At what point do you use epinephrine?

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Thanks to one of you who mentioned it in another thread, I called FAAN and asked them to fax me an article I had been trying to get for some time: the 1992 Sampson NEJM article where they profiled 7 children who died and 6 who did not.

What struck me about all the cases was that, if I was the mother, I would not have given epinephrine properly, and I still don't know what that entails. The kids who had uniphasic, immediate reactions mostly received epinephrine and survived. It was the biphasic half that had the most trouble. Basically, this group had a mild reaction that was treated with Benedryl or not treated and then they suddenly experienced respiratory or cardiac failure several hours later.

So here's the question... If you give epinephrine at the beginning of a reaction (which only works 20 minutes), how does this prevent the respiratory or cardiac problems several hours down the road? The article basically said that they don't know why this type of anaphylaxis happens.

We dealt with many reactions (my son has MANY allergies as well as possibly idiopathic anaphylaxis) and have always given Benedryl first and watched and waited for the first hour to see if an Epi was necessary. If he doesn't get better in twenty minutes and/or he starts wheezing we give him a shot and take him to the hospital.

I was just curious if the shot is at all "protective" against the later bi-phasic reaction. He's had a couple of these and they're very scary...you think everything's o.k. and then the reaction returns and escalates. However, we've never given the Epi at the beginning of one of these biphasic ones because the initial reaction is so mild.

Has anyone ever had an initial reaction where an Epi was given and then experienced a biphasic return of the reaction anyway? Does the initial Epi help or make no difference?

On Jan 9, 2002

I am interested to read the responses to your post. We have never ourselves given the epinephrine (the doctors have given the meds at the ER) and never had a second phase of the reaction occur. I really do fear this happening. Our PA daughters usually react immediately and very obviously (hives, swollen faces, eyes, lips, quick coughing, etc..) but have never had the second type of reaction you have mentioned; where the signs are less obvious and sudden and where there is a lot going on internally later. I would like to learn more about this type of reaction, if anyone has more info. Which PA people is this type of reaction more common for? Or, can it happen at anytime for anyone who is PA? Are people that have this second phase sort of reaction prone to doing so more often than others who usually have the other kind of reaction? I have read somewhere on here that the slower, less obvious reactions are sometimes more dangerous but I don't know much about it. I feel like I should know so I don't consider a reaction "done and over" one day when it hasn't really run its course. Joey

On Jan 9, 2002

Everything I have read says that a biphasic reaction can happen any time, so after you give the Epi and get to the ER, you should stay there at least four hours to wait and see if the second phase will occur. If they send you home before the four hours, it is recommended to sit in the parking lot until the four hours are up.

Joeybeth, I was wondering what the doctors say about your kids having swollen lip, face, eyes, coughing, and hives and you not using the Epipen. I don`t think I would have the nerve to do that. The article I read on which people with anaphylaxis died and which ones didn`t said the ones who died were the ones where Epipen was used late. If the blood pressure has already dropped (and you can`t see the blood pressure dropping the way you can see hives), the leg doesn`t get circulation going to it, and the Epipen may not get into the system. Do the ER doctors think it is okay with your childrens` symptoms that you mentioned to give Benadryl and head for the ER instead of giving the Epipen? I would be afraid to do that.

[This message has been edited by Carefulmom (edited January 09, 2002).]

On Jan 9, 2002

When my son had his one and only (knock wood) reaction 5 years ago we sat in the ER with him for a little over four hours. As soon as the ambulance pulled up, he was given Benedryl - he had epi enroute. They monitored him for the standard four hour period and instucted us to give him Benedryl every 6 hours for the next 72 hours. Of course, we left with a script for Epi's.

That is why is it so imperative to go to the ER via ambulance if there is a reaction. You or your child will be monitored with an EKG readout during the trip and they have advanced life saving equipment onboard. I am absolutly amazed when people give an Epi and don't follow up with a trip to the ER.

On Jan 9, 2002

CarefulMom: Both serious reactions were in the beginning of our first child having been diagnosed as PA. The first one, of course we didn't know it was PA and didn't have an epipen in our possession. We did have benadryl in the house and gave it, realizing it helps with swelling. The second time I was too afraid to give the epipen, even though I did have it with me. (I did give the benadryl on the way to the hospital)I was blasted by the doctor who saw her in the ER that night. He said I should have definitley given the epipen. (by the way, this was the night she inhaled steam or something as we sat near an Oriental restaurant in a mall or came into contact with some peanut residue on the chair- I wasn't even sure it was a peanut reaction since there was apparently no "ingestion" involved) I will give it without hesitation if this ever happens again. You are right that it is risky to let a reaction progress like that without administering the epinephrine. I was less educated then (and I'm a work in progress still but feeling much more confident if I ever have to face a similar situation again). I am not afraid to give the pen now that I understand what it does and what it doesn't do. Joey

On Jan 9, 2002

My son has luckily only had hive reactions up to this point. Should I plan on giving him the epi-pen if there is even one more symptom, like swelling? I planned on giving it with respiratory distress or when the benedryl didn't stop the hives, but I never thought about the in between symtpoms. Does anyone know?

On Jan 9, 2002

The only time my daughter had egg, she developed hives and swelling around the eyes. I had read if two or more organ systems are affected to use it, so I did. Her allergist said I did the right thing. He said that often they have wheezing you can hear with a stethoscope, but not with your ears.He said that the airways have to be closed down fifty percent before you can hear wheezing without a stethoscope. If her airways were closed down forty percent I wouldn`t have been able to hear wheezing. So, he said she could have been wheezing or her blood pressure could have been dropping, there was no way to know. However, I also think that different children are higher or lower risk than my child. Some children the reactions progress really quickly. Also, the same child can have different reactions progress differently, depending how much exposure, was it eaten or simply contact, etc. And the person can become more or less sensitive (usually more sensitive) with time.

Another time, I ate a may contain product (my daughter was not known to be allergic to peanuts then), we were in the car so I didn`t wash my hands, and she wanted her juice box. I used my unwashed hands to touch her straw and put it in the juice box. Then she drank the juice. When we got home she was scratching like crazy. I undressed her, and she had a red splotchy rash. It wasn`t actually hives. That time I considered using the Epi, but didn`t. However, I was ready, and would have used it if I saw anything else. The whole thing was just so strange, because I didn`t know that she was allergic to peanuts. I also wanted to know if the reaction would go away on its own. I really wanted to know how sensitive she was to what I had eaten. Anyhow, the rash only lasted about twenty minutes and then went away.

I think since each child is different you should ask your allergist if you should use the Epi if you only see hives. If the child has a history of really severe reactions, probably you should. Or if you are the nervous type, like me. I`d much rather give my daughter a shot than watch her die. That was my motivator the one time that I did use the Epipen. My rule for myself is two or more organ systems affected I would use it. Another thing is how far are you from medical care. I live in a big city. But last summer we went on vacation to rural Tennessee, and out there I would have done it for hives only.

[This message has been edited by Carefulmom (edited January 09, 2002).]

On Jan 9, 2002

I asked our first allergist how I could tell when to give Benadryl and when to use the Epipen. He said if there were only hives, give Benadryl. But if there was ANY swelling at all, use the Epipen. It's interesting, though, that the EMT's who came for my daughter's first (and only) reaction, which consisted of hives and severe swelling of the face -- eyes, lips, tongue -- said they didn't use epinephrine until someone started having breathing difficulty, which she never did. The ER gave Benadryl and Prednisone, no epi, and kept us for two or three hours to see if the reaction got any worse.

On Jan 12, 2002

I think I'm missing something in this discussion. Is there a risk I'm unaware of in using the epi-pen that should make me hesitant to use it if my son starts to have a reaction to peanuts (even if the exposure is only suspected)? What are the dangers of giving the epi-pen. I'm unfortunately well acquanted with the dangers of the peanuts.

