What I wish other parents knew about my child’s allergies

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Parents on the PSP Allergy Group have shared their stories to help folks educate themselves and learn compassion for those raising kids with allergies. This article also contains wisdom for those navigating an allergy diagnosis.

 

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Click to skip to thoughts for parents navigating a food allergy diagnosis or facing a potential diagnosis.

 

Members respond to the questions:

 

“If I could tell other parents anything about my experiences with my kid’s food allergies it would be…”

 

“Here’s what I wish people knew about allergies...”

 

~ ~ ~

 

“This is what I wish people knew:

 

My child could die from something she ate. She thinks she could get really sick and have to go to the hospital. She knows she could have trouble breathing. She knows that we would need to use her epi pen. But she's 5yo and doesn't fully grasp how it could be SO much more than trouble breathing and a trip to the hospital. Play dates and parties and class celebrations and restaurants are scary because no matter how many times you raise awareness and ask the questions, there is always a what if - what if there's cross contamination? What if the adult she's with freaks out and doesn't administer her epi pen in time? What if she forgets her backpack en route? What if there's been a recall on a food that was once safe? At 5yo, she's old enough to be aware and alert others of her allergens but not old enough to pore over lists of ingredients and still naive enough to believe that adults have ‘checked.’ She's old enough to carry an epi pen but too young to self inject or to always remember to check that she has her epi pens with her. 

 

I wish for people to know that she is a girl with big hopes and dreams and like all parents, we are just trying our best to keep her safe. Her food allergies are not an inconvenience to her and I wish others would not view them as such - it's that mindset that I wish people understood. We are just doing what we need to keep our kids safe. Safety measures are not an inconvenience. And FWIW - allergy moms and dads will always have a safe snack for their little ones so please don't be offended when we decline any snack or food you offer even after we've cross examined you. Sometimes we mamas and daddies need a break from worrying and having her eat our safe snack/food is a lot less nerve racking than having her take teeny bites and monitoring for signs/symptoms. Because, yes, that's what we need to do sometimes when we introduce new foods. 

 

Thanks for taking the time to read this!”

 

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“My son is 2.5 and we discovered he was allergic to nuts when he was 12 months old. It's especially scary because he is not aware yet of his allergies and is at the age where he just grabs something someone offers him or is out on the table. I would like to say the following...

 

-All food allergies are serious and could potentially be life threatening. So please don't ask me how severe his allergy is, yes we carry an EpiPen everywhere because he could go into anaphylaxis if he is exposed to any nuts. 

 

-Please ask the parents if you have any questions about the safety of a food and have the package out for us to read. Cross contamination is very serious and something I've found people overlook. 

 

-Just because child A's parents are comfortable with something doesn't mean I am even if our children are allergic to the same thing. 

 

-It's so nice when we don't have to worry about what our child eats when we visit other people's houses who are aware of allergies because it means we can relax and it's so incredibly thoughtful to bring food that you have checked the ingredients label and you know is safe for our child to eat. We really appreciate it. 

 

-It seems obvious but anything made from nuts is NOT ok for our child who is allergic to nuts (yes this includes almond milk even though it's milk)”

 

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“If I could write an open letter to anyone involved with my son and his allergies starting it with ‘here is what I wish you knew’ it would be this. 

 

Here is what I wish you knew:

 

This is E., he is a healthy big boy who loves every person he meets as much as he loves his favorite stuffed animal. He is bright and smart (aren't they all!!) and looks perfectly healthy on the outside. I am E.’s mother, proud of my strong boy that sees no harm in anyone; I too look healthy on the outside though sometimes neurotic and tense for no specific reason. Like that time I saw a child feeding nuts to squirrels and shortly after wanted to play with my son while holding hands. I was sweating and anxious for the safety of my son. E. looks healthy and strong, but unfortunately the smallest thing can make him so sick it might kill him. My husband and I try to let him do everything he wants and always provide him with equal chances and opportunities. But it is not easy and there are times where I rather not be around you if I know you don't care about our situation. (Which you have all the right to).

 

I want you to know this:

 

-Please know not to say it is OK for him to have a bite of some of your child or your food after I said he couldn't.

 

-Please don't make me explain in front of all his friends and family that he is different.

 

-Please know the proximity of his EPI pen is not a reason to disregard all his allergens and offer him whatever you please.

 

-Please know I don't mean to be a psycho by telling you or your children they can't touch my son after eating an allergen.

 

-Please know we will be the first to tell you if anything changes in his allergens, we know he can outgrow all of them but at this time it is useless to us. 

 

-Please know I am not doing this for fun or for attention, nor is my son.

