I'm having trouble finding a dependable allergist / one minute they say yes we agree with you that he is touch and air reactive. Blood marker test 100> then turn around and say they could eat peanuts in front of him and talk to him and he will be fine. Sawyer even reacted to the 3 back skin test where they gave him medicine after his face got red, puffy and itchy.the welt was 1 1/2 " long. They even have the photo diary of one of his touch reactive crashes that landed us in the hospital.
http://www.facebook.com/media/set/?set=a.1716973041899.2086894.1165427267&type=1&l=729075ea5a (http://www.facebook.com/media/set/?set=a.1716973041899.2086894.1165427267&type=1&l=729075ea5a)
This last Mondays vised they told us even the most sever cases can eat soy oil and soy lethesen. So we trying Mc donalds again after going through the ing/list soy oil and soy letisen being in it. I was on a adrenalin rush the whole time. He was fine so then the next day we tried gold fish ...... he was good on Tue-Thr but grabbing another bag same flavor on a 2 hour road trip Saturday to see my sick grandmother he started to react an hour 1/2 in drooling, tongue swelling and jaw starting to swell. 2 doses of benadryl and jumping is adrenaline he was good for about 5 hours then relapsed every 4 hours till 3 am. The Dr.s are in such denial or memory laps from all our other crashes and hospital visits, and and I am getting both frustrated and scared not having a reliable Dr. Have you heard of anyone in or near VT. That deal with very reactive byphasic children.
My daughter is (and has always been) similarly sensitive. It really does boggle the mind until you've seen it with your own two eyes.
I don't understand HOW it works-- only that it does seem to be truly aerosol in nature, having seen it too many times to count over the years.
What finally helped was a compromise position with our allergist-- who is unquestionably an expert in FOOD ALLERGY and in anaphylaxis. I'd recommend finding one of those if you don't have one. There are excellent physicians in CT and NYC, which is in driving range for you, certainly.
Secondly, at some point you may just have to agree to disagree on the subject with an allergist. The problem is that what kids like yours (and mine) seem to do defies the known mechanism and dosing that conventional wisdom considers necessary for triggering systemic allergic reactions.
Still-- I'm not so stupid that I'm going to continue doing things that "should" be fine just because someone who doesn't live with MY child's food allergies daily thinks that it is. Does that make sense? My allergist doesn't know what he doesn't know-- even as good as he is, he's never managed daily life with a kid with this kind of sensitivity. Period. It's a game-changer.
What finally led our allergist to common ground with us on the subject? An inadvertent impromptu 'challenge' that happened in-office where he saw it himself. Someone in the nursing staff ate... well, SOMETHING, anyway... in the office and she reacted to it. Without touching a thing. He watched her turn interesting colors and watched her pulse and skin for an hour. Full systemic (but mild) reaction. From an aerosolized source. This was when my daughter was six years old. We'd seen reactivity like that (including facial swelling and running nose/tearing eyes, hives, breathing issues) from aerosol exposures to peanut since she was about 18 mo old.
Since then, the other thing that we've been careful to do is use the term "aerosol" rather than "smell." The two things aren't really the same. The latter refers to the volatile scent components of a food, and the former refers to ALL components, which includes the allergenic ones.
The other thing that we've done is carefully state our basic concerns about this type of exposure, which FA experts steadfastly maintain is "not dangerous" for allergic persons; our concern isn't necessarily that such an exposure will trigger life-threatening anaphylaxis (though, privately, I do think that it's probably possible for my particular child under the wrong set of conditions, regardless of what the experts maintain here, and DD has at least one anaphylactic reaction that I think proves it)-- but that it is A GOOD INDICATOR THAT AN ENVIRONMENT IS GROSSLY CONTAMINATED AND THEREFORE INHERENTLY UNSAFE.
That much, our allergist WILL go to bat for us with.
