27 Jul

Creating a Normal Life with Severe Food Allergies: Our Adventures in Toddler Wearing

This post is written by Marissa Jennings, an educator with Babywearing International of Central Iowa. You can read this piece in it’s original format on their blog. Thanks for allowing us to re-post.

When my son Eli was only twelve weeks old, we discovered that his digestive system could not handle any cow’s milk protein in my breast milk, so I eliminated all dairy from my diet. About six months later, we were still in the same place and even witnessed Eli break out in a rash all over his mouth after simply being kissed by someone who just drank milk. At that point, we knew we were dealing with something more serious and decided to schedule an appointment for testing with an allergist. At eleven months old, Eli was diagnosed with anaphylactic allergies to milk, peanuts, and eggs (recently, we also added garlic to the list).

Many people don’t know what it means to have an anaphylactic food allergy. We certainly didn’t at the time of our son’s diagnosis. And we definitely could not foresee all the ways having a young child with life-threatening allergies would impact our everyday lives. We soon learned that if Eli ingested even a miniscule amount of one of his allergens, his throat could instantly begin to swell shut, cutting off his ability to breathe. We also learned that it wasn’t even necessary for him to ingest his allergens to go into full-blown anaphylaxis—a tiny bit of milk on his hand could cause this possibly fatal reaction if he so much as rubbed it into his eye. Some food allergic people even react to their allergen being in the air! Due to the severity of Eli’s allergies, we had to begin carrying epinephrine with us absolutely everywhere Eli would go. And we had to learn how to venture out into a world filled with seemingly harmless foods that could potentially kill our child.

The first six months after Eli’s diagnosis were our biggest challenge. We were trying to figure out how to cook for ourselves safely and how to remove all his allergens from our home. We made our house a safe zone for Eli—a place where we didn’t have to worry about him coming into contact with anything dangerous for him. But we soon discovered how impossible it was to keep an active toddler safe in public. You would not believe the amount of food that is accessible to a small child until you are forced to pay attention. Most parents of young toddlers and preschoolers know that they like to run, they like to investigate, they like to touch things and put things in their mouths, and it’s almost impossible to stop. While normally just an annoyance for most parents, this is absolutely terrifying for a food allergy parent whose child cannot pick up even a tiny amount of their allergen without a severe reaction. My son is fast, he moves fast, and I realized I couldn’t take my eyes off of him for a second when we were out in the world. Because of that, we rarely went anywhere for a good six months after he was diagnosed. This brings me to the solution that we discovered in toddler wearing. A solution that I am so grateful for every single day of my life and want to share with everyone I know.

When we realized that we could not even figure out a way to safely take Eli to a grocery store, we knew we needed another option. I had worn Eli in a Moby Wrap that my cousin gave me for the first few months of his life. In fact, the stretchy wrap had a large part in helping us survive the colic that was caused by Eli’s milk allergy. However, once it was no longer comfortable for us, I simply wasn’t aware that there were other options as he grew. And I certainly wasn’t aware that there were carriers large enough to comfortably hold my tall, solid 18 month old boy. Like many people, I thought my only options were to let him walk or use a stroller. Then one day I happened to see another mom wearing  her toddler in an Ergo and decided to reach out in a breastfeeding group I had joined on Facebook. The ladies there immediately suggested a toddler Tula for Eli after I described his weight and height. I figured we didn’t have anything to lose, and I ordered it that same day. From that moment on, our lives changed. I can’t say they went back to normal because our lives will never be that version of normal again. But we were able to create a new normal for ourselves and a safe way to take our son into public at last. He is now three years old, and we continue to wear him every time we are in public, which amounts to nearly every day of the week.

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Our first carrier

My goal in writing this post is to reach out to other food allergy parents who may be struggling like we once were to figure out how to manage being in public with a young toddler or child after a severe food allergy diagnosis. I am also hoping to help other Babywearing International (BWI) educators like myself understand how baby and toddler wearing can be extremely beneficial  in this special circumstance. Below are some common difficulties that food allergy parents regularly face and how we have adapted toddler wearing to safely work for us.