 

-Please know I am sorry that ask/tell you the same thing numerous times. I want to make sure we're on the same page because I have seen my son's limp body in the ER when had a severe reaction, and I don't ever want to see that again.

 

-Please know my husband and I are scared sh*tless (sorry!) 99% of the time and ALWAYS walk on eggshells. And it is exhausting at times!

 

Please know, I understand that every child has special needs in one way or another. I know that there are people who deal with much worse and much less. I respect everybody's problems for what they are to them, so please do the same to us. It is scary to know that 1 misstep can take your child away from you. And if you do not feel the need to respect our situation then please understand we have to choose what is best for our family. I don't want to be ‘that’ parent, but unfortunately life made me ‘that’ parent, and it is more annoying for me than it is for you (believe me!).”

 

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“My son has a life-threatening egg allergy, which we discovered when he was almost a year old when, like so many of you, we had to make a trip to the ER. He also has eczema. He is 2.5 now, and he started preschool this year, which has brought with it a whole new experience of allergy navigating to be done.

 

Here is what I wish people knew:

 

Different foods are healthy for different people. Let's teach that to all children, whether they have allergies or not. It is generous to want to share food, but please always ask the adult with a child before offering.

 

The level of vigilance required to parent a child with a life-threatening condition (of any kind, not just allergies) is exhausting. If we seem like we are repeating ourselves or questioning your diligence, it's because we are regularly forced to trust the judgement of complete strangers with no allergy training to keep our children alive. The consequences are literally that dire.

 

We fear that we will not think to ask the right questions, which is why we ask so many. For example, in an ice cream shop that sells both vegan and non-vegan ice cream, had I not thought to ask whether they use the same scoops for both types, we would've been headed to the ER. In another instance, if I hadn't overheard the woman in line ahead of me mention that the restaurant we were in uses mayonnaise to grease their panini press, would I have thought to ask that? I didn't even know that was a possibility! Worry over not knowing enough to ask the right questions colors every experience that we have when eating outside of our home.

 

I also want to say THANK YOU to every compassionate adult who has reassured me that keeping my child safe and alive was a priority that outweighed any inconvenience that it presented to them. There are a lot of wonderful folks in this community who help ease our burden, and they deserve a shout out!

 

Thanks for listening!”

 

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“Here's my recent story:

 

10 of us were out to dinner at a restaurant.  My 3-year-old son is severely allergic to peanuts and tree nuts. When we placed our order, we asked the waitress if any of the dishes had nuts or were cross-contaminated by nuts.  She said no. We ate our dinner without incident.  Then we ordered donuts for dessert, fried in vegetable oil and coated with sugar. A few bites in, my son, who loves sweets, said he did not like the donut.  Then he complained that the sugar made his throat hurt.  A few minutes later, red splotches appeared all over his chin and cheeks. We recognized it as an allergic reaction and my cousin, a family doctor whose son has multiple allergies and who always carries around Claritin children's chews, gave one to my son.  We monitored him and his swelling went down after 10 minutes. Although dinner was over, we all stuck around for another 50 minutes to make sure he was ok, that he didn't need to go to ER or need an Epi-Pen. Later we learned that the chefs used the frying oil to flash fry a few peanuts before garnishing a chicken dish. That tiny bit of contamination was all that was needed to give my son the allergic reaction. He didn't eat a peanut.  He didn't eat something with a peanut in it.  He didn't eat something that had touched a peanut.  What he did eat was something that had touched something that had touched a peanut.”

 

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“I have two kids both with different food allergies. I just want to give a shout-out to other parents dealing with a sesame allergy, which is not required by law to be labeled on food. My daughter is 5 now but when she got diagnosed after eating hummus at 7 months, the world suddenly became terrifying. I wasn’t able to just read food labels to keep her safe. Things labeled ‘spices’ or ‘natural flavor’ (which is in almost everything) became little booby traps in all food. Family gatherings felt terrifying. I joined sesame allergy awareness groups and learned I had to look for sesame in soups and sauces, anything with breadcrumbs (nuggets, meatballs), oil which could be in anything, even pizza..... lip smackers lip balm, Clinique face lotion, candy corn, and I even read that some band-aid type of adhesives have had sesame ingredients.

 

When my 2nd child’s nut and egg allergies were diagnosed I was actually relieved they were Top 8 allergens because I felt I could trust labels and the US seems to accept these as important to label.

 

I don’t say this to scare anyone dealing with a sesame allergy, and the good news is the FDA is (in the next few years?) working to add sesame as a 9th allergen and hopefully someday it will be nationally mandated. Also we have never had any scary exposures from surprise places which makes me feel much more at ease now that it’s not as ubiquitous as I first imagined.

