Clarity on Anaphylaxis

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I direct this question to Cindy Spowart Cook and PattyR but welcome any input, of course.

Cindy and PattyR, you both mentioned in the 'do we need an epi-pen' thread that the reaction described was an anaphylactic response although pdaisey did not mention respiratory symptoms. Lauren's last reaction was pretty much the same as the one pdaisey described. She did not swell for days but she did have a second, more severe, reaction set in 12 hours after the first. We were told, after the fact by another PA parent, that this reaction could have 'ended up in full anaphylaxis' and that she should have had an epi injection. The conclusion drawn by the other parent was based on the amount of facial swelling, repeated vomiting and the 'fact' that these symptoms are a precursor to anaphylaxis. (I used 'fact' because I'm not sure what is fact or opinion anymore.)

Note: Our doc at the time said Benedryl only *until* respiratory signs appear which is why she didn't get the epi. Needless to say, we have a new doctor now.

Would you say that her reaction was 'anaphylactic'?

Andrea

On Dec 21, 2000

Andrea, I'd have to read your original post about your daughter's reaction to see exactly what happened. I NEVER tell another person on this board if I think their child or they have had an anaphylactic reaction. It is definitely not my place.

I did, however, read another PA Mom's list of her child's symptoms during an attack and suggest that she please find the thread defining anaphylaxis because I suspected that her child had had an anaphylactic reaction. She read the definition and then concluded for herself that her child, had, in fact, had an anaphylactic reaction.

Also, I would like to say that in my son's case, his 2nd reaction was considered anaphylactic but did not involve any respiratory problems. Perhaps if he had not been administered the Epi-pen as quickly as he was, there would have been respiratory problems that were obvious to me. Also, when he was taken to the Medical Centre (right next door to me) the doctor did listen with his stethoscope and he could determine that there was some difficulty breathing. But, again, it was not obvious to me.

My son's 2nd reaction involved the swelling of his lips and eyes and ears. His lips turned blue. He had hives and was turning red (generalized flushing). He was extremely cranky. His nose was running. At first, I thought perhaps he was catching a cold, but when his lips and eyes were swollen, I knew that it was more than that. I immediately took him to the Medical Center and it was there that the doctor determined that he required the Epi-pen (I had told them on the phone that I had one and was willing to use it). The doctor gave him the Epi-pen, followed by Benadryl and a prescription for Pedi-Pred for his lungs for a week.

When I look back at that incident now, I also realize that we should have been sent to the hospital. The doctor only had us wait in the office for an hour to see if anything else happened before sending us home. I didn't know at that time that a reaction could occur for up to 8 hours after the initial one (or perhaps longer as you have posted above).

From my school board's policy on Anaphylaxis, I will type out the definition of it for you. I know there is a thread here somewhere entitled YOUR definition of Anaphylaxis or something like that and I think it was taken from another source and explained perhaps a bit better.

Anyway, here goes:-

"Anaphylaxis is a life-threatening allergic reaction involving multiple organ systems in any combination.

Target organ systems: * skin * airways * heart and blood vessels * gastro-intestinal

Symptoms can include: * tingling in mouth * watering of eyes and nose * hives, rash, itching * generalized flushing * swelling - eyes, ears, lips, face, tongue * constriction in breathing, swallowing * wheezing, sneezing, coughing and choking * hoarseness * vomiting, stomach upset, diarrhea * sense of doom * lightheadedness * fall in blood pressure * loss of consciousness * coma and death

These symptoms can occur within minutes.

Epinephrine (usually carred in the auto-injector Epi-pen) is the treatment of choice and all efforts should be directed towards its immediate use. If epinephrine is not administered within the FIRST signs of symptoms, there is a chance the reaction may not be halted."

Now, I have read somewhere on this board that either two or three of the Target Organ Systems must be hit for it to be considered an anaphylactic reaction.

In Jesse's 2nd reaction, his skin and heart and blood vessels were affected. I am not clear about gastro-intestinal or airways. Yet, the doctor still determined that he required an Epi-pen.

With Jesse's 3rd reaction (his 2nd anaphylactic one), he experienced almost all of the symptoms on the above-noted list.

Now, for me, and this is only with MY child, as soon as I see his lips swell and turn blue, I will know that he is having a reaction as those symptoms have been present during all three of his reactions. As soon as I saw that, given the severity of his last reaction, in particular, I would administer the Epi-pen.

