Let's Talk About Allergies- Allergy FAQ

I want to put into perspective a moment from my life into terms that you might be able to relate with more…

You are walking with your two-year old in the park. As you are walking, you see right in front of you a gun on the ground. What are your immediate thoughts and feelings? Are you worried about the safety of your child? The gun might not be loaded. Why not just let them play with it or even just touch it? OF COURSE YOU WOULDN’T THINK THAT! Any parent’s first reaction would be of fear and worry. You would think what if your child had been alone for that moment and found the gun by themselves. What if they had picked it up? What if they would have killed themselves accidentally?

This is exactly how I felt when I walked through the park one day and saw a peanut shell on the ground. I was so grateful that I was holding Mitch’s hand in that moment. I am so grateful that I could just walk away with him. But still- those feelings and thoughts were there. What if in that one moment, I had let go of his hand to let him run and he picked up something that he thought was interesting off the ground? He isn’t old enough to know that this is something that could potentially kill him- just like a kid the same age wouldn’t know that a gun could potentially kill them. He might not have an anaphylactic reaction- just like the gun might not be loaded. Would you be willing to take that chance with your child?

I am an allergy mom. That means I am always on guard. I am always wiping surfaces, hands, and faces. I am always checking labels. I am always having to tell thoughtful friends “sorry, we can’t eat the treat you brought for us because it might not be safe”. I am always having to be the one leaving a ward party because someone brought a bag of Reese’s.  People might view me as being “overprotective”, but I am doing what any parent would do if that gun had been placed in front of your child. I try every day to help Mitch live a normal life. I don’t want him to be afraid of his allergies, but I also want him to understand them as well as any two year old can.

I have been wanting to write this post for a while, but I felt the extra need to write it after some recent conversations in the news.  Here is some FAQ for our allergy life:

What is Mitch allergic to?

Mitch has an allergy to peanuts and unbaked eggs. “Unbaked eggs” means having eggs by themselves- scrambled, quiche, French toast. The definition we go by typically to define what is safe for Mitch as “baked” is that it has to be in a recipe that is mostly flour and baked in the oven at 350 for at least 20 minutes. This is the definition I use with friends, but I also know what we have had before that he hasn’t reacted to, so I am able to make my own judgement on cookies and such that may have been baked for less time in my own home.

When did you find out that Mitch had an allergy?

Mitch was officially diagnosed with a peanut and egg allergy around 16 months, but that wasn’t his first reaction.

After touching him

Mitch had his first reaction to peanuts when he was about 3 months old. I had been eating Peanut Butter Captain Crunch (my favorite cereal). I touched him when he was undressed and he broke out in hives anywhere I touched him. You could literally see my handprints of where I had touched him. The hives went away in less than an hour, but that is when I first started getting the idea that he might have a peanut allergy. I talked to my pediatrician who advised waiting until he was over a year to try peanut butter.  

First Egg Reaction

The first time Mitch had scrambled eggs at around 7 months old, he broke out in hives around his mouth. We thought that it might have been a reaction from Gariet using his fork (which might have had a trace of hot sauce on it from his own eggs) to give Mitch a piece of egg. We waited a couple weeks and tried again in a more controlled setting. We rubbed eggs on his lips and waited 5 minutes. Then we gave him a little piece of egg and waited another 5 minutes. At that point, he had the same rash on his face. The pediatrician told us not to give him eggs at least for a few more months. I didn’t give him eggs by themselves again because we were able to confirm at 16 months that he was actually allergic.

At around 14 months, I gave Mitch a Kroger Nutrigrain bar. I didn’t think anything of it because he had eaten them before. He got hives on his face again. I read the back of the box and saw that it said that it “May Contain Peanuts”.

Around that same age, I gave Mitch a couple normal M&Ms. He again got hives on his face. I read the back of the box and saw that it said “May Contain Peanuts”.

Honestly- at this point, I thought it was all in my head. I thought I was making it up and that I was just being a paranoid parent.

First Peanut Butter 

At about 15 months (it took that long for me to build up the courage), I gave Mitch a peanut butter sandwich. I literally was scared out of my mind. I felt like something was going to go wrong. Again, Mitch broke out in hives on his face. That is when I finally made an appointment with an allergist to get Mitch tested for allergies. I needed to know that I wasn’t crazy- that this “rash”, as I called it at the time, wasn’t just in my mind.

Allergy testing

We went to the allergist and Mitch got tested for Peanuts and Eggs (Yolks and Whites separately), as well as all other nuts, milk, soy, and wheat. He had three very obvious reactions to the peanuts and both of the eggs (yolks and whites).  That is when we got a prescription for an epi-pen.

What about the idea of feeding your kids the allergens early so that they aren’t allergic?

I do believe that giving your kid peanut butter early on can definitely help, but I also don’t think that it would have helped Mitch. He had his first reaction before he was starting solid food. He would have been allergic no matter what.  

I had planned to start Mitch with peanut butter early on because of different studies I had read, but I always had a pit in my stomach. I believe that this was mother’s intuition that he was going to be allergic. I can’t imagine what would have happened if I would have started peanut butter earlier on- we might have had a more severe reaction.

How severe are Mitch’s allergies?

I absolutely hate this question. I always want to follow it up with “How much anthrax can you give your child before they die?” (Don’t worry- I don’t actually say that to people. I know that they are meaning well, but it is just hard to understand)

All allergies are severe and should be treated as such. I am not going to experiment with my toddler to see how many peanuts he can eat before going into anaphylactic shock. Allergic reactions tend to get worse each exposure. It is not something I am willing to play around with to be able to tell if Mitch is deathly allergic to peanuts or if he will just get hives each time.

