We discovered our son’s peanut and cashew allergies at 15 months through allergy testing. He was tested for allergies because after we switched him to dairy at a year, he became ill, and lost weight. We switched to rice milk and were sent to a nutritionist. Along with increasing intake of beans, lentils and meats, the nutritionist recommended trying nuts as a healthy fat and protein source.
Since we were already doing allergy testing for dairy and soy, we decided to also test for nuts. When the testing came back with no measurable dairy or soy allergy, and instead an allergy to cashews and peanuts, I was shocked. He had never eaten either of those foods.
After a year of struggling with severe infant reflux, we had some indication that certain foods might be a problem. I was prepared to find a food allergy that causes stomach upset, nasal congestion, or skin eczema, but I was NOT prepared to find a potentially life-threatening, anaphylaxis inducing allergy.
It is by the grace and mercy of a loving God that we learned of his allergy through testing instead of a trip to the ER. Words cannot express my gratitude.
With the diagnosis came a prescription for an Epi-Pen. We were instructed that a nut-free home was a ‘good idea’. We were directed to a few websites for ‘tips’ and told to follow-up with an allergist for skin testing when our son turned 3. The pharmacist showed me how to use the Epi-Pen and recommended doing training with all family and caregivers.
Apparently after some web research and Epi-Pen training, we were equipped to keep our son safe.
It was like as long as we had an Epi-Pen, we’d all be OK…
But I didn’t feel equipped.
Truth is, if your child has a potentially life-threatening food allergy, there is a lot you need to know because you NEVER want to use that Epi-Pen!
After doing some research on our own and conversations with doctors and nurses, we got our feet underneath us. From those efforts, here are some tips for parents who have a child diagnosed with a food allergy.
DO These 10 Things When Your Child is Diagnosed With A Food Allergy
1. Choose your sources carefully
DO not do a random google search for ‘peanut allergy’. While some helpful information will come up, there are countless stories of extreme reactions that will scare you out of your boots. A little fear is healthy, but you do not need to read every food allergy horror story out there. When looking online, choose reputable associations and websites known to have accurate medical information.
The Food Allergy Research & Education (formerly FAAN) has helpful information for parents, schools, and kids, and the National Institute of Allergy and Infectious Diseases (NIAID) has similar information, as well as journal articles on current scientific research. Your state may also have an association dedicated to food allergies; here is the link to the MN Anaphylaxis and Food Allergy Association of MN (AFAA) Facebook page . Some blogs may give you a more personal view of other’s experiences, but you may have to be selective. Here is a list of 16 great food allergy blogs, I’m a fan of The Nut-Free Mom.
2. Request a consult with an Allergist
We waited (in error) to go to the allergist until my son was 3 based on the pediatrician’s recommendations. If diagnosed in the pediatrician’s office, don’t wait to see the allergist. The wealth of information the allergist provided was worth whatever copay is required. Most insurance plans cover the appointment and we didn’t even need a referral to go to ours. Allergists are experts in their field, and can give you a realistic and full picture of your child’s specific allergies.
3. Do Epi-Pen training with family and caregivers
After our son was diagnosed, we trained our entire family how to use the Epi-Pen. Every prescription comes with a training pen, and it took just 15 minutes. It gave us the chance to explain what anaphylaxis looks like, and why it happens. We were able to clarify what nuts he was allergic to, and that even though allergic peanuts and cashews, we avoid ALL peanuts and tree nuts. It brought greater awareness of the risks of foods for him. Now no one gives our son food before asking one of us, or reading a food label. In writing this, I realize we are overdue for an Epi-Pen review session. Oh and don’t forget to register your Epi-Pens here and they will send you a free travel bag to carry them in.
4. Master food labels and teach family and caregivers
Reading food labels on EVERYTHING is not natural to many. I have some food allergies myself, so I was accustomed to reading food labels, and my husband had some practice too. However, my food allergies make me feel sick and are not life threatening. I needed to be much more diligent to read the label before EVERY purchase. Some of our family had never dealt with food allergies of any kind. Reading food labels is not always easy for them, and I don’t expect them to do it perfectly. When in doubt, read the label together or pick something else. Never assume anything is safe if you didn’t read the label. My son’s grandparents, aunts and uncles have made his safety priority and when in doubt, they call me and read the label with me on the phone or in person, or ask me to bring something for him.
Don’t forget to read labels on ‘Safe’ foods, even if purchased before. We have unknowingly purchased potentially nut-contaminated foods by buying what we have before and wrongly assumed to be ‘safe’. Companies change manufacturers and bring on new products often, so it is possible for their ‘safe’ status to change depending on the other products being made using the same equipment. To be safe, just read everything, every time. There will always be food to eat, regardless of your allergy, but it may not always be the same stuff.
