Talking Allergies

Hi,

We had a HORRIBLE experience at the allergist's office yesterday. DS's eye started swelling soon after he was playing a video game in the waiting room. I looked down and saw bunches of muffin/cake (?) pieces on the ground. On the way to the sink to wash his hands we stepped over what looked like chunks of cheese. There was at least 1 Tim Horton's coffee cup cap ... and though I can't be sure, looked like there was dried up blood on one of the kiddie tables.

There was a whole lot more, and those of you on the forum know that my kid is so sensitive that we have no choice but to live in a bubble. You can imagine how scary this would have been AND you get what it's like to take care of an anaphylactic child. We didn't get the feeling the allergist took a minute to fully understand DS's current medical fragility (for lack of a better term). I'm shortening the experience because I know you are all busy, but at one point she said hives were a dime a dozen and nobody ever died from hives (from her perspective, I guess she was trying to make me feel better?).

She also said that he will outgrow soy because she didn't know any adults with a soy allergy. Am I losing my mind? There are adults on this forum allergic to soy, correct?

We step into an invisible mine field of allergens when we step outside the house. That's our reality right now and we do our due diligence to minimize the risks when we DO leave the safety of our home. I would expect that an ALLERGIST might insist on keeping her waiting room cleaner and safer ... even if she has to share it with other medical professionals.

I realize I sound so disconnected. I suppose I'm feeling that way. Thanks for letting me vent and as always I appreciate the support I get from you all. If I'm losing my marbles, let me know and I'll try to look at the situation another way.
Thanks!

That is unacceptable! Can you get a referral to another allergist?

Until you said "she" I thought you might have been talking about the allergist we saw 2 years ago. Except he was actually the one who was snacking on cookies and peanut butter in between patients. He also offered my son one of the cookies from his plate. That was the last time my son saw him. On the first visit he suggested that both of my sons do food challenges for egg, when one had just had an anaphylactic reaction to egg a couple of months before! He was a complete disaster. He gave nonsensical, conflicting advice (because he was barely paying attention to what he was doing), was difficult to contact, completely disorganized and seemed to feel that doing food challenges was the best way to determine allergy, regardless of RAST or SPT results or prior history.

So you are definitely not crazy. There are bad doctors out there (and a lot of mediocre ones, or good ones who are too busy to do a really good job). If there is one thing I've learnt so far in this allergy journey, it is get a second opinion if you are at all uncomfortable with the care you are receiving. Such as, "no such thing as an adult with a soy allergy"????

Our new allergist has a spotless office, gives advice that is thorough, well thought out and completely in line with everything I've read here, on AAIA etc., carefully explains test results, refers patients to additional sources of info and support and maybe best of all, expresses genuine concern about our children's safety and well being. It is easy to access either him or one of his knowledgeable staff, and a plan for follow up appointments etc. is clearly laid out. Having a really good doctor to care for our sons' allergies has made a huge difference for us!

I hope you can find a good one too, they are out there.

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1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema

What a terrible experience! Time for a new allergist and a letter to the allergist and her College.

I was just at ours last week and there were signs EVERYWHERE stating that food was not permitted in the office. I was chuckling about it at the time because I thought "DUH!".

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daughter: 6 years tree nuts, peanuts

Panacea, Your visit with the allergist was unacceptable! I definitely think you need to ask to see another allergist. Do you know of any? Hopefully you know of other allergic individuals in your area that can recommend someone else. There is no way food should be allowed in the allergists office (unless your child is being tested with the pure food that is not available in serum form - we've had to do this for some foods (such as pineapple) since there is no existing serum for the more rare food allergies). We now have a wonderful allergist for our son, however, the first allergist he saw was not good at all! We spoke with our family doctor, and asked to see a different allergist. We gave her the name of the allergist we wanted to see, and she took it from there. We had to give her a reason for the request (I guess a new referral required this information), but it was easy to make the change. We still had a long wait to see a different allergist, and in the meantime our son had another anaphylactic reaction, so it was pretty stressful, but once we found a very knowledgeable allergist, things were much better.

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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

I am sorry to hear that your visit went so badly.

The allergists answers sound glib and I would find it very hard to enter into a relationship with her from what you said.

I do know that oral challenges are done in Dr's offices, but every precaution should be taken to contain the allergens. After all this is why we go there as...Gem states, "DUH".

I am frustrated when I think that you waited for this appointment in the hopes that it would give you some answers and a a sort of road map on how to manage the allergy. You've wasted your time now as you'll need to wait for another apoitnment with another allergist.

By all means get another referral and tell the referring Dr why you want one. You might also ask when booking the appointment if it's possible to book a time after the office has been cleaned but before any oral challenges have been taken. It may mean a longer wait but it might also reduce so of the anxiety of the visit and you need to be focussed at the appointment and not reacting to potential dangers all around you.

Remember, there are good, capable people in every profession but there are also lazy, incompetent people as well. It is our job to seek out quality information and capable professionals with whom we can enter into a relationship. Do to not settle for less. Sadly, our very lives depend on 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

Our allergist does not allow food in the waiting room either. I guess I just thought ALL allergists offices would be that way.

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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.

Hi!

You are right Susan. Thanks to everyone for their support. As long as we trust DS's body and what it's trying to tell us, I think we'll be in good shape.

In sharp contrast to the "Expert Allergist" is DS's family doctor. She herself is ana. to tree nuts and has a PA daughter and truly understands not only what it's like to be a parent of an 'allergic' child, but what it feels like to have an anaphylactic reaction ... and the drug 'hangover' that people often feel for days afterwards. (i.e. she has never said, "So what if he starts having a reaction ... you have an epi-pen, don't you?").

This doctor has been the best thing since sliced potatoe bread for my family! She has taken the time to fully understand my kid and his very special circumstance. She has NEVER made us feel like we're over-protective. In fact, she's always been a champion of the efforts we've taken to keep our children safe, happy and healthy (which all of you can relate to!). It's nice to get a pat on the back once in a while, wouldn't you agree?

She always calls us at home after we visit to make sure DS tolerated the visit safely. She has even offered to open up her own HOME to us as a safe place to expand our bubble, just to allow my kid the opportunity to know there are other safe places in the world.

So between her and DS, we're thinking we have the best allergy experts we could ask for.