It happened. However it did, you found out that your sweet baby has a food allergy. For me, my baby was just 8 months old when we experienced our first allergic reaction.
I was overwhelmed, and honestly just scared. Maybe you are too.
Our pediatrician was our first phone call; we called them immediately during his reaction so they could advise us on what to do.
Note:
If you have not already contacted your pediatrician, this is the literal first step. From there, they should be able to provide you with a referral to an allergist to find the right next steps for your family.
We were told to avoid giving baby peanut (the first food he reacted to) until we could get further testing. Our pediatrician was actually able to get us in for blood work within 72 hours. They wanted to run an initial analysis for peanut along with an iron test they wanted for his 9 month appointment anyway.
This allowed us to avoid the blood draw and just do a finger poke. We agreed and immediately went in.
They called us within a couple of days with the results. The bloodwork was positive for a peanut allergy. They prescribed epinephrine immediately and referred us to an allergist. Our wait for the allergist was a long 6 weeks. We were lucky. Many food allergy families have to wait several months for the first appointment with the allergist.
Maybe this is where you are right now.
You’re in between that first food allergy reaction and that first appointment with the allergist. For me, this waiting period was so, so difficult. I didn’t have the first clue about food allergies.
My husband went to pick up the EpiPens from the pharmacy. I remember just staring at them, feeling like I didn’t have a clue how to manage this for my son.
Since my baby was only 8 months old, we were told we needed to continue with introducing solid foods but avoid peanut and other nuts until we could get to the allergist. Suddenly, something that had been such fun, was now terrifying.
I felt overwhelmed. Alone. And to be honest, I didn’t know where to start. If that’s you, I promise that you’re not alone. I had all the emotions during that wait time. All of them.
Here are 5 things that helped me to take some steps forward and I hope they prove helpful to you too!
One step at a time.
Step 1: Read and Learn
For me, knowledge was power. It helped me take what felt like this huge unknown and break it down into something that I could understand. The latest statistics from the CDC shows that 1 in every 13 kids, or 8% of kids in the US, have a food allergy. I quickly learned that millions of people were in the same boat.
There is also incredible and hopeful research being conducted, as we speak, to better the lives of people living with food allergies. There is hope, Momma.
The more I read, the more I saw that we would figure this out, we could manage this. You will too. You will figure this out for your child, for your family.
Sometimes the things I read were really hard. Learning about the severity of anaphylaxis was no emotional walk in the park. To be honest, it terrified me. Learning the challenges that we would face, that my kids would potentially deal with, was very emotional.
This can be really tough. Take breaks when you need to…aka stop frantically searching Google for a bit. Give yourself room to process this. Be mad, be scared, cry, enjoy the time when you’re not thinking about it. Whatever the emotion is, just let it be.
Even though it was difficult, the knowledge helped me sort through fact from anxiety and fear from truth. I hope you find that too.
Ideas of What to Read First
- FARE is the trusted source of information about food allergies and I read their Newly Diagnosed section. This is a GREAT resource for you!
- FAACT (which stands for Food Allergy and Anaphylaxis Connection Team) is another resource for you to have on your list. This group excels in advocacy for the food allergy community and also puts together comprehensive guides and educational materials. I highly recommend reading their Newly Diagnosed Guide as well.
- For those of you experiencing Peanut Allergy, I recommend The Peanut Allergy Answer Book, 3rd Edition by Michael C. Young, M.D. At times, it’s a lot, I’m not going to lie. But it was factual, informative, and was the first book I bought after my son’s diagnosis.
- I would also encourage you to check out the Top 8 Resources for New Food Allergy Moms guide that I put together. This is the list that I wish someone could have handed to me during that first year. I hope this list is helpful to you!
2. Make Friends with Epinephrine
When we were prescribed epinephrine (we had the EpiPen Jrs.) for my infant son, I was so intimidated by them. My husband and I were terrified that if we needed to use them, we wouldn’t know how to respond correctly. I knew that we needed some practice. I needed to increase my comfort level with them. You likely will too.
Here are a few places for you to start.
What type of injector do you have?
First, what type of injector do you have? Here is a guide from FAACT to the different epinephrine injectors available in the US. This guide includes helpful training videos on how to use each device.
Learn about your device and how to use it. There should be a trainer injector included in your prescription. Use the trainer to practice and get familiar with the device. An emergency situation with your little one is not when you want to figure out how to get comfortable with this.
I know the emergency scenario is so hard to think about. I hate it. But practicing now and learning about this makes your little one safer. It’s the same principle behind why there are fire drills and CPR training. One of the best ways to prep yourself for an emergency situation is to have practiced enough so that your response is muscle memory.
The training videos in the FAACT guide are so helpful. I felt a lot better after watching them and I think you will too.
