Talking Allergies

"He could die." That is what another mom (a nurse) would say to people. "Yes, we've been careful and lucky so far. It only takes one bite and he could die."
The same people who say "But...you've never had a reaction.", are generally the ones who want you to pity them that their child must go with out peanut butter for a few hours a day. Cry me a river! They would have a pretty hard time living in our shoes and going grocery shopping if they can't even imagine getting by for few hours with out peanut butter.
When we are talking life and death, it's too big a risk.

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

I agree with Susan. If a person has been prescribed an epinephrine auto-injector - which is life-saving medication - it's because there is a risk that an allergic reaction could kill them. And I think people have to be reminded of that from time time to time.

Look at that poor teen in the U.K. who had only mild reactions to sesame seeds... until his last reaction, which was fatal. (See http://www.allergicliving.com/forum/vie ... php?t=1627 for that thread.) There is no predicting a reaction. A person could have a mild reaction one time and a very serious one the next. Until the day comes when the researchers find a way to predict how severe someone's reaction could be, we have to assume the worst and take the appropriate precautions.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

I think it's important to distinguish between "mild allergy" and "mild reaction". I recently read this quote:


Taken from: http://www.todaysparent.com/healthsafet ... nt=1089969

Because there is no way to determine how a child is going to react from one allergic reaction to the next, it's important that we prepare for the worse case scenario. It's why people with food allergies should always have epinephrine on their person. If we understand that allergic reactions are unpredictable and that test results like the RAST do not determine the severity of an allergy or even the severity of a reaction - then I think that it's best not to classify a food allergy as "mild" or "severe". People might get caught up in the "mild" reaction possibility and not take the situation as seriously. I think once we can explain the unpredictability of food allergy to people but emphasize that the worse case scenario is death -- I think people will sit up and listen. I too struggled with "stepping on people's toes" when it came to my son's allergy and seeking accommodation - but reading the above quote has helped keep me focused on it's necessity. When my son had his first anaphylactic reaction in August it redefined yet again what we did as a family to keep him safe and reaffirmed why we take the precautions we do and why we advocate so strongly on his behalf. It does get easier!

A well-known Canadian allergist recently said that being a little bit allergic to peanuts is like being a little bit pregnant... You either are or you aren't!

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma

I wish allergists would hand out literature that would explain that food allergies are unpredictable, that once you are diagnosed, you must avoid the allergen at all cost, and as a last resort, you have the auto-injector in case of accidental contact and it must be administered at the very first sign of a reaction. Period. Simple, clear instructions.

Tara, you should write down a few lines that would explain in no uncertain words the seriousness of the allergy and learn and use those lines every time, like it only takes one-one-thousandth of a peanut to cause a reaction. Don't worry about stepping on toes, they'll recover quickly! Your child's well being is more important than their toes.

Ethansmom, I also wish allergists would explain to people that skin tests and RAST results DO NOT indicate the severity of an allergy, they merely confirm the presence of an allergy, along with the patient's history.

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

I second that!! Even though our allergist agreed with the fact that RAST results do not indicate severity, he still treats one of my son's allergy to egg with a cavalier attitude because his RAST level was ONLY a low positive... the doctor waves aside the fact that his skin test was positive, he has asthma and that he's had several contact reactions ranging from mild to quite serious, and keeps focusing on the fact that the RAST was below a +3. So even though he agrees that RAST doesn't indicate severity, his recommendations all seem to come from surmising that the allergy is not severe based on the RAST results????? One of many reasons, we need a new allergist.

Also, when we first had our sons RAST tested, the doctor's recommendations were all ,based on the RAST levels indicating that their allergies were not severe (again low positives for both of them)...so despite their case histories, both with dramatic contact reactions to eggs and peanuts, vomiting and hives if I ate eggs and then breastfed them , and one who reacted with swollen lips and hives to most legumes, we were NOT prescribed epipens, nor given any other education or help, other than told we could avoid eggs and peanuts "if we wanted to". We were also told that both were definitely NOT allergic to dogs after negative RAST's, even though they both react violently within minutes of being around one?!?

So I think that the misinformation about exactly how to interpret RAST tests is also rampant within the medical community as well. Or maybe we've just had bad luck ?

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1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema

Sorry, I got on a rant about RAST testing, and forgot what I had wanted to say .

Tara,
I have found that when I have difficulty getting people, such as school officials/staff and extended family members and friends, to really "get" the seriousness of the situation re. my sons' allergies, that it's often helpful to refer them to third party information, such as websites and magazine articles. There are great rescources all over this forum.
For example, it may be a little harder for the school to view you as overprotective, when they realize that the recommendations you are making for your son are the same as the ones outlined by the CSACI.

http://www.allergysafecommunities.ca/de ... p?catid=11

And I sent this article to friends and family, and one of my friends who has always acted bemused or impatient with how vigilant I am with my boys, had a "lightbulb" moment about how scary it actually is for us, and how careful we HAVE to be.

http://www.todaysparent.com/toddler/hea ... 60&page=1#

My mom even called to say that she was throwing away the mayo, putting the peanut butter in a plastic bag in the basement, and that her cheese whiz may have gotten contaminated with PB, so that was getting thrown out too, before we come at Christmas . So sometimes, information from someone other than the "hysterical parent" works like a charm.