And if the epi-pen's bad effects are mild, why would I even hesitate to use it?

On Jan 12, 2002

There is no harm to using the pen and there is risk of serious harm, even death, if it is not used. My doctor and all of the recent medical research that I have seen says use it--don't hesitate. Some doctors thinking/education about this is way out of date and based on old science my opinion only of course} and they give out outdated advice. Use the pen whenever there is a reaction. It will not hurt and can save a life.

On Jan 12, 2002

In our case, our son is allergic to many common foods including milk and soy, and even though we try very hard, we generally have one or two full-out reactions a year.

In addition, we probably have an incident a month that may be cross-contamination or idiopathic anaphylaxis, where he'll have a very mild possible reaction that won't progress (just itchy mouth or throat and a tummy ache).

Additionally, because his reactions no longer involve hives but do involve a respiratory response, an asthma attack can look a lot like a food reaction.

If you take this all together, we have the potential to give an Epi about 40 times a year.

If your child is only allergic to peanuts and has an obvious reaction pattern you don't have this issue. However, I *can't* give an Epi every time so this topic is always of interest to me. Additionally, my son has had two very mild reactions and then serious bi-phasic reactions 2-6 hours later.

Epinephrine is normally a pretty safe medication, but some kids do die from it. (They usually are kids with medical issues but not always.) Additionally, there are people who die from epinephrine overdose because they overreact with multiple shots.

All that aside, my original question was whether giving epinephrine at the beginning of a reaction would do anything to mediate the bi-phasic reaction that actually killed any of these kids. In other words, even if you give the epinephrine, it only works for 20 minutes. How does this prevent children from dying from bi-phasic reactions?

On Jan 12, 2002

I was not aware that children without heart problems who are given the correct dose of epi at the correct time intervals have died. Can you point me to some sort of reference (online or otherwise)on it? I want to make sure I am well informed, and this goes against what I have read. So if I am wrong I would like to know. As far as the biphasic reaction, I think the only way around it is to stay in the ER for the full four hours.

On Jan 12, 2002

There is no guarantee that the EpiPen will stop a reaction from bouncing back - that's why there has to be a trip to the ER after the EpiPen is used.

Carefulmom,

The warning written on the EpiPen instructions sheet says:

"Accidental injection into the hands or feet may result in loss of blood flow to the affected area and should be avoided. If there is an accidental injection into these areas, go immediately to the nearest ER for treatment. EpiPen Jr. should only be injected into the thigh as indicated in the drawing below."

The Prescibing Information included in my EpiPen goes into specifics about adverse effects, who MAY have problems with the epinephrine, etc... I'd type it out, but I don't have the time at the moment. I'm sorry! If anyone would like me to later, just ask and I will as soon as I get the chance.

Take care, Tammy

On Jan 12, 2002

This is the Epi-Pen PID:

[url="http://www.medsafe.govt.nz/Profs/Datasheet/e/EpiPeninj.htm"]http://www.medsafe.govt.nz/Profs/Datasheet/e/EpiPeninj.htm[/url]

The key part is:

"Adrenaline can cause potentially fatal ventricular arrhythmias including fibrillation, especially in patients with organic heart disease or those receiving other drugs that sensitize the heart to arrhythmias (See Interactions with Other Drugs)."

In other words, it can cause a heart arrhythmia that can kill. A lot of sudden cardiac deaths in young people can be attributed to a surge of natural adrenaline that gets their hearts out of wack...same can happen with injected adrenaline.

I'm certainly not saying that this should stop anyone from injecting in an emergency, but there is a risk, just as with all medications.

On Jan 12, 2002

Our doctors have told us that we should always go straight for the nearest medical help even after using the epipen and even if symptoms do improve. We were told the epinephrine sometimes just "delays" the reaction for a short period of time so that you have time to find emergency medical treatment. Joey

On Jan 12, 2002

I interpret the insert to mean that death can occur with epinephrine IF the patient has a heart arrythmia or is on other medications that affect the heart. Also, if it is injected in the wrong place---but I am questioning if the patient doesn`t have heart problems and is healthy other than allergies/asthma and assuming the Epi is used correctly---correct dose, correct time interval, and correct location. I`m sure I would never inject it into the wrong place (fingers, toes, etc). I still haven`t found anything saying that if it is used correctly and the patient has no heart problems, can it cause death? I was under the impression the answer is no..

"A lot of sudden cardiac deaths in young people can be attributed to a surge of natural adrenaline that gets their hearts out of wack" This goes against things I have read--could you point me to some sort of reference on this?

As far as going to the ER after using the Epi, that is a given. I think the original question was more about how long to stay in the ER to avoid the chance of a biphasic reaction occurring after being discharged home.

[This message has been edited by Carefulmom (edited January 12, 2002).]

On Jan 12, 2002

Antihistamines and Adrenaline alone may not be enough to ward off biphasic reactions. That's why sometimes EMTs or ER physicians also administer Prednisone or other corticosteroids - its use is [b]specifically[/b] warranted to decrease the severity of a delayed (biphasic) reaction.

Here is a link to a rather lengthy (but definitive and informative) article on emergency treatment of anaphylaxis. The information on biphasic reactions is about halfway through the article.

[url="http://www.emedicine.com/emerg/topic25.htm"]http://www.emedicine.com/emerg/topic25.htm[/url]

Or use your search function while at the above article: Press and hold the ALT key and press F at the same time. A screen will pop up asking "find what?" Type biphasic into the box and you can access the info in that large article much more quickly.

Carolyn

On Jan 12, 2002

The only time I had to use the Epi, my daughter was given Prednisone, but the doctor said it takes anywhere from 6 to 24 hours to kick in, and that it would not prevent a biphasic reaction. That is why they told us to stay for four hours.

On Jan 12, 2002

The article doesn't say Prednisone will "prevent" the delayed reaction, only that it will decrease the severity if it occurs.

I want to clarify my post further that corticosteroids are the THIRD line of defense.

In anaphylaxis, adrenaline (EpiPen) is first to STOP the reaction; antihistamine (Benadryl) is second to REVERSE the reaction; corticosteroids are not always used because their use is not always warranted. Never try to stop an anaphylactic reaction with Prednisone as the first line of defense.

Just to clarify my 1st post.

Carolyn

On Jan 12, 2002

Carefulmom, here's a source that does include a brief paragraph on serious side effects of epinephrine:

[url="http://content.health.msn.com/drug_article/article/4046.1248?bn=Adrenalin"]http://content.health.msn.com/drug_article/article/4046.1248?bn=Adrenalin[/url]

If you're really concerned about this, perhaps you should discuss with your doctor or pharmacist...although the risk seems to be very small.

Here's a reference on sudden cardiac death:

[url="http://my.webmd.com/content/article/1675.51121"]http://my.webmd.com/content/article/1675.51121[/url]

"A sudden infusion of certain chemicals or hormones into the bloodstream can also disturb heart rate. Many drugs, including caffeine, nicotine, alcohol, cocaine, and inhaled aerosol propellants, can cause heart rate to race or become otherwise irregular. The same may occur in response to conditions that boost adrenaline (also known as epinephrine), such as shock, fright, and anxiety."

While you're right that many people do have underlying heart disease, with others there's no cause discovered. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

[This message has been edited by boobrinamom (edited January 12, 2002).]

[This message has been edited by boobrinamom (edited January 12, 2002).]

On Jan 12, 2002

Very helpful, thank you. Since my daughter does not have heart disease, high blood pressure, diabetes, or thyroid disease, and is not on any heart medication; this confirms that it is fine to use an Epi on her. Thanks.

