Okay - we all run into them -- the allergically blase or misinformed.
I did learn to shut up a long time ago -- I used to be quite vitriolic on the subject and many an unnecesary RAST test was done on a poor child because of my advice.
BUT
My hairdresser told me that her sesame allergic child was accidentally served tahini -- and was in the principals office having difficulty breathing -- and they -- instead of epi'ing her -- they gave her a homeopathic remedy called apis -- at her request -- my mouth dropped. In fact, I don't think I said much, but just got nervous. visibly upset. My hd did not say goodbye to me -- so apparently I upset her. (do I go back for another haircut?) I want to gently warn people without alienating them, ya know.
Today, another ma told me about her child's allergic reaction to sesame -- hives, welts. she gave Benadryl and then the child vomited three times. Her allergist would not give her an EPI -- he said her RAST score, which was over 2.00, was "clinically insignificant" . Helllloooo !! I told her this WAS and anaphy. reaction, or potentially one since she had 2 body systems going. and that the REACTION was more clinically significant than the RAST number. I'm right, right??? I recommended Mt. Sinai. But I always feel like I have alienated the mom some -- even when I try hard to be humble, etc. And -- I want little lives to be protected and I want mom's to have good information -- but I also want them to like me -- because I feel so lonely with this stuff.
And I did get this right, right? hives/welts and repetitive vomiting = danger. Sesame=frightening allergy
Yes, you got both points absolutely right.
Sesame is super-potent and increasingly ubiquitous in processed foods.
It triggers anaphylaxis about as often as peanut does in allergic populations. Which is to say-- at something more than 25-30% of allergic individuals.
Yes, they need Epi. I hope that both families get some. :-[
I wish someone like you would have told ME this when I first got dx'ed with an almond allergy (later found out I was also allergic to walnuts, too, but I never ate them). My allergist didn't seem bothered despite all the above symptoms - take some benadryl, take some prednisone. When I was told recently a reaction to almonds could have KILLED me (hives, closing throat, coughing, vomiting), I was flabberghasted. I definitely hope they get some epi pens!
You are absolutely right. And besides that, would you rather not offend someone or possible save a life? Yes, of course you should be as tactful as possible, but you can be tactful and informative at the same time. If they take offense from tactfully presented facts, that is their problem, not yours. And if say nothing, and somebody dies, think of how you would feel.
You were absolutely correct on both counts, hopechapel.
And can I tell you that of my son's allergens, sesame is the one that is the most frustrating to deal with, because it still isn't considered a "Big 8" in this country - despite it being well labeled for most other places. :disappointed: Fortunately my DS's sesame threshold appears to be pretty high, because despite my best attempts at avoiding it, I know he's eaten food made on shared equipment without incident. Knock wood, salt over shoulder, poo poo poo.
The homeopathic remedy for breathing trouble? Ay yi yi, that could probably trigger a CPS investigation. Honestly.
Now about that next haircut... ;)
She got a doctor to fill out forms instructing a homeopathic treatment? A real doctor?
Quote from: SilverLining on September 12, 2012, 06:14:08 AM
She got a doctor to fill out forms instructing a homeopathic treatment? A real doctor?
I know, stunning, right? I can't remember what state you're in (I think it's nearby), and am wondering if this is a public school. Because if it is, don't they have to follow a care plan from an actual, licensed medical professional?
I deal with this all the time with someone in my life. benadryl always the answer. not sure at what time she would decide to use the epi pen but she becomes upset when i try to point out an epi pen moment.
I have also seen a lot of people turning for the homeopatheic treatment of a lot of things. I read on FB when we were talking about pediatricians, several recommended a practice that will go either way for you....traditional meds or "natural" approach.
I'm okay with "natural approach" for some things, but not anaphylaxis. Unbelievable.
This is a Waldorf school (almost needless to say). And the ma told me that Epipen is too much of a jolt for the child - Apis is much more gentle. What astounds me is that I know the Director and she has common sense and a history of anaphylaxis -- she was my own child's fierce advocate when he was there. So I cannot believe she would go along with this.