As far as oil/lecithin safety, frankly, people with low reaction thresholds are NEVER going to find those things uniformly safe to consume. Oh, sure, it "should" be fine. And it is, mostly-- for about 90% of people with the food allergy, that is. Bummer that you're in the other 10%, but now you know, right? Avoid and move on; life's better when you just write some things off as being not in your reality, we've found. (My DH is another person who canNOT tolerate soy lecithin or oil.) :grouphug:
CM--I wrote my reply before reading your reply. Now--before posting I want to write a bit to you so it doesn't sound as though my post was directed at you. I do wonder, reading what you wrote, if perhaps the nurses were eating things around the office other times as well, and then touching things after they did. I know you said your child didn't touch anything but on the way into the office I would guess your child touched some things -- door knobs, chair handles, toys in the waiting room, etc. Most people, especially children, touch SOMETHING when we are in public. Most also touch our faces unconsciously. When my son had his baked milk challenge the nurse had him sit at the staff lunch table without spraying it down first! I objected and she cleaned it using a squirt of dish soap on a paper towel (which only locks in food proteins!) I could see visible crumbs on the table! I objected again. She wanted to feed the food to DS herself without washing her hands first. I objected again, etc. The nurse works with top allergists but clearly doesn't get x-contam. How much of the office has this woman x-contamed? I wonder. I do not think the new poster has given us enough info to know whether her child is having reactions to airborne allergens or contact ingestion or not and I think many people tend to assume reactions are airborne that are actually contact ingestion and take care to prevent airborne (ask people to put away visible bowls of nuts, etc) but don't take enough care to prevent contact ingestion reactions (wipe down surfaces, hands, etc).
Welcome. Did you epi for the swollen tongue, droll, etc reaction in the car? That was a serious reaction and our plan and all plans I have seen would call for giving the epi and calliing 911 and going to the ER for 4+ hours for a reaction like that. And you are right--biphasic reactions happen in a significant % of anaphylaxis and so it is very important to get the epi (because it helps prevent biphasic reactions) and go and stay in the ER until symptoms have resolved in case a 2nd wave reaction happens.
Do you have an emergency action plan and epi pens? When does your plan say to give the epi pen?
I'm not sure what you mean by 'jumping' aderenaline.
Even the air just above a jar of peanut butter does not have any detectable peanut protein. Protein has to get into your child to cause a reaction. In general food has to be heated or agitated in a form that can release protein into the air in order to have potential to cause a reaction. Roasted nuts, boiling milk, cooking eggs, a bag of flour being opened or flour being scooped, a PLANELOAD of people opening little bags of nuts at roughly the same time (as opposed to one person or a few people nearby doing so), a restaurant where people throw peanut shells on the ground all have the potential to cause an airborne reaction in allergic people. People eating nuts at a nearby table or even right across from a nut-allergic person isn't likely going to cause any reaction. Now, if some spit flew out of their mouths and into the allergic-person's mouth that would be a different story but that would turn into INGESTION and not airborne. Airborne reactions even in cases where foods are heated or agitated are not that common. The chance of your child having anaphylaxis to room temperature foods being eaten by others (like peanut butter cookies that your child doesn't touch) is close to zero if not zero in my opinion.
Contact ingestion is a different story. Contact ingestion is a reaction from touching contaminated surfaces and then touching one's eyes, nose or mouth, thereby ingesting an allergen. Even contact ingestion reactions are rare but they can happen. Recently my son landed in the ER from a contact ingestion reaction. I think many reactions attributed to airborne reactions are actually contact ingestion reactions. Proteins actually are measurable on people's hands and surfaces where food is eaten before hands are washed and before surfaces are clean. If some gets on an allergic person's hands and they touch their mouth they can react.
I think the most important thing for food allergic people to do is to read labels and avoid eating their allergens. If they deal with non-top 8 allergens then calling companies to make sure foods don't contain these allergens is equally or more important to label reading. Next is to be sure one's food doesn't get cross contaminated by allergens. Next is taking care of handwashing, etc to avoid contact ingestion reactions.