On Jan 12, 2002

Per our former ped allergist regarding Epi's. The reason you give it in the thigh is becuase it is "meaty" and you have less of a chance of hitting a vein. The only time it is truly dangerous re: heart problems, is when you actually do hit a vein. I asked our current ped allergist about this and she agreed. She also said that in all her years of practice, she has only heard of ONE case where a vein was accidently directly injected and that child suffered no permanent damage.

On Jan 12, 2002

Benadryl is for hives, Epinephrine saves lives.

We won't hesitate. The one time we gave it (find my post last summer) it worked like magic. Would not delay.

On Jan 13, 2002

Carefulmom, I'm going to try one more time on this one. All medications have rare, but potentially harmful side effects and adrenaline is no exception. If it gives me any more credibility, I will tell you that I work for a Fortune 50 pharmaceutical manufacturer and see product inserts and deal with the FDA all the time. (I'm in communications.)

You are absolutely right that you should not hesitate to give it to your daughter, and none of my posts were meant to imply that. This was totally off-topic from my original post (which very few people actually answered). I simply wanted to know the mechanism of epinephrine on preventing or mediating a late-stage reaction. (In other words, if I had given an Epi the two times my son had late-stage reactions, would it have changed anything?)

Whenever you give a medication, doctors make a risk/benefit assessment. With anaphylaxis, that risk/benefit is clear - the potential for good FAR outweighs the potential for harm.

However, there are cases where healthy children have trouble. There are also cases where children who appear to be healthy have an underlying condition that comes to the fore after an incident with medication. That's the other half of the reason they insist you take your child to the E.R. after administration: so they can watch for heart arrhythmias, elevated blood pressure or other complications.

I do not mean to make you uneasy or say in any way that this should change how you administer epinephrine. However, as Cindy said in a thread earlier: "Knowledge is power."

Again, if you want clarification, I really recommend you talk to your pharmacist or doctor rather than get information that's this important from laymen.

On Jan 13, 2002

I have read this thread with interest. Brian is one who has had a "bi-phasic" reaction...I tend to think of it as triphasic, which I think you will understand as I tell our story. The cross-contaminated exposure happened Sun at 2pm. Gave Benadryl. Things looked good. Gave it 6 hours later. He woke up in the morning with hives, so we started Prelone in addition to the Benadryl. He looked fine all day Monday. Gave Benadryl at bedtime Moday pm. He woke me up at 11:15 complaining he itched, and was hives from his hair follicles to his toe nails. Since he also has asthma, I checked his breathing, it was OK. We went to the ER, had epi, another anti-histamine on top of Benedryl, and doubled his steriods. Fast forward...Wednesday at 6pm. Hives back, lung function declining quickly, Emergent contact with Allegy MD, who changed meds, etc. Follow-up the next morning, she said, "Next time, give Epi at the first sign. Because the histamine levels don't get as high, we can usually short circuit the bi-phasic reaction. Next time, we won't hesitate at all, even if it looks minor. We have been to the local fire station and he isn't scared of his 9-1-1 ride, at least not now. (Add the emotions of the moment, and I am sure it will change) Added benefit, some of the paramedics who would respond if we were somewhere local (school, daycare, etc) have met him. Does that help anyone? Stay safe! Kristi

On Jan 14, 2002

Kristi, what would you do if you didn't have hives as a tip-off?

We just had an incident LAST NIGHT (our monthly special). My son and I went to a movie. I took along safe candy, but I also had milk chocolate. The last reaction he had was also in a movie theatre. My husband had poured his candy into his coat pocket, and my son accidently reached into his pocket, thinking it was his candy.

Anyway, he eats candy all through the movie and announces as we're leaving that he has an ichy throat and tummy ache. I'm suspicious that it's psychological, but give him Benedryl as soon as we get to the car. (6:00 p.m.)

We get home and he's not better. I ask if it could be because he's hungry (he has trouble telling the difference between the start of a food reaction and hunger pangs sometimes) and give him some pretzels. He eats a couple.

I call him into dinner (7:00) and he takes one look at his plate and runs for the bathroom. He's vomiting on and off for the next 20 minutes.

His stomach ache seems no better 45 minutes later and he says his throat feels swollen. He also says it felt a little swollen earlier but he didn't want to tell us. At this point, my husband drives him to the ER (without giving the Epi).

When they get there, they take a pulse ox and he's fine. No more vomiting. However, they say his throat's red, so they do a throat culture, gastric x-ray and blood/urine work-up. Everything's fine, they let him go home at 12:30.

This is the other side of food allergies that drive me crazy! Was this a reaction? This is very hard to tell from normal "kid" stuff unless it goes into wheezing or a hoarse voice. How do you keep from giving the Epi for a sneeze, but make sure you get the really important times without waiting it out?

Our doctor says to watch and wait. It's not because his advice is outdated (he's one of the best in Chicago and studied with Sampson). It's because he's pragmatic.

Would anyone like to throw in their 2 cents on how I should have dealt with this one? Remember that my son *has* had moderately severe reactions. They look just the same at the beginning.

On Jan 14, 2002

Here's one other source on "real life" use of epinephrine. Of course, without reading the study, it's hard to know what the circumstances were with the two patients who died from the adrenaline.

*******************

Volume 2, Number 6 November-December 2000 ALLERGYWATCH

Fatal Anaphylaxis: Findings of a Registry Study IN severe cases, anaphylaxis may progress so rapidly that no treatment is possible before the patient goes into respiratory or cardiac arrest. Randomized trials of treatment are impractical; other means must be sought to make management recommendations. Toward this end, the investigators analyzed 164 deaths from ana-phylaxis, identified from a British registry.

The deaths occurred over a 6-year period; anaphylaxis was certified as the cause of death in each case. Twenty-five additional cases were excluded, including 2 deaths from adrenaline overdose in the absence of anaphylaxis; 2 fatal myocardial infarctions occurring after adrenaline treatment; and 14 cases involving complex circumstances around the time of death.

Overall, about one-half of the deaths were iatrogenic, one-fourth were caused by foods, and one-fourth by venom. Fatal reactions to food commonly involved respiratory arrest, while shock was more likely in patients with iatrogenic and venom reactions. Respiratory or cardiac arrest occurred in a median of 30 minutes for food reactions, 15 minutes for venom reactions, and 5 minutes for iatrogenic cases. Resuscitation was successfully carried out in 28% of cases. However, the patients died 3 hours to 30 days later, most often from hypoxic brain damage. Only 14% of patients received adrenaline before going into arrest. The findings have important implications for the treatment of anaphylaxis, especially early use of adrenaline. However, some reactions are so severe that treatment could not be successful; allergen avoidance is key to preventing such reactions. Some deaths in patients with previous reactions might be prevented by recognizing the potential for cross-reactivity. Adrenaline overdose can also be fatal, and must be avoided.

On Jan 14, 2002

Wandering a bit off topic here, I recall reading the story of why researchers stopped experimenting with food-based allergy shots in an attempt to build up immunity in patients. You're all familiar with using diluted grass or tree-based serums to treat someone with grass or tree (eg.) allergies? A few years ago researchers diluted the peanut protein and recruited volunteers, including children, to receive injections of the serum in a hospital environment. Resuscitation equipment was right beside the volunteers; they all had IVs in place in case of an adverse reactions, etc. All the right precautions were taken.

One boy, approximately 11 years old, received the injection and was immediately in distress. Despite all the precautions he died within minutes. The autopsy showed he had a spasm of the larnyx - his larnyx clamped down and allowed no oxygen to his lungs. This tragic story echoes the post above, about avoidance being so much more important than relying on any medication to "save" our children or ourselves.

I'll try to find the link to the above story and post it later.

