Talking Allergies

Nicole,

At my allergists office they have a HUGE sign saying "NO FOOD ALLOWED IN THIS OFFICE...PATIENTS WITH FOOD ALLERGIES" I also have never seen the receptionist, nurse or anyone with food, a cup of coffee or anything.

Food in the allergists office is just totally unacceptable!

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DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.

I've seen food being served or eaten (including a hospitality cart being wheeled in, containing muffins and other allergens) at several Toronto and Montreal allergists' offices. I just don't think they've thought the matter through. In my opinion more patients should speak up, as I think that many of us are just too polite and don't want to make waves. And, of course, the ones who do speak up don't want to speak up all the time.

Aside from the obvious risks, if uncontrolled foods are being eaten at an allergists' office, how can they be sure that people are reacting to the allergy tests, and not to someone eating a muffin right next to them? It introduces a 'wild' element to the testing procedure. That alone should motivate allergists to institute and enforce no-food and handwashing rules.

You make a good point, Andrea.

They take the time to change the paper on the examination table and to sanitize everything so it's sterile, and then they let people eat in the office! Seems to defeat the purpose, especially as far as food allergies are concerned.

I will mention it to the receptionnist next week, when we go for my daughter's RAST results.

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

Yeah, I really should have spoken up on those occasions. I could have probably said something to the receptionist if she was eating a muffin or something....but it was nuts and I didn't think that I'd be able to sound calm and diplomatic...

I'm not sure what the nurse was eating. I didn't want to say anything to her...I have the impression that she would be the type to not really listen and to take offence. I want to avoid offending someone who gives me needles!

At my allergist's they do peanut challenges, so about a year ago we found ourselves sitting across the very small waiting room from a girl with a Dixie cup full of peanut butter that she was having to consume... I found it rather strange and disturbing for there to be that substance in a small room filled with potentially very allergic people (including my own kids). I should have said something or written a letter at the time.

Of course, this was the same office that had old carpeting and nasty old teddies (!!!) for kids to play with - in the world's smallest waiting room filled with asthmatic and dust-allergic kids. Thankfully, the last time we were there the nasty teddies were gone and hardwood floor had replaced the carpeting.

But I am actually kind of ashamed of myself now that I didn't say anything about either situation. If people don't speak up, how will others know there's a problem? I know that if someone tells ME there's a problem with something that I have control over, and it seems like a reasonable request, I try to accommodate... (Any of you out there who disagree please let me know!! )

I did speak up once about 2 years ago when we were at the local children's hospital for an ear appointment and a child was eating a nut-covered ice cream cone practically right under the "no peanuts or nuts allowed" sign. I spoke with the receptionist to ask if having peanut/nut-covered food was allowed, and she said no, and asked who was allergic. When I replied "both my kids" (and they were both present) she went and told the kid and his dad about the policy. (I wonder if she would have done it if I'd just said that I was enquiring about the policy... People still really don't understand about cross-contamination.) These days I'd probably be offering the kid a wipe as well...

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

I hate that people ask questions like this! It kind of implies that they will only respect their policy if someone is actually allergic and it comes across as questioning whether you have the right to make such a request. It's right up there with my most hated comments, such as "has she ever had an anaphyaxic reaction"? It feels like you're being challenged. Am I to sensative? I digress...
I think most of us can recall a time that we could have spoken up, maybe should have spoken up and didn't. We might have been pre-occupied with something else, we may have felt intimidated by a procedure, we may have meant to follow up, got busy and it lost amongst all of the other little jobs we have to do.
I try to carry a small note pad and pen with me. I often jot down product UPC's, company websites of telephone numbers to investigate at a later date. I suggest recording the details that make you uncomfortable and allowing yourself the opportunity to follow up later.
Of course if it is a severe risk you may have to tell the person in charge or front line worker that you have to leave and why. I still think this could be followed up with a letter.

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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

Hi,

I went to see my therapist yesterday. I've been dealing with a mild panic/anxiety about travelling. Started at Spring Break when we were on our way to Disney. Had anxiety about going out of town...the 8-hour car ride...what would I eat there...what if I had a reaction and we weren't near our car...etc... (This was all stemming from a mild reaction at a local resort over the Christmas Holidays. Had a long drive to the hospital. And from a previous reaction at my in-law's the last time we were in Florida a couple of years ago.)

So I get to my therapist's floor and as soon as the elevator opens, I smell fish! I thought, "Hope that's not where I'm going." Of course, the minute I opened her office door, it was overwhelming. YIKES! Quickly, I headed back to the elevator.

I paged her when it was time for my appt, and she met me downstairs. We were able to find an empty conference room. She was very apologetic. She said her office-mate must have heated some leftovers for lunch. But she congratulated me for handling the situation so well. No panic, just problem-solving. And, best of all, no reaction. Still made my appointment, with a minor adjustment.

Good "training" for my therapist, too. She was proud that I was focused on problem-solving, not anxiety. She has not dealt w/ allergy issues, so while she sympathizes, she is curious about how much stress is involved. And how much an alteration of our day-to-day activities must take place. Lots of planning for even simple activities/errands. She got a first-hand glimpse of what we deal with every day. She said, "It must be really hard to even go to a friend's house, or to the grocery." Yep. But it's do-able.

Sorry to complain, but these allergy issues just keep popping up where I least expect it!

Thanks for listening,
Daisy

Hi everyone,

I have about 2 1/2 years of experience with anaphylaxis and allergies (my little one is anaphylactic to several foods). I've been meaning to write a post about a horrible experience we had with an allergist, and whenever I start writing the post, I get too upset to finish/send it.

I think I want to write a little bit about it. Please do let me know if I am over-reacting ... as I said, I only have a couple of years experience with this!