Andrea, I would like to say again, that I, in no way try to tell another parent if I think their child has suffered an anaphylactic reaction or not. I only know what to look for in my own child, while also knowing all of the signs and symptoms of anaphylaxis now, and know what I would do with my child.

I have read posts from other PA parents on this board who have outlined the symptoms of their child's reaction and they were not questioning whether the reaction was anaphylactic or not. Some did not consider it an anaphylactic reaction. I did not question them at all or even suggest that they may be wrong in not calling it an anaphylactic reaction.

Again, with the one woman, who was searching to see exactly how severe her son's reactions were, I only re-read her list of symptoms and came back in and posted that I really felt she needed to find the definition of anaphylaxis thread and read it and see if SHE felt her son had experienced an anaphylactic reaction. I was terribly concerned for both her and her child. But, it was her decision to make after reading the information that has been provided throughout this board. It was not up to me to say to her, your child had an anaphylactic reaction.

I hope this has been of some help to you. Again, I would have to re-read the list of your daughter's symptoms, but, even if I did that, I would merely suggest to you that you read the definition of anaphylaxis so that you could determine if you wanted to call the reaction anaphylactic or not.

I do disagree with the doctor who said that there has to be some signs of respiratory problems. This is only one of the body symptoms that could/can be attacked. I also think that if your child is asthmatic, which mine is, the chances of that particular thing happening is greater. However, this means, to me, that Jesse, along with requiring a shot of the Epi-pen also requires two puffs of his Ventolin reliever asthma puffer.

I hope I have helped in some way. I was just coming in to check the Smarties thread I didn't check last night and your thread caught my eye! Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Dec 21, 2000

Here are two links to information that might be useful to this discussion. [url="http://www.resus.org.uk/pages/reaction.htm"]www.resus.org.uk/pages/reaction.htm[/url] [url="http://www.anaphylaxis.org./whatis/faq_main.html"]www.anaphylaxis.org./whatis/faq_main.html[/url]

On Dec 21, 2000

AndreaM., I'm going to correct myself before someone else does it for me! I re-read my post to pdaisey and there was no mistaking that I told her her child had suffered an anaphylactic reaction. So, I would have to correct what I said in the above post. Perhaps I'll word it this way - I try NOT to say that to people and usually ask them to make their own decision re this. And certainly if someone posts symptoms that are anaphylactic and then says that their child did not have an anaphylactic reaction, I never correct them. It is not my place. I'm actually quite surprised by my post in pdaisey's thread, as I do try to tread lightly in here. However, I do stand corrected. I definitely did tell her that her child had had an anaphylactic reaction. Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Dec 21, 2000

AndreaM,

Kathryn gave some good links. Another good source of clear, consise medical definitions is the Health on the Net Foundation site: [url="http://www.hon.ch"]www.hon.ch[/url]

There is a link from the home page to an Allergy Glossary which is fully hyperlinked and wonderfully designed. There is also a link from the home page to Medline where you can search for medical journal articles.

If you visit the HON site, note the "HON Code of Conduct", which provides standards for health information on the net. You'll notice that the Food Allergy Network home page has a little "HON CODE" label. This indicates that the site adhers to certain standards in providing medical information.

Hope this helps.

On Dec 21, 2000

Thank you for getting back to me so quickly Cindy and for all the info.

Her doctor has given us respiratory signs of anaphylaxis (blue lips, swollen face, shortness of breath, etc) and when I read "anaphylaxis", those are the only symptoms I tend to think of.

Re-reading my post, it could be read as if I were asking you to diagnose my daughter and it was not my intent to imply that. Sorry.

My question arose because well, I have not been well informed on this allergy and I always feel like I'm missing something. Our first doctor did not even give us an epi-pen. She said instead, "Just keep her away from peanuts." She did not indicate that food allergies were any different than hayfever! Lauren's second doctor has come HIGHLY recommended to us by a PA mom, whose daughter is severely airborne PA, but still, we do not feel he the right allergist for her or us. He refused to test our younger daughter saying the chances of her being allergic are practically non-existant. Having read on this board of a number of PA siblings, I found this a little difficult to believe and not worth the risk for a simple test. I wanted her checked and forced the issue (thankfully, she tested negative!).

