Talking Allergies

When Ethan had his second reaction to peanuts (accidental ingestion at a time when we were still unaware of the seriousness of the situation) he developed hives around his mouth and then became wheezy. I gave him Benedryl and when that didn't seem to help, we took him to the ER (thank goodness I had enough sense to do that!). When we got to the ER and explained that we had suspected he had a peanut allergy and what his symptoms were, we ended up waiting approximately 3 hours to be seen by a doctor. When the ER doctor finally came in to see him, his symptoms had subsided and he proceeded to tell us: "yes, he's probably allergic to peanuts but there isn't any test you can do to determine if he does for certain or not", he also (trying to be funny) added something along the lines of, "you're going to be the parents in your child's school that everyone is going to hate because of this..." and when I asked if I should follow up with his family doctor, he said no, there was no reason. He sent us on our merry way and didn't talk to us about anaphylaxis, the possibility of biphasic reactions, etc. NOTHING! When I think back on this, I thank goodness that it didn't end tragically. How is it that some in the medical community can be so unaware? Education is so empowering -- now that I know better, I can better advocate for my child. Have others also had similar experiences with the medical community?

My GP and ER doctor's I've had great experiences with - it's the allergists I've had problems with.

(e.g. Sesame seeds are hypo-allergenic - and even if you were allergic how serious could the reaction be, they're so tiny. hmmm! Ever eat just one sesame seed? Ever heard of reactions to trace amounts? His response to the question of trace amounts was *that issue is blown out of proportion by those peanut parents)

As for the ER doctor. Sometimes the doctor you see in the ER is a resident or intern, not yet fully licenced.

As for waiting 3 hours to see a doctor. Did the nurse check bp? Were you either where a nurse could see you - or checked on occasionally? If bp was fine and breathing was fine - the triage nurse would not put you ahead of anyone else.

I can't believe the ignorance of that ER doctor! I also can't believe that you waited 3 hours. You should complain to the hospital about the doctor and the 3-hour wait.

When my son had his two reactions (before we even knew about any of his allergies), the ER admitted him immediately. It was only after the 2nd reaction (more severe) that we were referred to an allergist for testing.

My daughters first, and only reaction to ingesting milk was on her first birthday. Her entire head swelled, and she was swatting at her head, we think due to her inner ears being swollen. The ER doctor took awile, and treated with benadryll and steroids which a terrified one year old would not willingly take orally. The doctors were trying to hold her down, and of course she resisted. the doctors gave up, gave her to me and told me to have her take it. I calmly sat with her and made "yummy" comments and praised her for taking it. The nurse told me I had to rush because it was progessing into a very serious situation, but forcing her was only going to make her spit it up. I got it down her no problem, it just took someone to not terrify her with force...however now I wonder where was the epinephrine?

Some thoughts:
Every profession has its gems and its duds. It sounds here like a couple of duds.

The more on top of things you are; the less assistance you'll be given. That parent knows what to do, we' treat this heart attack and she'll call us if things get worse.

Anytime the breathing is compromised you need to be very vocal and insistant that they do something immediately! If this Dr con't do it, suggest he find another Dr who can!

At my school, there is a peanut allergic child who does not have an epipen at school. The principal has talked to the mother and also provided her with a community agency which will pay for it. Anyways, I looked at her er plan for the school and her gp signed the plan which did not include directions to use an epipen or to have one available. What is he thinking and what would his liability be if something happened?

I know of another parent whose child was diagnosed by a pediatrician with peanut, milk and egg allergies. No epipen was prescribed. This is negligence in my opinion. Every source we read about anaphylaxis says that there is no way to predict future allergic reactions. I think doctors need more training on anaphylaxis!!

I briefly met a woman last summer while traveling. My milk/egg/chicken allergic daughter is picky and wanted her usual food, my husband and I wanted to grab some mcdonalds, but get items free of her allergnes since we were all in the car together. I asked the manager about the fries, but he was an idiot...I left with no food. Anyways, there was a young woman in line with her 2 year old and baby. She said "hey my baby is allergic to milk too". She told me that she tried to give her 5 month old cereal with formula in it and he became covered in hives and his head swelled. She was not prescribed an epipen jr...infact was only told by her doctor to continue breastfeeding, not even advised to have benadryll on hand. But, what about when the child puts toys in his mouth, eats a wet cheerio off the floor, or other child kisses him etc. then what? I gave her the names of some some websites to check out, and pointed out that she should return to her doctor for a referal to an allergist...and yes, she needed an epipen. Unfortunately neither of us had a pen to exchange contact info.

I can envision problems with dealing with allergies in the ER...and those problems should be brought to the attention of the hospital...but AnnaMarie, that allergist you went to see is unbelievable. Didn't he/she know anything about the physiology of allergies? One should definitely complain to the ontario college of physicians and surgeons about something like that.

I agree that GPs/specialists in fields other than allergy+ immunology/respiratory medicine might in general not know a whole lot about allergies. It's a big problem. The change probably has to start with the curriculum in medical schools...if they haven't already reformed this.

some problems our family has had (sorry, folks, some of this is going to be info. I've already posted):

1) my mom thought I had an allergy to egg and to soy because projectile vomiting ensued as soon as she fed these foods to me--the reaction was immediate, and it took one bite. Plus she said I just seemed and looked really unwell. The doctor told her not to worry...that isn't a sign of allergies.