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This was our first spin in public with our new Tula about 6 months after our diagnosis.

Emergency Medications

Epinephrine is life-saving adrenaline and the ONLY medication that will stop an anaphylactic allergic reaction in its tracks. However, to work properly, epinephrine needs to be administered IMMEDIATELY and without hesitation at the first sign of an allergic reaction. Any delay in medication increases the likelihood that a reaction will become fatal. I cannot stress enough how important it is for children (and all people) with food allergies to carry epinephrine with them at all times, whether they are just in their own backyard, on a walk to the park, at a swimming pool, at Grandma’s house, at daycare, etc. It must go everywhere. In our family, we try to think about it like Eli’s shoes. He cannot step outside of our house without it. And in our house, we always keep it in the same place so it is easy to find in an emergency. In addition to being easily accessible at all times, the epinephrine also needs to be kept at a stable temperature out of the sun.

Because of this, we decided to design a little pouch to carry Eli’s epinephrine that attaches to our favorite toddler carriers—our soft structured carriers (SSCs) and mei tais. With the help of some lovely seamstresses, I have ordered many of these pouches to go with our various carriers over the years (but just one would suffice of course!) They measure approximately 8” by 11” and are horizontal with the zipper on top. They slide on to the waist band of our carriers with heavy duty elastic . I do not sew, but I’ve been told that this pouch is very easy to make. It has come in so handy for us because it makes it very easy for me to take Eli places by myself without having to haul a bag around. In addition to the EpiPen 2 pack, we also easily fit a bottle of Benadryl, a syringe, a package of Wet Ones (for keeping our hands clean at all times when soap and water isn’t available), a toy, and a snack. We love that Eli’s medication is always no more than an arm’s length away and out of the sun.

The carrier pictured below is a toddler Tula, but this pouch design would work well with any carrier that has a waist band.

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Babywearing Tip: Use a soft structured carrier (SSC) or mei tai so you have a waist band to which you can attach your medication pouch. An added bonus to these two styles of carriers is that they are both very toddler-friendly, allowing for quick ups and downs. They are also among the easiest carriers for beginners to master and allow for easy changes between different wearers (my husband and I like to switch off a lot since we wear so often!).

Food Allergy Nightmare # 1: Grocery Shopping

Grocery shopping was our first and greatest challenge when we first got Eli’s diagnosis. In general, it’s not easy for any parent of a toddler or preschooler, but for us, it suddenly became extremely dangerous. In addition, as most people with food allergies know, grocery shopping is a lengthy process when you have to read every single label every single time.

Most little ones do not cooperate well enough while shopping to walk along side the cart holding hands, and our child was and continues to be no exception to this. Of course we talk to Eli constantly about not picking up anything off the shelves or floor and not eating food that we don’t give him ourselves. But  you can’t really trust a 2, 3, 4, or even 5 year old to understand that when it comes to this one thing, he or she must listen EVERY TIME or it could cost them their life. So walking wasn’t an option. He was and still is too short for us to keep a good enough eye on him at all times that way anyway, even if he would cooperate. We of course tried to use carts, but we usually found that the kids’ seat had old food left in it from other kids’ snacks. Even after an extensive cleaning, we found that from that seat, Eli could still reach out to the shelves and other people’s carts, which were on his same level. The worst part was when we would try to get food off the shelves ourselves and turn our back on him for a moment. It just seemed like an accident waiting to happen. We never imagined it would be so hard the first time we stepped into a grocery store post-diagnosis.

28 weeksOur first grocery shopping trip after we got our toddler carrier was amazing. The thing about baby and toddler wearing that makes the biggest difference for a food allergy kid is the level. They are no longer on the same level as all the other carts and are no longer close to the ground. And even with your child in a back carry, you can still feel their weight shift with your eyes closed, so you’re well aware of what they are doing at all times (including when they reach for things they shouldn’t be). Our Tula was a grocery shopping game changer, and we were so relieved.

