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

[rebekahc]

I you knew you were allergic to peanuts and wanted to kill yourself, why on earth would you just smell it.  Would not having a nice pbj for lunch be a more sure fire method?

There's no way I could ever force myself to eat PB.  Kind of like putting your head under water and taking a deep breath.  Possible means of suicide?  Yes.  Common method?  Not that I've ever heard.  Why?  Some things your body just won't let you do no matter how much your brain wants to.  OR, maybe he intended to eat it, but smelled it first and that was enough? I'm not saying whether I think the story is plausible - just responding to your question.

As far as the rest of this thread, I completely agree with what CM said and have had very similar experiences WRT airborne reactions.  Unfortunately, because such extreme sensitivity is so rare, most medical professionals will discount the possibility.  You may never find a doctor who believes your child could be that sensitive, but you should be able to find one who is reliable in treating your child and keeps up with current research.

[twinturbo]

SweetSawyer, VT is a no toll state. In order to get anywhere outside of VT you'll have to go through toll states. Either carry a good wad of cash for tolls or register for an EZ Pass. EZ Pass is good for virtually all of the northeastern area. This is if you're going out of state, especially if you're going through a couple of states back and forth.

[catelyn]

It seems far-fetched, to be sure... but I'm not sure that I'm willing to call it "impossible."

Here's why: the few studies that have been done to establish a "safe" threshold dose for peanut have been abject failures (in other words, some of the patients react to the lowest doses, albeit with "subjective" symptoms), and those same studies often routinely exclude the most 'severe' patients in terms of reaction history.  Understandable, of course, since a study should in general NOT provoke a life-threatening event intentionally, or even stand a reasonably liklihood of doing so, KWIM?

The kicker is that those same patients have often manifested the greatest SENSITIVITY (ie-- need the lowest doses).

People can and most likely DO react to traces too low to be reliably detected in foodstuffs.  Why should air sampling be different?  Well, one can (arguably) pull more air through a filter/carbon cartridge in an attempt to make the "sample" larger, and therefore improve detection.  But that assumes that you can recover what you've loaded onto your cartridge with 100% efficiency, and it assumes that your 'capture' device is perfect, too, and isn't allowing the analyte (proteins, or maybe even protein fragments) to be passed through the sampling device.

Therefore, my DH and I both (we're both PhD scientists and have excellent background in sampling and QA/QC for analytical methods) have some suspicions that this phenomenon may simply be one of the ANALYTICAL limit of detection (LOD) being far above the tolerated dose for a small minority of PA persons.

Bottom line is that we KNOW that this is more than a theoretical possibility-- canine noses can detect things that even the most sensitive of analytical detection devices (electron capture and mass spec, at the momet) can't touch.  Why should this be different?

Therefore I'm not so quick to dismiss it as "impossible."  Particularly not when I know what I've seen with my own two eyes.  You'll have to take my DH's and my word for it, but we are NOT looking for an aerosol explanation-- ever.  But when to do otherwise stretches the limits of credibility it becomes the least implausible explanation (cross-contamination OF cross-contamination OF cross-contamination OF a surface in an environment routinely wiped down thoroughly, followed by possible, but unlikely, hand-to-face contact which nobody else saw... which resulted in airway symptoms FIRST, followed by other systemic symptoms).  I'm truly not sure how else to explain facial hives, itching mouth and nose, and tearing, bloodshot eyes while an allergic child is CARRIED through a room containing the allergen in concentrated but undisturbed form-- not when that child is untouched by anyone but the parent (whose hands are holding the child) and the symptoms VANISH just as rapidly as they appeared once the parent and child are out into fresh air.  I've seen this happen with my DD, and so have a number of our friends and acquaintances over the years.  It didn't happen EVERY time, either... and not always when I knew it was there... 

I don't even pretend to know just how little protein must be involved in that situation.  Truly.  Now, I know that lakeswimr is going to come back and suggest that SOMEONE touched her, or that she must have been touching stuff outside of the room and that a surface was contaminated because the allergen was present... but I really have turned those explanations over in my head and they don't work all the time... and this was NOT psychosomatic.  At 18-36 months old, I can't really think so, since my DD was not nervous about the presence/pictures/idea of pn-- only the SMELL of them.

I worry far less about skin contact than I do about inadvertent internal exposures, regardless of source or route of exposure.  But with little ones, there's not much to separate the things, if you KWIM.  Contact with hands BECOMES ingestion in a hurry.


