“Never Let Your Guard Down”

by Kelley Lindberg


If I could have one wish granted for this blog, it would be that I’d never have to write about another child dying because of a food allergy reaction.

But that wish hasn’t come true yet.

Last week, 11-year-old Tanner Henstra in St. George, Utah, died after accidentally popping a peanut-butter-filled pretzel into his mouth at a friend’s house. Although he immediately realized his mistake and spit it out, it was too late.

The family had been vigilant about his food allergy his whole life. The boy was educated about his allergy and ordinarily very careful. The mother is a nurse. The boy usually carried epinephrine, but for some reason didn’t have it that day.

It was just one of those momentary accidents that could happen to any of us. Within minutes, his throat and tongue had swelled, cutting off his airway, and by the time medical assistance arrived, it was too late.

The Salt Lake Tribune has an article with more information about the tragedy (“Utah Boy’s Death Highlights Food Allergy Vigilance,” Salt Lake Tribune, April 26, 2013). The article includes a quote from Michelle Fogg, president of the Utah Food Allergy Network (UFAN), who explains why teenagers make up the majority of all food-allergy fatalities: “Teenagers are bigger risk-takers and less vigilant. They get busy, it’s not cool to carry [epinephrine] around. They just get caught without it.”

A single moment of inattention, combined with a forgotten EpiPen, spelled disaster for this family. If you have a child who is getting to the age where he or she is becoming shy about carrying their epinephrine, or rebellious about avoiding the food their friends are eating, or just flat-out sick of being deprived of “normal” treats, you may want to have them read the article about Tanner Henstra, so they can see just how quickly a single accident can turn deadly. If you’re not sure whether you should talk to your younger child about this, Michelle Fogg suggests this helpful website for “Tips for Talking With and Helping Children and Youth Cope After a Disaster or Traumatic Event” on the government’s Substance Abuse and Mental Health Services Administration website.

The boy’s heartbroken mother has one message for food allergic kids and their families: “Never let your guard down.”

A Tanner Henstra Memorial Fund has been set up to help the family with funeral and medical expenses, if you'd like to offer your support. UFAN has generously donated to the fund, so more thanks go to Michelle and all the folks at UFAN for being a strong supporter of our food allergy community. And we all send our heartfelt thoughts to the Henstra family.

The Ring Theory of Kvetching

by Kelley Lindberg


In a wonderful little opinion piece in the Los Angeles Times earlier this month, Susan Silk and Barry Goldman outline a really simple way to know when and to whom you can whine about a medical problem. (“How Not to Say the Wrong Thing,” LATimes.com, April 7, 2013.)

The key is to think of concentric circles – with the actual sick person (or the “aggrieved or afflicted” person) in the center, and everyone else falling into outer layers, starting with the closest person (spouse, for example) in the ring closest to the center, and moving out until the very outer rim, which is occupied by “lookie lous.”

Then, wherever you are in the rings, you can only offer “comfort in” to people closer to the center than you, and “dump out” to people in circles further out than you.

In other words, the closer you are to the center, the more right you have to complain, but only to people farther out than you. The farther out you go, the less right you have to complain, and the more people there are closer to the problem than you who could use your comfort, not your comparisons, complaints, or advice.

Nifty! Their article has a graphic and does a better job of explaining it than I do. It’s a great reminder to keep things in perspective, first and foremost. And it helps us remember that unless we’re in the bulls-eye at the center of the circle, it’s simply not all about us.

And if we ARE in the bulls-eye, it’s okay to fall apart, at least for a little while. We’ve got lots of people in the circles surrounding us who can support us, comfort us, and help us through it.

 

SCUBA and Asthma Don’t Mix

by Kelley Lindberg


My son has mild asthma, along with his food allergies to peanuts, tree nuts, and lupine flour. He takes daily medications to keep it controlled, and it’s so well controlled I have a tendency to forget about it. I do make sure he has his inhaler with him when he goes to soccer practice, and only rarely will he feel the need to use it. But for the most part, his asthma is pretty much off my worry-radar most of the time.

So that’s my excuse for winning the bad-mama award a few weeks ago.

My son has wanted to take SCUBA lessons for years. This year, I finally decided to let him. He’s an amazing snorkeler and swimmer, so SCUBA seemed like the logical progression. So I signed him up with a local SCUBA shop, and he started working on the online (reading/quiz) part of the course over the weekend, to prepare for the in-the-pool portion of the course that was coming up in a week.

As he excitedly started burning through the book-larnin’ part of the class, I started filling out the permission release and medical voucher. That’s when I saw it: The innocent little checkbox next to “asthma.”

If I checked any of the checkboxes on the form, I needed to get a medical release signed by his doctor. So I contacted my son’s allergist/asthma specialist and asked for his opinion.

He knows my son well and has been treating him for years. And his opinion was “No."

“No? Really?” I asked.

“No,” he repeated. He was reluctant to give me the bad news, but he was concerned about my son, so I really appreciated his honesty. One of the things he said was that he’s a big fan of NOT letting asthma restrict you from activities you love – one of his goals for treating patients is to help them live as normal of a life as possible. But then he went on to say that even though he doesn’t want to restrict people from activities, SCUBA is probably one of the few activities he really believes in restricting. The pressure in the lungs can cause serious damage if anything goes wrong.

