Ask Us Anything: Does My Infant Need An EpiPen?

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Dear Scratch or Sniff:

I am looking for a little advice. My infant was diagnosed with a milk protein allergy back when she was just a few days old. She had been vomiting old blood and having black stool (they tested and it was bloody as well). They told me to cut dairy since I was breastfeeding and bring another poo diaper back in 2 weeks. Problem solved.

I kept a food journal just in case. She kept projectile vomiting every time I would have anything with soy in it. I stopped eating soy as well, and talked to the pediatrician and he said that dairy and soy allergies are very linked and that she was most likely allergic to it. Any time dairy sneaks into my food (if we ever eat out..rare) she is miserable and has black stool for a couple of days. She is now 9 1/2 months and able to eat table foods.

My older two daughters do not have food allergies, and drop cheese, mac & cheese, etc. on the floor. I always make sure to clean it up, but I’m not perfect. I am afraid of her getting some and having a terrible reaction. All of her reactions have been “second hand” through breast milk. Should I talk to her pediatrician about an epi-pen now? I have NEVER dealt with food allergies and quite frankly they terrify me! I was only here for the eczema advice for my middle daughter and now am so thankful for this blog!

Sincerely,

Unsure

Does My Infant Need an EpiPen?

Dear Unsure:

First of all, know that I completely understand that terrified feeling you mention. I can promise that as you get more experience with food allergies and as your sweet little one gets older, it does get easier. There are still moments of anxiety, tears, and being overwhelmed, but those moments are fewer and further between as they grow and you become more equipped to handle this new life.

Now, to answer your question: I would definitely talk to your pediatrician. Rather than just asking for an auto-injector (a personal aside here, we love us some Auvi-Q™ in our household for ease of use in case of an emergency), I would recommend asking for a referral to an allergist. Check your insurance to see if you even need a referral – if you have a PPO, you likely won’t need one.

Next, because of the symptoms you list, I might recommend doing some research on Food Protein-Induced Enterocolitis Syndrome (FPIES) and discussing this possibility with your allergist. The reason I recommend this is because I’m not exactly sure how your little one’s milk protein allergy was diagnosed, and because FPIES can cause severe vomiting and diarrhea after ingestion of the allergen. It’s important to note that regular allergy testing won’t detect FPIES because it tests IgE in the blood and IgE is not involved in FPIES reactions. Exploring all possible diagnoses with your allergist before testing might make the entire diagnosis process a little easier for both you and your baby.

Assuming you have a bit of a waiting period before you get in to see a specialist, I’ve gathered a few resources that might be helpful for you to review:

Learn more about FPIES symptoms, diagnosis, and treatment The FPIES Foundation website. This might help you determine whether it’s something you need to discuss with your allergist.

I highly recommend the book Food Allergies: A Complete Guide for Eating When Your Life Depends on It by Scott H. Sicherer, M.C., a professor of pediatrics and chief of the Division of Pediatric Allergy and Immunology at Mount Sinai School of Medicine. This is a book I wish had been available when my son had his first reaction eight years ago. It covers any topic you wish to understand when it comes to food allergies – including a section on FPIES – in an easy to read format.

Consider joining a couple of support groups online and in person. Facebook has a plethora of closed groups where you can ask questions to many parents who have walked the same path you’re on now. I’ve found these groups to be not only supportive, but I’ve learned more from these moms and dads than I have in my short appointments with our allergist. These groups don’t replace a medical professional – you should still see an allergist – but having advice from people living it day in and day out is so helpful. One group that might be helpful to you is the Parents of Children With Multiple Food Allergies group. You can also search for groups that are set up for parents of children with milk allergies.

I hope this helps get you started in the right direction, and I wish you all the best. Please check back in and let us know what your allergist says.

Tiffany Self

Tiffany Self is a wife, mom to "Z", and a lover of words. In an ironic twist, she is an English class dropout who now writes for a living. Tiffany is a freelancer in the Chicago suburbs by way of Seattle and Southern Oregon. She writes about her journey of parenting a child with multiple severe food allergies, asthma, and environmental allergies. You can follow her on Twitter or Instagram.

5 Comments to Ask Us Anything: Does My Infant Need An EpiPen?

  1. Jamie

    Thank you for mentioning FPIES! My 16-month-old daughter has FPIES to milk, soy, rice, oat, and corn, and similar to the author of the question above, we first found out when she was only a day or two old that something was awry. It was a long process (9 months) to get the official diagnosis because my daughter’s allergist claimed it wasn’t common enough to see a baby react allergically to her mother’s diet, but once my daughter went into shock after an acute reaction to rice she agreed we were right. My daughter’s diet is still incredibly limited, and it wasn’t until she was 11-months-old that she finally had a safe food to eat, but with the food trial process my husband and I have arranged we are slowly making headway. Now she can eat apples, carrots, peas, hemp seeds, and nutritional yeast. It’s even looking like strawberries might be a pass! Clearly her diet is nothing in comparison to the non-food allergic child’s, but we celebrate each new food she can consume because they all offer different nutritional benefits for her.

    Another good resource for information on FPIES is fpies.org, which details the differences between acute and chronic FPIES and provides Q&A commentary with one of the leading researchers of FPIES, among many other things.

    Best of luck to you, Unsure. You are not alone, and things do get easier to manage!

    • Tiffany

      Thank you for sharing your experience and resources, Jamie! Best of luck with the strawberries and every new food you introduce from here on out.

