How many people actually die each year and why?

12 replies [Last post]
By booandbrimom on Fri, 09-01-00, 17:57

I've read a lot of posts on this board recently and it seems like there are vast differences in comfort levels with regard to risk and precautions taken.

I'm trying to find some statistics or case studies to determine what the risk of death really is. Can anyone help?

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By Tina H. on Fri, 09-01-00, 19:12

I, too, would like accurate statistics. I've read so many varying stats that I'm not sure what is true. But, from all of my own investigating, here's the numbers I've been told. Please, don't consider these as the absolute truth because they have not been validated as far as I'm concerned...

3 million people in USA with peanut and/or tree nut allergies.

About 100,000 in USA with anaphylactic peanut allergies (7 percent of total peanut allergies)

125 people die each year in U.S. from all food allergies (mostly peanut)

50% of all people with PA have had accidental exposure to peanut in last 1-5 years.

1 out of 20 (5%) of anaphylactic reactions result in death.

Immediate administration of epinephrine (within first few minutes) almost always prevents death.

Less than 30% of people with peanut allergy actually carries Epipen.

Years ago, I read that only four people out of ten million die each year from Anaphylaxis. Those numbers have risen.

If anyone has different information, contrasting statistics, please reply.

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By booandbrimom on Sat, 09-02-00, 20:33

Just one comment...if there are 100,000 anaphylactically allergic individuals and 50% experience an accidental exposure at least once every 5 years, that 50,000 exposures. 500 deaths for 50,000 exposures would be a 1 in 100 rate of death, yes?

What I'd really like to know if there's a subset of "super-anaphylactically allergic" individuals. My son has wheezing, vomiting, etc., which is technically an anaphylactic reaction, but the ER and his doctors never seem overly concerned. They say he's not in the "high risk" category. So what is that category? Are the people who are most likely to die from this the ones who have had a severe reaction in the past? What constitutes a severe reaction? I'm not saying we'd take fewer precautions, but I'd sure like to stand down from the constant death vigil.

I know this is a hard topic, but isn't it what we're all thinking about anyway?

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By heidi on Sun, 09-03-00, 03:55

Yes, this is a hard topic, but I'm glad you brought it up. I would like statistics, too. I've read that over 300 people die each year in the US from food allergies, mostly peanuts. I know that each reaction is different and the next could be deadly, but certainly there must be some factors that make one more or less at risk.....?

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By ihatepeanuts on Tue, 09-05-00, 03:08

Wow!! Less than 30% of people with peanut
allergy actually carry an epipen?!? This
is shocking to me! What are they thinking?
Wouldn't the death rate decrease if everyone
with a peanut allergy would carry epis and
wouldn't you think that those that do die
are among the ones who have no epi with them?
We all know that peanut allergies are
potentially life threatening. I just cannot
understand that people with this allergy do
not take it seriously. And unfortunately
possibly many of the ones without proper
medication are children whose parents are
not taking this seriously. Poor kids, they
don't even have a choice. What a shame!!
Tracy

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By ihatepeanuts on Tue, 09-05-00, 03:14

O.K. I just went back and read this again.
I was under the impression that peanut
allergies were usually anapylactic. We just
assume that our son is anaphylactic but really we don't know that for sure. But,
the one statistic said that only 7% of
people with peanut allergies are anaphylactic. This is very low. What about
the other 93%, how do they react? This gives
me hope. Any further info on this?

Tracy

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By Cayley's Mom on Tue, 09-05-00, 18:44

My husband is allergic to hazelnuts (a.k.a. filberts), and his only reaction is a mild tingling and itching in his mouth and throat. I would assume that's what people with mild peanut allergies face, in varying degrees. He's not going to eat them anymore, even though these are his only symptoms, because we've read so much about how nut allergies can suddenly become severe.

One of my friends has peanut anaphylaxis, and she has never filled her prescription for her Epipen. She has been severely allergic to peanuts and treenuts her entire life, ingestion only. I remember when "the gang" had a dinner party, and she smiled and suffered through the dessert course, which was Peanut Butter Pie. Maybe if she was airborne allergic she would be more concerned, but I keep telling her she should get her Epi, and she says "I know, I know..." and then STILL doesn't get the prescription filled. I think she's risking her life, because she has reacted to trace amounts of PB, and she has asthma, so her breathing is very affected.

I think the above story answers a lot of questions about why people die from PA - they know it's serious and yet they don't think it can happen to them.

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By booandbrimom on Fri, 09-08-00, 13:32

Tracy, I'm fresh from a visit with our nurse practitioner (who specializes in food allergies and has two FA children). She said that all PA people are definitely not anaphylactically allergic. The difficulty with this is that anaphylaxis means different things to different people. Most physicians think about it as complete anaphylaxis. I don't know if the 7% refers to people like my son, or only people with "severe" anaphylaxis. For instance, my son gets itching, flushing, wheezing and sometimes vomiting, and they consider his reaction moderate. This doesn't mean that we don't all take it very seriously - we're very aware that there's no knowing how any one reaction will progress - but since most reactions stay about the same level most of the time, I feel better knowing that it's not highly likely that he's going to suddenly drop dead.