We've also learned that, for the most part, experience is the better teacher, not doctors (at least not our doctors). PA parents have provided us with information not provided by her doctors. (e.g. Her new doctor's philosophy is, "Treat a reaction based on prior reactions." However he also told us not five minutes after that, "You can never tell what a reaction will be like". Since we learned that chances of fatal anaphylaxis increase if the epi is only given when respiratory symptoms appear, why chance it?) So, I was really trying to tap into your wealth of experience as a PA mom.

(Not accusatory, just explaining my confusion) Your post quoted was, "Your child suffered an anaphylactic reaction and does need and Epi-pen prescribed! Best wishes and welcome!"

I could go on but it is not necessary. I think you actually answered my question in your reply to me. I just really wanted to make sure that I, again, wasn't missing information based on your reply to pdaisey. Lauren is at home all day with her Dad, does not go to pre-school (kindergarten in Sept), and our immediate families have, on their own accord, made themselves peanut free. Therefore, lucky as we are, I am not "in the loop" as many PA parents are with kids in school. I rely on this board to keep me informed enough to pose well prepared questions to and force issues with her doctors since I cannot seem to rely to provide information.

Thanks again, Andrea

On Dec 21, 2000

What I have learned about anaphylaxis is that this type of reaction involves more than one body system. I was not under the impression that one of them had to be respiratory. I believe that digestive system symptons along with hives, for example, would be considered anaphylaxis. In my opinion if there was more than one body system involved, then this would be considered an anaphylactic reaction. What does your new doctor have to say about it? My son had two anaphylactic reactions before I gave him the epipen. When you are faced with the situation, it can be a tough decision. I hope this helps.

On Dec 21, 2000

AndreaM., I didn't get the impression from your original post that you were asking me to diagnose your daughter. I was quite surprised by myself, in that I would actually post such a clearly worded response to pdaisey. As I said to you in my initial response to this, I have gone back in and asked a parent to please go over their child's symptoms again and then read the definition of anaphylaxis whereby they could decide if the reaction was anaphylactic or not. I try to tread very lightly in here. No, I didn't get the impression that you were asking me to diagnose your daughter. You were asking me for my opinion. AndreaM., I'm ALWAYS in here asking for someone's opinion, so you don't have to apologize for asking for mine or anyone else's. As far as I'm concerned, that's what we're all here for.

I guess I have been both fortunate and not so with our doctors. As soon as Jesse had his first reaction to peanuts, he was prescribed the Epi-pen and this was based on what I now consider a very slight reaction that had subsided by the time we got to emergency. However, no prescribing doctor or dispensing pharmacist along the way told us that the Epi-pen only buys you twenty minutes to get your child to the hospital. So, when he had his third (2nd anaphylactic) reaction, we did give him the Epi-pen (with me trying to deal with his Father who was in complete denial about the allergy still!) and we both did not know that we should be rushing to emerg! Well, 20 minutes after the shot, he started to "go" again. We got him into a car and got him to the hospital about 40 minutes away. My child almost died. Should I have had a list of questions for the doctor re the Epi-pen? Perhaps. Should the doctor have told me that it only buys you 20 minutes to get to a hospital? Perhaps. At any rate, I now definitely know to give him the shot and get to emerg but I learned this only by nearly losing my son!

Now, as I indicated in my initial post, I am of the Epi-pen only school, and it is only because of the reactions I have experienced with Jesse. Obviously, should he break out in some hives and nothing else, I would give him some antihistamine. But, the day I see his lips turn blue and swell, I will know that he is having a reaction and he will get the Epi-pen immediately. I will also know to call 911.

I really truly believe that it continues to be a learning experience. Some of us seem to have found an almost permanent "comfort zone" where they are very comfortable with their child's ability to take care of their allergy, etc. I'm not clear I will ever be like that. I know that each year seems to present different things to deal with re PA. I remember one Father who posted in "comfort zones" thread about how their family's "comfort zone" had actually tightened up as the child got older. I'm beginning to understand this a lot more than I did perhaps when he originally posted it less than 6 months ago. I didn't question his comfort zone, but I couldn't actually see where he was coming from YET.

That is what I find so wonderful about this site. Your children are going to the allergist for the first time as mine did at the end of October? Come in and post. There are many many parents who have "been there, done that" and are so willing, out of caring, concern and compassion, to help you figure it out too. Your child is going to school and you want to know how to deal with that? Come in here and ask and again, the same thing. It is a wonderful thing to have.

