My toddler is air reactive to peanuts and touch reactive to peanut, pea and soy

[Carefulmom]

I met him at the FAAN Walk.  We talked for a few minutes.  I am not sure that constitutes "knowing him".  Personally since I have heard this story for over a decade from several sources, I don`t really feel it is my place to email him for the purpose of challenging him.  It isn`t bad science to use a statistically insignificant person as the positive control.  It is actually what you are supposed to do:  take the most extremely high number available and use that as the positive control.  A positive control should not be based on statistical significance, but rather the most extreme case there is.  I don`t know if the research from over ten years ago is even out there.  If it is, it sure wouldn`t be easy to find.  I don`t know of any way to find medical journals that are that old on the internet.  So I`m not really into trying to back someone into a corner, just because a few people on this board don`t believe this doctor.  If someone at a FAAN event there as an expert states a medical fact, I am not really interested in challenging him.  I confirmed this story by email ten years ago when the school nurse told it, but I am certainly not going to essentially ask him to prove it, just because some on this board don`t believe it.  Anyone who wants to is welcome to email him, but I am not particularly interested in doing someone else`s dirty work.   Emailing him and asking to spend his time doing research to find the original article is way over the line, IMO.

[catelyn]

So you really found out about this from the school nurse.  So we have all now heard this story on the internet so ergo it must be correct and we are free to pass it around as well.

Enough said.

A person died, and they used this as a control.  The rest of the story sounds like a whole lot of embellishment.  Like I said, broken telephone. 

[CMdeux]

While I don't have enough experience to get into the aerosol allergen debate - and luckily, no first hand experience, though I have had contact ingestion anaphylaxis, what I have been thinking in regards to this discussion is that I can really relate to people that are having aerosol allergen reactions in regards to the way that my asthma behaves.  I have asthma attacks, sometimes severe ones, in response to completely ridiculous things.  My last 'favorite' was an asthma attack from the smell of smoke on my fiancee's jacket after he stood in the doorway for a few minutes of a house of smokers.  To someone who hasn't seen it, or felt it, it seems unbelievable.

Luckily, I have a good pulmo, who completely believes me and can advise me in regards to this type of thing.  His most memorable response: "If you are in a situation where you even feel like you 'might' be having trouble from an environmental factor, you need to get out of it.  Immediately.  Your asthma is too sensitive and too severe to screw around with.  Sh*t will hit the fan if you don't get out of those types of situations."  I'm feeling like most of the folks with extreme aerosol sensitivity are dealing with the same thing.

That's it exactly.     Perfect description.

[AllergyMum]

I don't believe this story at all. I don't believe that doctors story and like I said before it is to far fetched to me.

Yes I believe that people do react to things at different levels of severity, some by raw ingestion, some by bake and raw ingestion, some by contact and some may be by air.   My child does has contact reactions to unseen dairy on surfaces while others can eat baked dairy with no reactions.

But I also don't believe someone just because they are a doctor regardless of who they are associated. Our first allergist was highly recommended however did not prescribe an epipen for a dairy and oat allergy since it wasn't a peanut allergy. Being a doctor does not mean that you know a damm thing.  For me a doctor must prove their knowledge and abilities before I will believe a word from them. And I would assume that most others on this board would be the same given that most of us have read more research on allergies than most doctors do.

[AllergyMum]

I think that it may be appropriate to split this discussion on the doctor's story from the original discussion.

[lakeswimr]

Ever since I joined FAAN 8 years ago they have NOT claimed airborne reactions can't happen. They have said things like roasting nuts, boiling milk, etc can cause reactions.  THey have warned of many peanut packs being opened on planes having the potential to release enough peanut protein to get into air filtration systems to cause a reaction in some peanut allergic people.  They have consistently said that room temp products like cookies, pb, etc are not going to cause anaphylaxis unless there is contact ingestion and they still say this.  They have not warned or said enough about contact ingestion, but that is changing.  Maybe prior to 8 years ago they claimed no one could have an airborne reaction but I that would be before my time and the literature I got 8 years ago was written prior to 8 years ago so I doubt it was even within 10 years they made such a claim if at all. 

[catelyn]

I think that it may be appropriate to split this discussion on the doctor's story from the original discussion.

Totally agreed.