Mitch also will have a reaction if someone touches him after eating peanuts or raw eggs without washing their hands or face. Hand sanitizer does not remove allergens. You literally have to WIPE or WASH off the residue with soap and water or a baby wipe.

 What is considered “safe” for Mitch to eat?

Mitch can eat practically anything. I am honestly one of the more “lax” allergy parents because I have chosen to trust labels. If the label doesn’t say anything about peanuts or eggs, I will let Mitch have it. If ANYWHERE on the package it says “May Contain Peanuts” or “Processed on the same equipment as Peanuts” or “Processed in the same facility as Peanuts”, then Mitch is not allowed to have it. This is considered a cross contamination risk.

What is cross-contamination?

I saw it once explained like this. Take a box of M&Ms and dip two or three pieces of candy in paint. These represent the ones that have peanuts in them. Then while they are still wet, put them back into the box with the rest of the M&Ms and shake them around for a minute or two. At that point if you take all of the M&Ms out of the box, you will see that there are several besides the original two or three that have paint on them. Allergens can be invisible. You can’t determine which M&Ms are safe from cross-contamination and which ones aren’t.

Our allergist explained it like this. Giving your child something that “May Contain” their allergens is like playing Russian Roulette. You might be safe most of the time, but all it takes is one time…

If you might remember earlier in this post, Mitch actually has had reactions to cross contamination risks.

People don’t realize a lot of cross-contamination risks because they don’t look at labels. I have had friends bring “safe” rolls from Costco that I know are not safe. Cross-contamination is such a hard concept to understand if you don’t live with the reality of allergies every day.

Why can’t Mitch have ______ that I made at home? It doesn’t have any peanuts in it.

I seriously LOVE food that other people make, but most of the time I do not let Mitch have things that are not made in my own home. Why? Cross-Contamination.

You likely have peanut butter in your kitchen and use it more regularly than I do. If you didn’t wash a cookie sheet, a knife, or a spoon just right, then that food could have trace amounts of peanuts in it.

Even if this wasn’t the case, you likely didn’t check the labels on the flour, sugar, baking soda, chocolate chips, etc. that you put into the recipe. They could have a cross-contamination risk themselves, which would then make the food a risk as well.

Please don’t feel bad when I don’t let Mitch have something that you made. That being said- I personally love food that other people make and will still eat it if you drop food at my house.  Mitch will just get his own treat or food (don’t worry- I don’t let him starve)

What does an allergic reaction look like? When do you know if you need to use an epi-pen?

The only allergic reaction that Mitch has had has been hives on his face and hands after exposure to his allergens. Again, that doesn’t mean that this will always be the only reaction and it is not something I am willing to play around with. Reactions are known to get worse after each exposure. I treat any reaction seriously and watch him very carefully after one little hive shows up on his face. We follow the FARE action plan. This means basically if there is one severe symptom or more than one mild symptom, we will use the epi-pen. Luckily we have not needed to use our epi-pens, but it is still good to always have a consistent plan.

What brand of epi pen do you use?

We keep the Auvi-Q in our backpack, since it is the most "user friendly". Note- the needle goes back into the device after firing.
https://www.youtube.com/watch?v=d3PntHvNiTY

We also have the Adrenaclick in our home and when we are traveling. Note- the needle does NOT go back into the device after firing. It needs to go directly back into the case after using.
https://www.youtube.com/watch?v=3xvrBJph89k

What do you see for Mitch long term for his allergies?

Lots of well-meaning people tell me about ‘this study’ or ‘this patch’ that can help build up immunity to allergens. Trust me when I say, that I am constantly looking up these things to. I am particularly interested in the OIT program, but not right now. Mitch needs to learn how to communicate before I am willing to put him into a study. We know that Mitch will get hives when he is exposed to his allergens, but he isn’t at the point where he can tell us “my throat is itchy” or “my stomach hurts” after eating something that has peanuts or eggs. We are not willing to put him through something until he can communicate these types of things proficiently.

I am constantly on the lookout for new studies and things to help with his allergies, but I also have to accept that this very realistically is a life-long allergy. 80% of children grow out of egg allergies. 20% grow out of peanut allergies. We will see later on where Mitch lies in this statistic, but for now I accept him the way he is- even if it means that I can’t have peanut butter.

What do you wish people would know about allergies?

I honestly just wish that people would just understand the seriousness of allergies. A simple granola bar or peanut butter sandwich could literally kill my kid. That isn’t something I like to think about, but it is the truth that I have to live with every day. I am his voice and his advocate. I am the ‘crazy and overprotective’ allergy mom who will do anything to protect my son.

I wish people would know the struggle that it is to be an allergy parent. The moment that a hive develops on my son’s face, I immediately run through everything that he has eaten or touched that day. I am watching carefully to see if more hives develop. I watch for other symptoms. I try to not worry him and we normally just sit and watch a movie or show for an hour or so to just make sure that he is okay, but these moments are always scary. I am honestly so scared that I am going to give something to my child that could kill him. I live with that fear and anxiety every single day.

I also wish people would know that it is okay to ask questions. It is okay to be curious about allergies and to want to know more. It is okay to ask about foods that are safe for Mitch. It means THE WORLD to me when I go over to friend’s houses and they text me beforehand asking what is safe for Mitch or if they save all of the labels so that they can check them with me before giving Mitch a treat or food. It is the little things that are a big deal to allergy parents.

I appreciate all the friends and family members who have gone above and beyond to help keep Mitch safe. It really does mean a lot to our family! So THANK YOU!