I agree with your allergist that most peanut allergic people could be near someone eating peanuts and be just fine. I'd just ask that they wash their hands when they were done with those peanuts (or use wipes).
Not all soy allergic people can eat all forms of soy. Many can but a good % can not.
Did your child eat anything but goldfish during that reaction or in the 2 hours before it started?
Here is FAAN's emergency plan. YOu can print it out to use if you don't have a written plan yet. Your allergist should have given you one and in my strong opinion it should have directed you to epi in the situation you described in the car.
Editing out link to other food allergy site at request of moderators.
Not in VT, no. And I wouldn't recommend anyone in NH no matter if they hang "Food Allergy and Anaphylaxis" specialist out on their shingle. I saw her--horrible.
I'm not sure where you are in VT but knowing that and upstate NY very well as well as Mass I'd say if you want not only a very good allergist but access to serious resources including oral immunotherapy in the future, try Mt. Sinai in NYC or Mass General. For NY you could drop down 87 or 91. To Boston I'd take 93 unless you're really far south.
If you're really close to the NH border up north there's definitely someone you can try in Portland, Augusta and Kennebunk in Maine. Cutting across isn't a great drive even if it's close as the crow flies.
We take our oldest child to Mt Sinai. Facilities are great. Doctors are great. You're not going to get a lot of what I'd call personalized attention there. Mass General has a pediatric food allergy center. The care I've received at Mass General for non-allergy issues is top notch. They're always putting on some sort of information clinic for patients it seems. But then... you'd have to drive in to Boston.
All in all depending on how your drive would be to Boston I think I'd go there for an "outlier" sensitivity + non top 8. At least give them a call see if there's a doctor there that works more with extremely low thresholds and non top 8s.
As far as the second bag of goldfish that caused the reaction, was it a new unopened bag or had someone else already eaten from it? If it was already open, could someone else have stuck their hand in to get the goldfish? I would wonder about hands with allergen on them being in the bag.
Airborne reactions to peanut do happen. When I was at the FAAN Walk a few months ago, the allergist who was present told me that a peanut allergic person committed suicide by smelling an open jar of peanut butter. This is the person whose blood is used as the positive control for the cap rast test. I had heard this story years ago, and he confirmed that it is true. Since he is an allergist who is part of FAAN, and FAAN has on occasion denied that airborne reactions occur with peanut, I consider this allergist to be a reliable source.
I don`t know of any allergists back east, but agree that you should be able to get good care for your child at Hopkins or Sinai.
Careful mom, I have a very had time believing that story. Do you have any sources? Who was the allergist? What is the name of the man? Why doesn't faan, etc publish this story? Why would allergists publish studies that show zero proteins in the air above jars of pb?
I know my son who is very sensitive to minute amounts of ingestion took a big ole wiff with his nose just above an open jar of pb with ZERO reaction, not even a tiny hive.
Quote from: lakeswimr on January 11, 2012, 06:54:07 PM
Careful mom, I have a very had time believing that story. Do you have any sources? Who was the allergist? What is the name of the man? Why doesn't faan, etc publish this story? Why would allergists publish studies that show zero proteins in the air above jars of pb?
I know my son who is very sensitive to minute amounts of ingestion took a big ole wiff with his nose just above an open jar of pb with ZERO reaction, not even a tiny hive.
Like I said in my post above, I have a source. It was the allergist who was representing FAAN at the FAAN Walk a few months ago. His name is Dr. Larry Sher. Since he was representing FAAN at the FAAN Walk, not some random allergist I happened to strike up a conversation with in a social setting, I have to believe that he would not say it if it were not true. I originally heard the story about the peanut butter inhalation suicide from our school nurse when dd was in elementary school. At the time I confirmed it with the allergist who trains our school nurses on food allergies and epipen use in our district. He probably has his facts straight.
I'm sorry but I do not believe anyone can commit suicide by smelling a pb jar, no matter how allergic they are unless some pb actually makes its way into the person's mouth, but then that wouldn't be from just smelling anymore. I think that sounds like an urban legend that the allergist must have heard. If that ever happened FAAN would be talking about it, it would be in every book about FAs, etc. I don't think it happened or even could happen.