Babywearing Tip:  I would just advise that food allergy parents and BWI educators be aware that a tight fit in the carrier is important so the child can’t lean back or out of the carrier (restricting how far they can reach). The wearer should also practice carries at home first so they get used to the way their child’s weight feels and moves in the carrier (when they are reaching for something, for example). If the child is in a back carry, it’s important that the carry is high and the child can see over the wearer’s shoulder. If the carry is lower than that, it is more difficult to monitor the movements of the child. Depending on the height of the wearer and child, a mei tai may work better for this since SSCs aren’t meant to be worn higher than hip or waist level. Even though babywearing makes life so much easier with a food allergy child, hypervigilance is still of course necessary at all times.

Food Allergy Nightmare #2: Doctor’s Appointments

20140214_103705Most food allergy parents are unfortunately very used to frequent doctor’s visits with their little ones, especially if the food allergies are severe. Eli does regular skin and blood testing and is currently doing a series of food challenges. Babywearing is extremely helpful  in these situations, especially when the testing is unpleasant or the child has had a reaction. Eli considers his carriers his “safe place”. Any time he is not having a test done, he is snuggling me in his carrier, which instantly makes him calm. We don’t allow anything painful to happen to him while he’s in his safe place so he trusts that he can count on it for security. That kind of security helps us get through four hour food challenges and blood draws. It is truly remarkable. It also helps us get basic things done like blood pressure and ear, nose, and throat exams.

Babywearing Tip: We always take a carrier that’s easy to get on and off (preferably an SSC or mei tai) since we have to take Eli down frequently for various parts of the appointment. We also try to take whatever carrier is Eli’s favorite at the time so he feels safe. His carriers really have become his comfort items over the years and make his doctor’s appointments significantly easier on the whole family (and the doctor!)

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Here’s my little happy camper after thankfully passing a baked egg challenge recently. Our first food allergy success!

Food Allergy Nightmare #3: Flying

When we decided to take our first big family vacation, I was filled with anxiety for Eli’s safety. Flying can be a very scary ordeal for someone with anaphylactic food allergies. For one thing, most airlines still serve peanuts (not to mention other snacks) on their flights, and  as I am writing this, there are no uniform regulations to help protect people like my son aboard the aircraft. You basically assume the risk yourself when you choose to do it. What makes flying so risky for a food allergy sufferer like my son is if he touches or ingests even a small amount of allergen at the airport or on the plane, he could have an anaphylactic reaction in the air, making emergency care very delayed. Thankfully, everything went off without a hitch, and we learned some very valuable tricks for flying not only with a toddler but a food allergic one.

IMG_5340Our strategy was to wear Eli in his Tula through the airport, through security, and on to the plane. In many cases, security officials will allow you to leave your child in the carrier through the check point as long as your carrier does not contain metal like a ring sling does. This part is at the discretion of the agent, but we got lucky and didn’t have to take Eli down at either security stop. My husband also kept Eli on his back as he boarded the flight so that he wouldn’t touch any surfaces that may have contained food residue. I then wiped down our entire row of seats before we took Eli off my husband’s back and put him into his car seat. We of course kept multiple sets of epinephrine with us at all times as well. We were fortunate that our airline let us pre-board the flights to wipe down the seats and refrained from serving peanuts for us, but that is completely at the airline’s (and the staff’s) discretion. I honestly feel like wearing him was the greatest protection of all, however, because he had no chance to touch anything at any point between the time we entered the airport to the time we boarded the plane.

Babywearing Tip: If you have to fly with a severely food allergic child, I definitely recommend a soft structured carrier, mei tai, or woven wrap WITHOUT metal for use at the airport to decrease the likelihood that you will have to take your child down at security. It is also very helpful to wear while boarding the plane so you have a chance to wipe down your area before restraining your child in their car seat.

Food Allergy Nightmare #4: Halloween

photo (69)I can honestly say that my toddler would not have been able to participate in trick or treating these past few years were it not for our carriers. Having such a young child with such severe allergies means that their level of understanding of the dangers is limited. When he’s older, he will know which candy he can and can’t touch, and he will also understand that he can’t pick candy up off the ground. But even now, at age 3, curiosity often gets the best of him, and Halloween is one night where you will notice candy all over the ground if you pay attention. The fact that it’s usually partially dark by trick or treat time adds another element that makes it difficult to watch your food allergy child carefully enough.