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1 son allergic to eggs, peanuts, green peas, chick peas, lentils and tomatoes
(avoiding tree nuts and most other legumes too)
1 son allergic to eggs, and has outgrown peanuts
Both with many environmental allergies, asthma and eczema

I really don't think you're the only ones with bad luck. I certainly acknowledge that there are a lot of great doctors out there...but boy, when you get the bad one...
I don't know if some doctors just "assume" that patients will ask the questions if they have them, or what? I really wish that doctors would just take it for granted that their patients are at ground zero and know nothing about allergies when first diagnosed and then go from there. Most people's heads are spinning when they first learn of their own or their loved one's diagnosis and don't even necessarily know what to ask. I don't know what it's like for people with other medical conditions, but I've found that I had to take the bull by the horns and find out information for myself. I had to do the digging, the reading, and then go to the doctor's office armed with questions. Thank goodness for the internet!
twinmom, I think you're absolutely right about getting a new allergist! I guess that we have to remember that even doctors have issues and see the world through their own impressions, attitudes and beliefs. It's pretty bad that he completely contradicts himself and doesn't see it! Good luck getting a new one!

Thanks for all of the responses here - I'm learning a lot!
Connor's allergist told me that his allergy was a 1 on blood test during the first blood test, a 2 on the second (6 months later), and a year after that one (just a couple months ago), he said it's a 5+. Maybe I too have been a bit misinformed because when he was first diagnosed the doctor said to cut out peanuts, but not to worry much about things that may contain (because he said the results were so mild it was possible there was no allergy). After the 2nd test he prescribed the epi-pen and told us to be careful. After the last test he said, "No it's really serious". While I know that those results don't predict the reaction, from what the doctor said about the test results... I guess he only started making it seem like a big deal since this last blood test. Maybe we should be looking for someone new too!

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Mom to 2 boys:
Connor, 5, asthma, allergic to peanuts, cats, dogs, dust mites, and summer moulds
Eric, 3 1/2, no allergies

My friend gave me a copy of her daughter's RAST results to show me how the scale works, and the result sheet states that "IgE concentration in positive sera may not correlate directly with severity of symptoms".

Does the allergen level in the RAST indicate the severity of the allergy or not? I think it would be a good question for the "Ask the allergist".

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15 year old - asthmatic, allergic to cats, dogs, horses, waiting to be "officially" diagnosed for anaphylaxis
12 year old - asthmatic, allergic to tree pollen and mold, OAS
Husband - Allergic to amoxycillin
Self - Allergic to housework only

Ok Allergy Parents...I have another peanuts in the school dilema. I thought I would add to this thread as it is in a similar vein to Tara's story. I hope you all don't mind.

Anyway, as many of you know, I have been fighting tooth and nail to get changes with my 8 year old's classroom. I either want peanuts out of the classroom or adult supervision. There will not be a reduction in any food allergen in our district's schools, but the class was finally finally given an adult 'duty' to eat in the classroom with my son's class.

The usual situation is that the class is monitored by older kids in Grade 7. This means a child is responsible for recognizing a reaction and finding one of three adults walking through the halls during the 20 minute lunch, which I think is a dangerous set-up. Although the child monitor is no longer responsible for this task in my son's classroom, they have decided to continue having older kid monitors. In all this arrangement I have also been told by the principal that I will be contacted if there are any concerns in the classroom. Well. . . yesterday my son came home with a concern.

He and his little buddy are really similar: they have the same hair cut, they are on the same hockey team and they are just two peas in a pod. Well, the grade 7 monitor noted this, and said all the things he could do to tell them apart. After a few comments, and being fully aware of my son's allergy, he came up with something like "How about I spread peanut butter on both of you and see what happens!" Well, my son said he walked away from this comment.

LUCKILY the adult in the classroom heard this conversation and took the Grade 7 student privately aside to tell him not say such a thing and why. Afterwards the adult came and asked my son if he had 'been offended". Good on my boy, he said YES.

So. . . my principal has not let me know about this situation, only my son. Is he telling me everything? Can I get a *guarantee* that older child will never, ever be alone with my son -- he THREATENED him with harm. If it were a fist to the face, I would get action, wouldn't I.

But part of me also sees I have yet another reason for needing that adult in the room and how it is more than just having the allergen present. What if that conversation had happened without a reliable witness? Really, the adult took it as a teaching moment, although the older child did not apologize.

So here I am again, wondering what can be done beyond having more education for people who do not have to live with allergies. I am starting to have some luck with my meetings with the health authority and the school districts -- we are doing some good there. But once again it comes down to the fact that is not enough/what I need. I want to know that my child is safe in his own classroom.

Sigh.
Caroline

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son anaphylactic to peanuts

I really think you need to follow this up with a written communication to the principal advisin g that you are aware of this incident and pointing out how lucky that this happened after the change to adult supervision. It identifies just how fool hardy it is to have an older child watching the students because the older child is simply not responsible enough nor is he emotionally ready for such a request-to ensure that your child does not die during the most lifethreatening activity the school can afford him (eating in an environment with many unknown variables).
I would comment that you are unsure why the principal did not contact you directly and you had to hear about this from an 8 year old child. That the adults must communicate effectively and that it starts to erode the trust that you are trying to establish with the principal.
I would ask the principal to explain what he/she has done about this incident and what he/she plans to do in the future.
Obviously the school has to better educate the students-how ironic!
I would cc this communication to the superintendant and be prepared to cc it to the newspapers if need be!

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy and green beans) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: Oral Allergy Syndrome, Allergic to Birch trees

I second what Susan has said. Definitely get a paper trail on this. That is all so unexceptable.

On a positive note, I would make sure to thank the adult who intervened and turned the incident into a teaching moment. That person should get some good positive reinforcement and thanks.

K.

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Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma