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

DRY POWDER INHALERS and MILK Allergies PART 2

Last night I posted a post that spoke to the concern of Dry Powered Inhalers like Advair. The reaction from the parent community was as I expected, thanking me for bringing this up and many sharing their own personal stories of issues. Yet  some doubted what I said in my post. So I am going to post here some of my sources and reports to back up my concern.

This post is out of Canada, but I use it a lot because for the most part the drugs are the same. Note this allergist explores the issue in lactose in pills vs dry powered inhalers. His recommendation is not to use.

http://www.aaia.ca/en/milk_proteins_and_allergy_medications.htm

My next piece of evidence is two medical journal reports

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4187530/ This was in 2014

This one was in 2004 http://www.jacionline.org/article/S0091-6749(03)02677-0/abstract

Allergic living was asked this question as well http://allergicliving.com/2013/11/07/do-asthma-inhalers-contain-milk-protein/

If this isn’t enough to question it, the drug company’s themselves have put a SERVERE cow milk allergy warning out.  From Advair’s own page

  • Do not use ADVAIR DISKUS if you have a severe allergy to milk proteins. Do not use ADVAIR DISKUS or ADVAIR HFA if you are allergic to any of the ingredients in the products. Ask your healthcare provider if you are not sure.

http://www.advair.com/

From  ASMANEX,

http://www.asmanex.com/asmanex/index.xhtml Do not take ASMANEX TWISTHALER if you have an allergy to milk proteins.

These are just two of the popular dry powered inhalers, others like Spiriva have the same warning.

While reactions maybe rare,enough have been reported to obviously make a cow milk allergy a contraindication. I am not saying people shouldn’t take them, but I do think asthmatics with a severe cow milk allergy should know that this is a real issue and that is well documented. At same time Doctors should know the risk is real. These drugs are available in versions which are safe . I think this issue needs more discussion and awareness. Patients and providers need to discuss the risk and benefits, but don’t ignore the issue .

THE REAL ISSUE IN THE FOOD ALLERGY COMMUNITY

This past week has been an active news week in the food allergy community, from a food allergy death, a new report that outlines the need for more info on all areas, to a mind-boggling opinion piece on the need for Epi pen and food allergies.

As the events played out, I used my group Positive Parenting with food allergies to open discussion on these issues.  What I found was many didn’t know asthma was a risk factor and played the most part in food allergy deaths. I found people were unsure of action plans. I took to Facebook live to do an asthma basic workshop, one that I do often as a Certified asthma educator. I also did a basic introduction to a food allergy action plan.  Yet many still have questions.

What we need as a community is not emphasis on the particular allergen as many like to do. If we focus only on nuts what good does that do for people who suffer from anaphylaxis from other foods, or insect bites or medications? Great so we know nuts cause anaphylaxis. So, does the other top 6 and more. Who then is going to think oh they ate some eggs, or milk or soy or even and apply and now they are wheezing and vomiting and think anaphylaxis?  Only nuts are deadly.

Putting attention on the food as the cause is not the solution. We need to raise the awareness of anaphylaxis itself and when to use epi for ALL!   Action plans for the most part are individualized as they should be, but we do need to make the message clear when to EPI for all.    I personally have been in the ER and even ER doctors don’t want to Epi.  We need to have a better awareness campaign for anaphylaxis in general like the 2-symptom rule. Many still wait till breathing is involved.  This is not only about educating parents but educating DRs as well.

In addition, many don’t know about asthma and its role in Fatal anaphylaxis. Asthma alone is deadly! add food allergies into the mix and you have a dangerous combination.  That is why on food allergy action plans It clearly says if asthma (higher risk if severe reaction) Yet many don’t know that. Another issue is many times people think it’s asthma and it’s really anaphylaxis, and not knowing the difference, they just take asthma inhaler A few deaths have happened for that reason.  Again, Providers need to have strong conversations with their patients who have asthma and food allergies. Parents need more guidance.

I have never been shy of speaking up, saying what others don’t I see a different picture, the current picture is about protecting some, not all.  At the end of the day anyone with an allergy has the same need. The need that people can spot anaphylaxis and know how to respond. I will keep speaking up and advocating for all at risk.