5. Tell people
While you don’t want a food allergy to define your child, a life threatening allergy should not be a taboo discussion. And actually, even an allergy causing fairly mild symptoms is worth mentioning, because you don’t want your child to feel sick when it is avoidable! If your child is going to spend time at someone else’s house or you are having people over, a quick heads up is important. Not only will your child be safer, and your mind be calmer, but you can save others from feeling bad because the food they brought or have on hand may not be safe for your child. It can be a brief mention, allowing you to offer to bring something, and for them to ask for tips on safe foods. With nuts, I tell people that fresh fruits and vegetables are the best bet; they are healthy and not processed on equipment with nuts. As your child gets older, they can take on this responsibility.
6. Clear your home of allergens
Let me be clear: choosing to eliminate an allergen from your home is a personal choice for every household. In our case, we made our home nut-free because we want our son to be able to eat everything we have on hand and never worry about getting sick in our home. We avoid all nuts and products processed on equipment with nuts. Don’t forget that some non-food items may contain a food allergen. Watch out for lotions and soaps which may contain things like oatmeal, nut oils, soy or other allergens.
7. Deal with your emotions
There were two main emotions I felt about my son’s food allergy. Sadness and fear.
It’s just food, right? I felt silly that I was devastated by our son’s allergy diagnosis. Yes, I love peanuts but that is not the problem. How will it feel to him when he understands he can NEVER eat any? I don’t want him to have ANY food allergy, let alone a life threatening one. I want him to be able to eat a peanut butter sandwich and not have to worry about reading a food label before he eats. I want him to be able to eat all birthday cake and not worry about whether he will be safe at a birthday party. I want him to be care-free about food, especially as a child. BUT, I NEVER want him to have a reaction even more.
The fear associated with a child’s food allergy is a very real, and powerful fear. It can be paralyzing. Initially, I dealt with this fear by controlling the situations and foods he encountered. Long term, this isn’t going to work. He will go to school, friend’s houses, and birthday parties WITHOUT me. The only way I can truly deal with the very real and present fear for his safety is through regular and focused prayer, and trust that the Lord will protect him. HE will, but that doesn’t mean it gets easier.
One thing that helped me sort through my emotions was this book. The writer is a mom who shares openly about her experience and emotions that surround her child’s severe allergies. There were helpful ideas for how to handle allergies and how to handle other children in the home who do NOT have those same allergies. It gave me some much-needed perspective.
8. Consider a Medical Alert bracelet
Whether the allergy is life-threatening or not, a medical alert bracelet can serve as a reminder to you, your child, and any caregiver. This may be helpful especially when your child is small and not able to make their own safe food decisions. IF (I pray it never does) a reaction occurred, a medical alert bracelet is a great way to notify medical personnel of the allergy if you were not present. I have been looking for a kid-friendly bracelet, and will be purchasing this one for my son, with the peanut and tree nut identifiers.
9. Educate your child
It is our job as parents to educate ourselves, caregivers and our children until they are able to advocate for themselves. When we found out, it was our job. When he turned 3, we started actively trying to help him understand that there are some foods that are not safe to eat (even though others eat them, and you can buy them at the store). When shopping, we walk by the bulk nuts and talk about what they are and why we don’t eat them. I ask him, “Do we eat nuts”, and he says “No”. Although he thinks it is a game, I know the awareness will help in the long run. Despite all our discussions, the most effective thing that helped him understand WHAT allergies are is a Sid the Science Kid (on PBS) episode about seasonal and food allergies. He watched it twice on DVR, and told me all about what an allergy was and how some people are allergic to things other than nuts. I’m not sure where to find the full episode online, but PBS does play reruns…
10. Let them be a kid
While awareness is important, I want him to be a kid. He will have a lifetime of vigilance since most do not outgrow nut allergies. By making our home nut-free, he can be relaxed at home.
I never want him to feel left out because of his allergy. When we go somewhere new, I always bring a variety of nut-free snacks or pack a lunch to be sure food isn’t an issue. Eating out, desserts are the biggest problem; we never order it because it is rare to find ANY that are safe. If we are with others who order dessert, no one in our family participates. If we are somewhere with other kids (birthday party, playdate) and they have a ‘treat’, I always have something small and sweet (lollipop, teddy graham, grapes) to give him, and try to plan ahead so if possible, I can bring something that looks similar.
We have spent time finding good alternative products so he can have the same ‘kid’ food experiences non-allergic kids have. Find non-diary ice cream for dairy allergies, non-nut butters for nut allergies, and vegan products for egg allergies. Try local places like Whole Foods, Trader Joe’s and even Target, and look online. Check out my recent post on three of my favorite nut-free options.
If you’re new to this, I hope this post points you in the right direction! For us, now that we have educated ourselves, the biggest challenge is making the right people aware so that he is safe outside of our home. If you have other tips, I’d love to hear them!