Again, low-low-level aerosol reactivity really and truly is NOT most PA kids' reality.  I know this.  Not even most very sensitive kids' reality.  But kids like mine do exist, even if what they do seems to defy explanation.    I bitterly regret teaching my daughter to try "toughing it out" in environments where she knew that there was aerosol exposure happening-- this is NOT a lesson that any FA child should learn... that some "bothersome" symptoms should be ignored in order to do things that one wants to do.  They don't always stay just "bothersome" is the problem, and I didn't figure that out until I'd already conveyed that lesson to my DD.  I wish that I hadn't listened to those who said that this was all in her head and that it was "not possible" for her to react other than by ingestion and that we were making her "neurotic" about her allergies by catering to her "psychogenic" symptoms.     We taught her to ignore what her body was telling her when we should have been teaching her that SHE knows her body better than anyone. 

Sorry-- but this is an issue that really gets my dander up.  I get sick of being judged even by other well-intended allergy parents as neurotic and over-protective, and so does my DD.  This is her reality, and while it makes her part of a VERY small subgroup even of severely affected FA people, it doesn't mean that she can ignore that reality.  She does so at her own peril.  Unfortunately, we know that to be true.

I most certainly don't doubt the possibility of someone dying from inhalation.  What I doubt is the accuracy of the story of reporting a suicide by smelling with verifiable facts and evidence.  Could the person have died form smelling absolutely, but it seems like a very sketchy story and almost impossible to actually VERIFY, especially given what CM has said about measuring levels.  It just seems way to far fetched that something that was very likely to be  scientifically unverifiable could be used as a basis for all peanut rast.  There is a leap there that is just not logical.  A coroners best guess as to what happened would likely be what would happen in such a case. 

Do I believe the Doc who told you?  To be brutally blunt no.  I was told by an allergist that it was fine for me to eat barley after telling him I am celiac.   I KNOW its not but if I wasn't me and was blindly trusting that would be a VERY dangerous professional misinformation.  There are a lot of moronic doctors out there that spread misinformation.  I don't care who they are or what organization they are tied to he could be WRONG.  How many times have we heard of kids with a PA who don't carry epis because their docs tell them their allergy is not serious enough.  There is NOTHING on pubmed about this incident.  There is ONE reported case of an ATTEMPTED suicide from ingestion but ingestion would be verifiable and clearly when its attempted the individual admitted it.  If this was in fact a true incident, it would be in the medical literature.  If you find a link, I am sure I am not the only one who would like to see it.

[catelyn]

I you knew you were allergic to peanuts and wanted to kill yourself, why on earth would you just smell it.  Would not having a nice pbj for lunch be a more sure fire method?

There's no way I could ever force myself to eat PB.  Kind of like putting your head under water and taking a deep breath.  Possible means of suicide?  Yes.  Common method?  Not that I've ever heard.  Why?  Some things your body just won't let you do no matter how much your brain wants to.  OR, maybe he intended to eat it, but smelled it first and that was enough? I'm not saying whether I think the story is plausible - just responding to your question.

As far as the rest of this thread, I completely agree with what CM said and have had very similar experiences WRT airborne reactions.  Unfortunately, because such extreme sensitivity is so rare, most medical professionals will discount the possibility.  You may never find a doctor who believes your child could be that sensitive, but you should be able to find one who is reliable in treating your child and keeps up with current research.

Dunno either.  Shurg.  Just seems like if you were that desperate you'd go for what was your most likely shot.  A sane person can't possibly think the way a suicidal person does.  On our cruise at christmas one of the staff committed suicide by jumping overboard.  We were woken up by a man over board call and they spent 9 hours looking for her.  Helga was freaked out a bit by going out on the outside deck afterwards and kept saying how could anyone do that.  Desperation can cause people do do some mighty horrific things.

Do you really leave a suicide note saying I sniffed this pb and intended to kill myself? 

[CMdeux]

Well, there is a lot in the body of knowledge in medical research which is NEVER going to be in the peer reviewed literature.

To be fair, I mean.  Where particular tissue lines come from, particular reference samples, etc; all of that kind of thing is subject to patient confidentiality even after the subject dies... and in instances where the subject's life/death is potentially embarrassing or just distasteful in some way, it's likely that they don't WANT recognition.

So I can well believe that there is a circulating consensus regarding where that reference standard originated, and no published reference to it anywhere that the public has access to it.  There are tumor cell lines that have the same kinds of origins.  (And no, I don't just mean HeLa cells, though that is one of the most infamous instances.)

  Is the story correct?  Who knows!

Is it likely that the physicians who have shared this story believe it to be true?  Of course they do. 

Is it possible that it is true?  Yes, albeit just barely.  Is it possible that it is a professionally-specific urban legend?  Yes, definitely.

