Talking Allergies

A family member who has anaphylaxis had a reaction last night requiring the epi, and we discovered that the local hospital is *not* that great at dealing with anaphylaxis. In fact, they were downright negligent.

My sister tried something she wasn't sure whether she would react to (goat cheese---she used to be able to have goat's milk, but hasn't had it for a long time + her milk allergy has gotten worse, and folks who are allergic to milk often react to goat's milk.) Instant mouth itchiness which quickly progressed to major throat itchiness + a feeling of swelling in the throat. (She is going to call the company to check if x-contamination could be an issue.)

I ended up giving her my epi (she only had a twin-ject on her and didn't know how to use it (!) I've never had one before, and in a crisis didn't want to be reading the instructions.) The first one didn't work. What are the chances of that happening? Fortunately, I always have 2 extras. The second one worked, and I gave the third to my sister in case the reaction got worse on the way to the hospital.

I *am* going to take the epi back to the pharmacy to see if I can get my $$ back. Have there been any recalls I haven't heard about? My sister definitely applied it with some force after it didn't work the first time. . .the poor woman kind of injured her leg the last time she tried.

My sister didn't want to call 9-1-1 and had my parents drive her to the hospital. She wasn't having difficulty breathing or anything, and the hospital is 10 minutes away. Plus she was armed with my one remaining epi. (I know, this should have been a 9-1-1 call. But my sister has never been given any specific instructions for dealing with an allergic reaction.)

When she got to the hospital, she had to wait for 45 minutes in the waiting room. *45 minutes!* There was someone off the street who was quite drunk that they dealt with before her. The man obviously needed attention, but I'm not sure that it was an emergency situation.

The nurse had actually written down additional symptoms which my sister did not claim to have---like breathing difficulties. (At the time, she asked my sister if her symptoms were about the same or getting worse. She couldn't tell, so we're guessing that the nurse wrote down additional symptoms so she would be seen faster. Who knows?)

When my sister finally saw the doctor, he was rather cavalier about it all . . . he looked at her chart and said "you were having breathing difficulties. How are you doing now?" My sister replied that her symptoms had subsided. "That's what we like to see," he said, "Patients solving their own problems." So. . . even if she were having breathing difficulties, I take it that they would have still made her wait.

The doctor didn't ask to see the used epipen to check that the medicine was administered properly. He didn't make her wait in the hospital in case of a biphasic reaction. At least he did examine her throat and her neck. And he gave her a new prescription for an epipen.

Is there an established protocol for dealing with anaphylaxis in the hospital? Aren't they supposed to see patients right away!?!?! Aren't they supposed to check to make sure that the medication has been administered properly?!? I guess the lesson here is always to call 9-1-1 (which one is supposed to do anyhow) because that way it is established as an emergency situation.

I feel entirely justified now in carrying 3 doses of adrenaline with me everywhere. The minimum one should have is 2 . . . and I think it is a good idea to have one additional back up.

We have only had one anaphylaxis reaction and I came to the hospital a bit later so I'm not sure what happened when they first got there. I do know from the asthma experience it is helpful to loudly state that the person is having an asthma episode and requires immediate help. The more you seem the know, the more they will let you tend to yourself as they look after others.
I think the Dr's reaction was intended to congratulate her on a job well done but I can see how it came across as cavalier. I would have asked the Dr about biphasic reactions and how long she should have stayed. That being said, you can simply stay at the hospital even after being discharged.
I don't think a 45 minute wait to be admitted is acceptable for an anaphylaxis reaction. That being said, we don't know what was happening with the drunk person but perhaps he was in more of a crisis than your sister and actually did require their attention.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

I'm not an expert on ERs, but I think you have to keep in mind is that they treat people based on symptoms. If your sister wasn't having breathing difficulties and she was not experiencing any immediate distress, I can sort of see why she wouldn't be seen right away.

It does seem strange that breathing difficulties were written on her chart and she wasn't seen straight away though. That's not acceptable. But I've heard of people whose kids are in severe distress when they arrive at the ER having to really make a fuss to be seen - it appears that you to be a squeaky wheel sometimes.