I know that I did a lot of things re PA before I had a computer and found this website, but I've found that by coming in here I receive support that I never received before. I receive validation for the things that I think about or how I feel. And, as you, I learn from the experience of other PA parents who have already walked the mile ahead of us in their shoes. I do know that my head has nearly exploded on several occasions and my family was saved by the existence of this website.

Last year, when I had a couple of difficulties with Jesse's school, or a couple of THINGS happen, I didn't have this website or this computer, so I was left to deal with it all by myself. I think it's easier to be able to come here and find someone that is ever so willing to help. And all of us, no matter how our opinion differs, understands.

No, I didn't take any offense whatsoever to your post, AndreaM., and I was quite shocked to see what I had posted to pdaisey, but I certainly didn't mind coming in and posting a reply to you. It seems like the Anaphylaxis Handbook is right beside the computer. I must use it for reference a lot.

Season's Greetings and best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Dec 21, 2000

If it is any help to anyone when I asked my doctor if my sons reaction was anaphalactic he said that it was.

On Dec 21, 2000

pdaisey, thank-you, especially since we were discussing posts made in your thread re your son's reaction! I, again, am actually quite surprised at myself for having answered so bluntly, if you will, when you asked what you thought about your son's reaction. I usually tend to not say things so definitely. Maybe it was because it did present itself as fairly clear cut to me, but probably only after I looked at that list sitting beside me at the computer.

Season's Greetings and best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Dec 22, 2000

(I should preface this I am AndreaM, but posting from home, not work.)

Thanks Everyone. You know, it's really semantics anyway. Based on the symptoms she's had, we've decided that the Epi pen will be given if facial swelling appears. It's just that to me, the word anaphylaxis is extremely frightening and using it in the same sentence as 'Lauren' sort of raises this to a new level for me. Not much unlike the first time I had to "scare" someone about this allergy by telling them point blank that "Lauren could end up dead if given peanuts" to drive home the seriousness of this allergy. To hear myself say those words was a very difficult thing to do.

PattyR, Lauren's doctor did not say that her reaction was anaphylactic. As a matter of fact, he did not think it was a severe reaction. It had two phases twelve hours apart with phase II consisting of severe facial swelling and vomiting! (My home is peanut free. The initial reaction occurred at my mother's house via Chinese food, brought by a visitor, which she did not eat but contained peanuts. Phase II occurred at home.) How much closer to not breathing does it have to be to consider it severe?! Sounds to me like I've just convinced myself that we need a new doctor.

It's been a bad week. All is fine. Everyone is healthy, yet I seem to be feel, oh I don't know, maybe vulnerable is a good word. Maybe I'm just feeling a bit nervous because the holidays are approaching.

I am glad to hear, Cindy, that your husband was in denial. I haven't heard anyone else use that phrase and that was exactly how we were with Lauren's last reaction.

Happy Holidays All! Andrea

On Dec 27, 2000

MomofTwo, I just wanted to say that I have posted in another thread on this board that I think denial is an okay thing to experience. I don't think it is something that you should ever beat yourself up about.

I was never in denial about Jesse's PA, but it had something to do with my gut instinct. Now, his father's denial was excessive and our child almost died.

But I do think a great number of people experience denial in different degrees and I don't believe they should be condemned for this feeling (?) or have others condemn them. It is a natural reaction for a lot of people when presented with a problem.

As long as you are able to keep Lauren safe, you can work on getting through your denial. I know that you don't want the label "anaphylactic" on your daughter. No one does for their child. It does sound SO serious.

My girlfriend, a long time migraine sufferer, has recently found that her 12 year old daughter has begun to suffer migraines. She is very hesitant to "label" her as such though because she knows how stymatizing the label can be. She has gone over all of the triggers with her daughter to help her reduce them. But, she didn't want that label attached to her daughter at such a young age.

Unfortunately, for us, we have to attach very specific labels to our children at quite young ages. That's why I was surprised last month when Jesse's doctor said that he was "atopic" and I thought whoa, here we have a new label for him. But, we do have to label our children PA and we do have to label their reactions anaphylactic, if, in fact, they are.

I think I understand how you're feeling. Now that you've confirmed that Lauren's reaction was anaphylactic, you're not sure if the next one will be or not. You may be assuming that the next one will be for sure. It's all so hard to figure out.