Here's the short story: the nurse offered my son candy to 'calm him down' before his skin prick tests (their prick test protocol story I'll save for another post). Then, shortly afterwards, the *doctor* offers my son candy (he doesn't even know yet what my son's situation is. Further, shouldn't he be guiding me on how to politely refuse food from others? When I refused the candy he rolled his eyes at me.). Finally, another nurse comes in wearing enough perfume to make plants wilt. My son, who is asthmatic, started coughing and getting sniffly almost immediately.

It just struck me as odd (... ok, this stuff INFURIATED me) that an Allergy/Asthma clinic would seem so insensitive and have no clue.

I'm sorry to download on you all. I think I better stop ... this happened in February, yet I can feel myself getting upset thinking about what our little guy had to go through unnecessarily. It was pretty traumatic for all of us, and maybe one day I'll have enough courage to tell you about the rest of the story.

Thanks for reading, and I wish you all a healthy day.

Hugs and smiles,

Supi

PS Thank you all for being so open and honest about your stories ... it helps to have allies!

Supi- Are they insane?!
What did they think you were there for a social visit? I would seriously question any allergist who used food as a reward/bribe.
We have been having that same problem with our daughters' school, I assume it is because they are just not getting it. I would expect the allergist to "get it".

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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

Supi - You are not over-reacting. I only got to the part above and I said OH MY GOD. I cannot believe any allergist's office would offer any food to any person there!! And the perfume thing is also totally inappropriate. That is so frustrating and upsetting that the allergist and nurse did that (and the eye-rolling thing... grrr....)

I hope that it helps to "talk" about it a bit with us.

Any chance of going to another allergist??

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

Supi you are definitely not overreacting! Acting the way they did would cause me to lose confidence in their ability to care for my family.
I know you can get a "bad apple" in every profession, but you would think that someone who specializes in this area would "get it" . I agree with Karen - if possible, I'd see about getting a new allergist.

Supi, these kinds of experiences can stay in our memory for a long time, and I can totally relate to how you have been unable to write about it for so long because it has been too upsetting for you.
Good for you for writing about it now. You don't have to keep these awful experiences to yourself. Sometimes sharing is the best way to lessen the burden. I'm sure every poster on this forum has had an experience that infuriates, so don't feel like you are alone. Personally I have found this forum to be a source of strength for me, to know I am not alone, and more importantly, my son is not alone either.
When my son was first diagnosed just over a year ago, I read somewhere that although food allergic people will likely encounter some negative and even painful experiences, food allergic people also encounter experiences that are more fulfilling than your average. For example, you may encounter a store clerk, or a coworker, or a friend, who is far more understanding and supportive than you might have ever thought. And as a result, some relationships become friendships that go a little deeper than expected. When I start remembering the bad experiences, I try to replace those thoughts with the positive experiences. Easier said than done, I know..... but I do find it helps a bit

I wonder if you have had an opportunity to express your feelings to the allergist's office. Maybe once you get referred to a new allergist, you could write a detailed explanation to the bad one. Why should you have to carry this load around? Let the "doctor" carry some of it too.

Catherine
mom to Jacob, 4 yrs, ana to peanuts and possibly tree nuts

Supi, ditto what everybody else said, especially Catherine who so eloquently pointed out the yin to the yang (spelling?) of allergic living. When a door closes, a window opens.

It's hard to learn to be confrontational (and I mean this in a non aggressive way), but it's important to stand up and point out that the candy giving is a negative action for a very young allergic child. Sometimes you have to spell things out to people and perhaps the best thing would be to write a letter just mentioning why you thought it wasn't a good idea.

It's hard enough protecting our children when they're young, when they have food allergies, that job becomes so much harder that it's difficult not to get emotional. But like Catherine said so well, let the doctor carry some of the load!!

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

I get more and more upset when I think of this story. What if your child had reacted? (Or any child for that matter?) They don't know what a child is allergic to at this point -- it could be anything -- even corn, which is pretty much in all candy! So not only is there a traumatizing and potentially risky reaction, but the testing can't be done so the family has to wait that much longer for a diagnosis. And what if he'd had an asthma attack? Yikes....

This is ignorance that is dangerous, and considering the source of this behaviour... well, I am left with my mouth hanging open and steam coming out my ears.

(And that's the first time I've ever used that emoticon!!)

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

Hi everyone,

Thank you so much to *ALL* of you for your kind and supportive words. I feel a lot more confident now, and maybe even enough so to finally write the doctor a letter.

After our appointment, I immediately called the referring doctor's office and shared my experience, thinking that the referring doctor may not even know who he is referring people to!! I was told that no one else has 'complained' and that the allergist must have been having a bad day. Needless to say, this didn't sit well with me either, and I thought I should write a letter to the allergist in hopes that no other family will go through what we went through. You all have given me the support I needed to move forward on this important project! If you all don't mind, perhaps I'll post a draft on here to get some guidance (and cyber hugs?).

The good news is that we saw Dr. Waserman and felt very comfortable with her. The 'not-so-great-news' is that like Nicole, we saw people in the kids play area with foods our boy is allergic to. I usually bring a bag of toys for our son in hopes of avoiding x-contamination, but he is after all a toddler and wanted to touch ALL the toys in the waiting room. That was a bit scary and frustrating. Good thing we always carry wipes with us! It would, however, be nice if we could relax (if only just a little bit!) at an Allergist's office.

Our son's first allergist was great (but since we've moved, she's a bit too far away for us). She told us early on that she learns more about day-to-day allergic living from parents than she does from scholarly journals/workshops etc. Given our experience and reading about all of yours, I feel she may be on to something!

Let's hope one day we can be positive agents for change and help teach/encourage our communities to become healthier and safer.

Thank you again. You are all so nurturing, and it feels good.

Enjoy a peaceful day,

Supi