[ajasfolks2]

I was curious about Larry Sher.

Dr Lawrence Sher, MD

http://www.vitals.com/doctors/Dr_Lawrence_Sher.html

Dr. Lawrence D Sher, MD has obtained board certification from the member board for Pediatrics and Allergy & Immunology.

In addition to the specialty of Pediatrics, Dr. Lawrence D Sher, MD has expertise in 5 areas. This includes Asthma, Eczema, Immunotherapy

I see him listed here:

http://www.acaai.org/members/Documents/ACAAI-AAAAI_PearlsTesting_Annals.Dec08.pdf

Also at research listing site:

http://www.centerwatch.com/news-resources/research-centers/profile-details.aspx?ProfileID=1122&mp=empty

Lawrence Sher, M.D.
 Medical Director
 
Dr. Lawrence D. Sher received his medical degree from the University of Utah School of Medicine in 1983. After completing his residency in pediatrics at the University of California Los Angeles in 1987, Dr. Sher attained two fellowships; one at the University of California Los Angeles Department of Allergy and Immunology and the other at Harbor UCLA’s Department of Allergy and Immunology. Dr. Sher is certified from the American Board of Pediatrics and from the American Board of Allergy and Immunology. He holds fellowships with the American Academy of Pediatrics, American College of Allergy, Asthma, and Immunology and with the American Academy of Allergy, Asthma, and Immunology.

Since opening the doors to Peninsula Research Associates, Inc. in 1999, Dr. Sher has served as the principal investigator for over 200 clinical trials. He actively contributes to the development of medicine by conducting clinical trials that focus on areas such as allergic rhinitis, asthma, Attention Deficit Hyperactivity Disorder, Chronic Obstructive Pulmonary Disease, and vaccinations.

When I Google his name and "FAAN" I don't get hits -- anybody else get some? 

Any one able to find quotes from Dr. Sher anywhere online?

[ajasfolks2]

And, FWIW, here is the old-old discussion from wayback:

http://www.peanutallergy.com/boards/reaction-to-peanut-smell-a-myth-according-to-john-hopkins-researcher



And Dr. Wood's take, per his book:

http://drrobertwood.com/airborne-peanut-risk.shtml

[Carefulmom]

So you really found out about this from the school nurse.  So we have all now heard this story on the internet so ergo it must be correct and we are free to pass it around as well.

Enough said.

A person died, and they used this as a control.  The rest of the story sounds like a whole lot of embellishment.  Like I said, broken telephone.

No, not at all what I said.  Please read my complete post before twisting my words around.  I first heard this from the school nurse.  I emailed the allergist who stated it and confirmed.  I also heard it at several medical conferences over the past years.  I also heard it at the FAAN Walk from the allergist who was there.  I posted this on the old board long before the FAAN Walk.

Believe it or don`t believe it; it makes no difference to me.  It is apparent that you don`t want to believe it.  Whatever....But at least bother to read my posts before responding. 

[Carefulmom]

bold added (again)

bold added

If you think Dr. Sher is wrong, you could always email him to confirm the story.  He was very certain when we spoke.  He did not say "Oh, I heard...."  It is actually well known in the medical community that the positive control for the cap rast is from this patient in Colorado who committed suicide by peanut inhalation. I have heard it in medical meetings as well.  I just can`t name names in that scenario, due to privacy concerns.  I don`t feel right quoting on the internet what transpires in medical meetings for medical professionals.  But Dr. Sher was available at the FAAN Walk for lay people to ask questions, so I don`t think it is a big deal that I am naming him on the internet.

So it isn`t one doctor who is hypothetically making this up.  It would be several.  I know all about misinformation from doctors.  I was told by a doctor to give milk allergic dd butter to increase her calories, because according to her butter does not have milk protein, only fat.  BTDT with the wrong information.  But is FAAN really going to allow themselves to be represented by an allergist who gives out blatantly wrong information by saying that airborne reactions kill?  Given that just a few years ago FAAN wanted us to believe airborne reactions don`t happen, I can`t see them letting themselves be represented by a doctor who gives out false information about airborne reactions having the ability to kill.  And I don`t picture our school district allowing a doctor who trains every school nurse in the district on the epipen (hundreds of nurses; our district is huge) to be teaching wrong information.  That seems pretty far fetched to me. 