Obviously if her symptoms progressed she should have been seen ASAP, but I know of people in my support group who have actually arrived by ambulance to the ER, but since the child was okay by that point (having received an EpiPen at home) they too were just given the initial checkover by the triage nurse and then had to wait. Arriving by ambulance doesn't automatically move you up in the triage list - paramedics have told us that.

Based on some stories I've heard recently, I suspect that there is no national protocol for how to treat anaphylaxis in the ER...

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

When my son had his anaphylactic reaction last summer, I administered his Twinject in the car on the way to the hospital. By the time we arrived at the hospital (2 minutes later) his symptoms had totally subsided -- it's amazing how quickly epinephrine works!
Anyway, I went right up to the admitting nurse and told her that my son had an anaphylactic reaction and they put me right at the front of the line! We were walked right in after they weighed him, took his temperature and measured his oxygen levels (which were fantastic given that he had already had epinephrine). We didn't wait at all. The ER doctors/nurses were fantastic -- gave him more epinephrine, ventolin mask, and continued to monitor his breathing. After about 20 or so minutes they moved him over to the hallway in his bed, explained biphasic reactions to us and said that they wanted us to wait around for another hour or so. I couldn't have asked for anything better! I thought maybe this could have been because he was a child, but hearing your stories Karen, maybe not. Also the ER was hopping busy that night -- so it wasn't for lack of patients! I wasn't even a squeaky wheel -- but maybe she could read the panic on my face and that was enough?

That is awful! I had to bring my daughter in last year and she was whisked to the back and treated before I even got her health card out. The nurse told me that someone in anaphylaxis would automatically be admitted without delay.

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daughter: 6 years tree nuts, peanuts

After my sister's experience, I was concerned that I wouldn't get proper treatment in a similar situation. (It doesn't help that people in my home town have a tradition of viewing the local hospital as somewhere where one does *not* want to end up. Old views die hard, though . . . perhaps the hospital no longer deserves such a bad reputation. It is hard to say.)

If they clearly did not follow the proper protocol, I was considering going down there myself to ask them about how they deal with anaphylaxis. But if there are no medical guidelines for treatment, what is the point?

Karen wrote:


That's what I was afraid of . . . *maybe* the man who was seen before my sister was having an acute medical emergency. He could have been suffering from alcohol poisoning or something. But I kind of suspect that people with visible symptoms are considered to be in more need of medical care than those who just report throat itchiness and internal swelling. (And my sister's symptoms only subsided after sitting in the waiting room for a period of time---when she checked in, her throat wasn't any better.) I suspect that in some cases "anaphylaxis" isn't seen as a medical emergency unless the person is having *major* breathing difficulties and has a really swollen face.

Susan wrote:

I think the Dr. was just making a joke to be friendly . . .my sister said that he generally seemed like a nice person. But his comment was one of many indications that the nurses and dr.'s in that ER don't see anaphylaxis (without visible symptoms) as a potential medical emergency. The point of my rolling eyes icon was that patients aren't supposed to take care of themselves . . .if they have symptoms in spite of taking epinephrine, someone should examine them promptly.

I have major issues with this type of situation because of a really bad experience with a supposedly good hospital years ago. I've never had a good experience where anaphylaxis management is concerned, but this one was grounds for a lawsuit, I would say.

My worst allergic reaction occurred while we were in Toronto for a family gathering way back when I was in highschool. I majorly delayed going to the hospital . . . didn't think I needed to unless I was in respiratory distress or unless there was visible swelling. Nausea, throat itchiness, involuntary gagging, a really weird feeling of disconnect---not significant enough symptoms according to my understanding then. I didn't carry an epipen, and no doctor had ever mentioned the word "anaphylaxis" to me although it was known through allergy testing that I had severe allergies, and any doctor who enquired about my symptoms would have known that I had had anaphylactic reactions.