Yes, airborne reactions can happen but they are less common than contact ingestion and contact ingestion isn't that common a cause of *anaphylaxis*, either. (my son had ana from it a month ago but it isn't a common thing to happen). Airborne reactions happen when protein gets ingested into the lungs so the protein has to get airborne--agitated or heated. It is much more likely that a mystery reaction is from eating a food that was x-contamed or from contact ingestion than airborne to a room temp food.
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.
How could anyone possibly know for certain that smelling pb killed a person? There is no way! First it would be pretty much impossible to die from something that doesn't get proteins into the allergic person but 2nd -- unless someone filmed him and saw he didn't eat anything the 2 hours before the death and could account for no contact ingestion as well there is no way to say what a person's cause of death was. The whole thing sounds very silly to me. If there was a snoopes for FAs think this would be on it. Sorry.
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 have to agree that it seems far fetched to me as well.
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. :disappointed: 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 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?
Since this is the person whose serum was used as a positive control on the cap rast, he is much more reactive than the average pa person. He has to be in order for it to be an accurate positive control. However, my point is not whether the average pa person is airborne sensitive, but rather that it can happen. Whether my child is or any other child on this thread (or adult) really isn`t the point. And after all, it benefits us if our teachers are being educated that airborne reactions can happen. Keeping allergens out of the classroom due to concern over airborne and contact reactions helps prevent contact-ingestion reactions, which are much more common. And I don`t want the OP to read this thread and think no child can have an airborne reaction. I don`t know how severe the OP`s child is or her reaction history, so it is important that she knows that airborne reactions are not impossible.
Quote from: catelyn on January 12, 2012, 02:28:10 PM
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? :shrug: 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.
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.
Quote from: CMdeux on January 12, 2012, 01:09:53 PM
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. :disappointed: 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.
Quote from: rebekahc on January 12, 2012, 03:12:02 PM
Quote from: catelyn on January 12, 2012, 02:28:10 PM
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? :shrug: 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?
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. :bye:
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 :happydance:
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.
Quote from: Carefulmom on January 12, 2012, 11:17:25 AM
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.
Quote from: lakeswimr on January 12, 2012, 05:51:54 PM
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.
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. :yes:
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.
Quote from: catelyn on January 12, 2012, 06:29:24 PM
Quote from: lakeswimr on January 12, 2012, 05:51:54 PM
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.
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. :yes:
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.
bold added
Quote from: Carefulmom on January 11, 2012, 09:56:40 PM
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.
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.
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.
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.
Quote from: Janelle205 on January 12, 2012, 07:43:33 PM
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. :yes: Perfect description.
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.
I think that it may be appropriate to split this discussion on the doctor's story from the original discussion.
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.
Quote from: AllergyMum on January 13, 2012, 07:47:58 AM
I think that it may be appropriate to split this discussion on the doctor's story from the original discussion.
Totally agreed.
I was curious about Larry Sher.
Dr Lawrence Sher, MD
http://www.vitals.com/doctors/Dr_Lawrence_Sher.html (http://www.vitals.com/doctors/Dr_Lawrence_Sher.html)
Quote
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 (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 (http://www.centerwatch.com/news-resources/research-centers/profile-details.aspx?ProfileID=1122&mp=empty)
Quote
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?
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 (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 (http://drrobertwood.com/airborne-peanut-risk.shtml)
Quote from: catelyn on January 12, 2012, 10:30:22 PM
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.
bold added (again)
Quote from: Carefulmom on January 12, 2012, 08:52:54 PM
bold addedQuote from: Carefulmom on January 11, 2012, 09:56:40 PM
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.
Quote from: Carefulmom on January 13, 2012, 09:28:49 PM
Quote from: catelyn on January 12, 2012, 10:30:22 PM
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.
' 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.