I say : Epi, Benadryl, then Apis. for pete's sake.
My standard response to the naturopathic cure is that if it actually worked, there is a huge amount of people who would stand in line for the cure.
When I hear about the lack of epis, I just want to scream. I would gently point out that reactions trump numbers no matter what her idiot allergist said to her. Okay, not exactly gentle. But frankly I have been there with two idiot allergists and my son almost died as a result (because barley can't cause an ana rxn ~)). I would tell her to ask her ped about those symptoms and find out what they say. I joke and call epi's the insurance that I hope I never have to use (yes, I know the seriousness of them but I also have a child who would be terrified if he thought about the life and death aspects thoroughly, though he does take it seriously if that makes sense).
Out of curiousity on the second situation - did the allergist say an epi wasn't necessary based on testing alone prior to the bad reaction? On that note, yes he may have been right. But if she told him about the reaction and he still failed to prescribe an epi pen, then she may have a lawsuit on her hands.
My understanding is that SHE had to beg one out of him and this is AFTER describing the reaction. I saw her doctor once or twice. I left because his advice was too lax. But I relented on my opinions on community boards after Mt. Sinai began okaying my kid for tree-nut challenges. However, I called them up once because I wanted to know if they would do an in-house tree- nut challenge (hoping to save myself the trip to NYC). The receptionist said -- we never do them. Some people are too afraid to give their kids peanut butter so he used to do them -- but he does not anymore.
Yep - afraid, allright.
So, now I have heard this story - I am no longer giving him the benefit of the doubt. I say -- go to the FA experts. don't mess with the local yokels.
http://www.drugstore.com/boiron-apis-mellifica-swelling-from-insect-bites-or-allergies-relieved-by-cold/qxp298535?catid=183018 (http://www.drugstore.com/boiron-apis-mellifica-swelling-from-insect-bites-or-allergies-relieved-by-cold/qxp298535?catid=183018)
is this the homeopatheic remedy she's using?
I can't go to the foremost experts given my location but I did finally find an allergist that specialized in food allergies with a dabbling in environmentals as opposed to the environmental drs who dabbled in food allergies.
It did take a lot of searching on my local allergy boards though to find one. A lot!
Quote from: hopechap on September 12, 2012, 07:45:44 AM
This is a Waldorf school (almost needless to say). And the ma told me that Epipen is too much of a jolt for the child - Apis is much more gentle. What astounds me is that I know the Director and she has common sense and a history of anaphylaxis -- she was my own child's fierce advocate when he was there. So I cannot believe she would go along with this.
I say : Epi, Benadryl, then Apis. for pete's sake.
I wonder if the school knew what apis is... BEE VENOM. Yeah, that's gonna help someone in anaphylaxis. ~)
and this is why i hate homeopathy. and most alternative practice. for every sensible person there is a nutter risking peoples lives giving out there snake oil, or in this case, bee juice.
I thank God for the person who told me to go to an allergist and that my son needed an epi pen. I had no idea in 1995 that milk allergy could be that dangerous. We found out he was allergic to egg, peanuts, and tree nuts-in the years thereafter. Thank goodness the person spoke up--not a lecture mind you--just kindly pointing some things out to me that I didn't know.
I don't know if I've alienated people over the years--I just know that I suggest they check with an allergist and see if they need testing and an epi pen.
I think what is frustrating is that you usually are in the position of saying the allergist/ped you see is wrong about this -- because there are a lot of docs handing out misinformation.
And yes -- I will continue to speak up. Its just hard, thats all. I've had this at the hairdresser before. Remember the lady getting her hair done that told me that her daughter is NOT allergic to peanuts -- it just gives her asthma?
The way to piss them off tactfully is to ask exactly how does it work. How does it counteract the effects of histamine, tryptase, blood vessels becoming flabby, vomiting, swelling, because I'd really love to know, too.