2) I obviously had allergies--both food and environmental. + I spent a lot of time in emerg in respiratory distress. Occasionally, I would be admitted to the hospital and stuck in an oxygen tent. No one could figure out what was wrong...they even tested me for cystic fibrosis. It wasn't until I was in grade one and spent 2 weeks in the hospital with pneumonia and then other complications that I was given asthma meds. The hospital visits stopped from that day.

3) when my youngest sister was born my mom says she had small red dots on her skin that quickly developed into eczema. the doctor said that infants don't get eczema until they are three months. She was referred to an allergist at the age of 3 months (with the same skin condition as before), and the allergist said that she had eczema. He prescribed a number of different treatments for her all at once----her eczema was really severe. But her skin got worse immediately after my mother tried the treatments--the allergist simply couldn't believe that she could possibly be allergic to the treatments and told my mother that he would put her in the hospital for treatment. It might have been necessary because of the severity of the eczema, but my mother refused to put her in. The doctor was shocked. He said that most parents would be glad to have her taken off of their hands. (I guess he didn't really understand how traumatic being separated from one's mother can be at that young of an age.)

4) in spite of visits to the allergist, I wasn't given an epipen + my parents weren't given any info. on anaphylaxis. It took a severe anaphylactic event for me to get an epipen.

I think my mother is pretty traumatized by all of this. I've been trying to get her to see an allergist. She says she doesn't want to eat peanuts anyways because of my allergy and that of my sisters, but the last time she had some they made her throat and mouth itchy and she said she felt a lump in her throat. She has oral allergy syndrome and also reacts sometimes to legumes...but she continues to eat most of the foods that bother her as long as the reaction isn't too severe. I'm concerned that this might not be a good idea, but because of all of our past experiences she is really resistant to the idea of going to an allergist.

5) when I was 15 I went into anaphylactic shock while in downtown Toronto at a family reunion. My father drove me to the Toronto General---the receptionist told us that I was too young to be admitted and asked us to step across the street to Sick Kids Fortunately, a nurse who noticed that I was having major breathing difficulties grabbed a wheelchair, put me in it, and literally ran across the street with me. The folks at Sick Kids were not very happy about this to say the least. Someone pointed out that a man stumbled into Sick Kids who was having a heart attack and they didn't tell *him* to walk across the street to the General.

6) more recently (3-4 years ago) I was rushed to Women's College hospital for suspected anaphylaxis. I'm not 100% sure if this was an anaphylactic reaction or whether it was partly anxiety. In any case, the epipen which I administered myself took care of whatever it was. The paramedics took the situation seriously, but the folks in emerg. didn't. They didn't admit me right away--the paramedics were annoyed and complained--for one thing I don't think they can leave until their patient is taken care of. (not sure about this, but this is what I would guess). Once I was admitted, they kind of left me in a curtained-off area unsupervised for long periods of time which was okay because my sister was there with me most of the time and I was symptom free after treatment, but wouldn't have been okay if I was on my own and was really having problems. Actually, I'm not sure about this, but I seem to remember my sister being in the waiting room for a period of time + I think I had to ask a nurse to get her...will have to ask her about this.

I carry two food allergy action plans. One for each daughter. I had only been using them to put in my daughters school medical bag...to assist others, but to someones advise on this site I now carry them everywhere. They are a piece of paper on letterhead from my allergist that explains how to treat a reaction, which medication to give and is signed by my allergist. I had printed off a food action plan from FAAN, but my allergist had one, on his letterhead that was much better and much less confusing. Now, the plan is, if either daughter has a reaction and ends up in the ER, I will have this paper with us as well. Also, her info is registered with medic alert, which is on her bracelet. Hopefully, a note from the allergist on how to treat a reaction will be a valuable piece of info to an ER doctor if we need it in the future.

We've had bad experiences as well.

My Daughter had severe eczema since she was about 11wks. Our first GP said my problem was I was putting to much cream on her! I'd been to a few walk in clinics and all the Drs just said to use cream & oil. Not one mentioned it could be allergies. I did discuss the potential of a milk allergy so one Dr suggested I switch to Soy. After I reported back that she was getting hives around her mouth he suggested switching back to reg formula - but didn't mention how severe the allergies could be.

Our new GP has been better. BUT it took my daughter having 2 severe reactions to different things - 1 requiring an Epipen Jr to be administered and me crying in his office to be sent to an allergist. And I don't think the allergist was that great either. Our first visit to the ER the Dr was great and gave us the Rx for her Epi Jr. When we called the ambulance for her 2nd reaction when we gave her the Epi - the paremedics told us we could go to the hospital, but we'd just wait there for hours only to be sent home!!!! I didn't know about the possibility of another reaction at that time! So we stayed home because she seemed fine. We were so lucky. Our GP was annoyed with that - and insisted we should always go to the hospital. I know you learn from your mistakes but I'm so worried one of my mistakes could be the differendce between life & death for her!