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.
delete
Well, as most might imagine, anyone who IS a practicing physician or other medical professional, or IS a practicing attorney is likely to be very wary of "outing" that openly as a member of this community.
If Carefulmom wants to discuss her professional credentials in the context of this discussion, then I think that is fine. But really, I'm not sure that it is entirely relevant, and I wouldn't be surprised if she does not.
IMMV, personal opinion, not practicing over the internet, etc. etc. Y'all know the drill.
Quote from: lakeswimr on January 14, 2012, 12:31:18 PM
' 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.
Again, the suicide was so long ago, there is no way that you could possibly know that it was not published. Have you read every single piece of medical literature ever published? Probably not. Many of us on this board have been misinformed by pediatricians, including me. I already posted on this very thread about being told to give milk allergic dd butter to increase her weight gain, being told wrongly that butter does not have milk protein. Many of us here have stories about wrong information about allergies from pediatricians. However, the physician who trains the nurses on the epipen is an allergist, not a pediatrican, and actually very well known and well respected in the medical community. And then most recently having been told the same thing at a FAAN event, I guess then one would have to believe that FAAN is not a reliable source either. And that might have been true at one point years ago when they published articles saying airborne reactions do not occur, but at that time some felt that the motivation for publishing such articles was that FAAN was receiving funding from the peanut industry. The motivation for an allergist at a FAAN event falsely stating that airbore pb reactions occur would be far more obscure to me. But again, if you are so sure that it is not true, you could email him. I mean after all, if you are so sure that he will reply stating he never said that, you would have spent far less time emailing him to get the facts that posting over and over and over on this thread about how you don`t believe it. The fact that those on this thread who insist that this pb suicide story is made up, and who insisted on a source, have not emailed the source to "prove" I made this up says it all.
And no,
of course, I am not going to post my credentials on an internet message board. That`s just common sense. I am under no more obligation to post my credentials than when some of our members who work in the legal field give input on legal situations or when an opthomologist on this board posted in response to an eye question. When Ark has posted about nursing situations, no one is asking her for her credentials. When teachers on this board post about learning disabilities, no one is asking for their credentials.
It is a shame that a couple of people on this thread have such a hard time with the fact that not every allergist agrees with you. Whatever....I am finished with this thread. I posted initially because I didn`t want new people to see information that may not be correct. I think anyone objective can read this thread and see what is really going on. And as for me, I am moving on.
Quote from: Carefulmom on January 16, 2012, 08:23:30 PM
If someone committed suicide simply by SMELLING pb, if that REALLY ever happened you can bet it would be so widely published we would all have read about it many times over. FAAN would use it to our benefit all it could. The fact that FAAN, etc never mention it speaks volumes.
' most recently having been told the same thing at a FAAN event, I guess then one would have to believe that FAAN is not a reliable source either.'
Um, he is an allergist who happened to attend a FAAN walk. YOu just made a huge leap by making it sound as thought he represents FAAN. He does not. He isn't on the FAAN medical board.
I'm posting because I want newbies to take cafe of ingestion and contact ingestion and only worry about inhalation if need be. The vast majority 99.9% of us do not need to worry about inhalation unless it is something like heated proteins, agitated proteins, etc. Many newbies may read things like this story and get freaked out and think their child is likely to die from smelling pb when in fact there is about a zero % chance of that happening. They would be much better served being told to do good handwashing, surface cleaning of eating areas, label reading, etc. It's a safety issue IMO.
Is this link in here?
http://www.acaai.org/allergist/Resources/letters/Pages/Anaphylaxis_from_Substances_Applied_to_the_Skin.aspx (http://www.acaai.org/allergist/Resources/letters/Pages/Anaphylaxis_from_Substances_Applied_to_the_Skin.aspx)
http://www.wtvr.com/news/wtvr-doctor-death-of-7yearold-serves-as-a-lesson-to-schools-20120105,0,6978677.story (http://www.wtvr.com/news/wtvr-doctor-death-of-7yearold-serves-as-a-lesson-to-schools-20120105,0,6978677.story)
nevermind.