Anyhow, when my breathing difficulties got worse, I asked my father to drive me to the hospital. We went to the Toronto General. I honestly thought there was a possibility I wouldn't make it because of the breathing difficulties. So when we got there, the receptionist did *not* take us right away. She decided to fill out the paper work first while I stand there gasping for breath. When she asked me my age (I was 15), she told us that I was too young to be treated at the Toronto General--I should have gone to Sick Kids. She suggested my dad and me walk across the street My dad started arguing with her, but a nurse who was nearby just grabbed a wheelchair, stuck me in it, and literally ran me to Sick Kids. I'm not sure when my face started swelling exactly, but I did start to feel like my eyes were puffy before I reached Sick Kids, and when I caught a glimpse of my face in the mirror long after my breathing had stabilized, it was quite the shock.

I ended up needing two doses of adrenaline to get the reaction under control + I was on oxygen + hooked up to an I.V. The doctors at Sick Kids were livid. They suggested my parents lay a formal complaint--I wish they had, but they didn't. It takes a lot to turn us into "squeaky wheels." (I'm a bit more "squeaky" on the internet than I am in real life )

Ethansmom and gem, it is encouraging to hear that at least *some* hospitals in Ontario have a clear protocol for dealing with anaphylaxis! (I would imagine the Toronto General would have one by now, too. at least that is what I would hope . . .)

Sorry to hear about your experience Helen, and you're right, it is pretty scary to think of the worst-case scenario and not getting the help you need.

Just thought I'd throw in my 2 cents - I've been helped in 2 places in Southern Ontario, and one in Paris, France - always immediate attention, and in two of the cases I didn't even need an epi - just nausea and hives in my mouth, but they always took it very seriously and I had to stick around for at least two hours afterwards. In France I actually had to just dump out my inhalers, 2 epis and benadryl on the emergency counter and hold my hands around my throat in the choking motion!! Hey - got the message across!

I think you're right to have concerns - we all know how quickly things can change during an allergic reaction (good or bad) and I think all cases should be taken extremely seriously, regardless of who else is in the waiting room (how many beds are in emerg? Come on!)

Helen,

I'm sorry to hear about your family member's experience. You've really raised some interesting (and alarming!) discussion points.

I thought I would share our son's emergency experiences, because this now really makes me wonder about the management of anaphylactic events in an emergency setting. Our son has had 4 major allergic/anaphylactic events requiring emergency treatment, including administering of the Epipen during his last major episode (September 2005). Ironically, our son was seen IMMEDIATELY in the first 3 cases - without even checking his medical health card. He was literally whisked into the emergency room unit and was seen by a doctor immediately and given appropriate care immediately. However, with the final episode, after it was necessary for me to administer the Epipen and call 9-1-1, our son was NOT seen immediately and we had to wait in the waiting area!!! By the way, this fourth episode emergency treatment took place at the same hospital as his first episode, so I know how they reacted in the past. I should also add that our son was too frightened to ride in the ambulance, so the ambulance followed us to the hospital and escorted us in. Typically, I think when someone arrives to the hospital in an ambulance, they are seen immediately, but this was not exactly our scenario.

I'm now wondering, if the Epipen has been administered, and individuals no longer exhibit allergic symptoms (at least for the moment), are they no longer considered top priority in the hospital? I wonder if there is anyone on this chat forum who can answer that question. When we were waiting in the waiting area, I didn't feel really upset because I felt we were in the best place if his allergic reaction required immediate care, so I guess I just didn't question it - until now. Once our son was brought into the emergency unit, he was observed for several hours and given prednazone (spelling???). He did not require another dose of epinephrine.

However, I would NEVER hesitate to use the Epipen if our son needed it again. I would do exactly the same thing as last time, and make sure he was at the hospital. Even if you're in the waiting area and appearing ABSOLUTELY normal (because that's exactly what my son looked like - absolutely normal, healthy and even PLAYING!!! (it's amazing how quickly the epinephrine goes to work!)). But I would be very interested to learn how emergency situations are assessed.