Carolyn

On Jan 14, 2002

Thanks skanb, Carolyn, and Boone. It`s great to see confirmation that I will be doing the right thing to give my daughter Epi right away if she has a reaction. Clearly it is extrememly helpful in preventing death. The study I read regarding 32 deaths from anaphylaxis showed that in every case Epi was given too late or not at all. That is the reason that when my daughter had her egg reaction I used it right away. Since then (four years ago) more and more evidence comes out about the importance of using Epi right away. It is interesting that in the study above, although there was a death, it wasn`t as a result of using Epi, it was simply that the Epi didn`t work.

On Jan 14, 2002

Carefulmom, is it my imagination or are you just a tad hostile?

My apologies if the information I provided seems threatening in some way, and again, I certainly didn't mean to imply that you should not give an Epi promptly.

As I've pointed out before though, not all of us have cookie-cutter situations. I guess I'm a little tired of posting from the perspective of multiple allergies and idiopathic anaphylaxis and always feeling like there's lingering judgements from other posters that my son has so many reactions because I'm not careful enough...or that the path my doctor and I have chosen is neglectful in some way.

For any of you out there who fit this pattern of posting, it's not a contest. Much as we all might like to think otherwise, some of these decisions are not black and white. We all deal with different issues and it would be nice to be able to receive support regardless of what specific issues we deal with, even if they don't fit the "comfortable" pattern.

I suspect that perhaps this board is not the appropriate forum for parents with these issues. Thanks to all who provided feedback. If there are moms out there who have children with multiple allergies or idiopathic anaphylaxis who can suggest a better forum, I'd appreciate any information.

On Jan 14, 2002

Definitely your imagination. Not sure where you are coming up with that. I always have been and continue to be convinced that if my daughter with multiple food allergies has a reaction, I will be very comfortable with using Epi right away. So sorry if that bothers you for some reason.

On Jan 14, 2002

booandbrimom,

I just wanted to jump in here and say that I totally understand and agree where you're coming from with the "cookie cutter" statement. So true.

For my son (and probably everyone else on and off this board), if we KNOW there has been ingestion, we won't even wait for symptoms to show up - we'll Epi immediately.

However, there are those times when you just don't know what exactly is going on. When you find out for sure, you act immediately. When you realize that a 'reaction' MAY really be happening, you act accordingly. It's all a judgement call - that's why it's so scary.

It sure would be nice if it was black and white, wouldn't it? Unfortunately, it's not all the time.

I don't really understand what you're dealing with re: multiple food allergies - my son is only PA/TNA. And as far as the biphasic reaction question goes, the only thing I can say is (and I know you know this) the earlier treatment is given, the better the chance of the reaction being reversed/stopped. Again, not an easy thing in highly questionable situations.

Just wanted to say I agree with you, booandbrimom.

[This message has been edited by Lam (edited January 14, 2002).]

On Jan 14, 2002

Doctors go to medical school to learn how to diagnose and treat disease. You would think this would be an exact science, but it is not. Doctors themselves cannot agree on the symptoms which define anaphylaxis, so it is obviously subjective, not definitive.

Having said that, if doctors cannot agree on what constitutes anaphylaxis, who are we to "judge" each other's situations/reactions? Totally agree on the "cookie cutter" theory. Sorry that you felt judged in other threads/posts, booandbrimom. I didn't realize you felt that way (I guess I haven't seen it). Let's hope it was unintentional, because you're right - this is a place for support where people shouldn't feel driven away (like you do). Stay!

Carolyn

On Jan 14, 2002

Well, I have been reading these boards for awhile, and have decided it is time to say something. Booandbrimom, why do you keep jumping all over careful mom? It is her right to do what she has to do to keep her child safe. It seems like you have a problem with that. I have two kids with multiple food allergies, and if I suspect one is having a reaction, I won`t hesitate to use adrenaline (Epinephrine).

On Jan 14, 2002

Proper Netiquette dictates that longtime lurkers [b]not[/b] use their first post to read the riot act to a longtime poster.

On Jan 14, 2002

"The riot act"? I thought this was a forum for expressing opinions. I didn`t realize first time posters aren`t allowed to have any opinions. Guess I should have had my brother write the post. He has been posting on these boards for a long time and had the same reaction I did to booandbrimom jumping all over careful mom for wanting to keep her child safe.

On Jan 14, 2002

I doubt booandbrimom has any problem with Carefulmom wanting to keep her child safe. That's just not even a possibility, I'm sure. We're all in the same boat here, and we all agree that safety is foremost in all our minds... we just go about it in different ways.

No 'tone' intended in my post, BTW.

On Jan 14, 2002

Wow, didn`t mean to start such a huge controversy here! Booandbrimom, sorry I offended you even though I`m still not quite sure how I did. I think most reactions are not "cookie cutter"--you just have to decide in the moment if you think your child is having a reaction or not. In my case, it wasn`t at all clear cut, because my daughter had been skin tested to egg three days before and it was negative. So three days later when I gave her egg and a few minutes later she developed hives and swelling around her eyes, I was pretty incredulous thinking, "Well, this looks like a reaction, but she isn`t supposed to be allergic to egg, so how can it be." But I told myself if it looks like a reaction I better assume it is. I`d rather use the Epi and find out out later it wasn`t a reaction than have the reverse be true ---not use the Epi and find out later it was a reaction. Booandbrimom, maybe you should call your doctor and ask him about the movie theater incident and ask him what you should have done? Was it the ER doctor who said "watch and wait" or your regular doctor? "Watch and wait" doesn`t seem very clear for something that is so life threatening? Granted the next possible reaction may look different, but at least you could get an idea of how much symptoms or how specific the symptoms he wants you to see before using it. If I think it looks like a reaction, even if I can`t identify the source, I would use it. Sometimes you don`t figure out the source until later or maybe never, yet in the moment you have to make a fairly quick decision. Personally, the one time I was very unclear about whether or not it was a reaction I did not use Benadryl. I was ready with the Epi if I saw one more symptom, but I would never use just Benadryl. I do see many posts on these boards of people who are unsure if it is a reaction or not and use Benadryl, but to me it just clouds the issue. I am too concerned that it will mask some of the symptoms, so that I will be even more unclear if it is a reaction or not. My daughter`s allergist says with Benadryl, some of the symptoms can get better and others not. Then it is even more unclear what is going on. My daugher`s allergist says either use Epi and antihistamine or don`t use either one. However, my daughter is very high risk; the instructions could be different if my daughter were lower risk.

[This message has been edited by Carefulmom (edited January 14, 2002).]

On Jan 15, 2002

Carefulmom, no problem and you didn't offend me...I was just confused as to why I kept answering your question and your acknowledgements seemed to so pointedly ignore my input. As someone said further up this thread, I certainly have no reason to wish harm on anyone's child! If the info's not helpful, not a problem.

Dad of 3, I'm not sure where you're coming from but if you want to let me know what I said that was offensive I'll certainly listen to feedback.

Perhaps as Cayley's mom said in another thread I'm just back to the "information overload" stage and I need to step back again. Please keep in mind that we just had a hospital trip Sunday and that's a little unnerving.

And Carefulmom, it was our regular doctor who's given us the direction to watch and wait until there's further involvement than just a stomach ache or itchy throat. I don't know why my situation seems so different from the majority of the people on this board...maybe it's because my son is sensitive to a number of foods, maybe because he's older and has started to deal with his own fears, maybe because we don't have any hive tip-offs any more... Whatever the reason, I seem to be defensive about this stuff.