How to Remember to Bring the EpiPens
I also quickly learned that I would need to develop new habits to remember to always bring the EpiPens with us. The prescription we were given came with two EpiPens, and my husband and I thought, “Oh, so then there is one for each of us to keep.” WRONG!
Do not separate the EpiPens.
It wasn’t until I was doing more research that I learned that we were supposed to keep the two EpiPens together at all times. No one told us this.
The reason to keep them together is you NEED to have two doses present in an emergency situation in case the first one is not enough. Do NOT separate your EpiPens!
We tried a few different ideas for remembering to bring them everywhere. What wound up working for us was to keep them in the diaper bag because that was always with us whether we were at home or on the go.
We hung the diaper bag by the door when we got home, so if we were to need them at home we would know exactly where they were. We also were sure to hang the diaper bag up on a hook so they were out of baby’s reach.
Another trick, we put the car keys IN the diaper bag with the EpiPens so that we literally could not drive off without them.
Katie even hung a reminder note on the rear view mirror in the car!
For those of you with older kids, a small backpack that goes everywhere with your child could be useful too!
Find A Carrying Case
Eventually, I stumbled across these awesome cases from AllerMates. This is not an affiliate link, this is actually what I use. This allows us to keep the epinephrine, Benadryl or Zyrtec, and emergency action plan all in one spot. These are what we still use for my son and my daughter. I highly recommend them!
Whatever system works for you, the key is that you always know where the EpiPens are, whether you are at home or on the go.
3. Learn the Signs of a Reaction
The Food Anxiety is Real
One of the most challenging things for me in the first few weeks after the diagnosis, was the bizarre feeling that food had now become this potential threat to my child. From the moment my son reacted to peanut butter, my relationship with food was forever changed.
I had never been nervous around food before. My husband and I had relatively healthy eating habits, even though we weren’t in the practice of reading labels. Besides choking risks, I had never before been concerned that food could cause my son harm, much less the concept that eating certain foods could create a potentially life-threatening situation.
I had certainly never feared food.
And you may also be feeling this same conflict of emotions. You feel that food now has this potential ability to cause harm to your child, yet you need to feed your kids. And you need to feed them multiple times per day.
All of a sudden, I found myself so nervous to give my son food. Between breakfast, lunch, and dinner, and two snacks, I was now experiencing this stress 5 times per day. To add on to these nerves, he was only a baby at the time so we were still introducing new foods! With every new food, I couldn’t help but wonder, will he react to this? Will this new food be ok?
It was stressful, but I figured out some methods that worked for us which gave me more confidence, and helped us through this.
Note:
Speak with your allergist regarding new food introduction. Based on a variety of factors, your allergist may have a specific protocol they would like you to follow for introducing certain foods.
Build Your Confidence
One thing that really helped me was to learn the signs of an allergic reaction. This empowered me to know what to look for, and helped me to build the confidence I needed when feeding my son.
Even though he had reacted before, reactions can look different each time. I also didn’t know yet if he was allergic to other foods, which I now know that he was. Those reactions had the potential to look different than what I had experienced before, so it was important to know all of the signs.
I know how this fear can freeze you and make you not want to try any more foods. But the more I learned, the more I believed that I would recognize the warning signs and then respond accordingly. I hope that learning this will build your confidence as well.
Here is a guide to recognizing the signs of an allergic reaction from FAACT! I printed this out and had it handy in my kitchen. I also had it saved on my phone. If you have an iPhone, you can set it up so that if you say “Siri, allergic reaction” she will pull up the PDF automatically.
You Can Do This
I know how scary this is. My son did have future allergic reactions to different foods (dairy and then apple skin of all things, more on that later). When we began introducing food to my daughter, she had an allergic reaction to bananas at 6 months old.
However, because I knew what to look for, I was able to respond immediately and make sure they both had what they needed. You can too.
As parents, we can’t control what we don’t know. For instance, we can’t control if there are other foods that our kids are allergic too. I wish we could. Believe me, I wish we could take the surprise element out of this, but we can’t.
What you CAN control is how prepared you are to manage the situation should it occur. That is in your control. Work with your allergist. Learn the signs. You can do this.
4. Build Your Support
One of the things that I hope you hear so clearly from me is that you are not alone in this. You are in very good company. Presently, there are so many other parents who are in the same boat as you, myself included.
There are approximately 5.6 million kids in the US who currently have a food allergy according to kidswithfoodallergies.org. There are literally millions of parents who are walking this road with you. The food allergy community is a large one!
As a result, the good news is that the amount of awareness, education, and resources are increasing. There are a variety of ways for you to build support around you and your family!
Here Are A Few Resources
Support Groups
- Join a Support Group. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. FARE can connect you to a support group based on your location!
- FAACT also offers the opportunity to join a support group near you!
- Join a Facebook Group. I quickly found that there were groups on Facebook full of other parents who were navigating this too. Check for groups that would best serve you.