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

Julie,
I have often wondered how my daughter would react in a situation where she needed to go to the hospital in an ambulance. I think she would be upset like your son. Knowing her, I think she would be terrified to be with strangers and it would cause her distress and thus more strain on her body during a reaction. I guess I need to talk to her about this situation more to reassure her in advance. Are parents ever allowed to travel in an ambulance? Does anyone know?
Kate

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies

lin101, That's great to hear that you've received prompt treatment. I had to laugh, though, when reading about your form of sign language . . quick thinking! (When laughing, I was assuming that you had to resort to the hands-around-the-throat signal because you aren't fluent in French not because your reaction was so bad you couldn't speak.)

Interesting, Julie that your experience was so different when the epipen was administered. It *would* be good to get some insider info. on how allergic reactions are treated in hospital.

I had a similar experience while living in Toronto when I was taken by ambulance to Women's College hospital---I had taken the epi, and had no symptoms upon arrival. The ambulance attendant was actually annoyed at how long it took---for some reason he had to wait around until they filled out the paper work. I think I was admitted faster because he complained. Then I had to sit alone (definitely not under observation) for what seemed like a long period of time on a bed in a curtained off area (I should have asked them to let my sister who was with me at the time accompany me . . .but everything was so hectic there that I didn't, and we got separated.)

In Ottawa, paramedics who did a presentation to our support group told us the following:

1. Parents are allowed to go in the ambulance with the chlld. (They know it can be a frightening experience for a child, and they don't want to make it any more frightening!)

We even asked what we would do if we were home alone with several children, and I believe the answer was, we'd just have to bring all the children. I know of one member who went in the ambulance with both her children when her DD anaphylaxed.

If you are really concerned, contact your local paramedics to confirm.

2. Everyone who arrives at the ER is seen by a triage nurse - whether you walk in or come by ambulance. If your symptoms indicate that you need immediate assistance, you'll get immediate assistance. If your symptoms don't warrant immediate assistance, you won't get immediate assistance. They were pretty factual about that. As to defining what requires immediate assistance... you'd have to talk to your local ER about that.

I definitely get the feeling that things are done differently depending on the ER in question. (To put it mildly.)

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

One really good way to get children use to the ambulance/ fire trucks, paramedics and firefighters is to take them for a tour of the ambulance/fire stations. Have the paramedics show what they will do in when a reaction occurs. Also let the children get use to the equipment, so if they do need an ambulance it won't be totally unfamiliar.

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Anaphylactic to; fowl, fish and tree nuts
Idiopathic Anaphylaxis

Firemt,

That's a great idea to go for a tour!

I wanted to add that I WAS permitted to ride in the ambulance with my son, but my son was still WAY too frightened - he wouldn't even get in (he was only 3.5 yrs old at the time, plus he'd just received the Epipen from me, so he wasn't in the best shape.) The ambulance attendants suggested we drive in our own vehicle with the ambulance following immediately behind. I was very grateful to have this option available to us, and so was my son! I'm not sure if this option is typically available, but it worked well for us, and I was very comforted to know the ambulance was right behind us.

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

We have amazing paramedics here in Ottawa, and they did a "What happens when you dial 911?" meeting for the kids in our group a year ago last October that was awesome. They did a presentation with all their equipment (three different presentations to three different age groups), wore their uniforms so kids could know that they look like when they're working, made sure all the kids got an inside tour of the ambulance ... I can't say enough good things about them.

We hope to do another such event, hopefully before summer, this time at the beautiful new Ottawa Paramedics HQ. The kids will get a tour of the facilities and a review of "what happens when you dial 911".

Anyway, I would definitely contact your local paramedics to see about a tour. I have been so impressed by the professionalism of our local paramedics and by their interest in the community, and I'm sure those in other communities are similar.

If you need contact info, maybe start at http://www.ontarioparamedic.ca/chapters.html .

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

Thank you for the information. I will have to contact our local paramedics and find out about local protocols. A tour is an excellent idea also! My daughter's class is learning about community helpers maybe I could arrange a tour for her class.
Kate

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11 year old daughter -- lives with life-threatening allergies to milk, eggs and peanuts; seasonal allergies (birch, maple, ragweed); pet allergies; asthma; and eczema
9 year old son - no allergies