Handling Severe Food Allergies Away from Home

Parents Forum
1

DS has a severe peanut/nut allergy that requires epipen. He’s very sensitive to even traces of peanuts.

DS is homeschooled so I had his epipen during school hours. When he went to co-op or bball practices/games, he had an epipen in his backpack.

He mostly hasn’t had to make much of an effort to keep the epipen with him, and during times when it has required effort, he has NOT done a good job. For instance, when going out with friends, he typically hasn’t taken it, and when I’ve found out and forced him, he usually forgets about it and leaves it somewhere.

How have your kids with severe food allergies handled keeping up with their epipen and anihistimine while at college and traveling?

Ds is headed on a mission trip to Jamaica in a couple of weeks so it is a major concern. It’s also a concern for when he goes to college - where would he keep it if he runs out for pizza with friends, a pick up basketball game, or some other outing where you don’t typically have a backpack with you?

2

The kids I know with severe medical issues who went away from home had all demonstrated several year’s worth of maturity in handling their condition. Diabetics who were on top of their numbers; a kid who was in the “not relapsed but not considered cured” phase of a childhood cancer, plus all the kids with allergies, thyroid issues, etc.

I think you tell your son- “You demonstrate the maturity to handle your illness or you find a college within commuting distance”. Period. He leaves the house with his epipen and comes home with his epipen. Just like the insulin dependent kids, or the kids with an eye condition who don’t leave the house without their drops, or a kid with a seizure disorder who keeps the medications with her at all times AND never takes off the medical alert bracelet- not ever.

It takes effort- of course. But I think this is the first step. Having meetings with the college nutritionist and head of food services, teaching the roommate to use the epi-pen, those come second. First he needs to show you that he takes his condition seriously- 100% of the time. If that means a backpack- so be it. If it means a smaller fanny pack type deal- so be it. But 100% is the starting point.

3

Our S has always kept 2 epipens in his backpack at all times. He started this in grade school and has continued this practice to today (Junior at college). Since his early years we stressed the necessity of him ALWAYS keeping his epipens with him. We have turned the car around after 2 hours of vacation driving to retrieve his epipens, and once when we flew on vacation and lost the epipens we worked with the pharmacy to get resupplied. His current motto is “if I have my wallet and my epipens I’m good”.

Thankfully, most colleges have decent food allergy supports in place, although some are much better that others. Our S is never without his backpack with epipens. Many students always have their packs with them so that’s been a good strategy.

4

Would wearing cargo pants help ?

5

@Publisher I think that could help. I’m going to call the allergist to see if we can get a different type of epipen that fits in a pocket.

@Rivet2000 What size backpack does he carry?

6

It’s basically the small backpack he uses for class. He’s never without it. The standard epipens are hard to keep in a pocket, so you may consider an Auvi-Q. Our son basically has both. If he finds himself in a situation where a packpack is a non-starter he’ll take his Auvi-Qs.

Travel (even in the US) remains tricky so when traveling he always takes some safe snacks with him as airline food is not safe and connecting flights might not allow a quick trip to a safe option.

7

If he can’t remember to take his backpack with him, will he remember to take the epipen out of his caro pants before he washes them???

8

@Rivet2000 Yes, I’m going yo call this week to see about getting an Auvi-Q. Not sure if they are covered by insurance, though, and not sure how much it will cost.

Does he keep the epipen in his carry on on the plane? Is there any issue with that with airline security? Will he need a doctor’s note?

@3scoutsmom Yes, I have thought about that. I am going to have to help him come up with a plan and monitor it until he has it down 100% as suggested above.

9

We get two sets of auvi q at no cost from the company. You should definitely get them. Also, look into “running buddy” carrying case. It attaches to your pants. No velcro, no belt. I am still working with my teen on the habit of carrying it but i think it is better to have a designated fanny pack/backpack/running buddy than switching them in and out of the daily pants pockets.

10

Yes, he always has an epipen/Auvi-Q - planes included. No issues getting through security. He keeps a copy of the prescription info with him in his wallet (ask your pharmacist for an extra sticker with name and script number on it) but has never been asked for one. Additionally, we always make sure we have a refill available just in case he is away and needs an emergency refill.

11

I have kids with food allergies, celiac, seizure disorder, and type 1 diabetes. This transition is a process, not an event. I carefully planned the transition over years. For the diabetes, that meant meeting with school nurses and teachers to explain what we were trying to accomplish each year in terms of steps toward responsibility. I expected mistakes and omissions along the way, so I would say having a training wheels period is helpful. No offense, but if you had possession of his EpiPen during school hours, that may not have been a training wheels situation.

For food allergies or celiac, once the kid was admitted, he met with the disabilities office and we met with dining services. They explained that there were menus available online, that measures were taken to avoid cross-contamination and where that was not safe, and offered to make meals in advance that were safe, with a phone call.

Much of this involved the student him or herself checking online, making safe choices, or making the phone call for an advance order. So it isn’t just taking responsibility for the EpiPen that is needed.

I have to admit, my son wasn’t always compliant with his EpiPen but there wasn’t much I could do honestly. He was aware of the risks. I gave him the proper training and time to take it on and accompanied him on meetings with the college but after that, it was up to him. I do not feel it is proper to limit choices based on a disability, but that’s me.