 

I just want to say I feel for parents that have to deal with ‘non top 8’ allergens because it can be such a different road to travel. My sister has a son with a nut allergy and our experiences and anxiety levels have been pretty different.

 

And I’ll just add that dealing with nut allergies is no breeze either! Every time I see new milks and sauces that are nut based I nervously laugh in my head... does the world really need cashew milk!?

 

Anyway this feels like more of a rant, but I respect all of you parents so much. It’s a low level constant anxiety that can be managed but never fully goes away.”

 

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“Oh, God this list is long. 

 

1) It is 100% okay to be THAT parent who says don't bring nuts, etc. because it will literally endanger my child. Don't take years to get okay with this. Just get over it. It's your child. 

 

2) Have honest conversations with your child about what is going with regards to allergies. 

 

3) If you have an anxious child (as I do) and they don't handle the emotions around their food allergies well, find a therapist who specializes in food allergies (yes, they exist). This will help your child build tools for coping in stressful situations around food allergies. 

 

4) Never use an allergist you don't trust in your gut. 

 

5) Re-educate your extended family as many times as you have to. 

 

6) Re-educate your kids' friends' parents as many times as you have to. 

 

7) As the kids get older, they will learn to protect each other. It will get easier. And they will all have some food thing. (My child eventually realized he's got vegan friends, Halal friends, vegetarian friends, friends who have other food allergies. This helped)

 

8) Be prepared for backslides in the emotional coping. 

 

9) Every child is different and will respond both physically and emotionally differently to food allergies. No one list will dictate your experience with your child.”

 

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“I'm new to the allergy world. My first kid never had any issues, but my second kid had issues from the get-go. I remember saying when he was 2 and 3 months old that I thought he had food allergies and so many friends brushed it off as ‘not possible’ since I was exclusively breastfeeding.

 

Anyway, here we are with egg, peanut and milk allergies. What I wish people knew and what I've been surprised about is that there isn't a lot of solid information out there about food allergies. There is a lot of ‘going with your gut’ with this stuff and you start to feel like you have munchausen by proxy. I have not had much guidance from our allergist other than ‘definitely avoid eggs and peanut.’ We have three confirmed allergies but half a dozen other ‘suspects’ (foods that sometimes result in hives and sometimes don't WTH??). Incidentally, after this thread came out and after hearing some of the stories about false positives I started to wonder if dairy is really a culprit of ours. My son can tolerate baked dairy. Yesterday I was rushing around trying to get the stroller packed for an outing and saw my son was playing with a milk carton from recycling but was just glad he was occupied and let it go. Did not even occur to me: MILK ALLERGY. Until he started crying hysterically out of nowhere, rubbing his eyes and face which was developing hives. Benadryl worked its magic. I feel compelled to tell people this story as if to say, ‘see?? I'm not crazy!!’”

 

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"Here is what I wish other parents know allergies...

in my case, food allergies can be serious, it can be lethal, it can be life threatening. It is not merely some hives and some itchiness. It can be real scary, it can create anxiety and it can prohibit some families from doing things they would like to do.

Both my kids have food allergies. My daughter, grew out of hers by the age of 5. She still cannot eat sesame seeds, but no big deal. Her reaction to sesame seeds are also quite mild. It is easy to handle. My little guy, has a long list of things he is allergic to. His numbers are high, he is in a clinical trial at Mount Sinai. He was rushed to ER 3x before his 18month birthday. We can't really go out to eat (we used to 2-4 times a week). We have to AirBnb everywhere we go so we can cook him food.

On a day over a year ago. I was waiting outside the school to pick up my daughter and a mom asked casually whether I am putting my little guy to school the year after and I said he has food allergies and I am uncertain about sending him to school so young (he was 2 at that time) when he does not have a firm grasp there are food he can and cannot eat. And he cannot touch/share other people's food. She turns around and casually said: 'Oh, so you are one of those protective moms.' I didn't know what to say and let it slide. But what she said had made me paranoid and have self doubt whether I was the one who is over worried, over protective and preventing my son going to school, having fun, learning things, socializing. After I processed this, I wish I was witty and self assured enough to tell her - food allergies can be very serious, it can be life threatening, she has not have to use Epi-pen on her own kid, witness anaphylaxis and her child going grey. It is not something that can be dismissed.

Thanks for reading this. Got emotional here everytime I recall this memory."