A basic question though for parents of kids with multiple food allergies...how did you find out about the allergies without reactions? Here's a summary of the reactions we've had over the last seven years:

- First to formula - Second to formula (we didn't get it yet) - Third and BAD to formula - now we got it! - Fourth to peaches - Fifth to lentil baby food (really bad, but we confused with milk) - Sixth to lentils again - now we got it - Seventh at 1 1/2 to soy formula (very bad and biphasic - came back after a couple of hours with a vengeance) - Eighth to peanut butter - Ninth to peanut butter again (yes, we should have gotten it, but we were pretty clueless) - Tenth to split pea soup at the grocery store. We didn't know split peas were the same as lentils. We left our cart and the mess and just ran! Didn't shop there for some time. - Eleventh - this was a mystery reaction at the mall. It was memorable because Brian threw up in our SHOES (as well as everywhere else) in the FOOD COURT! Let's just say we were surrounded by shocked onlookers. - Twelth - this was our first accidental exposure. He picked up a milk sippy cup at his cousins and took a sip. The great thing about this reaction was that it made believers out of my husband's family. They are extremely consciencious about their cooking and very supportive.

There were a couple of random reactions in here between 2 and three to unlabeled soy vegetable proteins in soups. It took us a while to figure out the labelling issues. We also had a problem with some natural flavoring labels that were butter. All mild, thank goodness, but still scary.

- At three, we started doing a challenge test to milk at home on New Year's. I'm not sure why we did this or why we picked this date, but I remember we gave him a cookie the first time. Bad reaction.

- We did it again at four with a butter cream chocolate. BAD reaction - his nose swelled like a clown. At this point our doctor referred us to a pediatric allergic and told us to cut it out. He also referred us to FAAN (thank God) and I went to my first food conference. That was terrifying, but really helpful.

After this, things really started to hit the fan. We had another accidental exposure - this time to soy flour in bread. He's o.k. with soy oil and soy lecithin and the ingredient line wrapped...I thought there was a comma. This reaction was really frightening and this was the time the doctor said I screwed up by not giving the Epi-Pen. He had a very serious asthma attack that we treated with nebulized Albuterol.

So what are we on now...eighteen?

- Eighteen was a doozy. We went to a Kosher restaurant (we live in Chicago so we have some options) and clarified that the chicken fingers were milk-free. Kosher, right? He had a very mild reaction so we gave him Benedryl and my husband took him on to his cousin's house for a playdate. They live across the street from the hospital, so we weren't all that concerned.

Playdate goes fine, he falls asleep in the car on the way home. 3-4 hours after the start of the reaction, he wakes up with full-blown anaphylaxis. He has mucus pouring out of his nose and throat to the point that he can't breath. We were terrified, but didn't give the Epi because we didn't really understand that it would have helped this reaction too - we thought you saved it until they were having breathing problems or swelling. We took him to the hospital and they put in an IV Benedryl line and gave him Prednisone. In retrospect, doctor says I screwed up on this one too and should have given the Epi - now I know.

Right around this time (4 1/2) he started developing new allergies, so reactions 19 through about 25 were related to those. We found out about fish because he loved tuna on crackers - we called diligently to ensure the tuna we were using didn't contain casein (which it didn't). Turns out he tested positive to both tuna and "fish mix" on the CAP RAST. Same with beans and peas - ate them with no problems as a small child but gradually developed an allergy. This extended to chickpeas (restaurant salad bar reaction) and beans (baked bean reaction at my brother's house), at which point we threw up our hands and took all lentils and legumes off the list of acceptable.

To be honest, I don't even remember what he reacted to last year, but he had a bad one where I used the Epi-Pen. The doctor at the ER said his breathing was not compromised and our allergist said that this one was a judgement call - he probably would have been fine without the Epi. We've since had lots of "mini" reactions. Our allergist started to suspect idiopathic anaphylaxis at this point. There's no real way to tell if this is the case but it would explain the "mystery" reactions. We're extremely careful with all labels and cross-contamination can't explain everything.

Anyway, this was a very lengthy peak into our life. I get very defensive I suppose because it seems like the majority of people on this board have dealt with only one reaction. While we're blessed in that my son has never progressed to needing life support, we basically deal with the possibility of "moderate" anaphylaxis 24/7.

When the new allergies/idiopathic stuff started to develop, our allergist referred us within his practice to Sai Nimmagadda. He's apparently one of two top pediatric allergists in the Chicago area (the other one people see is down at Children's in the city). As I've said before, he's comfortable with the watch and wait policy because we really can't give an Epi for the number of reactions we have to deal with. On the other hand, the clear/accidental exposures have been severe in some cases so we do have to be ready for those and try to distinguish.

I don't know why I felt the need for a novel today. Thanks for reading if you've stuck with me, and thanks again to all who offered support. I visit this board on and off as my stress level allows.

On Jan 15, 2002

What is "iratogenic" reaction? This is in the Allergy Watch excerpt quoted. Thx.

On Jan 15, 2002

Iatrogenic=caused by physicians, in other words, reactions to medications.

On Jan 15, 2002

Booandbrimom, I wish I could figure out a way to keep your post in my screen while I am typing my response, so I could refer to it while I am typing, so I could address each point, but I`ll do my best. What I am about to say is not intended as criticism but rather to talk about how I deal with multiple food allergies. I always feel that if I have something to say and I don`t and later someone`s child had a severe reaction, because I didn`t say something, I would feel partly responsible. So with that in mind, here are my thoughts.

My daughter age 6 and a half is allergic to seven or eight things, two of which are milk and egg, which are in lots of things. She also used to be allergic to soy, but outgrew it. She has only had one serious reaction in her life. The way I have done this is to practice very strict avoidance. She is not allowed to eat anything at all ever unless I have read the ingredients. If it has natural flavorings, I always call the company before letting her have it. Yes, it is a pain in the neck, as often it takes four or five phone calls. They act like they think I am a spy from another company. Often they will say it doesn`t contain any of the majoy eight allergens, but that isn`t good enough for me. I make them list what exactly is in the natural flavoring. I have to be very persistent, but again with so many food allergies you never know. The rule about not eating anything unless I have read the ingredients includes restaurants, where I bring all of her food. In a restaurant I don`t let her have it unless it has ingredients. This would mean maybe she can have a small bag of pretzels or potato chips or Raisin Bran, Frosted Flakes, etc., if the ingredients are on it. Some restaurants she can`t have anything. I know this seems very restrictive, but we have avoided reactions this way and with so many food allergies, we have to be so careful. The same is true at people`s houses. My dear sweet aunt and uncle, who knew she was allergic to milk, thought yogurt would be okay. So I require an ingedient list on anything that goes into her mouth anywhere, anytime, etc.

As far as how did we find out about her food allergies, here goes: Milk, drank cow formula at age 17 days, got two or three hives. Gave it again a few hours later, same reaction. Never gave it again. Later was skin tested, very positive. Egg: gave it for the first time age two and a half, got hives, swelling around the eyes, used Epipen. Never gave it again. Peanuts: Had a positive skin test and extremely high CapRast test which were done due to other food allergies. Has never eaten a peanut other than in my breast milk, has never eaten a may contain. Had one possible reaction, when I ate a may contain and put her straw in her juice box without washing my hands before she was known to be PA. I saw that as a warning sign that I needed to be more careful about hand washing. Since then, I always wash my hands after eating, even if I am at work. Tree nuts: not actually allergic, but not allowed to have due to high risk with her other food allergies. Has never had a tree nut or a may contain. Sweet potatoes: age seven months, hives, has never had it since. Cranberries: age twelve months, hives, has never had it since. Gelatin: age four, rash, not actually hives, with her history I decided to avoid it anyhow. Mango: not allowed to have it because I am allergic to it so it seems high risk. Kiwi: same Avocado: same Shellfish: same as tree nuts.

So that is my story. I know it sounds very restrictive, but I find it much LESS stressful to just avoid rather than to have these possible reactions, where I am not sure if it is or isn`t, don`t know whether to use Epi, go to the ER, etc. And I really don`t want to sound at all judgmental--this just works for me. I still have to worry about someone at school eating a peanut butter sandwich for breakfast and holding her hand, but this really decreases the number of things I have to worry about. All this avoidance really decreases all these unclear possible reactions and makes my life easier. And it has become a way of life, so that I almost don`t think about it when we go to a restaurant or someone`s house. Hope you find this helpful; while inconvenient, I really do believe it makes my life easier by iliminating some of the fear, decreasing ER visits, etc.

