Fatal Reactions

I find that a child's death upsets me more than an adult's, usually because the adult had more control over his/her environment.

I haven't heard yet of an adult PA (NO OTHER allergies) who ran into trouble following the sort of precautions that seem elementary to me - no asian food, eat out only at restaurants that you have checked out thoroughly, take your own food camping and don't share.

So I usually shrug and say 'what was the idiot expecting?'

Also, I make sure I know where the nearest (1/2 hour) hospital is to wherever I am. I turn blue very shortly after my reaction starts, so I've never had any difficulty persuading medics that I had something seriously wrong with me. And if I go, I go.

Live with a moderate amount of care, be prepared. Can't do much more than that.

Liz

Do you carry epi-pens? It isn't clear from your post. Medical research recently has clearly demonstrated that early, if not immediate, use of an epi-pen does save lives. My adult brother did not carry epi-pens and is alive now only because his last, most serious reaction ever, occurred in a building next door to a pharmacy. Someone ran to get the pharmacist and he used 2 epi-pens on my brother before an ambulance finally arrived to take him to hospital. He had not carried an epi-pen because he hadn't grown up with them and believed that avoidance and quick arrival at an emergency room would be enough. 2 young men in our area died last year because neither of them carried an epi-pen and a child died perhaps because one one wasn't administered as soon as it should have been. An older man died recently on a trip abroad and again he did not have his epi-pen with him. Epi-pens don't always save lives but they are the most important first line of offense so if you don't have one, please, please get one and use it immediately if you have any symptoms at all. I know this sounds strident and lecturing but my almost losing my brother was really scary and the other deaths were all preventable and that upsets me. Take care.

I agree that the death of a child is terribly upsetting and that adults have more control over their environment and therefore responsibility for their situation.

However... "What was the idiot expecting" is useless sentiment to anyone who has experienced anaphylactic reactions to food that apparently had no nuts/legume/tree nuts, nor contact to nuts/legume/tree nuts.

One of my worst reactions was to cake prepared by a friend using slivered "almonds" (which I love and eat plentifully), packaged and labeled as "almonds" that were in fact bleached, flavoured peanuts.

Thankfully few companies would risk such a mistake these days, but never say never.

My question remains: In the case of a fatality, what was the difference in that last reaction?

Kathryn,

Thanks for your reply.

Yes I do carry an epipen (I have 4 -- one in my purse, one at work, one at home and my husband also carries one).

Unfortunately, I've had a very scary reaction to epinephrine at a hospital -- pain so excruciating I thought I actually was dying. (And just read about a member of this site experiencing a heart attack.) Therefore I avoid using the pen if possible.

Also, two of the fatalities I heard of recently both occured after the administration of epipens -- two pens in both cases.

I have always hated the idea of being alarmist and realize that complete avoidance of an allergen in the best medicine, but still...

Janfran - The differences in a fatal reaction could be a number of things. Most fatal reactions occur away from home and medical attention isn't found quickly enough. They occur when the Epipen isn't given early enough in the reaction to work. I just read a very depressing quote on an anaphylaxis website stating that sometimes, no matter what measures are taken, death occurs anyway.

You don't mention if you also have asthma. A person with out of control asthma and anaphylaxis has a much higher risk of a fatal reaction. If your asthma is under control, your risk is lower. The fear that you mention as part of your reaction is listed as a symptom of anaphylaxis - anxiety is part of the deal. I would recommend a website I found (not the same one I mentioned above) in Austrailia (!). Although it is aimed mostly at parents who have children with anaphylaxis, it may also help you to understand that you can take control of this allergy, and not let it take control of you. [url="http://www.allergyfacts.org.au/living.html"]www.allergyfacts.org.au/living.html[/url]

Best of luck and let's hope for a cure soon.

JanFran...
I have a couple of questions for you. You mentioned that over the years, your reactions have gotten more severe. My daughter has had only one reaction, which I believe was quite severe. Immediately after tasting peanut butter at one year of age, she developed hives on her face and neck, her face got red and swolen, and her eyes swelled shut. By the time the ER saw her, almost one hour later, the symptoms were almost gone without medications. From your experience, is this more similar to your early reactions or your more recent reactions? In other words, do some people have many reactions before they become as severe as my daughter's or does this sound like a milder reaction? Thanks for any input on this!

"slivered "almonds" (which I love and eat plentifully), packaged and labeled as "almonds" that were in fact bleached, flavoured peanuts."

Which is why I or my friends prepare any nut containing foods, including the nuts, right from scratch. Which usually means shelling, blanching, slivering, roasting etc. NEVER trust the package.

I also try to obtain nuts etc directly from the producer, before processing - so, since I'm in a hazelnut producing area, I eat a lot of hazelnuts.
I also carry epipens, antihistamines and I have a paranoid husband, all of which contributes to a certain peace of mind while I am out and about. Also, I don't have any complicating conditions - when I have a reaction that's all I have (which is quite enough, thanks).