I'm feeling a bit lost still since it's still new to me. I thought we had it under control but she reacted to cupcakes today The only thing I can think is the Eggs since she won't eat them. I'd like to have her tested for more things but the allergist said to come back just before she starts school! She just turned two in December! We still have a ways to go.

I'm also frustrated because I called AAIA awhile ago and they were suppose to put me in touch with the support group in my area. Still haven't heard from anyone and I could really use some support...

Sorry for the ramble. Feeling low & lost today after her reaction.

mygirlsyd
What is your daughter allergic to?
If the allergist doesn't want to do further skin testing on a small child, could he do the RAST (bloodwork)? This is a good idea anyway, since you can track the levels over time.

So sorry you are having to battle doctors. My old allergist was good, and when he retired I went through one other before I settled on the current one. He is good, but has required a little breaking in.

Is she seeing a pedatric allergist? Sometimes you just need to shop around to find the right *fit*. Not a one-size-fits-all profession.

I've always found the words, "I will consider you responsible" effective in getting a Doc's attention. As in, "I will consider you responsible if you do not test my daughter for the egg allergy, and she has anaphylaxis to egg." Just let them know you want the testing done; don't take no for an answer.


Hang in there,
Daisy

Mygirlsyd,

My youngest daughter is allergic to eggs, and has never injested them. After the severe reaction to milk, I was in no mood to stick eggs in her and see what happens. I dipped my finger in an egg, yolk and white and rubbed a bit on her back, far away from her mouth, she got hives. I washed her back, gave her benadryll and at our visit, had her tested for egg and it was positive.

My allergist is concened that with my daughters sensitive skin, she may react to anything being rubbed on her skin, and cause me to believe she has more allergies than she actually has...however if her skin is going to get hives and swell up from minor contact, I'd rather not find out what will happen if she injests it.

As far as we know she's anaphylaxic to Peanut & Sesame. She's allergic to Soy & Chickpea. The allergist tested her for peas and stringbeans when we had her tested and they came back negative. She's eaten small amounts of them in the past without a reaction.


No, I don't think he was. I have to admit that I've never really had any real issues with Dr's before since I've never been in a life threatening situation so this is all new to me. I'm not going to force the issue now since I'd really rather not have to put my daughter through that again anytime soon. It's only been 3 mths since she had the testing done but I think I will get my GP to refer us to another allergist later. I always just felt fortunate that we were actually able to get a GP since there's such a shortage in our area.


Is this a "safe" way to determine if she may be allergic to them? I'm not sure if it was the egg to be honest - that's just a guess since it's 7th on the list of top 10 allergies. She's eaten things with egg in it before without a reaction. She won't eat them on their own - as soon as it touches her tongue she moves away and says "yuck". I've never tried to force them on her.

I think we'll just do our best to avoid them too and I'll ask the GP at her next appt which should be before the summer.

Thanks

saskmommyof2


Please be careful with this method. I know this would mimic a "real world" exposure, like getting it on your hands while cooking, or something. But the solutions they test with in the allergist's office are very dilute! They will sometimes work their way up a series of dilutions to grade a reaction.

Thanks,
Daisy

what was in the cupcakes? was it a mix or from scratch? what kind of reaction did she have? maybe someone here might have some insight as to what it could have been.

I would suggest calling your allergist----you shouldn't have to wait until your next appointment. My allergist is usually booked, but he has made it clear to me that I should call if I'm having difficulty. I do know that allergists don't like to do across the board tests sometimes. There are some good reasons for this 1) if the child has not been exposed to a food, the test would be negative even if the child develops an allergy later 2) the skin tests aren't that accurate but if it is positive then often people start to avoid that food even if it was eaten safely in the past. *But* if there is a reaction, the allergist will do tests....I'm betting that your allergist will test your child now since there is a problem. Of course, there is a chance that he/she might be dismissive in which case I would suggest going to your GP and asking to be referred to another allergist.

If there's an allergist in your area who is involved in the AAIA or in Anaphylaxis Canada and is actively doing allergy research I'd suggest trying to get a referral to her/him. Maybe too if you join an anaphylaxis support group in your area people would be able to help you find a good allergist. Since the AAIA didn't call you back, maybe you should contact Anaphylaxis Canada. I'm sure they would be able to direct you to a support group.

I second Daisy's caution about trying the skin test on your own. I've read somewhere (this was in the Journal of Allergy and Clinical Immunology but I don't remember which issue exactly) that children who have a reaction through skin contact are less likely to outgrow the allergy than children who have reactions through ingestion. Even though the reaction is less severe through skin contact, it could prime the immune system to react more strongly the next time. I should add that I don't think that this was conclusive research--just one study.

On the blood tests--in my experience, Canadian allergists aren't as likely to do a lot of RAST tests. From doing some reading on another allergy board, I've found that people in the States tend to mark their child's progress according to RAST test results. It can be an indication, but it isn't accurate. The RAST test is actually less accurate than skin tests. In my experience, allergists here tend to do skin tests first unless there is some reason why the skin test isn't appropriate...and then if things are unclear they do a RAST test.