Even Medical Professionals Aren’t Clear On EPI Use.

I have been seeing a lot of posts about Epi pen, use and when not to use. A lot of confusion and back and forth. I think this confusion is adding to the problem which I am not sure how to solve. But I can tell you though this post about my own battles with the use of Epi. Both of my boys are allergic to multiple items. When my youngest was a baby, he was confirmed allergic to dairy, egg, wheat, soy, peanut, tree nut, avocado, chicken, beef, peas, all legumes and more. My oldest son had dairy and egg. I wish I could say we avoided ER trips. This post is about how even anaphylaxis is misunderstood even in an emergency.

 

My youngest had his first reaction that I think was anaphylaxis when he was 9 months old. We were out of state and at a friend’s house.  We had not known he was allergic to beef and soy and gave him a meat product the week before which he was fine with, but this time he wasn’t. He vomited and was wheezing, we took him to the ER and the Doctors said he was having an asthma attack but nothing more so Benadryl and asthma meds were given, even though I debated them. That episode was mild compared to the next one.

 

We were on vacation, where I planned EVERY meal with the staff, even brought some of the food. Somehow my son got either a dirty glass or drank milk. It started out with hives all over. Only hives. So I gave him Benadryl, but it clearly got worse, I knew he had milk, we were driven to the ER. He was now getting the red lobster rash and coughing just as we entered the ER. I was in the ER so they would see also and they would epi. Right? Wrong….. They kept giving him more Benadryl, Pepcid IV. I kept saying EPI him, the ER staff at a VERY well-known hospital kept tell me that EPI is the drug of last course. As his oxygen level began to drop to 88, only then did they agree to epi him. Oh and during this time my other son was brought in to the ER also reacting to the dairy but Benadryl worked on him. My younger son required admission, but you could see the Epi work so fast. His color became normal, you could see the redness disappear. Then next anaphylactic reaction happened when he was at camp. He had a sorbate pop that had milk in it. He knew he had something with dairy as he said it didn’t feel right. So they called me, they gave him Benadryl and I told them to call 911. I got to camp and he seemed fine, we didn’t even have the label so it took me time to even find out what he ate. I decided given his history even though he seemed fine I wanted him to be taken to the ER. I had my epi in my hand, we got into the ambulance, 5 min from the hospital, he suddenly sneezed and then complained he breathing was bothering him I went to epi him the EMT would not let me, said he didn’t need it and instead started an asthma treatment which I screamed was a big mistake and that he need epi. He had no hives this time but the red rash was coming back and breathing was becoming affected. Thankfully the ER Immediate Epied him. I spoke to the EMTs after all this and they told me “epi is dangerous, Epi is last course, you only give epi if throat is closing up..”

 

We have had, unfortunately, other visits to the ER, for reactions with 2 symptoms and they didn’t Epi him. We had that happen both at home and in Florida. I made a few changes to my action plan after the camp one, I have on his action plan that even with no symptoms if we know he had dairy we epi him.

It’s not only parents who don’t know what to do. It’s ER doctors and even EMTs. This report was done showing that even doctors are misusing it http://www.medscape.com/viewarticle/838198 . I have personally had to fight doctors and nurses on what symptoms to EPI for. We need to remove a few myths.
Anaphylaxis is not this immediate throat swelling, can’t talk reaction, it can start out mild and slowly progress. Too many think as long as the person is talking or isn’t swollen like a balloon that it’s not anaphylaxis.
We also need to remove the idea that epi is dangerous. Doctors in the ER and those who are not allergists see Epi as a last option treatment.
We not only need to be educated parents on when and how to use EPI, but honestly, I think the biggest challenge is for education of those who are on the frontline during an anaphylactic emergency. These are the people we rely on to treat our kids. We need stronger education for the EMTs and the ER doctors. That said, they don’t do much better with asthma treatment. Many times, Asthmatics come in with attacks, they get treatments such and a nebulizer but, no steroids, no controller meds, so they end up back in the ER again a few hours or days later again,

How do we fix this? My suggestions.
I Suggest AAAAI or one of the other medical organizations do training for ER doctors. Doctors need CME classes (continuing medical education credits) require all ER doctors to do a workshop on anaphylaxis. I would also say it should become part of Pediatric rotation.
We also need to start a campaign to educate our emergency responders on when to use epi and how it is NOT dangerous as perceived.
Our jobs as parents is to make sure our kids ALWAYS have Epi with them! And keep the action plan in the case. I tell people often that if you think Epi is needed, just give and sort it out later. I work hard any chance I get to let others know what anaphylaxis looks like and not to be afraid of Epi. Let’s get clear info to the most important people who need it, the people who will be the Emergency responders

Injectable Epinephrine: An Epidemic of Misuse

Has the misuse of injectable epinephrine reached epidemic proportions? Dr Gary Stadtmauer explains why this problem has grown increasingly worrisome.

medscape.com

What The Teal Pumpkin Really Means.

