingredient labels. We carry EpiPens and backups for our EpiPens at all times. We see one of best allergists in the country. We are nowhere near perfect, but we have learned from this experience and taken the right steps to keep him safe. Eventually, our son will grow up and he will be his own best advocate. We want him to be vigilant and confident in handling his food allergies, and not live in constant fear.
Here are some things we wish we knew back then:
- If you're severely allergic, tiny amounts of food can kill you in minutes (anaphylaxis). Your child can be allergic even if the parents/siblings aren't, and you don't know until you try the food or are tested by an allergist. Introduce a new food in very tiny amounts and increase slowly and gradually over subsequent feedings. If your baby shows early warning signs for possible food allergies (like our son with his severe eczema), consult with an allergist to create a customized feeding plan before introducing solid foods.
- Be vigilant when introducing any new food. You can be allergic to anything, but there are 8 of the top common allergens that require extra attention:
- Peanut
- Egg
- Dairy
- Wheat
- Tree Nut
- Shellfish
- Fish
- Soy
- Recognize the symptoms of an allergic reaction. Familiarize yourself with this chart on common symptoms, and have it on hand before you introduce a new food: https://www.foodallergy.org/sites/default/files/migrated-files/file/common-symptoms-poster.pdf.
- Some symptoms can include sneezing, coughing, hives, rash, itching, redness, nausea, vomiting, breathing issues, swelling of tongue/lips, lethargy/sleepiness among others.
- Inject epinephrine and call 911 immediately if you suspect a food allergy reaction per the chart above. Anaphylaxis is a medical emergency and can be fatal if it isn't treated promptly. Epinephrine is the ONLY drug that can reverse the effects of anaphylaxis. Don't delay calling 911 and request an ambulance with epinephrine. Seconds matter!
- Past reactions do not predict the severity of future reactions. Someone could have a mild reaction in the past and then have a severe life threatening reaction in the future to the same food. Don't let your guard down... there's no such thing as a "mild food allergy."
- Severe eczema can be an early indicator of food allergies. Our son had moderate to severe eczema from a very young age. He was breastfed, and Jess was eating allergens and passing them unknowingly to him through her breastmilk. From our personal experience and conversations with many doctors, an allergist will tell you that Eczema, Allergies, and Asthma are all related. But many other very experienced doctors disagreed and told us that there was nothing we could really do about the eczema other than treat the symptoms (i.e. with moisturizer and/or steroid creams). After our son was diagnosed with food allergies and Jess stopped eating his allergens while breastfeeding, his eczema completely disappeared for good. His dermatologist still doesn't believe there's a relationship between his allergies and eczema, but we could not disagree more. If your child has severe eczema, we suggest to see an allergist for guidance or at least for a second opinion.
- Finally, trust your gut! There's a lot of misinformation and incomplete training surrounding allergies. Don't hesitate to seek second or third opinions. We had to wade through bad advice from many medical professionals before getting our son the correct diagnosis. Jess ultimately called 911 during our son's anaphylaxis, even though the on-call pediatrician at the time (incorrectly) did not advise it. This decision saved our son's life.
We are not medical professionals so always consult with your doctors about your specific case. We are just parents who wanted share some of the things we have learned the hard way in the hopes that others can learn from our experience. Please keep this info in mind when introducing foods and as your kid grows up (allergies can develop at any time/age). Food allergies are becoming much more common recently, and we don't want anyone else to experience what we went through.
Eat safely!
Andrew and Jess
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