I leave the hyperventilating panic to DH, and normally remain far calmer than the people treating me. After 40 years, either I will survive or I won't, and all I can do is maximize the odds in favour of survival by being honest about which stage the reaction is in and exact about the amount of difficulty I am having breathing etc.

Since everyone's severity of reaction is different, you are the one who has to determine your own comfort level of paranoia about exposure. Being upset about someone else's demise due to the same allergy is a lot like being upset about a fatal car accident on a route you regularly travel. You'd still go that way, and you might take a little more care in that intersection, but I doubt you'd stop driving altogether.

Liz

Tina H.

Since finding this site and reading about others' experiences I feel I've learned so much about my own reactions. But, every reaction is slightly different, so I never know exactly what to expect in terms of severity (which is one of the reasons I originally asked the question).

I have never experienced crippling anxiety or fear, but those around me often panic. I like to know as much as possible about what to expect so that I remain calm myself.

I don't know if this helps...

When I was very young, like many people, I immediately experienced the strange sensation in my mouth, my lips would swell within moments of contact and I would vomit violently (usually within 5 minutes). Most of my swelling was internal. After vomiting, my nasal passages would completely close, my breathing became labored and I would have trouble swallowing.

As I got older, I stopped vomiting. Then the external swelling started. Swollen eyes and face, etc. within 10-15 min. It was on such an occasion that I was first administered epinephrine (what a miracle!). In the past 15 years, I've had only a handful of incidents. In most cases I did not actually ingest (ie. spitting out before swallowing or environmental contact only), but still ended up in the hospital. Also I've had DELAYED reactions which I find the most disconcerting.

What I have noticed over the years is that less and less contact will cause more of a reaction. (I once wore the full-body lifejacket provided on a whale watching boat. I guess someone who wore it before me had eaten nuts. My entire body became one big hive, I couldn't open my eyes and my windpipes became constricted.)

The life-threatening nature of this allergy was only brought to my attention in adulthood. I had always felt that I understood what was going on and could control it. Learning this was not true made me want to gain better understanding from the experience of other people.

I would think that what might change for your daughter if she's exposed in the future is the length of the reaction. When I was young I also could end up playing happily within an hour or so after exposure.

Also I have noticed that epinephrine and benadryl both can give the illusion that the reaction is over when in fact it might recur when the drugs wear off. I have always assumed that by that time, the threat is lower, but based on the recent accounts I've heard I'm not so sure... (anyone?)

Does anyone know what the chances are of having fatal reaction when everything is done right (Epi-pen and benadryl administered early/immediate emergency room care)?
I live in constant fear that even if I do everything right during my son

My most severe reaction was to tree nuts (PESTO! which showed up in "RED" spaghetti sauce as an added spice!)....it mixed in like pepper.

I thought I would die, and my thought was....there is no way I am going to suffocate to death. We stuck a straw down my throat, and although my throat closed around it, it did provide some resistance and time.

I guess.....what makes one reaction more "fatal" is time. Time and panic. Our bodies immediately go into shock. That alone puts up a block for our body to aid in the situation (even though it is helpless anyways!)...but we are shutting down our other working systems, with the panic.

To avoid...I ALWAYS have epi, and always know where the nearest hospital is....and always am with people who know the details.

I think the reaction consists of three things:

1. The reaction itself
2. The panic...(which can often be worse in small reactions!)Because it is just fear of what you know "could" happen.
3. the reaction to the shots.....ugh...

I am an exhausted mess after a reaction.....the fight that your body goes through is quite a work out!

Hang in there....and STAY SAFE! =)

JanFran thanks for your response. I re-read my post and I sounded a bit more strident that usual. I am feeling stressed out right now about all of the deaths that I keep learning about. I find myself becoming really anxious about my son's future. I too would like to know what makes a fatal reaction different in its initial stages. Take care.

I am 62 years old and have had PA since I was born. For the most part, all my parents knew was that I HATED PEANUTS, so they never tried to make me eat the dreaded PB&J sandwich. When Mama made those sandwiches for my brothers, I got something else. As far as I can remember, there was never any peanut butter in the jelly, either; I can only assume that she was "schooling" my brothers unbeknownst to me, thank goodness. At some point, my pediatrician told Mama and Daddy I had an allergy to peanuts, but no tests were ever done.

I seldom talk about my allergy, so the only people that know are the ones close to me. I have been proactive over the years to avoid peanuts and their by-products. As the amount of peanut products have increased in different kinds of food, label reading has become second nature. I am thankful that the FDA made food processors put the peanut warning on labels, now I don't have to guess as much.