On Jan 15, 2002

I'm not sure what makes you think we don't do all these things...once again, I feel like the implication is that I'm not careful enough.

We read EVERY label. We call on anything that's remotely questionable. We bring all food with us everywhere. We reserve hotels with kitchens on vacations. We trust only two dishes at two restaurants when eating out.

Perhaps I don't get the award for "quickest mom to figure out allergies" or for "mom who took them most seriously from the start" but I'm certainly not casual in any way about them now. If you look back at my son's history, we've had 3 mistakes since knowing about an allergen - one in a restaurant, one at his cousin's and one where I read a label wrong.

On Jan 15, 2002

booandbrimom- I think I understand your question and concern. It actually scares me to think about it. I have a multiple allergy son and I understand what you are saying about mild reactions. The "epi at any slight sign of a reaction" policy may be absolutely the correct course of action for some, but not for others. My son has had so many slight reactions-red face or ears, rash, hives on hands, sudden runny nose, or stomach ache (things that wouldn't alarm anyone else, but I have come to notice them immediately)- and also servere reactions when I did administer the epi and went to er. Almost every time he has a mild reaction I have no idea what it is from. He is a very picky eater with a limited diet, we do not have peanut products in the house, I am an avid label reader, and careful in other ways. Yet he does have mild "mystery" reactions for which I give him benedryl to relieve the symptoms and watch him. I think for some children the "epi at any slight sign of a reaction" policy would mean they would be shot and in the er constantly. However we have been fortunate in that a second severe reaction has never happened to him. When he went to the er he took prednisone to help prevent a second severe reaction. I guess I assumed a second severe reaction only followed a first severe reaction, not a first mild reaction. That's scary. I guess I empathize with you, but I'm not really helping you, sorry. I think your question was "will giving an epi for a first mild reaction help prevent a second severe reaction?" It sounds like consensus is no. So what can you do? Go to the er for every slight reaction? I guess that's the safe way, but again, one could find themselves living at the er. It doesn't sound like there's an easy answer to this question. I'll ask my allergist what he thinks. We're going soon. To people fearful of using the epi who never have(I was terrified of using before I actually did)-I'd just like to say, it's not that bad. If you think your kid might need it, use it, don't wait. It helps me to think about all those immunizations kids get-it's no worse than that. And I'm a big wimp. booandbrimom-sorry, none of my son's reactions have started mild and got worse later on. the mild ones went away, and the severe ones were severe immediately. I think skanb is the only responder discussing a second severe reaction and he/she didn't give the epi at the first reaction (I'm not saying he/she should have). Would it have helped to have the epi the first time? Probably would have helped to have prednisone, but you don't want your kid on steroids constantly. I'll let you know if I learn more. Please do likewise.

On Jan 15, 2002

Since the EpiPen is relatively short-acting (ie. wears off after, say, 20 minutes) wouldn't it be logical to assume that its administration (or lack thereof) would have no effect on a biphasic reaction? Or, is there enough residual adrenaline in the blood stream hours later to minimize a second reaction? I have read that when an Epi is administered the biphasic reaction doesn't tend to be a severe one BUT the same article says that ANY biphasic reaction tends to be milder than the initial severe attack - the opposite of your situation, booandbrimom. I believe this info is in that rather lengthy article I posted the link to on page 1 of this thread.

In my personal, non-medical opinion (for what THAT'S worth, LOL) I would have to say that in this multiple-allergy, idopathic anaphylaxis case, giving an EpiPen at the first sign of a hive, just because a biphasic reaction MAY happen and MAY be severe, might lead to adrenaline complications due to the sheer frequency at which it's administered. Or would it? Have you asked the allergist/doctor/ped of the ramifications of administering the EpiPen, say, 40 times a year? Does this almost certainly put your child at a higher risk for arrythmia and other complications, or is it within safety levels?

Carolyn

On Jan 15, 2002

Carolyn,

I thought the (what I call) "bounce back" reactions were faster, and more severe.

If you find info to the contrary, do post it!

Thanks, Tammy

On Jan 15, 2002

Hi Lam - Here's a quote from the article I mentioned above:

"Corticosteroids -- These agents have a role in reversing bronchospasm and cutaneous effects of anaphylaxis. Corticosteroids have a delayed onset of action and do not reverse the cardiovascular effects of anaphylaxis. These agents should be used in severe reactions, but the use of epinephrine and H1 antihistamines has a higher priority. Some authors state that corticosteroids help prevent or ameliorate recurrent (biphasic) anaphylaxis, but the true incidence of this condition has not been determined, and recurrences are usually less severe than the initial attack."

This excerpt is near the bottom of the article. Hope this helps!

Carolyn

On Jan 15, 2002

booandbrimom, you commented that some of the parents on these boards have only dealt with one reaction, but I think that is partly because some of them use different guidelines than you. Carefulmom says she doesn`t give restaurant food or let her child eat food at relatives and then you are saying you have only had three reactions since becoming so careful about reading labels, etc., but one was in a restaurant and one was at the cousins. Some of us don`t have reactions at the relatives or in restaurants because we don`t let our kids eat that food. You asked what parents of multiple food allergic kids do. I don`t let either of my PA kids (one is also allergic to egg, wheat, and tree nuts) eat at salad bars. I took a five minute look at a salad bar when my first kid became PA, and watched people take the spoon out of the cole slaw and into the Chinese chicken salad. It hit me that you never know where that serving spoon has been. So for example your child`s reaction that was at a salad bar (I think you said chickpeas) could have been to chickpeas or maybe the spoon had been somewhere else first. Any other food at that salad bar could have caused it depending on where that spoon was before you got there. Anyhow, we all have to find our own comfort level, but it did seem from your posts that you are not comfortable with the number of definite reactions or possible reactions you are having, so I have to say that only eating two foods in restaurants is two more than some of us parents of multiple food allergic kids allow. If you are satisfied with having a reaction at a restaurant or at a cousin`s then you don`t need to change anything, but it doesn`t sound like you are. I am not judging you, only saying I think you could make your own life easier by cutting out these things.

On Jan 16, 2002

((sigh)) Dad of 3, the reaction at his cousins was an accident. He picked up a sippy cup.

The reaction at the restaurant was with something declared Kosher that the manager thought was safe and should have been safe.

The chickpea thing was before we knew he was allergic to chickpeas.

As I said before, we only eat at two restaurants, there are two dishes we allow and we check EVERY TIME. This is the level of risk I'm comfortable with.

I am not "uncomfortable" with the number of reactions my son is having because I KNOW I've done and am doing everything possible. Again, the implication here is that I'm doing something wrong and that's why my child is having such trouble. There were some other posters in this thread whose experience seems more similar to mine which I was glad to hear.

I'm really not trying to be difficult here, but this thread has really bothered me a lot. I'd really like to know what you think was wrong with my other posts and honestly, why you don't seem to be able to believe that a child could have this situation without the parent being careless.

On Jan 16, 2002

A couple of other follow-ups...

Nonutshere, we have started keeping Prednisone in the refrigerator on a constant basis now per our doctor. It does seem to be the Prednisone that can mediate the second reaction. However, we don't give this unless a) the first reaction is serious and/or b) we KNOW for sure he's ingested something to which he's allergic.

Carolyn, the answer on the Epi 40 times a year has multiple answers. First, there is a danger (although rare) from the drug itself. Obviously the danger is multiplied the more often you give it.

Second, you can become "resistant" to epinephrine for lack of a better word. While that's not a concern with a couple times a year administration, it's a problem if you're giving it 40 times!