Again, the positive control on the cap rast has to be someone who is much more sensitive than the vast majority of pa people.  That is the point of a positive control.

[catelyn]

So you really found out about this from the school nurse.  So we have all now heard this story on the internet so ergo it must be correct and we are free to pass it around as well.

Enough said.

A person died, and they used this as a control.  The rest of the story sounds like a whole lot of embellishment.  Like I said, broken telephone.

No, not at all what I said.  Please read my complete post before twisting my words around.  I first heard this from the school nurse.  I emailed the allergist who stated it and confirmed.  I also heard it at several medical conferences over the past years.  I also heard it at the FAAN Walk from the allergist who was there.  I posted this on the old board long before the FAAN Walk.

Believe it or don`t believe it; it makes no difference to me.  It is apparent that you don`t want to believe it.  Whatever....But at least bother to read my posts before responding.

I hope the OP gets a good allergist who is knowledgeable on the subject and has a good bedside manner.

[lakeswimr]

' And I don`t picture our school district allowing a doctor who trains every school nurse in the district on the epipen (hundreds of nurses; our district is huge) to be teaching wrong information.  That seems pretty far fetched to me.'

Unfortunately it doesn't sound far fetched to me at all.  My son's former pediatrician is our district's physician--the one who writes the standing orders for the epi pen.  He doesn't know ANYTHING about food allergies and gave me so much bad advice he could have ended up causing my son's death.  We are only LUCKY that DS was fine in spite of his terrible lack of knowledge about food allergies.  DS didn't get diagnosed until age 2 because of him and the terrible first allergist we saw.  Because of the two of them DS ended up having super severe anaphylaxis and they still were telling me to just give Benadryl even then!  The fact that someone is a doctor doesn't mean they know anything about food allergies.  Most general practitioners are lacking in their knowledge of food allergies because it is a specialized field where the current best practices and recommendations differ a lot even from 5 or 10 years ago.  There are many here who went through several doctors before they got a proper diagnosis, many who got diagnosed and weren't told to carry epi pens, many who got epi pens but weren't told when to use them or were given dangerous emergency plans such as 'use if he stops breathing', etc.  And if we want to talk about nurses, unfortunately many have even less information about food allergies.  They apparently teach that Benadryl can stop reactions in many nursing schools because it is a very common myth among nurses. 

How would your school district be expert enough to know whether this doctor is teaching the right thing with regard to how to treat anaphylaxis?  School districts often know even less than doctors about food allergies and they will NOT question a doctor on what they say.  They won't have the legal authority to contradict the district doctor.

the fact that a school nurse said this story means zero.  I'm not sure what type of medical conferences you went to where people were saying this story but this story, if true, would be PUBLISHED.  It doesn't appear to be published anywhere.  Even some allergists do not know food allergies and can be ill informed.  My son's first allergist told me I was just a nervous mother and that ds didn't have FAs in spite of my telling him about DS's lip and eye swelling, hives and vomiting after eating certain foods. He didn't give me an epi pen or anything.  I'm not impressed by hearing 'an allergist said blah blah'.  I pay attention to things that come out of top allergist's mouths (even they are not infallible but they go by science) and what FAAN published and other researchers publish, etc.   

[YouKnowWho]

I just had an ER pediatric physician two days ago tell me that I read too many labels and I need to give DS1 wheat and barley so they can get an accurate Celiac test even if he is anaphylactic to those allergens.  Are you kidding me?  Even if he is diagnosed with Celiac he would still have to avoid wheat, rye, barley and most oats - oh yeah, his allergens. 

I had an allergist office tell me that barley couldn't cause an ana rxn while I was watching DS1 have one from trace amounts.  Same office told me to start feeding DS1 his allergens after the age of 2.  Yeah, huge chain practice here in a my very large southern city.

Another allergist declared DS1 was allergic to wheat, rye, barley, oats, rice, corn, eggs, dairy, soy, peanuts and all tree nuts just by testing alone and refused in office food challenges (we did many behind her back at home as they were foods he was eating - corn, rice, dairy, soy).  We found out a year later peanuts and tree nuts were a false positive because we had that allergist (third time is the charm) who had a clue in regards to food allergies.

[catelyn]

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