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

[SweetSawyer]

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

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.

[CMdeux]

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.) 

[lakeswimr]

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. 

[twinturbo]

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.

[Carefulmom]

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.

[lakeswimr]

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. 

[Carefulmom]

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.

[lakeswimr]

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.

[Carefulmom]

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.

[lakeswimr]

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.

[Carefulmom]

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. 

[AllergyMum]

I have to agree that it seems far fetched to me as well.

[CMdeux]

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.

[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? 

[Carefulmom]

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.