We get into it all the time, because we give an oral antihistamine to treat his reactions. Both our pediatrician and his pediatric allergist think this is the right course of action (and our allergist is affiliated with the major children's teaching and medical center in Chicago). However, people on other boards have told me I'm putting my child's life in danger by listening to the doctor, and that I should be giving an Epi pen every time there's a reaction. Since my son is allergic to milk, soy AND peanut, that would mean once a month (with the best of caution and label reading, milk and soy are simply hidden in too many foods to get every time). We've had to think long and hard about the balance between normalcy and safety, and the input of parents who obviously want zero risk for their child vs. the input of physicians who assess the risk for the entire population.
While Epis do save lives, doctors often prescribe Epis to patients with food allergies even when they think the risk of an anaphylactic collapse is very low, as a protective measure for them and a comfort measure for the parents. However, most parents I know think in the back of their minds that getting an Epi from their doctor legitimizes the life-threatening nature of the allergy, and their fear level goes up dramatically as a result.

There is no right answer to the "risk spectrum" question. The medical literature describes the risk of fatal anaphylaxis as 1 in 250,000. Known food allergies certainly increase this, and the best I've been able to get to is 1 in 1000. At some point you have to assess the odds and go on living. After all, 1 in 1000 odds is about the same as dying in a car crash. We've all heard about it happening, but few of us know someone to whom it's happened.

The more I read these boards, the more I see a need for a stress management and training program for parents of PA children (with me as its first graduate!).

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By janfran on Fri, 09-08-00, 20:58

hello booandbrimom.

Regarding the use vs. lack of use of epipens.

This is really a two-part post:

1) I am a PA and also wonder at the actual danger my life is in. Beside being vigilant regarding food and my environment, I wish I could get answers to some questions like "How severe a reaction needs to be to be considered life threatening?" Does anyone know this?

2) Just a word of caution. I have never gotten a straight answer from the hospital on this, but there are definitely dangers associated with the administration of epinephrine.

Several years ago, I had accidental exposure to pine nuts and raced to the hospital. As usual the first line of business is to stick me with EPI and benedryl. Before the needle was out of my arm, my head started banging (hard to describe) with the worst pain I have experienced in my life. It felt like someone was actually smashing me over the head with a hammer -- with every pulse (which is of course elevated at that time). I thought I was having a stroke. Apparently this is a known possible reaction to the adrenaline.

And my experience is only one example of this. Recently I read the following excerpt in another thread on this site:

"About 5 years ago I had a heart attack in the ER as a result of the standard Epinephrine treatment for my peanut reaction. I have had two more exposures/trips to the ER since and have been successfully treated with Benedryl administered IV push. It's really scarey...My heart attack following the epi was just my body's saying "enough". I've had the PA all my life and it has always been treated w/epi, until now! My body just couldn't take it any more, but I have no residual heart damage. IV Benedryl (50 mg) and a steroid, also IV, stopped my reaction yesterday. The reaction starts with swelling in my throat and mouth, down my trachea, in my ears, my eyes, then arms and hands. The last two attacks have included vomiting, which I think may be a good thing."

I think we all need to get more information about the side effects of epis and make sure they are not overused. Since that experience, I have ask the doctors to withold administering until I see how bad the reaction is getting. I have since found that the benedryl shot has been surprisingly effective, but I am already in the hospital, the best place possible if my reaction were to do something surprizing (which has happened -- delayed reactions, etc.). I have also asked for half dose.

I worry that no one has properly explored the dangers of epinephrine and one time a PA may pay the price for "doing the right thing."

It seems that if your child is being effectively treated without the use of epi, you should continue to avoid it. [You may want to get an epipen to have on hand in case one of his reactions is unexplicably more severe.]

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By ElizabethsMom on Sat, 09-09-00, 01:43

The explanation I give is that carrying an Epi-pen is like wearing a seatbelt -- hopefully you never need it, but thank heaven it is there if you do. My daughter had a significant hive reaction from injesting peanut at 14 months, and a limited-to-exposed-skin hive reaction from contact at 15 months. Our allergist justified prescribing Epis because you have no sure way of knowing if someone is severely anaphylactic until they experience a terrible reaction. He also reinforced that severe anaphylaxis is rare, but erring on the side of cautioon just makes sense.

__________________

Kristin

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By ElizabethsMom on Sat, 09-09-00, 01:57

Booandbrimom - hopefully it eases your mind, but the 1-in-100 statistic you figured can't be correct as the 1 in 20 deaths from anaphylaxis likely covers those with all anaphylaxis allergies - food, bees, anitbiotics, etc. If we even assumed that all 125 food allergy deaths per year were caused by peanut, then the likelihood of dying in any given year IF you have peanut anaphylaxis is one-tenth of one percent, or 0.1% (125 divided by 100,000). You can imagine how small the number gets when you consider 3 million PA folks.

HOWEVER, none of us has ever met anyone who is 0.1% dead - you're either 100% dead or alive. So don't let anyone use it as an excuse not to carry their epis!

__________________

Kristin

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By rebekahc on Sat, 09-09-00, 05:47

On Wednesday I took Logan to the allergist for his asthma. The Dr. and I were discussing our recent trip to the ER. She told me I definitely should have used the epi on Logan. She said that parents often find it hard to bring themselves to administer the epi especially if there is a medical facility nearby. She then said the ONLY factor found to reduce the incidence of death from anaphylaxis was prompt administration of the epi. She said that even going straight to the hospital did not affect the death rate - only using the epi ASAP.

I know I'll be using our epi next time!
Rebekah

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By YikesPeanuts on Wed, 06-13-12, 14:08

Many insurance companies do not cover Epi Pens under their policies. I tried to get one several years ago and my doctor gave me a prescription. When I asked the pharmacist about it, he said it cost around $300 FOR ONE. I didnt fill that prescription either. I have yet to be hospitalized and i'm almost 30. It may happen one day but it hasn't yet. I have been able to prevent serious reactions with over the counter allergy meds and have even once walked into a Five Guys Burgers and Fries restaurant once (that put me in a bed for the next 24hrs though!!!)

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