The picture above was from Eli’s first Halloween after his diagnosis and the picture below from his second Halloween post-diagnosis. By wearing him on my back, I was able to check out the bowls of candy for him and let him pick out treats himself at the houses that had non-food items or all safe candy in their bowls.  I was also able to keep him off the ground and above the level of all the passing strollers with trays covered in candy.  I am so grateful for my carriers every Halloween when my son gets to feel just like all the other kids. That feeling is priceless.

IMG_3879Babywearing Tip: What has worked the best for us each Halloween is to pick a costume for Eli that drapes over the back of the Tula (any soft structured carrier, mei tai, or woven wrap would work just fine for this as well).  We also decided to just make it a family dress up event so it seems normal and fun to Eli. 

Food Allergy Nightmare #5: Swimming

Swimming pools are an example of something that is unexpectedly difficult for a food allergy parent of a young toddler or child. We have found that there is often concession stand food on the ground all over the pool, sometimes even in the water itself. In addition, many people bring their own snacks to eat while they sit around the pool, and we have even witnessed one parent hand their child a peanut butter granola bar WHILE he was still in the water right next to our son. For this reason, we decided to get a water carrier. We wear Eli in our water ring sling whenever we walk around the pool or need to go to the rest room. He even enjoys it in shallow water, so we often wear it there too. When he isn’t in his ring sling, we have to make sure we are right next to him, ready to intervene if he comes across food, so it’s always more stressful that way. Toddler wearing at the pool allows us all to have some relaxation time and prevents my son from picking up a Snickers bar left on someone’s lawn chair until he’s old enough to know better.

Babywearing Tip:  It’s important to have a special carrier that is made specifically for use in water since chlorine can break down the material of your usual out-of-water carriers.  Our choice was a Zanytoes Splash ring sling (pictured below), but there are many brands of ring slings and wraps that are made specifically for use in the water. Please also note that water carriers should never be used in deep water for baby’s safety.

photo 1 (55)Some of you might be asking yourself why we don’t just use a stroller for our son. And in fact, we do! Our stroller works wonderfully when we just want to take him on a walk to the park, for example. It keeps him up off the ground and he enjoys being in it when he’s outside. However, we have found that when we are at busy, crowded events, there are countless strollers. And most of them have cheese crackers, peanut butter Cheerios, etc…all over their trays. It’s not something I ever noticed before I was a food allergy parent, but now I zero in on it immediately. When my son is in a stroller in a crowded place next to lots of other strollers, he can reach right over and grab at whatever food is on the other trays. And every parent knows how toddlers like to reach out to each other and share food and toys! Not to mention the fact that the cover and his position closer to the ground both make it harder for us to see every little thing he is doing while he is in his stroller. The safety that toddler wearing provides for a food allergic child is really all about the level, as I mentioned above. When he’s up on our back (or front), he is no longer at cart level or stroller level or ground level. And we are able to be hyper-aware of every movement  he makes. For this reason, I like to advise food allergy parents to make sure their carrier is tight and their child is high if they are in a back carry so that they can be more aware of the child’s movements.

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We found ourselves very grateful for the safety of our carrier recently at a very crowded dinosaur event.

photo (43)A Farmer’s Market is another example of a place we could not safely take our toddler were it not for our carriers. (Please note in this picture that Eli should have been up a little higher on my back so that I could monitor him more easily. This was one of the first times we took Eli out in public after his diagnosis).

Babywearing Tip: If you frequently experience others attempting to hand your child food when you’re out in public, consider making a slip cover for your SSC or mei tai that states something along the lines of: “PLEASE DON’T TOUCH OR FEED MY FOOD ALLERGIC CHILD”. You could also attach a sign with tape to any carrier you are using. I would not recommend sewing anything on to the carrier or otherwise puncturing the fabric because that could compromise the carrier’s function and safety.