    • Ashley

      Hi, Jamie! Thanks so much for sharing. Is the main difference between FPIES and a “typical” reaction that it occurs in the gastrointestinal system vs. affecting the airway? We will be seeing an allergist soon, and I want to be prepared with questions to ask.

      • Jamie

        Ashley,

        *Please keep in mind that I am not a medical professional, I’m a mom to a little girl with FPIES. While I know how my daughter reacts, I don’t know all there is to know about FPIES, so everything below is purely based on my experiences. <3

        In the most general terms, yes, FPIES is different from the type of food allergy that most people are familiar with because it causes symptoms that mainly affect the gastrointestinal system and does not cause hives, redness, swelling, or trouble breathing. FPIES causes hypovolemic shock due to rapid fluid loss, not the anaphylactic shock of severe IgE reactions. FPIES reactions are also delayed, occurring on average anywhere from 2-4 hours after ingestion (my daughter's begin at two hours on the dot from her first bite of an offending food – the clockwork is scary). Because FPIES reactions don't occur immediately after eating like you would see in an IgE reaction, there is often difficulty in piecing together the puzzle to realize that food may be the cause. Oftentimes young babies with FPIES are first diagnosed with colic, only to later get a proper diagnosis when a reaction occurs with the introduction of solid foods. Also, FPIES reactions don't always occur after the first exposure to a given food. With all of that in mind, FPIES is similar to other food allergies in that reactions occur on a spectrum of severity, reactions look different for every child, and different foods cause different types of reactions even in the same child. For example, my daughter reacted after her first exposures to both milk and soy with inconsolable crying, persistent vomiting, mucus in her stool, and an acidic diaper rash that caused open sores on her skin. Notably different was her reaction to rice, as it didn't occur until she had been exposed 17 times. During that reaction she projectile vomited 8 times in the span of about 10 minutes which led to refusing to nurse, cold sweats, a rapid heartbeat, shallow breathing, ashen color, and falling limp in my arms. About 15 minutes after her reaction started she fell unconscious and went into shock. Thankfully, once at the hospital and receiving IV fluids she was quickly revived and pretty much no worse for wear apart from some pretty significant mucus in her stool for almost two weeks afterward.

        FPIES is still a largely unknown diagnosis, so there is still a great deal to be done in terms of educating both the general population and health care specialists. As far as things you may want to ask the allergist at your appointment, I would start by giving an overview of the symptoms you've seen in your daughter's reactions. Also explain if there are things that make reactions better or worse (Did removing a food relieve symptoms, only to have them return if the food was reintroduced? Does a smaller amount of the food in question affect the severity of the reaction? If you're still breastfeeding, does adding or removing a food from your diet seem to have an affect?). If you do a bit of research into FPIES before your appointment and are confident that it's at least a possibility you may be dealing with that for your child, I would also ask if your allergist has experience caring for children with FPIES. If they are unfamiliar with FPIES I might consider trying to locate a doctor who is familiar. Just speaking from personal experience on this point, the allergist we see literally nervously laughed at me when I asked her about conducting an in-hospital food challenge for one of the foods my daughter had never eaten herself but reacted to in my diet. Later in that appointment she shared she had only treated one child with FPIES before, and that child only reacted to one food, so she was stumped as to how to manage the care of my daughter. The FPIES Foundation website has a great provider directory on its landing page, just scroll down a little and look toward the right. Some other questions we have asked touch on things like foods to try and foods to avoid based on which foods we already know cause reactions (I'm still nursing so, among many other things removed from my diet, I don't eat any grains because of my daughter's severe reactions to rice, oat, and corn; we were advised to wait to introduce any more grains to our daughter's diet after her reaction to rice when she was 8-months-old). Your allergist may want to do skin-prick testing to rule out IgE allergies for the foods you've noticed cause issues. It is completely up to your discretion, but we have done three different sets of skin-prick tests (at ages 2 months, 8 months, and 14 months) for confirmation and peace of mind that we are managing our daughter's allergies as fully-informed as we can. For foods that we noticed reactions to through my diet we asked when and how they should be introduced to our daughter. Oral food challenges often occur under medical supervision for the more common FPIES trigger foods (milk, soy, rice, oat, chicken, turkey), and it's likely that your doctor will also want to challenge any foods you have seen cause acute reactions under medical supervision as well, though maybe not immediately.

        My biggest piece of advice for you would be to follow your gut. If something doesn't feel right to you about how your baby reacts to a food or something your doctor advises, chances are that it isn't. Ultimately, you are the one there for your baby day in and day out. You are the one witnessing the reactions, so you are the one with first-hand knowledge of what is affecting your baby and how. So much about FPIES is still unknown and under-researched, and as with most other topics in medicine, everything in FPIES comes down to trial and experimentation. I'll be honest and say that getting an FPIES diagnosis was a bit overwhelming for me when I stopped to think about every little detail of what our future may hold. Thankfully, I've realized that all I really need to focus on is the day at-hand. Some days are better than others, but taking things one step at a time makes everything more manageable.

        Best of luck to you at the upcoming appointment with an allergist! I will check back on this post, so if there is anything else I can do to help or any other questions you have, leave another comment and if I can do anything for you then I certainly will.

        • Ashley

          Thank you so much for all of the help! I know that she has a severe reaction that sounds like FPIES after I consume dairy. It happens even if I consume the tiniest amount. She would have one after soy as well, but not with blood involved. I will definitely be doing a lot more research before going into the office. I have learned to be an advocate for myself and my kids.

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