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PostPosted: Sun Oct 25, 2009 11:11 am 
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Joined: Sun Dec 17, 2006 2:38 pm
Posts: 16
If you had a child that was anaphylactic to peanuts, would you let anyone inject peanut solution into them during an anaphylactic reaction? No way, you say? Now replace the word "peanut" with "sulfites" , and it captures the situation for those of us who have anaphylactic reactions to sulfites. Doctors, schools, parents and legislators are all jumping on the Epi-pen bandwagon without understanding that the preservative used in this device is deadly to sulfite-sensitive individuals. Doctors are trained to use the Epi-pen even when they know the person is allergic to sulfites. Why is there no education on this subject? Do YOU know for sure if your child is allergic to sulfites? Do you want this risk?

Why is there no advocacy to use a nontoxic preservative in Epi-pen and Twinject devices? The manufacturers say nothing about the danger of the preservative, give inadequate or no warnings in their written material, and in fact advocate using it on sulfite-sensitive individuals. Sodium and potassium metabisulfite are particularly toxic and can cause anaphylaxis in immeasurably small quantities in sensitive individuals, and yet the manufacturers persist in using highly-lethal sodium metabisulfite in their epinephine injection products.

In the United States, the FDA changed labeling laws in 1986 after dozens of people died from sulfite-caused anaphylactic shock. Sulfites are the only legal food additive known to cause death in the United States. Sulfites are pervasive in food and commercial products; some of the worst offenders are wine and vinegar, potatoes, fruit juice, seafood, corn syrup, sauces and condiments, caramel color, food dyes, and about 1000 pharmaceutical products. Metabisulfites are also used in swimming pools, as bleach and fabric finish in carpeting and building materials, in photography, as carpet and fabric cleaner, and as industrial cleaner in commercial kitchens and food producers to descale water tanks and pots.
There is poor control over the use of metabisulfites in food samples used for allergy testing, so it is possible for a sulfite-sensitive individual to get a false positive during allergy testing that is mistaken for the carrier subject. It is common for a sulfite-sensitive person to think they have multiple food and chemical allergies because the poor labeling makes it impossible to isolate the true allergen.

I encourage Anaphylaxis Canada and other anaphylaxis advocacy groups to take on this issue, in several areas:
1) Stronger warning laws for pharmaceuticals containing sulfites, including Epi-Pen
2) Development of sulfite-free Epi-pen replacement suitable for school district use
3) Discontinuation of the one-size-fits-all anaphylaxis education materials that endorse Epi-pen as the only antidote for anaphylaxis. For some. liquid (chewable caps) or injectible diphenhydramine is the correct antidote.

I'm 52, and have been living with periodic episodes of sulfite-related anaphylactic shock for my entire life. I am weary of feeling like an outcast with no advocacy in the anaphylaxis or medical community. I am faced with surgery, and I find that the standard hospital anesthesia and pain products contain enough metabisulfites to kill me, and I am given no alternatives. I went through a dozen doctors who did not know the difference between a sulfite, a sulfate, and a sulfonamide. Where is the information for the grade school kids who are sulfite-sensitive? Who is there to tell them that a dechlorinated swimming pool or a lemonade can kill them? Are you or a teacher going to shoot them with a metabisulfite-laced Epi-pen when they suffocate?

Your advocacy is appreciated, thanks.


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PostPosted: Sun Oct 25, 2009 3:42 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6468
Location: Ottawa
Wow, sulfites are on the list of priority allergens but I'd never really thought of the fact that they are present in auto injectors such as the Epipen and Twin-ject. So , what do you use? Yes there is one size fits all training currently and unfortunately not everyone even recieves that. Many school balked at the introduction of Twin-ject although now many will give the first dose.

Policies and legislation varies from state to state and province to province (and territory). The best thing for parents to do is to sit down and make an individual anaphylaxis emergency plan with the principal. This should outline what to do in the event of an anaphylaxis reaction. To my understanding, the school will not give an auto injector unless one has been prescribed for that student.

Even with preservatives, the auto injector's expiration date is usually little more than a year. How long would it last without the preservatives?

You're right that little is known about this and I urge you to openly discuss your concenrs on allergy boards such as this. I know you are not alone.

How was it left regarding your surgery? Surely they won't operate with no anesthesia or pain killer will they? Keep discussing it and hopefully someone will offer a suggestion.

Good luck!

_________________
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Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Tue Oct 27, 2009 1:27 am 
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Joined: Sun Dec 17, 2006 2:38 pm
Posts: 16
Reply to your excellent questions: I always keep a card of Benadryl dye-free 25 mg capsules in my purse or pocket. These are chewable liquid capsules (dye contain metabisulfites, sulfite-allergic should use dye-free if available ). I know within a few seconds of exposure to metabisulfites, because my mouth swells and I go into severe respiratory distress. I'll chew 2-4 capsules and coat my mouth and throat and swallow, and this seems to slow down the reaction enough to keep my throat and lungs from closing completely. Diphenhydramine (benadryl) is an H1 blocker; I'm told that vitamin B12 and an H2 blocker like Pepcid taken together with diphenhydramine may work better than an H1 blocker alone, but I haven't tried this. If I'm in a situation where I'm at risk, such as a dentist appointment, I premedicate with Benadryl about an hour before the appointment.

For surgery, I assume that an anesthesiologist can add a diphenhydramine drip and cut back on the amount of anesthetic, but propofol contains sulfites and I don't think they have an alternative. For now, I'm exploring some high-tech noninvasive procedures for my condition. If I must have surgery I'll tell them to use local and not general anesthesia, warn in writing about the high risk, and ask for refrigerated products with no preservatives. The risk of general anesthesia is the highest--- there's no way to tell them that you are suffocating, and brain damage or death will be on its way before they figure it out.

There are hundreds of preservatives available for use in foods, and most food manufacturers have moved away from the use of metabisulfites to avoid product lawsuits. I'm completely baffled why the pharmaceutical manufacturers persist in using it.

In my case, I've gone into anaphylaxis from food, but also from new carpets, new cars, swimming pool water, freshly cleaned hotel rooms, room fresheners, beauty salons. Sulfites are ubiquitous. The sulfite-allergic individual is likely to be labeled an asthmatic, they will think they have many food and environmental allergies, and they will prefer to be outdoors rather than indoors. It's a difficult substance to avoid. -B


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