EpiPens---Not As Great As You Might Think

nicker

Diamond Member
#1
I've managed to survive 50 years on this earth with a severe peanut allergy but I didn't carry an EpiPen until about 8 years ago. I survived elementary, junior high, high school, college with only one emergency room visit. The only thing that stood between peanuts and me and death was a good healthy fear of what could get in my mouth. Then, when I was 42 an un-disclosed peanut sauce on fish sent me to an ER and that's when I got my first EpiPen (an auto-injector of epinephrine used to stop a severe allergic attack).

An Epi Pen is NOT a substitute for being vigilant. It must be the absolute last resort, not an innocent little fall-back. Just because something was safe last time you ate it, doesn't mean it's going to be safe forever. You must read labels every time. And just because you have an Epi Pen doesn't mean you're even going to survive your allergic attack.

You may recall the story of a young girl away at camp this summer. She'd eaten camp made Rice Krispie treats a few times with no problems, but then one batch sent her into anaphylaxis. She was injected several times with EpiPens but to no avail. She died before medical help arrived. It's every parent's nightmare and the nightmare of every peanut allergic person on the planet. After being treated for anaphylaxis with and without the use of EpiPens now I have a very unique perspective.

In June I ate at a chinese restaurant that said they'd keep my food peanut free. That was the first night I used my EpiPen as we raced to the ER. Eight weeks later I sampled an eggplant dish from Whole Foods and used my EpiPen for the second time as we raced to the ER.

Years without needing one, yet within 2 months I use the EpiPen twice? Really? WTH? I thought long and hard and I've come to believe perhaps the EpiPen made me sloppy. I wasn't paying attention. I wasn't being obsessively vigilent as I've been my whole life.

On occasion I've heard parents say they want their allergic children to live normal lives. That's sweet. What parent wouldn't want that for their kid? Yet it's dangerously naive to think that. Your kid's been dealt a very special hand of cards and they need to know how to play them. You're going to be their protector until they go to school and if you're just sending them off to a supposed "peanut free" room with an EpiPen you could be training them to be complacent and dependent on others to protect them. (I know, strong statement!) This is one of those times you need to develop a healthy fear of your environment; what one might call a very strong survival instinct.

The first thing your allergic child should know how to read is a food label. Toll up your sleeves and teach 'em the very first minute you can. I was reading labels in kindergarten. Children need to know how to identify the smell of peanuts, what they look like and what kinds of foods they often hide in. That's step one; self preservation. If your kid can smell a peanut butter sandwich from across a room, great!

Every family with a peanut allergy needs to go on a "Foodie" journey and learn about the types of food that often hide peanuts. Indian food, Asian foods. Vegetarian menus. Baked goods of all kinds. And as "foodies" get more and more inventive, "fusion" cuisines will present challenges. Does your peanut allergic kid know when he visits someone's home to never ever EVER eat jelly or jam at someone's house? (Because people almost always put the peanut butter on the bread first, then dip the same knife into the grape jelly forever contaminating it.) I never ate baked goods away from my mom's kitchen. Ever. Avoided nuts of all kinds. Anything that even resembled peanut butter I refused to eat. (Caramel. Apple butter. Sesame seeds smell like peanuts and I avoided those too.) I cultivated one hell of a healthy survival instinct.

Yes, you can eat out if you are careful about where you go. Thankfully government labelling laws has made it easier to find threatening foods, but it's not foolproof. Do you trust China to label stuff correctly? And given what we pay people in the food industry it's surprising we don't have more accidents. That's why I'll keep carrying the EpiPen...for times when my best efforts are defeated.

What frightens me most...and what drives me to write this rant...is that I've learned the EpiPen does not arrest the allergic reaction nearly as well as what is administered in the hospital. It will buy you a little time, but believe me, not a whole lot. I was walking into the ER within 15 minutes of exposure and was wheezing and swelling. It was rather frightening to wait for them to start the IV and get the drugs ordered up from the pharmacy...the extra steroids for the swelling, the Benedryl, something to battle the intense itching, and the gastric distress. Anyone who's been through this routine knows how terrible you feel for hours and hours afterwards. The large and deep purple bruise I had on my thigh from the EpiPen was a three week reminder of how STUPID and careless I was. The Epi Pen was no substitute for engaging my brain.

An EpiPen should be the last resort and I hope I never ever have to use it again. And I sincerely hope your sons and daughters live long and happy EpiPen free lives. :)
 

angelaN

Platinum Member
#2
Having worked in the restaruant industry I know how cavalier a 19 year old server, who is paid 2.13 an hour, is about your special dietary needs.

Don't rely on the 19 year old kid to keep you alive.
 

rawhide

Diamond Member
#3
Nicker, thanks for your post.

My son was diagnosed at age 2 and we have been dealing with this allergy since then. People are more aware now, but 10 or even 15 years ago, the ignorance was astounding.

We have never expected society to adapt to us. Pretty much as soon as he could understand at around 2.5 years, peanuts were bad and dangerous. We avoid all nuts and sunflower and sesame seeds. Even when fellow classmates celebrated their Birthdays at school, if I did not know ahead of time and send something truly peanut free in, he would be the only kid not eating the cake or cupcake. We just could not take a chance.

I'll spare all of the infuriating stories that happened at school and even with extended family members who thought "what's the big deal?".

The Epi-Pen is not a life saving device, it is suppose to help clear the airway until you can get to a hospital or to medics.

