While I'm very excited about the news about the peanut allergy study I mentioned in the previous post, I'm also a little unsettled. This treatment completely goes against the current medical advice for food allergies, which is strict avoidance. It's just such a shift in thinking, and it obviously shows promise, but I can't begin to imagine the fear that must have gone through the heart of each parent of each participant in the study the first time the treatment was administered. Some of the participants did have to drop out of the study because they couldn't tolerate the treatment. It was a small number, but it happened nonetheless. If this does end up being developed into a widely-available treatment, will I be brave enough to enroll Bryan?
And there is also a part of me, a very selfish part of me, that is worried about what to say when I talk with people about the study. I want to share this news with everyone who knows what we have been through with Bryan. But then I think about explaining the details of the peanut treatment, which involved dosages of actual peanut protein. And I begin to worry that certain people will point out to me that it is the opposite of our current strict avoidance, and that maybe we have been doing more harm than good. (I have actually had people mention in the past that I should relax with Bryan's food because a little bit of exposure might help him build up a tolerance.) Or that other people might take the study to mean that we don't need to be as stringent with food preparation, so they don't need to read a label quite as carefully here or there.
I know that I'm being ridiculous, really. I know that I can explain that the peanut dosage was very strict- only 1/1000 of a peanut initially, and very gradually increasing over the course of the study, which has been in progress for several years. I know I can explain that everything was administered under strict medical supervision, just in case an allergic reaction did develop. I know that I can explain that there is no way to determine the exact amount of a "trace" of peanut in any particular box of cookies- one cookie could have the equivalent of 1/100 of a peanut while another has 1/5 of a peanut. I know I can explain that this only applies to peanut allergy, and that milk and egg allergies may work via a different mechanism. And I know I can explain that this study hasn't even been published yet, and that it is going to be very thoroughly reviewed and critiqued once it is. I know logically that anyone who really matters will understand all of this, and continue to support us and not question as I continue to obsessively read labels and wash cutting boards. But I still worry, because that's just the way I am.
And there is also a part of me, a very selfish part of me, that is worried about what to say when I talk with people about the study. I want to share this news with everyone who knows what we have been through with Bryan. But then I think about explaining the details of the peanut treatment, which involved dosages of actual peanut protein. And I begin to worry that certain people will point out to me that it is the opposite of our current strict avoidance, and that maybe we have been doing more harm than good. (I have actually had people mention in the past that I should relax with Bryan's food because a little bit of exposure might help him build up a tolerance.) Or that other people might take the study to mean that we don't need to be as stringent with food preparation, so they don't need to read a label quite as carefully here or there.
I know that I'm being ridiculous, really. I know that I can explain that the peanut dosage was very strict- only 1/1000 of a peanut initially, and very gradually increasing over the course of the study, which has been in progress for several years. I know I can explain that everything was administered under strict medical supervision, just in case an allergic reaction did develop. I know that I can explain that there is no way to determine the exact amount of a "trace" of peanut in any particular box of cookies- one cookie could have the equivalent of 1/100 of a peanut while another has 1/5 of a peanut. I know I can explain that this only applies to peanut allergy, and that milk and egg allergies may work via a different mechanism. And I know I can explain that this study hasn't even been published yet, and that it is going to be very thoroughly reviewed and critiqued once it is. I know logically that anyone who really matters will understand all of this, and continue to support us and not question as I continue to obsessively read labels and wash cutting boards. But I still worry, because that's just the way I am.
1 comment:
I can understand your anxious feelings re: trying to explain these recent medical findings to "outsiders" - as those of us who don't have a child with allergies naturally all are to this scary allergic world. People can be so unnecessarily cruel in their "I told you so" and judgments. I'm cautious but excited with you - that the findings would be reviewed and approved for a wider group of patients and allergens and that Bryan would either not need the treatment or benefit greatly from it! Until then keep scrubbing and reading!! :)
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