More Benefits of Wearing a Food Allergic Little One

Many caregivers have found that wearing a food allergic toddler or young child has too many benefits to count. In addition to preventing them from coming into contact with dangerous foods as I have discussed extensively above (and prevention is key!), having your child close to you can also help you carefully monitor them for any sign of a reaction. When they are on your chest or in a high back carry, you can hear their breathing and quickly notice any abnormality, for example. Keeping your child close makes it less likely that you will miss those very important early signs that a reaction is starting and prevents you from wasting precious seconds when you could be administering the epinephrine.

Wearing your toddler or your child also allows them to be on your level and see the world from your perspective. Because of that, they are very likely to witness you advocating for them when you’re out in the world. I often have to tell people not to hand Eli anything and explain his food allergies on a regular basis. He then witnesses the way I handle these situations and hears everything I say, which I believe helps him learn how to advocate for himself as he gets older. Being attached to my body, he is also able to feel my stress and learn my body language in these situations, which in turn teaches him how to handle himself in the future when it comes to his food allergies. It also instills some fear in him, which unfortunately is an important part of keeping him safe. I feel like his understanding of his allergies is pretty amazing for a three year old, and I do credit babywearing for giving him the opportunity to regularly witness these interactions from my view point.

It goes without saying that babywearing is a very useful tool for comforting a baby, toddler, or child, no matter what their situation. The same is true for food allergic little ones who undergo frequent doctor’s appointments, testing, and reactions. It is a very big help in the aftermath of a reaction when the child just wants to snuggle with mom or dad all day. It allows the child to feel the security they crave while the parents can take care of other children and go about their lives as they need to.

While this article has mostly focused on how wearing can help with a food allergic toddler or child who is walking and playing on their own, there are many benefits for small babies as well. Babies who have food allergies frequently suffer from digestive issues, including reflux. Eli was diagnosed with both colic and reflux long before his food allergy diagnosis, and wearing him tight against my body was one of the only things that calmed him. If you have a baby who frequently vomits, wearing him or her in an upright position can also help prevent the baby from choking and allows the wearer to monitor breathing easily and at all times. Just make sure the small baby is worn high and in a tummy to tummy position for easy monitoring. Our stretchy wrap worked wonderfully for this, but a woven wrap or ring sling would work equally well for a young baby. Whatever carrier you use, it’s important that it fits both you and your baby safely and comfortably. If you need help choosing a carrier for your baby, toddler, or older child, please see the link to BWI’s page at the end of this article.

Conclusion

Our carriers have allowed our son to safely go on countless adventures. Too many to mention here! But here are a few more: Latino Heritage festival, the zoo, the aquarium, the pumpkin patch, the science center, and even to see Santa! Thanks to toddler wearing, we have really been able to get out and enjoy our lives. Best of all, we found a way to give our toddler the normal childhood every little one deserves without compromising his safety.

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Writing this blog post and seeing all of the pictures of our adventures laid out in one place has definitely brought me to tears and reminded me of how grateful I am on this journey. Even though food allergies are never easy, no matter how much experience you have with them, I do believe that everything happens for a reason. My son’s food allergy diagnosis is the reason I am a babywearing educator today, and it has lead me to a supportive tribe of wonderful parents in both the BWI and food allergy communities. My hope is that this blog post will help at least one food allergy parent out there to navigate their new diagnosis with baby or toddler wearing, whether their child is one or five. I also hope to have given other BWI educators some useful babywearing strategies and suggestions for their members with food allergy little ones. I started out not knowing that anything beyond a Moby wrap existed and have ended up happily wearing my now 3 year old for the past two years. Our journey will continue to change as we welcome a new baby to our family in a few months and begin an adventure in tandem and newborn wearing. <3

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I would like to give a very special thanks to the BWI volunteers and food allergy/FPIES parents who provided their input, experience and suggestions to help make this article as thorough and helpful as it could be. Your insight is so appreciated. You are all amazing for the sacrifices you make each and every day to keep your little ones safe. <3

To learn more about carrier options that may work best for you and your food allergy child, for information on babywearing safety, or to find a Babywearing International chapter near you, please visit  www.babywearinginternational.org.  And for more information about food allergies in children, please visit http://www.kidswithfoodallergies.org

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