There are all kinds of arcana associated with particular techniques, reference standards, reagents, etc. in research.  Some of them are no doubt completely mythical... so why would otherwise scrupulous and skeptical people like scientists and clinical researchers tell them over and over again?  Well, they humanize a field that is otherwise rather.... um... "clinical" and more than a little sterile in the emotional sense.  <shrug>


I'm sure that the OP probably got a lot more than she bargained for in this thread, huh?  LOL.    Sorry for the weird tangent.   

[catelyn]

Oh for certain, I am sure the person telling the tale believes it to be true. 

Broken telephone though kwim?  Things like this then to get embellished as the tale gets told. 

OP see what you have walked into with us LOL   

[lakeswimr]

I think that telling teachers that people can die of inhalation to things like peanut butter and *room temperature* foods that are not agitated (such as a bag of flour getting opened) is BAD for food allergic children because if they do any reading at all about FAs they will read experts saying that is impossible.  It damages our credibility as a whole to claim things that are close to impossible or impossible as *likely* to happen.  It also can cause serious reactions in people if the focus is on 'smell' allergies as opposed to contact ingestion.  My son's school had the mistaken idea that people who had 'smell allergies' were more sensitive than everyone else and divided kids into two categories prior to DS going to school--those who react to smell and those who only react if they eat the food.  They didn't even do simple handwashing and hadn't heard of contact ingestion.  I have heard mothers of older FA children talk about reactions that happened in school that they attributed to the child walking past another child who was eating a cookie.   Um, much more likely the fact that your child ate at the regular lunch table and didn't wash hands and no one else did etc caused the reaction than walking past a child eating a peanut butter cookie.  I have heard of people having anaphylaxis from not taking care to prevent contact ingestion but being very worried about 'smell' reactions.  So, no, I don't think it is a good thing on which to focus. 

The chances that the OP of this thread has a child who reacts to peanut butter or room temp food that isn't agitated is slim to none and focusing on that instead of basic things such as preventing x-contam, good label reading, hand washing and other things to prevent contact ingestion is a big mistake in my strong opinion.

I can't comment on CM's situation and nothing I am writing is about CM.

[lakeswimr]

Well, if you really don`t believe it, you could always email Dr. Sher to confirm whether he said it, and tell him how silly you think it is.  I mean, if you are so sure that he didn`t say it....

You asked for a source, disbelieving the story, and I gave you the source.

I'm sorry--I'm not trying to be disrespectful but if there were even a tiny part of me that thought this were possible I would email the doctor but I 100% do not think it is even a possibility.  I'm not even curious whether it happened or not.  I think it didn't so I have zero interest in talking to the doctor about it.

[catelyn]

I think that telling teachers that people can die of inhalation to things like peanut butter and *room temperature* foods that are not agitated (such as a bag of flour getting opened) is BAD for food allergic children because if they do any reading at all about FAs they will read experts saying that is impossible.  It damages our credibility as a whole to claim things that are close to impossible or impossible as *likely* to happen.  It also can cause serious reactions in people if the focus is on 'smell' allergies as opposed to contact ingestion.  My son's school had the mistaken idea that people who had 'smell allergies' were more sensitive than everyone else and divided kids into two categories prior to DS going to school--those who react to smell and those who only react if they eat the food.  They didn't even do simple handwashing and hadn't heard of contact ingestion.  I have heard mothers of older FA children talk about reactions that happened in school that they attributed to the child walking past another child who was eating a cookie.   Um, much more likely the fact that your child ate at the regular lunch table and didn't wash hands and no one else did etc caused the reaction than walking past a child eating a peanut butter cookie.  I have heard of people having anaphylaxis from not taking care to prevent contact ingestion but being very worried about 'smell' reactions.  So, no, I don't think it is a good thing on which to focus. 

The chances that the OP of this thread has a child who reacts to peanut butter or room temp food that isn't agitated is slim to none and focusing on that instead of basic things such as preventing x-contam, good label reading, hand washing and other things to prevent contact ingestion is a big mistake in my strong opinion.

I can't comment on CM's situation and nothing I am writing is about CM.

 A bag of flour is sort of a bad example because it can and does get everywhere and can be ingested rather easily in an incidental kind of way.  A bag of cookies or bread is a better example where the food matter is a solid vs a fine, easily distributed, inhale-able powder.

Accidental ingestion from not washing hands is a VERY good point.

[CMdeux]

Yes, and I hope that it is VERY clear that while I dislike being told "that's not possible" (because it is our reality, as rare or whatever as it might be); I definitely do NOT think that controlling for aerosol exposures has anything like the relative importance of handwashing and avoiding cross-contaminated foodstuffs.  Certainly not in a school setting where there are multiple sources of the allergen and multiple allergic children.  Handwashing, cleaning surfaces, and all of that takes top priority.  Absolutely.

We do all of that stuff, too.  It just was never enough until we began to control for aerosol exposures too.

But this is why I tell newly diagnosed parents not to borrow this particular trouble-- because if you have one of these kids, believe me, you'll know.

Our reality is that other parents ask "well, then if she's so sensitive, how on earth do you ever ________(fill-in-the-activity)?"
I just stare blankly.  Because the answer is; "We don't."  I guess most people really think we don't walk the walk or something, I don't know.

We do.  We do all the stuff that other people with FAs do, and then some.   (And no, I'm not trying to start anything about whose situation is more awful or anything.  It is what it is.  I'm very grateful that we aren't dealing with a sesame allergy, to be sure... because it would mean calling, calling, calling manufacturers... oh, wait.  I guess that I do-- often it's like pulling teeth to get a company to ADMIT that they share 'cleaned' lines without disclosing the risk.  Cannot count the number of times that we've been burned by this.  There's a reason that I avoid Kraft/Nabisco.)

Anyway.  Being careful about what you eat, where it came from, and where your own hands have been is ALWAYS going to be more important than worrying about what someone else at the park is eating.      

[lakeswimr]

To be clear--I meant that a bag of flour being opened CAN cause a reaction because the protein actually gets into the air.  We can even see this happen with our eyes.  I was giving that as an example that is very unlike a room temp cookie or pb in a jar, etc. 

I think that telling teachers that people can die of inhalation to things like peanut butter and *room temperature* foods that are not agitated (such as a bag of flour getting opened) is BAD for food allergic children because if they do any reading at all about FAs they will read experts saying that is impossible.  It damages our credibility as a whole to claim things that are close to impossible or impossible as *likely* to happen.  It also can cause serious reactions in people if the focus is on 'smell' allergies as opposed to contact ingestion.  My son's school had the mistaken idea that people who had 'smell allergies' were more sensitive than everyone else and divided kids into two categories prior to DS going to school--those who react to smell and those who only react if they eat the food.  They didn't even do simple handwashing and hadn't heard of contact ingestion.  I have heard mothers of older FA children talk about reactions that happened in school that they attributed to the child walking past another child who was eating a cookie.   Um, much more likely the fact that your child ate at the regular lunch table and didn't wash hands and no one else did etc caused the reaction than walking past a child eating a peanut butter cookie.  I have heard of people having anaphylaxis from not taking care to prevent contact ingestion but being very worried about 'smell' reactions.  So, no, I don't think it is a good thing on which to focus. 

The chances that the OP of this thread has a child who reacts to peanut butter or room temp food that isn't agitated is slim to none and focusing on that instead of basic things such as preventing x-contam, good label reading, hand washing and other things to prevent contact ingestion is a big mistake in my strong opinion.

I can't comment on CM's situation and nothing I am writing is about CM.

 A bag of flour is sort of a bad example because it can and does get everywhere and can be ingested rather easily in an incidental kind of way.  A bag of cookies or bread is a better example where the food matter is a solid vs a fine, easily distributed, inhale-able powder.

Accidental ingestion from not washing hands is a VERY good point.

[CMdeux]

Yes, mechanical disturbance is almost ALWAYS a factor-- but an aerosol can remain suspended in an enclosed space for a REALLY long time, in our experience.

School cafeterias are a horrible place for my DD if there are chairs and tables set up-- because years of pb residue get resuspended every time one of them is moved.

Similarly, if someone places a few dozen PB cookies ONTO a serving plate in a room, that can count as an aerosol distribution. 

Walking on carpeting that has had cookie crumbs dropped into it for years... similarly.

An open, but completely UNDISTURBED jar of PB is less risky than either of those two situations, at least from an aerosol-reaction standpoint.

Cooking with mechanical disturbance (stirring, flipping, or scooping) is the biggest culprit by far-- it distributes large amounts of protein into the air, and it can really last.   

[Janelle205]

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. 

[Carefulmom]

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]

Sorry I still don't buy it.  I don't buy that they would use ONLY ONE person to calculate a number for something like that ESPECIALLY someone with an potentially unverifiable cause of death.  That one person  would be statistically insignificant in a population study and would constitute bad science.  Similar to one person who dies from say a vaccine. 

And yes, that is exactly what I am saying.  Hire a doc that tells you want you want to hear.  What about the british scientist that LIED about the measles vaccine and autism links and then admitted it.  Yes it happens. 

I am by no means saying that areosol can't happen.  I want to be perfectly clear on that.  Its the hearsay of this "story" that I am in doubt of. 

Carefulmom, why don't you email him and get him to send you a copy of the scientific research on the cap rast and how the number was devised  so you can share this with us because you know him.  As I said before, I would like to see this information if it indeed exists.