Third, we want to make sure we're not overreacting. It's really easy to get psyched out by food allergies and become the crazy, hyper mom... My husband and I have a deal that we "check" each other with regard to the administration of epinephrine and trips to the hospital. We also have an absolute rule that both we and our doctors are comfortable with, which is that if there's a known exposure, we Epi. If the exposure isn't known and there's respiratory symptoms or facial swelling, we Epi. Worst case we're giving it unnecessarily for an asthma attack, and that would probably only help the asthma.

By the way, one of my absolute rules is that, if I do "overreact", NOBODY gets to say "I told you so." [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Seriously, it's important that I feel comfortable with the level of medical care, so I'd rather take a trip to the hospital (like Sunday) to be safe than to be sorry.

Otherwise we do take a watch and wait on the "borderline" ones. I remember the study they did with baked goods where 30% of them contained undisclosed peanuts (with no 'may contain' label)...I'm surprised that there aren't more mystery reactions posted about on this board. My son eats very little that's prepackaged since his milk allergy knocks out 95% of the options, but for kids with just a peanut allergy I'd be hyper that virtually everything could be a cross-contamination risk! I guess it depends on the threshold of your child's allergy.

Again (for like the fifth time I think), PLEASE will no one read into this that I'm recommending not giving an Epi when a child has a reaction. My situation seems to be somewhat different from many other parents and you have to take your own circumstances and doctor's advice into account.

On Jan 16, 2002

Booandbrinamom, I see that you are from the Chicagoland area. We have a 17 month old PA child and just relocated to Northern Indiana. I am looking for a really good pediatric allergist. Can you make any recommendations? Lisa

Quote:

Originally posted by boobrinamom: [b]Carefulmom, here's a source that does include a brief paragraph on serious side effects of epinephrine:

[url="http://content.health.msn.com/drug_article/article/4046.1248?bn=Adrenalin"]http://content.health.msn.com/drug_article/article/4046.1248?bn=Adrenalin[/url]

If you're really concerned about this, perhaps you should discuss with your doctor or pharmacist...although the risk seems to be very small.

Here's a reference on sudden cardiac death:

[url="http://my.webmd.com/content/article/1675.51121"]http://my.webmd.com/content/article/1675.51121[/url]

"A sudden infusion of certain chemicals or hormones into the bloodstream can also disturb heart rate. Many drugs, including caffeine, nicotine, alcohol, cocaine, and inhaled aerosol propellants, can cause heart rate to race or become otherwise irregular. The same may occur in response to conditions that boost adrenaline (also known as epinephrine), such as shock, fright, and anxiety."

While you're right that many people do have underlying heart disease, with others there's no cause discovered. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

[This message has been edited by boobrinamom (edited January 12, 2002).]

[This message has been edited by boobrinamom (edited January 12, 2002).][/b]

On Jan 16, 2002

Lisa, here's the doctor at Children's that half of my food allergy group sees:

[url="http://www.childrensmemorial.org/findadoc/bio.asp?UID=170"]http://www.childrensmemorial.org/findadoc/bio.asp?UID=170[/url]

This is our doctor, but I think he's too far north for you:

[url="http://www.childrensmemorial.org/findadoc/bio.asp?UID=356"]http://www.childrensmemorial.org/findadoc/bio.asp?UID=356[/url]

If you can't drive to Children's in the city, I would call their number and explain the situation or ask to talk with Dr. Pomgracie - they can recommend someone knowledgeable on the south side. Good luck!

On Jan 16, 2002

[quote]Originally posted by boobrinamom: [B]((sigh)) "Dad of 3, the reaction at his cousins was an accident. He picked up a sippy cup."

ALL reactions are accidents. None are intentional. People don`t intentionally give their children foods they are allergic to.

"The reaction at the restaurant was with something declared Kosher that the manager thought was safe and should have been safe."

Almost all reactions at restaurants are because someone was told something was safe. Again that is why we don`t give our PA kids restaurant food.

"The chickpea thing was before we knew he was allergic to chickpeas."

Again who knows if it was chickpeas or any of the other places the spoon at the salad bar may have been.

"As I said before, we only eat at two restaurants, there are two dishes we allow and we check EVERY TIME. This is the level of risk I'm comfortable with."

The people who have reactions in restaurants also check every time.

I didn`t say anything was wrong with your other posts. You asked a question about parents of children with multiple food allergies and I answered. If you are comfortable with the number of reactions you are having, then great. However, some of them could be avoided. It sounded from your earlier posts like you would like to decrease the number of reactions or possible reactions. Apparently not.

[This message has been edited by dad of three (edited January 16, 2002).]

On Jan 16, 2002

booandbrimom-For what it's worth, I don't see anything wrong with your posts. And I don't think you should be made to feel bad about the "mistakes"(if they should even be called that). We all know that even though we try really hard to be careful, exposures may happen. If it is so easy to avoid exposure, why do we all bother to carry benedryl and epi-pens?

On Jan 16, 2002

1/17: Dad of 3, I'm deleting the original post that was here because I don't think it served any purpose. I think we have enough hassles to not beat up on each other and I don't want to be guilty of that.

[This message has been edited by booandbrimom (edited January 17, 2002).]

On Jan 16, 2002

Thank you, nonuts. I appreciate the support.

[This message has been edited by booandbrimom (edited January 17, 2002).]

On Jan 16, 2002

Hey I'm not pointing any fingers at anyone here but I think we all need a little sunshine. P.S.-BooandBrimom, I value your opinions and everyone elses here and don't get upset over this one, save it for something more important!

[This message has been edited by smack (edited January 16, 2002).]

On Jan 16, 2002

Dad of 3, that is a really good point about salad bars. Although I don`t allow my daughter to eat restaurant food, there are salad bars in grocery stores. I`ll never forget the day, that I looked at a bin in a salad bar that had only cantaloupe, and scooped some up for my daughter then 5 years old. While I was sitting there, she said,"Mom, there are two white things in here. Are they okay to eat?" I looked at her plate of cantaloupe and there were two very tiny kernels of cottage cheese. Since she is allergic to milk, it made the cantaloupe unsafe. I felt so badly that my five year old noticed it and I didn`t! That really got me thinking about spoon-sharing at salad bars, because at this one the cottage cheese was in the very next bin. Customers seem to spoon share a lot at salad bars! Anyhow, I haven`t let her do any since. One of the PA kids in her school who is not allergic to anything else, had a reaction at a salad bar from tuna salad. In the next bin was a salad with peanuts. Spoon sharing again.

On Jan 16, 2002

You are so right about salad bars!!! My son ended up in the ICU because of one. He was two and three quarters and we gave him some hard boiled egg from a salad bar. He had had egg a zillion times before. He went into anaphylaxis. He didn`t have an Epipen, because he didn`t have any known food allergies. Anyhow, fortunately he lived, and we figured he was allergic to egg. We didn`t give peanuts until age three as advised, and he went into anaphylaxis again. This time we had an Epipen. When he was tested, it turned out he was not allergic to egg, only peanuts. The egg reaction was at a salad bar, and yes, the peanuts were about two bins away, and the egg was cross-contaminated. The restaurant manager said that customers always mix the serving utensils, taking them out of one thing and putting them into others. That was three years ago, and of course we haven`t done a salad bar since.

I also don`t let my son eat at the relatives due to the cross contamination issue. They use one spoon to stir three different things. I guess if you don`t live with food allergies on a daily basis, it is just hard for the relatives to remember. At least mine. And of course, we still see the relatives, we just bring our sons food and don`t allow him to eat theirs. They are so used to it, they don`t even say anything about it anymore.

[This message has been edited by Marizona (edited January 17, 2002).]

On Jan 17, 2002

Editing this now that I've calmed down.

