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PostPosted: Wed May 14, 2008 10:21 pm 

Joined: Tue Nov 07, 2006 6:40 am
Posts: 51
Location: Victoria
I'm not really sure where to begin or even what my specific question is so I'm hoping as I start to right I'll be able to be more articulate than my muddled thoughts.

I've read the recent chart in the Allergic Living Magazine which if I read it correctly said that the only 100% accurate allergy testing is to challenge it with the real deal. We've started taking my daughter for allergy testing again this year as we thought by now she must have grown out of a few more foods. All the skin and blood tests came back negative....but then there's that article that suggested they may not be accurate. My gut instinct is that she may have outgrown some but not completely others....and possibly is no longer anaphylactic, but who can be sure without the challenge. So, we've started challenge tests in the allergists office. She did well with the miniscule amount of egg she allowed in her mouth finally and it was decided that while we're challenging her brother with eggs later in the month we would start having eggs in the house again. she wasn't convinced that she wanted to eat them yet. It's understandable, I think, that it's going to be an adjustment for her after so diligently avoiding them for so long. However, she decided she was going to help peel hard boiled eggs but then got itchy hands. I'm wondering if this is anxiety or allergy or????

I read the other article too about teaching your children about allergies. What really struck me is, what do you do when the people around you, whether they be at school, family, whoever, don't take it seriously. This has happened to us and we've had to say those dreaded words, "NO, she could die." We're not suppose to say it but what do we say so people take this seriously.

We've asked for help around some other needs my daughter has and one of the concerns we've raised is around anxiety. Her anxiety around allergies has been almost exclusively related to areas where other people don't get it, with the exception of recently because I've misread two different labels. I'm exhausted and making mistakes. One of the concerns we've raised is that she hasn't always been responsible for her own allergies. Ack, it seems that no matter what we do, we're doing something wrong. We're educating her too much and so we're creating anxiety. We're not educating her enough, so she's not being responsible. There have been a number of situations where she feels she can't trust the adults she needs to so that she can feel safe. She's commenting that she feels these adults feel her allergies are a pain and her mother's requests are even more of a pain. I don't know how to help her.

This may all be a mute point if she has indeed outgrown the more serious allergies but we're not done challenging each food, we're really only just begun. It was suggested today by a counsellour that we should be telling the school, giving them an update on the allergy testing, even though the challenge testing isn't completed. My thought is NO WAY! Not until we're completely done and know for sure. Am I out of line? Shouldn't we know for sure exactly what we're dealing with? We haven't had a great experience in this arena so far, I'm not sure why would suggest cautions may not be needed when we've struggled so hard to have precautions put in place for so long.

Maybe I'm out to lunch. I'm sort of open to hearing that I am...although admittedly I'm feeling a bit defensive today.

However, all that said, the allergy mistake I did make was with one of her originally diagnosed anaphylactic allergies. She didn't have an anaphylactic reaction. She did get dark, dark circles under her eyes and there was only a minute amount of this food in her meal. She didn't feel well afterwards. The itchy hands after peeling eggs does make me hesitant to think she's in the clear, although I do realize it could be anxiety related too. She's still just allergic to a bunch of things and it was suggested that all these things need to be retested too and evidence given to the school. If we know because she's had reactions, albeit not anaphylactic, why would we need to test them? Am I off track?

If there were a couple of magic buttons to push it would sure make life easier. The first button would be the "automatically educated" for anyone who didn't take allergies seriously. The second would be the "delete anaphyaxis". The third would be the "Easy chair with a beverage of choice, whenever needed" button. :wink:

Well, that's my not so articulate post.

 Post subject:
PostPosted: Thu May 15, 2008 6:33 am 
Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6616
Location: Ottawa
This is what I got from your post. All very real concerns for all of us parents:
Which test to take and how often?
Is this a true reaction or anxiety?
Does this reaction warrunt epinephrine = is it an anaphylaxis reaction?
How do I explain the need to take this seriously without scaring the child or sounding like a crack pot?
When will she outgrow, will she outgrow, when she does how do I get her to eat?
How do I make my child understand what they need to do to keep themselves safe?
How can I get others to understand what they need to do to keep her safe?
Why won't any of these people listen to me?!
What do I tell the school...will they understand?

How old is your daughter?

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

 Post subject:
PostPosted: Fri May 16, 2008 4:28 am 

Joined: Tue Nov 07, 2006 6:40 am
Posts: 51
Location: Victoria
Yes and no.

I'll try to reask them, lol, after a day of sensible thinking and provide a more succinct example.

She tested negative for eggs on both the rast and scratch test, then on the challenge in the allergists office. Then at home decided wasn't ready to eat eggs but would peel them for us for our egg salad sandwiches (a new treat in our house, allergist said we could have eggs in the house now :D ) However, she got itchy hands when she peeled them, no hives. Could this be anxiety? Allergy still exists?

We're still challenging the other anaphylactic foods in the allergists office. It seems it's going to be a long process. We're okay with that. However, it was suggested to us that we should be telling the school that she's no longer allergic. However, we're still challenging the other foods and given that the article in allergic living last month stated that the only 100% test is to challenge the food, it doesn't seem sensible to say anything until we know for sure and challenged all the serious allergens. Does that make sense? I'm not comfortable doing otherwise but was given the impression I'm being too cautious. However, given how hard it is to have allergy precautions put in place it seems best to leave the precaustions/protocols in place until we know for sure. There are other kids there with allergies as well so they need to be in place anyway. We're already labelled pain in the tuckus parents for expecting that at the very least the District policy be in place...the Student protection order is another matter entirely. Who's accountable for making sure Districts are accountable for this anyway? It seems they make rules but then it's forgotten about...and no one's more the wiser.

Yes, how do you get people to listen and take allergies seriously? We must people need to hear those words, "This person could die if you keep being a nimwit and don't take this seriously."

I'm not sure I'm being any more articulate tonight.

oh yes, she's 13. It does seem she is beginning to outgrow a lot of her allergies. We're thrilled. However, she has a lot of anxiety around this. She wants to know for sure, through challenging (if she must, it kind of freaks her out) before she tells anyone because she's concerned they'll put her at risk as they've done in teh past when she was definitely still allergic. We're a bit concerned as well.

I guess my other question is, the chart about allergy testing, in the allergic living implies that all the allergy testing allergist do, can be meaningless if they aren't 100% accurate. I imagine that doesn't make allergist too happy. I feel less comfortable trusting test results than ever. How do other people feel about this information?

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