All you can do is try your best to keep Lauren safe, within the own parameters you have already set up, and go from there. I'm sure both you and Lauren are going to be fine. Just by coming in here and asking your question, shows that you care, you are seeking information and support and my soul, if anyone can provide it to you, then take it!

I know you'll both be okay!

Season's Greetings and best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Dec 27, 2000

Well, we got through Christmas without any problems, thank God, but I nearly drove myself crazy. My family is really so supportive. I am definately blessed. We had at least 10 different people let us know that things were checked and OK on both Christmas Eve and Christmas Day. How can you beat that. This happened just when I thinking, "I can't do this. I don't know how to do this.", and then, additionally I get replies from you all, who are living this too, reminding me that I am doing the best that I can (not an easy thing for me to remember. I tend to beat myself up) and I'm not alone in my feelings. Thank you! Happy and Safe New Year! Andrea

On Dec 27, 2000

Andrea, just me again. I'm really pleased to hear that everything went so well for you and your family Christmas Eve and Christmas. People can be wonderful, can't they?

I really noticed, when I first came to this site, in May, that a lot of us have a tendency to beat ourselves up. I especially notice this in discussions about what we ate during our pregnancies and what we ate if we breastfed. On those two things, I don't believe I beat myself up, simply because I've always hated pb. I may have consumed a few peanuts along the way, but certainly not a lot.

My main beat-up topic is how I argued with Jesse's father during his 2nd anaphylactic reaction rather than going with my gut instinct, which occurred as soon as he touched the offending pb rice krispie square to his lips. Instead, my child ended up in full anaphylactic shock and almost dying because I chose to argue with his father rather than dealing with what I knew was happening. Why didn't I scream - you deal with your heavy denial later but our child is getting the shot now! I will never forgive myself for that. My son will not know this. My husband will not know this. But, it is something that I will carry with me always. It is also by carrying that within me that I strive to keep Jesse safe. It's a very quick reminder of what could happen if I let my guard down too much. If you read my comfort zones, you might actually find them lax in comparison to other people's, but they are mine and they were developed and implemented after Jesse had his 2nd anaphylactic reaction. Actually, they were developed and implemented after he had his first anaphylactic reaction. However, his father was not here to see the first anaphylactic reaction so I didn't have to deal with his denial. And now, I don't have to deal with that.

I've found people on this board posting whose children have not had a reaction in nearly a decade who still are able to beat themselves up over different things. Perhaps it's the nature of the beast.

But, I think you'll find, as I have, a happy medium for all of this. And again, I have to say, having found this site has helped me immensely. If I have a difficulty that I'm faced with re PA that I haven't dealt with before, I know that there are people here that have and I come in and post. I receive wonderful, caring, supportive, encouraging responses. I receive information. I feel I receive so much more from this site than if I was fortunate enough to have a support group in my very small town. This site is my support group and to everyone who posts a response in answer to one of my posts, I am forever grateful. Someone has helped me with PA for that time.

That's also why I try to help other people going through perhaps earlier stages of dealing with PA. I hope that maybe the one right kind word may help someone from banging their head against the wall in sheer agony that night. That's what I always strive for when I respond. Others here have saved me from banging my heads on occasions more countless to remember.

Again, my whole point, which is so easily obscured by my long winded posts. We're all in this together. We may have differing views on what our comfort zones are and what are requirements are for care with regard to our PA child, but we all certainly have one thing in common. We are either parents of a PA child or we are PA people. Having that in common, surely we have even one other thing in common that can help each of us deal with a difficult time.

Again, I'm really pleased that you were able to make it through Christmas okay and safe. If you feel like you're starting to beat yourself up, come in here and tell someone. We may not have the same things that we beat ourselves up about, but we may certainly have something that we do.

As I said to you earlier, I really believe that denial is an okay thing to be feeling as long as you are still able to keep Lauren safe. Denial is a normal response. Taken to extreme, it can, of course, kill your child. But you obviously aren't that far gone. I'm not clear why I didn't experience denial with Jesse. I'm trying to remember and I think I may have experienced more denial about him being asthmatic. But, again, it's certainly not an uncommon thing to experience and as long as you keep Lauren safe, you have all the time in the world to deal with your denial.

Somehow denial also indicates to me some kind of hope. And no one can be condoned for being hopeful.

Happy New Year, Andrea!

Season's Greetings and best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Apr 3, 2003

Simply re-raising to compliment another thread Laureen currently has running. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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