[This message has been edited by booandbrimom (edited January 17, 2002).]

On Jan 18, 2002

Well, I am certainly shocked to see the way this thread went downhill since I last looked at it. Booandbrimom: I ALWAYS value your posts and your information. You definitley got unfairly attacked here. I see a lot of reasons for what happened. First of all, I think you have way more information than most of the people who post. You have become an expert on anaphylaxis and on your son's allergies. I think that you were hoping for answers from a group of people who quite honestly know less than you do. (O.K., now I'm surely going to get jumped on, but I don't care!) I think that Cayley's Mom is in your league with the medical information and internet citings, etc. However, the rest of us are mostly not.

2nd: I think you hit a nerve, totally unintentionally, with careful mom. My interpretation is that you were quite rightly stating your fears about the over administering of the epi-pen, given that there is always SOME risk, and that giving it 40 times a year is obviously going to increase your son's risk. I think that carefulmom felt threatened that you were implying that other parents be cautious with the epi-pen, since that is against what her doctor has told her. None of us want to think of our kids having a problem with an epi-pen, when we believe that that is what can save their lives. You explained yourself over and over but it didn't seem to get through.

3) For anyone to think that your son getting a hold of another kid's sippee cup (in any situation!) was somehow due to you not being vigilant enough is just not thinking clearly.

4) I know, and you have made it quite clear on this thread, that you are super careful with what your son eats. That said, I want you to know that you had a major positive impact on my thinking, in another thread, where you discussed the idea that (and pardon me for totally mis-quoting you; I hope I am getting the gist of it right) if a parent is totally protective of everything a child eats, and every situation they participate in, they may be less likely to experience allergic reactions. However, that does not necessarily mean that this heavy duty restriction is always in the child's best interest. I have taken that to heart. We have always had a looser comfort zone than many on this board. It so happens that my daughter has never had a reaction due to the "laxness" of our comfort zone, (which I do realize allows me to continue to proceed as we have been, by the way.) I worry about other things with her besides just having a food induced allergic reaction. For example, I am more concerned that she grow up free from eating disorders and undue anxiety about food, rather than that she NEVER experiences a reaction. I want her to lead a healthy and fulfilling life. I could elaborate on all this, but I think I'll just stop here.

Again, I think you were looking for answers from a group who (for the most part) doesn't have the experience or the knowledge that you do. A group of the nation's top allergists could probably sit around discussing this issue for hours. I don't think they could (even) easily come up with a protocol for "this is exactly what you should do". Of course, being doctors they would probably try, and think they were right! [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Also, I apologize (in advance) for my defensiveness on the kosher issue, but I think I had asked you (on another board, way back when - when the incident occured) if the restaurant was truly kosher or just kosher style. Please forgive me if I'm wrong but I think you said it was kosher style. This does not excuse the manager's ignorance in any way, but I would like to point out (to everyone) that truly kosher meat products should not contain dairy.

All the best to you, and I hope that this miserable experience does not discourage you from actively participating on this board! I know I'm not the only one who really values your knowledge, experience, and clear, rational thinking!

Miriam

On Jan 18, 2002

booandbrimom:

Very interesting posts!!!Very interesting reading! I think we should write a book about all our experiences as parents dealing with severe-life threatening and/or multiple food allergies. I think it would prove to be a valuable resource that could help not just the newly diagnosed, but veteran food allergy parents ,as well as the general public.

With Chris's permission of course.

I have never given Tom an epi-pen injection. I have had some scares, but I've always been there with him and used Benadryl. BUT I would NEVER hesistate to use it if I felt it was necessary. I personally think when to use it is totally up to the individual parent.

In the past, some of Tom's suspicious reactions just have'nt gotten serious enough where I felt it necessary to use the epi-pen.

After leaving a playdate for the first time yesterday Tom started coughing, his cheeks turned red and once we were in our van he complained of an "itchy" mouth. But he could still breathe, and was even laughing at times, but I pulled the van aside, stopped and gave him Benadryl and when we got home I gave him his Albuterol inhaler. Then he was just fine. Believe me, I was ready to use my epi-pen if I needed it. I was even thinking instead of driving home, maybe I should be driving toward the Hospital if you know what I mean. But I felt comfortable doing what I did and it worked.

The only epi-pen injection he has had, was given to him in the ER, when he was 2 1/2 yrs old. He accidently injested a cashew at grandma's house a week after X-MAS. I'm embarrassed to admit this. But I would have given him the epi but I was going to the Pharmacist that day to get them refilled. A few days before this happened, like a DOPE, I gave his old ones to the pharmacist because they did'nt have any in stock, figureing that I could leave him at grandma's house and get them the next day. I know STUPID!! I figure nothing would happen there, then he went on and ate the cashew and started going into Anaphlaxis.

I will never let THAT happen ever again!!!!!

There I admitted it. Thanks in advance to anyone whose ever done something similiar.

To me it's a little bit like we have to be diagnosticians, generally most of us without any medical training have to access every reaction our children have and figure out what warrants our use of epi-pen or Benadryl.

Best Wishes TLSMOM

On Jan 18, 2002

Thanks you guys...I'm over my bad feelings on this one, and yes I agree - this is a very sensitive topic for lots of people. No one wants to make a decision that could result in the death of their child so it's easy to see why it's optimal to have an "absolute rule" to follow. I wish I was that lucky!!!!

TLS, seems like you did fine to me with Tom's reaction. What you described is what happens to us. And like you, there are times that I give the Benedryl and Albuterol and then drive to the hospital and sit there.

Oh, and Californiamom, I can't believe you remembered my original thread! but yes, it was a kosher-style deli. Also, it's totally possible that the chicken fingers were truly kosher and that there was soy flour and/or peanut flour in the breading...we asked about all ingredients but obviously something wasn't right. We just assumed it was milk because the initial reaction was so mild and his peanut/soy reactions have been so severe. I never called to check because I figured it didn't matter - we were never going to eat there again.

It's pretty daunting to write out all the reactions he's had (and the list didn't even cover them all - just the major ones). I'm sure I feel very insecure, and if I was an objective observer looking at our list I'd probably conclude that I was a negligent mom too. Hell, I'm the first to admit that I *was* until I "saw the light" at my first FAAN meeting!

Balance is key. I thought MKRuby's rules were just great. Actually, I passed them along to my mom who's a psychologist to integrate into a presentation she's giving on esteem issues in the school setting among children with differences (ADD, speech problems, etc.). I've asked her to come give it at our school when she's got it polished.

If this stuff were easy, we wouldn't need this support board. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Mar 8, 2002

My 20 month-old son also has multiple allergies - PA, TNA, eggs, and soy. He has had several reactions - mostly just hives. Most times, I give Benadryl only but I have used the Epi twice. Each time I used it was when the hives progressed really fast or when I noticed his face turning red and swelling around his eyes. (He also had an Epi at the doctor's office after an anaphalyxis reaction to his MMR shot, but that's another story.....)

I know what you all mean about not being black and white and always going by the seat of your pants - especially when the doctors all say something different about when to use the Epi. But here's something I found that works - when i notice a hive reaction now, I give Benadryl and take him to the ER. I sit with him in the waiting room of the ER and watch him there. That way, if it progresses, I check him into the ER. If it doesn't, we go home with the peace of mind that we were there just in case. Also, sometimes i have the nurse who is on call at the ER look at him and help me determine if he needs further treatment. Of course, on the way to the ER I bring his Epi and have someone in the car sitting next to him to monitor the progress. Also, the ER is only 5 minutes away from my house, so this might not work for everyone. But is certainly helps in those hard to tell situations when you're not sure if the hives will progress and don't want to wait at home.

BTW, he's had a biphasic reaction - the hives came back a lot worse once after the Epi wore off.

Hope this helps!

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