Over the years my symptoms have gotten worse; the most recent presentation has been convulsions. These started showing up about four years ago. I have had three such attacks and the last two occurred within five days of each other because I was in close proximity to someone who was eating peanuts. I got away from the area as soon as I could, but I still went into anaphylactic shock, albeit, not as bad as one of my past exposures. I am a middle school teacher. If anyone on my job had never seen someone in anaphaytic shock, they sure know now. Those convulsions had me bouncing off the floor like a rubber ball :-). Yes, I laugh because believe or not, I was having an out-of-body experience the whole time and I was laughing at the whole thing. While I realize my situation is serious, I treat it with humor. It keeps everyone around me from going nuts because I have PA. It is also a way that I keep myself from getting depressed about having PA. and the changes others have to go through when I reacting to an exposure.

I have been fortunate that my first husband was, at least, tolerant of my condition and my children, as they became older, have been very protective when it comes to my eating habits. My new husband of six months is very aware of my condition and never hesitates to make sure that wherever we are eating does not use peanuts or their by-products in cooking meals. If he forgets, he doesn't get uspset or angry when I ask the waitress if any peanut oil or peanuts are used in their food. However, he likes peanuts. Since he travels a lot, he can eat as many as he wants when he is out of town.

People and children who have PA simply have to know their parameters. You have to know what you can do and what you can't, know where you can go and where you can't. It is not easy, especially, when you have no idea how you will present when you have an exposure. Sometimes, I end up in the hospital, but I have only been in the hospital four times in all the years that I have had PA. Most of the time, my reactions are over in hour or two without use of the epi-pen. I have learned how to mellow a reaction without the use of my epi-pen and yes, I have one at work, one at home, one in my purse, and one with a teacher who is a close friend. Although I have had PA a long time, I have only had the epi-pen for four years.

For those of you who have children, teach your children how to to take care of themselves to their best of their ability given their ages. If you panic, they will panic. If you get anxious, so will they. Whatever you do, don 't allow them to develop a sense of helplessness. Until scientist can come up with cure for PA, they have to live with it. While I want the rest of the world to stop and take note that PA can kill me, it won't. There will always be people who think I am faking or trying to get attention. I cannot and you cannot let people like that keep you and/or your child in a state of anxiety over PA or any other allergies. Life goes on and you and they must live and stand strong.

As for adults who have gotten PA or other allergies later in life, it is the same for you. Learn yourself and what you can tolerate and what you can't. Be very persistent in making sure that you take care of you. Yep, your world is changing, but it shouldn't stop you from enjoying it to its fullest.

At the moment of this posting, I am home resting from my ordeal yesterday. I am on prednisone and pepside(sp) for the next five days to stop any relapses. Stuff makes me tired, but I will be back at work on Monday!

Be blessed and take good care of yourselves.

Hello, Enough, I am glad I have been of some help to you.

Now I am on prescription strength Allegra and the doctor says I will be on it for the rest of my life. I am also awaiting blood test results that will let me know how allergic I am to peanuts. Because of my last manifestations, he said there will be no skin test.

I guess he wanted to avoid seeing a 62 year old woman bouncing around on his office floor because she was having convulsions from peanuts.... :-)

He also said my symptoms were not typical for a person who has PA, but that people manifest differently. Am I worried, NOPE! I know God has this covered, so I am planning for my retirement from teaching in June, 2011.

I think I am going to make a fancy carrying case for my epi-pen and my allegra. I might as well put them in something fit for a Diva to carry. :-)

Thanks so much, you are a true inspiriation. The people in your life are lucky to have you. So are your students. Wow. Just one post and you really gave me such insight. A fancy case? I love it!!!!! Talk about a glass half full. I think motivational speaking may be in your retirement.

Best of luck with your allergies. thanks again.

Hi Enough,

So guess what the allergy doctor told me the test results told him? I am very allergic to peanuts but not off the charts. I should stay away from peanuts or anything with peanuts in it (Well, now, I already knew all that!)... and continue to take allegra every evening.

So my "dance" goes on and my cup still runneth over!

Becoming a motivational speaker has crossed my mind. Among all the other things I do, I am an amateur story teller, so motivating people would be something I think I could do.

However, right now, I am being called to do some fundraising so I can help people feel good and, maybe, even smile. I intend to launch my first "Bring a Dish, Bring a Dollar" fundraiser this summer. The money being raised will go to the Hiefer(sp) Foundation. Even if only five people come with their dollar and their dish, that is five dollars we can contribute to a cow or chickens or something to enable third world families in taking care of themselves AND we get to eat something the donors brought for us to taste!

Take care of yourself, be good to yourself and love yourself...

Thanks again. I have an appoinment for an allergist in early March, wish I could get in sooner. I just want to start the process. I had pine nuts in a salad a week ago and bingo, the reaction started, the whole nine yards. Then the same thing with a piece of dark chocolate, not as strong, but enough for benadryl. It'll get better, once I know for sure what to have and not have. In the meantime, I will be careful.

Good luck with your fundraiser, helping those to help themselves give them self respect too, I like that idea. Best of luck to you with everything.