He said if my son’s pulmonary function tests were better (and they’re okay, but not perfect), and if he weren’t still growing, and if he weren’t having to use daily meds to keep him where he is, we could consider it. But for now, the risk of damaging his lungs permanently was too scary for him to even consider, and that if it were his son, he wouldn’t let him do it. He then gave me the number of a pulmonary specialist to call for a second opinion.

I called, and the nurse I talked to said that doctor strongly recommends against SCUBA for any asthma patient.

That clinched it. No way will I knowingly subject my son to something harmful. That would be like saying, “I don’t know if there are nuts in this cookie, but it might be safe, so go ahead and eat it.” If there’s a chance something can go very wrong, we skip it. Life is full enough of dangers and accidents you can’t see coming. Why invite one in?

I know many people with asthma, and probably worse asthma than my son’s, participate successfully in SCUBA. But our family decided it just wasn’t worth pushing our luck. He’s too precious to us.

So my son was disappointed, but he understood. And I felt terrible for building up his hopes and then dashing them. But we're still looking forward to doing a lot of snorkeling together the next time we go on vacation somewhere wet and salty.

Epinephrine Auto-Injector Carriers

by Kelley Lindberg


When our food-allergic children are young, carrying their epinephrine auto-injectors is easy. We throw them in our diaper bag or purse, and off we go. Our kids are always with us, so it’s easy to keep their medications within reach – our reach.

As they get older, however, there comes a time when we have to transition to having them carry their own EpiPens or Auvi-Q injectors. Whether they’re headed off to soccer games or dance practice, or going to school, birthday parties, or the mall, they need to have their epinephrine with them at all times. For girls, carrying their pens is still pretty simple: girls can carry purses, of which there are about a million cute varieties.

For boys, however, it becomes more problematic. Boys don’t carry purses, or anything remotely resembling a purse. So the question of how to get boys to carry (and keep up with) their meds is a perennial question. Over the years, my own son has changed how he carries his, depending on his age and his current definition of “cool.” He is now 14, which means I expect the next few years to become more challenging as his concept of cool begins to change at light-speed.

Anyway, here are some ideas for carrying EpiPens and Auvi-Q injectors that I’ve found so far. If you have ideas, please share!

Clear plastic case: I keep my son’s EpiPens, Benadryl, and written information about what to do in an emergency in a clear zippered case. That way anyone looking for it can see instantly what’s inside and what to do with it. The cases I use are small makeup bags from Walmart, but a pencil case from office supply stores would work the same way. The case slips easily into things like a backpack, soccer gear bag, or my purse, and it’s just big enough for 2 EpiPens, a small bottle of Benadryl, and his inhaler.

Allergy Apparel EpiBelt: The Allergy Apparel website has a good-looking belt option for carrying EpiPens or Auvi-Q injectors. I think this would be ideal for young kids.

Allergy Apparel Pouches: The Allergy Apparel website also offers several carrying cases for your EpiPens or Auvi-Q injectors, but I especially like the autoinjector pouches that have a clip so you can clip it to a backpack, cooler, belt loop, or lunch box. It comes in a variety of designs, from camo to superheroes. The pouches for the Auvi-Q injector include these with sport designs on them: Sport It Ject Pouch Combo

AllerMates EpiPen Pouch: This pouch from AllerMates has Velcro straps that can loop around a belt or backpack, and it has a strap to hold an inhaler if needed.

RescueShot Epi Case: This case from RescueShot is rugged, made from padded alistic nylon, and can clip to a belt or use your own carabineer clip to secure it to a backpack.

WaistPal and LegBuddy: These unique EpiPen carriers from OmaxCare may be just the solution for your fashion-conscious teen. The WaistPal is a narrow neoprene belt that fits around your waist with one pen in back and one in front, and it is easily hidden under a shirt. The LegBuddy fits around your calf like a holster, hidden under your pant leg.

KozyEpi has a variety of neoprene carriers in different sizes, designs, and shapes for EpiPens and Auvi-Qs.

Fanny pack: My son carried his meds case in a regular fanny pack when he was much smaller, but now that he’s a teenager, he wouldn’t be caught with one. But it was a good option for a while.

String bag: These lightweight bags are handy, and right now they’re the carrying option of choice for my son. Easy to sling over a shoulder, not bulky, and you can toss in a water bottle, snack, or other essentials.

Epi-Essentials Handbags: I’ve focused on boys, since they’re harder to please, but I haven’t forgotten teen girls and women! These Epi-Essentials clutches keep all your medications handy, while doubling as a stylish purse. They’re a little on the expensive side, but might be just what you’re looking for.

Those are just some ideas I’ve found. If you have a favorite option, be sure to share it with us!

UPDATE 4/8/13: Readers have added some great tips:

Alert Wear lets you design your own EpiPen case: Find Alert Wear on Etsy or Alert Wear on Facebook.

Neoprene camera or glasses cases work well too for about 1/3 the cost! You can find many different designs, also.

One reader recommended MediPouch, but their website doesn't appear to be working for me, so let me know if you can find them. www.medipouch.com