My son can see and smell peanuts and nuts from far away. It is good he has developed that skill. We try to be vary careful with eating out and when in doubt, we pass.

We have not had to use the Epi-Pen yet, and I hope he never has to.
 
#4
I have two daughters with peanut allergies, and you are right- you have to be extremely careful. My oldest has had to use the epipen 4 times: twice while on a desensitization program (we dropped out during the maintenance phase- she was able to eat 24 peanuts for the final food challenge, but still reacted after eating a maintenance dose of 8 peanuts), once when she ate a Kit Kat (we have safe Kit Kats shipped from Canada from peanutfreeplanet.com, but she grabbed the wrong one and didn't read the label- very unusual for her), and once just a couple of weeks ago at school (no idea what happened on this one- she was eating a lunch brought from home- maybe cross contamination on the table?). Thankfully, my youngest has not had to use an epipen.

With the last one, the school nurse administered the epipen and called 911. I met them at the school and transported her to the ER myself (she seemed fine by then and had been checked by the paramedics). But, when she hit that 15 minute mark, the epipen wore off and I had to give a second epipen while driving. Scary stuff! We were only a few blocks from a freestanding ER, so we went there.

We do have a pencil box with a few individual packs of Oreos at school for my youngest. She never eats anything brought in (baked goods are RARELY safe), so she can have one of her safe snacks instead. For birthday parties, they just go without. For eating out, we try to stick with chain restaurants because they list their allergen menu online. We also ask to speak to the manager, but we've never felt very confident even with the manager. That's one reason we love Disney World- they handle them very well, and we speak with the actual chef at every meal.
 
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#5
Wanted to add- we just got the new Auvi-Q auto injectors. Love them! They are smaller, so easier to carry around. And, it talks the person through using them (even counts down so you know how long to leave it in your thigh). Great for caretakers that aren't terribly familiar with epipens- it's a bit less stressful to them if they know it's going to remind them what to do. We ALWAYS tell the adult in charge about the allergy and demonstrate the epipen, but it's comforting to know they are less likely to forget how to use it (even though it's easy) in a panic. There is a coupon online- we got them with no money out of pocket.
 

roberts933

Bronze Member
#6
I'm a few months away from turning 40, and I've been allergic to peanuts all my life. It wasn't nearly as understood or respected when I was growing up, but I still find ignorance among those who don't have allergies or a loved one with them. Unfortunately, in my opinion, until you have watched someone have an allergic reaction (my husband being one) you are truly unable to appreciate the severity of it.

I grew up knowing that a peanut could kill me and I didn't question it. The problem was that everyone around me didn't see the big deal. My best friend and her family loved peanut butter and often put it into recipes that would normally be safe for me. A few times, they forgot. Once they saw me have a horrible scary reaction to a rice krispies treat with peanut butter in it, they took it very seriously. I was the kid (before epi pens) who carried a box of benadryl with me everywhere.

All that to say, Nicker, I feel your pain. It appears that the older I get, the more severe my reaction. About 4 years ago, I accidentally ate a cookie in a cookie jar (at my inlaws) that had peanut butter chips in it. They looked like chocolate chips. I was up at 3 am feeding my infant daughter and decided to eat one (knowing in the back of my mind how my inlaws love peanut butter). I knew better. I really feel like I could have died from that one cookie. After taking 5 benadryl ( what usually helps avoid the hospital) my MIL had to take me to the ER for an injection. Talk about your body being in complete havoc. I was so sleepy from the benadryl and then the epenephrine shocked me, and then I still passed out for 6 hours.

If your children have allergies, don't listen to the ignorant naysayers. Do what is best for your children. Make sure they know they have allergies and that they are serious as early as they can understand! Period.
 
#7
Nicker, this needs a wider audience....like a blog post. Seriously. If you don't blog, find someone who does and be their guest blogger.

I don't have anyone in my family with a life-threatening food allergy, but I if did, this post would be a major reality check. It could save lives. Plus it's well-written. Good stuff, and too good to get lost on a forum!
 

angelaN

Platinum Member
#8
I used to do lunch duty at the elementary school about six years ago and cleaned the tables after kids left. I was crazy about disinfecting every surface even the underside of the table. I had seen kids eat a peanut butter sandwich and wipe their mouth with their hands and then put thier hands all over the table top and seat.

I even asked why they didn't have a peanut free table and no one could answer.

I don't have a child with that kind of allergy but both my brothers and father are deathly allergic to shell fish and my father to bee stings. My brother had several life threatening allergic reactions and never figured out to what.
 
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Marion

Bronze Member
#9
I have a shrimp and stinging insect allergy. My biggest health concern is avoiding both. The reactions set in within 4 - 5 minutes and escalate rapidly. If exposed I inject immediately, call 911 and prepare to use the second one. I was told to lie still after exposure to limit the circulation of histamine through the bloodstream (speeding up the reaction). The epipen isn't a cure all, it does buy some time til paramedics arrive and pump in even more epinephrine. How much Epi you need depends on your reaction and your body mass. Yes avoidance is key but sometimes unintentional exposure happens. I really feel for everyone who deals with this, especially the parents of children with food anaphylaxis.
 

nicker

Diamond Member
#10
I should look into the new auto injectors. Using the pen didn't hurt the two times I had to slam it into my thigh, but the bruises! OY!

I'm glad to hear so many families are working to be diligent for their kids. Just wanted to spread some extra awareness. It's not bad for non-allergic persons to read either. Thanks all.