Some of the groups are for allergy parents in specific geographic locations. Others are for managing specific allergies. I have learned so much from these other parents and it has been a great resource for asking a quick question.
However, I will caution you with this.
NOT everything you hear in these groups is accurate. Remember, these are other parents posting on Facebook, not allergists or medical experts.
Additionally, you will also see that different people manage their child’s allergies differently. Makes sense, right? What works for one child or family may not work for another. You will discover what is going to work for you, and what won’t work. This is all part of the process. Every child’s allergy and experience is different. Every family’s comfort level for various scenarios is different.
Your primary source of information on specific decisions ALWAYS needs to be from your allergist. So I would advise you to soak in what you can learn from these groups AND also remember that the information in the groups is coming from non-medical parents, just like you.
Look For the Listeners and the Learners
I have been blessed with a great circle of friends. There were two in particular who I really opened up to about what our family was walking through.
They listened well.
Although they can’t fully understand because they aren’t living this themselves, they were open to learning and listening. Find those people.
You will notice that your friends and family will respond differently to this diagnosis. Some will overwhelm you with their wonderfulness. Others may greatly disappoint you. I have experienced both.
Look for the Ones Who Give You Space to Figure this Out
As I was navigating the early stages of learning how to manage food allergies, we had also been planning a trip to an indoor waterpark with another family.
Traveling with food allergies is a hurdle with its own challenges, but definitely worth it! I was nervous about being away from home, without our usual food, and sharing a suite with them because I didn’t know what they would be bringing for food.
My friend listened, was so graciously patient, and just let me handle all the food. All of it. I got to shop, read all the labels, and bring all the food. Then we just split the bill.
She let me do it all so that I didn’t have to worry about what they would potentially bring into our shared suite.
Is this what you have to do? Not necessarily, but it’s what I needed at that time in my food allergy journey to feel comfortable so we could relax on vacation.
Find those people who are flexible enough to give you some space to figure out your new normal.
Be Open To Counseling
As you navigate all of this, pay attention to how YOU are doing emotionally. Managing food allergies can be highly anxiety producing, especially in the beginning.
If that’s you, you are not alone. So many food allergy parents navigate this anxiety on their own and don’t seek the additional support that could be really beneficial.
I would encourage you, especially with the new age of tele-health, counseling has never been more accessible. Many insurance plans even offer a few free sessions.
As much as you are doing to take care of your kiddo, remember to take care of you too!
A counselor can be someone in your corner who literally gets paid to listen to you and find ways to support you.
There are even counselors who specialize in working with parents of children with food allergies. You can find a list of them from the Food Allergy Counselor website!
Be open to seeking out this support. After my second child’s food allergy diagnosis, I began to notice that my anxiety was increasing and I wasn’t feeling as much like myself.
Candidly, I was a little embarrassed to reach out to a counselor for this. But I did, and it was hands down one of the best decisions I’ve made.
You have a lot to manage, Momma. A little extra support can go a long way. Be open to giving yourself more support through the help of a counselor.
5. Remember to Enjoy Your Baby
When you enter the world of food allergies, it can feel really overwhelming. Initially, all I could feel was the fear. I was teary for 3 straight days after the diagnosis and I could hardly talk about it without crying.
Although I don’t know your exact circumstances, I do know how hard this is. I really do understand.
So hear this gentle reminder. In the midst of processing this new reality, remember to enjoy your baby. Enjoy the snuggles, the games, the peek-a-boo play, the giggles.
Above all, take a break from the worried conversations, the reading, the processing, and google searching and soak in the amazing child in front of you.
Your child’s food allergies do not define your child.
It’s simply a part of what makes them, them! And you have the privilege of caring for them. You have the opportunity to teach them how to thrive in life, and to manage this part of life.
Everyone has challenges. Everyone. Living with food allergies is one of my children’s challenges. It is one of your child’s challenges. And they can overcome it, manage it, and thrive!
As the food allergy mommas, we get to be a part of empowering them. We get to shape that confidence in them. We get to show them the way.
It will get easier.
I’ve been at this for a few years now and I can tell you this, it will get easier. And although right now it feels like you are drinking from a firehose, it feels that way because you are.
It’s a very steep learning curve. Especially the first year. I know the stakes are high and I live that pressure every day. You will learn a lot. You are learning a lot. And through that, you will find a new normal.
You will find food your baby can eat. There will be new brands, new resources, and support. You will know the signs of a reaction. It’ll get easier to remember to bring the epinephrine. You will meet other mommas walking through the same thing. You can and will create a wonderful childhood for your baby.
The mommas who went down this road before me told me this constant refrain, “It will get easier.” I share it with you, “It will get easier.”
So, for today, I hope you can take a deep breath, go on a walk with baby, play your favorite game, or simply soak in the snuggles.
One step at a time.
Breathe Momma.
You got this.
Lauren
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