It’s October and that means its’s Halloween all month long.  We are hit with Halloween items it feels like from mid August on . A few years ago the “Teal Pumpkin Campaign” started.  At first it was small and only those in the food allergy world knew about it. Last year the media picked up on it, This year stores are even selling items that are specifically for it.

This campaign’s aim was to raise  awareness for food allergies and to have safe  non- food alternatives available for children with food allergies. Sadly, though this message has not made it to many of our own food allergy advocates. I am constantly seeing posts about having peanut and tree nut free candies available, or seeing lists that people are saying are good for allergies yet, they contain other of the top 8 allergens. Twizzlers, have wheat. Laffy Taffy has an egg warning on some flavors, junior mints have milk,  I could keep going but you get my point. We need to stop thinking  that yet again the words food allergies is synonymous with nut allergies.

The whole point of the Teal Pumpkin Campaign was to encourage non- food items to be given out. So that no child would be excluded  regardless of allergens, or dietary issues. This is a great idea! it includes everyone. So someone please tell me why am I not seeing this message coming across in many food allergy groups  or even media stories about the campaign. Just today, I came across a story in a parent paper that was talking about “Tricks for a food allergy a safe  Halloween”  The author only talked about peanut allergies and gave alternatives for peanut allergic kids, Then at the bottom gave tips for other kids at the end. Now some may say, maybe that’s what the author knows, maybe she didn’t know any better. Sorry, I am not going to take that for an answer. We need to STOP putting out advice like that and really stick to the true message of the Teal Pumpkin Campaign, No food period!

Please educate yourself, your friends and you neighborhoods having peanut or tree nut candy is not enough and its not being food allergy friendly. Go to Party City  or your local dollar store and  get pencils, favors.  DON’T GET PLAYDOUGH!  and have some little knickknacks around . I have 2 buckets one with regular candy and one that is food free.  Let’s help make sure ALL kids are included and we continuously raise awareness for all food allergies.

 

What Is The Big Deal?

In the past 3 weeks, the allergy world has gone crazy over the fact Keebler is going to add peanut flour to its cheese cracker sandwiches. People have been contacting the press, saying that it will kill children, and as of late saying the company will cause anaphylaxis and death. All this towards one company for adding a food ingredient. These crackers were never allergy friendly to begin with; they have milk and wheat in them. These crackers posed a risk to dairy allergic children in their current formulation. The lovely cheese can stick to little hands and spread just as those fear the peanut can. But we dairy moms have always found a way to survive around them.

I personally am having a hard time understanding the outcry. When you are a dairy allergy parent or like me a multiple food allergy parent, you are used to having limited options. Almost all snacks have dairy in it. Most kids love goldfish, or Pirate’s Booty–two very common foods that present risk to children with dairy and other allergens. So where is the outcry for them? Where was the outcry every time a company adds milk, egg, soy etc. to a product? McDonald’s is not a place my family goes to, but where was the outcry when they made every single item unsafe for a dairy allergy person?

It is not Kellogg’s that needs to be held responsible for the health and safety of others, it’s the parents of the allergic child. It’s vital to read labels each and every time you give something to a child. Ingredients change all the time!  In addition, I noticed in many food allergy groups the concern is that someone will hand a child the cracker and assume it’s safe. Why do we allow allergic kids to take food that we ourselves don’t supply? I supply and have supplied all snacks and lunch for my children. Truly, it’s the only way to make sure what they are eating is safe. Also, my school district has a no sharing food rule and I have to agree. We must teach our children at a young age never to share food.
It is so sad to see all this effort spent on talking about one company and only one of the top 8 allergens.  Our communal efforts should be spent on education and raising awareness  for ALL food allergies. Instead all we have now is drama and divisiveness.