THE REAL ISSUE THE FOOD ALLERGY WORLD

This past week has been an active news week in the food allergy community, from a food allergy death, a new report that outlines the need for more info on all areas, to a mind-boggling opinion piece on the need for Epi pen and food allergies.

As the events played out, I used my group Positive Parenting with food allergies to open discussion on these issues.  What I found was many didn’t know asthma was a risk factor and played the most part in food allergy deaths. I found people were unsure of action plans. I took to Facebook live to do an asthma basic workshop, one that I do often as a Certified asthma educator. I also did a basic introduction to a food allergy action plan.  Yet many still have questions.

What we need as a community is not emphasis on the particular allergen as many like to do. If we focus only on nuts what good does that do for people who suffer from anaphylaxis from other foods, or insect bites or medications? Great so we know nuts cause anaphylaxis. So, does the other top 6 and more. Who then is going to think oh they ate some eggs, or milk or soy or even and apply and now they are wheezing and vomiting and think anaphylaxis?  Only nuts are deadly.

Putting attention on the food as the cause is not the solution. We need to raise the awareness of anaphylaxis itself and when to use epi for ALL!   Action plans for the most part are individualized as they should be, but we do need to make the message clear when to EPI for all.    I personally have been in the ER and even ER doctors don’t want to Epi.  We need to have a better awareness campaign for anaphylaxis in general like the 2-symptom rule. Many still wait till breathing is involved.  This is not only about educating parents but educating DRs as well.

In addition, many don’t know about asthma and its role in Fatal anaphylaxis. Asthma alone is deadly! add food allergies into the mix and you have a dangerous combination.  That is why on food allergy action plans It clearly says if asthma (higher risk if severe reaction) Yet many don’t know that. Another issue is many times people think it’s asthma and it’s really anaphylaxis, and not knowing the difference, they just take asthma inhaler A few deaths have happened for that reason.  Again, Providers need to have strong conversations with their patients who have asthma and food allergies. Parents need more guidance.

I have never been shy of speaking up, saying what others don’t I see a different picture, the current picture is about protecting some, not all.  At the end of the day anyone with an allergy has the same need. The need that people can spot anaphylaxis and know how to respond. I will keep speaking up and advocating for all at risk.

Dairy Allergies and Asthma Inhalers

In recent weeks, I have been seeing many questions on message boards about inhalers and sudden reactions. Parents asking can steroids cause anaphylaxis, or that their provider prescribed medication to make their child better but one dose they ended up in the hospital.  Why? The answer is simple each and every time I ask does your child have a dairy allergy? And the answer has always been yes.

Many dry powder asthma inhalers ( DPI) like Advair can contain traces of milk. While a report was done, http://www.jacionline.org/article/S0091-6749(03)02677-0/abstract       https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4187530/

It appears the message has not made it to providers or ER physicians. As in the last month I have had 4 people with this issue.   This information is in the insert of the medication and online that if a patient has a milk allergy the should not take it. Do not use ADVAIR DISKUS if you have a severe allergy to milk proteins.  From Advair’s own website “Do not use ADVAIR DISKUS or ADVAIR HFA if you are allergic to any of the ingredients in the products. Ask your healthcare provider if you are not sure” Many other DPI also have milk this in not exclusive to Advair

As a certified asthma educator and as someone who is milk allergic as are my kids, I have learned I need to read every insert and do my own research on each and every medication my kids take.  I do find it disturbing that this is not common knowledge and patients are still being prescribed medications that will make them sick. Providers need to know about this contraindication as do Patients.

Parents ask questions! research the medications your children are given. Please ask a pharmacist if your provider can’t answer your question.

Providers please read up on milk allergies and asthma medications so that a patient isn’t given something that is going to make them sicker.

Again, this isn’t a big secret, many of us have known about this issue for years. I hope with this post I can help educate a few more people about this serious issue. Living with a dairy allergy is tough because not only do you need to worry about the food you eat, but also the medications you take.

As always if you have any questions please let me know, leave a comment or find me on twitter @harriet75