I would suggest that your son meet with an allergist who can urge him to take the EpiPen with him and explain why. I would suggest that you begin an accelerated process of disengaging. It may be that he has coasted knowing you are involved, or that he is somehow asserting himself by forgetting so to speak. Or he is just a young person in denial.

In any case, it is very important for him to avoid exposure, and I hope he is well-informed on that. EMT’s have epipens and although I know things can happen fast, that is an improvement.

I live with risks for my kids every day. It is hard. But they have to grow up and believe me, perfect compliance is never possible.

12

My youngest D23 has a nut allergy. My wife has done a great job constantly educating/hounding D23 about her allergy. It is a little easier for her since she now just always carries a purse with her with her epipen in it.

There just too many stories of kids/people being too laxed about their allergy and bad things happening. Basically I think you need to scare him into being vigilant about carrying it. D23 has been reading labels on food forever. She is trained not to eat anything without looking at it. And to never take premade food without talking to the person who made it.

Find articles about deaths to show him how serious this really is.

13

@jazzymomof7: Does your son have other food allergies ? Peaches & strawberries can be a significant problem in addition to peanut allergies.

14

The essential shift involves stepping back and letting your child take charge. It is his condition, and he will have to manage it throughout the rest of his life. It definitely should not be a battleground between the two of you, because it is not about his learning to comply with your directives but rather about his learning to make his own decisions about his own body. Holding and carrying his epipen now needs to become his job. It should no longer be in your possession, just his.

Let him plan how to do it. How does he want to carry his epipen? (Regular pockets of his pants- cell phone in one pocket and epipen and keys in the other? Cargo pants? Backpack? Small daily use backpack or manpurse or fanny pack?). What sort of medical ID does he want? (A bracelet or just an alert on his cellphone and a card in his wallet?)

He needs to practice going out into the world, with friends, etc., and ordering food. He, not you, needs to be the one who asks the questions of servers and makes the decisions.

Your son’s upcoming mission trip is a great thing! My son, with a different sort of major medical disorder, had been self managing during the day since fourth grade, but we were helping out at night when he was sleeping, and serving as consultants to his choices. In the spring of his senior year, he went on a short vacation with his close friends from high school. That was like a short practice for what he would have to do in college. It was so good for him to manage the independence, in all respects, not just medical— i.e., everything involved in the travel.

Your son has to become the foremost expert on his own body and an advocate for himself. The sooner you step back and let him step into the role, the better. Do not scold him or nag him, and do not build fear (horror stories won’t help; there is enough anxiety about growing up and being on one’s own without adding to it!). Just express confidence that he is an adult now and he is ready to be in charge. You can help him think about possible choices (real choices, not ones where you have a preference), and let him pick. Without fuss or fanfare, show your belief in him by letting him take charge.

P.S. Air travel won’t be an issue. Always carry a doctor’s note with you saying he has to carry his equipment (and food?) with him at all times. He can show it to anyone who asks. But probably he never will need to show it to anyone. It has been our experience, for ten years so far, that airport staff and other security guards who look into your bags anywhere (or see medical equipment on your body) are very familiar with this sort of thing. They see it all the time.

15

Air travel is a huge issue. With airlines not supplying snacks on flights people carry anything and everything on board. I questioned TSA about peanut butter sandwiches and they replied that they are subject to the 3-1-1 rule. I have never seen that enforced. Although my children are now adults and can speak up for themselves I hate it when they fly alone.

A single Epi-pen may not be enough to ensure safety. I have read some news articles in our local paper about three doses being required to bring the reaction under control.

16

How large is a regular epidemic now? I was trained to use them when I was working…and I don’t recall them being all that huge that they wouldn’t fit into a large pocket…or a small backpack. Has that changed?

17

If a generation of kids can always have their phones with them, your son can learn to have his epi with him in a backpack or medical fanny pack or man-purse or whatever he likes. Or he stays with you 24/7. His choice.

Even the queen of England carries her purse. Nothing in it, but she has it.

18

https://community.kidswithfoodallergies.org/blog/what-are-your-options-for-epinephrine-auto-injectors describes the various epinephrine auto injectors, if you want to shop by size/shape for ease of carrying.

You may want to pay attention to peanut desensitization clinical trials and such, which aim to get the patients to the point that the risk from minor cross contamination or peanut dust is lower than it was before.

19

I have learned that I need to trust my son – he is 18 years old and knows his situation. He is severely allergic to sesame, so much so that even kissing a girl that had eaten sesame hours earlier sent him to the ER. He has several epi pens, and I just pray that he does take them. I have a feeling that he does not, but I need to trust. Luckily, he can detect sesame in foods as his tongue goes numb quickly.

It is stressful, but they need to learn how to live with it.

20

My son has a severe peanut allergy and is a senior in college now. He’s been carrying his own Epipen since he little and now it’s just like having his keys, wallet or phone (and has another one in his backpack, his car and at his girlfriend’s apt.). The only times he’s ever been questioned about it were when he was studying abroad and going to bars that patted him down (I didn’t want to know why he went to bars that patted him down…). He learned to say “It’s medicine for my peanut allergy” in several different languages.

Start teaching your kid now. He’s going to have to learn to take charge of it.