 

 

Thoughts for parents navigating a food allergy diagnosis or facing a potential diagnosis:

 

For those facing recent or potential diagnosis (not necessarily the greater public, where food allergies are often taken too lightly):

 

I wish other parents facing recent diagnosis could find up-to-date treatment and diagnosis. Unfortunately, over-diagnosis is all too common. It happened to us with a well-regarded, local dr. My son exhibited signs of food allergy from the time he was born (severe eczema and GI issues), but as new parents we were totally clueless. At 6 months, he had a reaction to peanut butter. We took him to an allergist, who did a full panel for over 20 foods. Many of them came back positive, and we were told to avoid those foods. Only later did I learn that this practice of diagnosing without exposure results in over 50% false positives and is referred to as ‘allergy phishing.’ It is not best practice. After some second opinions, we found a wonderful pediatric allergist, who was willing to do oral food challenges in a safe, supervised office setting to those foods that our son had not previously eaten. All 6 foods came back as false positives. I’m certainly not encouraging anyone to challenge results at home but only to work to find an allergist that is following the latest guidelines for testing and treatment. We are still left with a very real, life-threatening peanut allergy that has left us using epi pens, calling ambulances and visiting the ER. However, eliminating so many other restrictions and worries has been life-changing.”

 

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“Thank you for the shout out about allergy phishing. I’m not sure how often this happens but it’s so damaging - besides for the individual with the false positives, it also minimizes the severity and prevalence of allergies as a whole, which hurts the larger community with allergies. 

 

We also switched doctors because our original allergist felt too conservative.  Her approach didn’t make sense to us so we sought another opinion, and are incredibly thankful we did, as it opened many more doors for our daughter. 

 

~ ~ ~

 

A friend whose daughter has a severe peanut allergy shared that she does not force her to eat things that she is saying no to. Twice she later found out the food had peanut (or a cross contamination) in it somehow and her daughter’s refusal was her body’s way of saying this is not good for me. I remember this when my daughter is saying no to a food and use it to help me decide whether or not to encourage her to try it.”

 

 

On navigating public spaces such as playgrounds with kids who have allergies:

 

 

One parent asked the Allergy Group...

 

"As my almost 18-month-old son's playground trips have increased, so has my anxiety when it comes to being in public with his food allergies. I try to go in the mornings when barely anyone is around, but the warm weather is slowly but surely bringing more people out no matter the time of day. I have fears that he'll touch something he's allergic to (I found a whole peanut in shell in the sandbox last week) or that another kid with sticky PB fingers will accidentally touch him.

I try to give him space for independent play and to also coexist with other children, but I never, ever want to let my guard down. Is there a healthy, happy medium for this kind of supervision? Or are playgrounds danger zones we should avoid altogether? Would love to hear what your experiences have been like at the playground and other public spaces."

 

Members responded...

"I understand the need and want to live in protection of your child but kids also need to be able to play. My son has a severe peanut allergy. He wasn't usually one who picked up random things and put them in his mouth so that was helpful.

It might be useful to talk to your doctor to discover if your child's allergies are more likely to be environmentally triggered or triggered by ingestion.

My son's fears about his allergies have created instances where he has literally run down the street away from a family friend who had a peanut butter and jelly sandwich. But, by then, we knew it was an ingestible situation and he wasn't going to be eating her sandwich any time.

I would encourage you to keep going to the playground and get some social interaction for your son but to keep a close eye. This is the space that we live in as parents of kids with allergies. I promise it will get easier."

 

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"I don't have much advice.. just solidarity! I've seen kids walking around the playground with snack cups of nuts, or a kid dropping nuts and the parent not picking them all up and it is terrifying.

When Susan asked what we wish other parents knew about allergies I kind of wanted to say 'Stop letting your kids litter the playground with deadly weapons and wipe their hands after that PB&J dammit!!' but I know that it would change nothing and I'd be THAT parent.

Having said that, it would be beyond sad to keep them away from the playground and from being around others, something that is important to their development. It sucks enough that they have to live with these allergies. Your kid will soon grow out of the put-everything-in-mouth stage and start to understand that some things are dangerous for them to eat, and maybe then it becomes less fraught? As E. said, your allergist may have some insight on how serious the risk is for him."

 

~~~

 

"I completely sympathize - those allergies are scary and the easy solution would be to avoid socializing all together. (Especially in a pandemic. Right?)

But I agree with the other parents here, your child needs to play and be around other kids.

One thing that has helped us: feed your kid or give him something filling first thing as you get to the playground. This 'picnic' routine is keeping my child from grabbing other people’s snacks as we are navigating the toddler years.

Also, talking about food with them is super important. I am amazed about how knowledgeable my 3.5 year old is about his food allergies. He’s learned to ask about food, and get approval before he puts anything in his mouth. He’s learnt to recognize early signs (itchy mouth  throat and ears, cough...) and to tell us what he feels is going on with his body.
I hope this helps!"