I had a couple more nagging thoughts before I give this sesame thing a rest again ....
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the idea that allergists are willing to tell us "Avoid, Avoid, Avoid" but then when I approach them about labeling issues they tell me they either don't discuss them with patients or patients don't come to them with the concerns and it makes me wonder, you know? It took us three tries to find an allergist that wasn't casual about the idea of anaphylaxis, they had this notion that if you have the epi you'll be fine but I kept saying "I don't wan't my child to react in the first place."
Allergists are probably not trained in label reading. I think being an expert in food allergies in terms of diagnosing and anaphylaxis management is the main thing most do. I think most parents of food allergic children end up being more expert in everyday food allergic life, which is not a criticism about allergists. It is just natural.
I do think all allergists and food allergy organizations should make it VERY clear that if you deal with non-top 8 you MUST contact companies to be sure the food doesn't contain your allergen or you can't know. They should make it very clear that you can not tell just by label reading alone. That wasn't made clear to me and my son had multiple reactions. I learned that the hard way.
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Re: Food Allergen Labeling: Using "common sense" when assessing safetyRe: Docs helping patients to surf the internet
Tweeted by @pash22
"Can patients get and use the information they need?"
http://www.kpmg.com/global/en/issuesandinsights/articlespublications/what-works/creating-new-value-with-patients/articles/pages/can-patients-get-and-use-information.aspx?utm_medium=social‐media&utm_campaign=2014-hc-what-works&utm_source=twitter&utm_content=gbl+2014+jul+27&utm_term=info+tw+promo
Patients need information that is often very different from the information that doctors think they need.
Our research into patient groups across the world consistently showed that, what patients felt was crucial information was ignored by clinicians. In fact for some patients groups the biggest gap between what patients needed and what they got was information.
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Re: Let's talk about anxietyWith FA, we know that the majority of reactions can be prevented, but it takes such constant vigilance which can be stressful. Plus, we have incomplete or sometimes incorrect labeling information to work with which, I think, is part of the reason FA people are so active online (which manufacturer/product do you trust type conversations). There's a million little risk-benefit calculations we do.
Re: Let's talk about anxiety
Can allergists diagnose anxiety? Can mental health professionals truly understand the FA life and how some behavior (that may first appear to be over-the-top) might have a rational basis?
Unfortunately, while both groups SHOULD have insights, they often don't have a full enough picture to really distinguish for an individual just when anxiety crosses from 'rational' to 'irrational' but it doesn't stop them from making pronouncements about it. The best allergists seem to live with it themselves-- otherwise, they can't really fully grasp what it is to live with FA day after day. Harsh, but true. Similarly, mental health professionals too frequently seem to think that "food allergy" that can result in death is a "rare" thing that can't possibly apply to YOU... in which case, you need help with your "irrational" beliefs.
Have you ever been unfairly accused of being anxious?
Absolutely. Most hurtfully by my spouse and closest friends, by my mother, even. I have been vindicated many times over in the years since, but yes-- this was lonely and horrible beyond my words to explain it. I do think that this experience has left me with PTSD, every bit as much as any of the horrific life-threatening reactions that I have witnessed.
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Re: Social MediaTweeted by @michaelseid11
"Kim Vlasnik - ePatient Ignite! Talk"
https://m.youtube.com/watch?feature=youtu.be&v=HwiIZ8TnZJw
1:16
The hard part of living with diabetes for me is the psychosocial impact. It's the cognitive burden of trying to manage a disease so insidious and pervasive and never getting a break from it.
2:30
my disease is not a punch line
3:47
finding a community of people who "get it"
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Although many try, docs often can't "get it".
Tweeted by @kevinmd
"The cancer metamorphosis is different for each patient"
http://www.kevinmd.com/blog/2015/02/cancer-metamorphosis-different-patient.html
No matter how much family or medical caregivers try to empathize, to connect, to understand, surviving cancer is a deeply changing and highly personal experience. The patient I quoted at the start is a gifted, loving and highly experienced cancer provider, with three decades at cancer’s bedside. None-the-less, she was astonished to experience the transformation in her own life, which is before and then after cancer.
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Book:
Being MortalAuthor: Atul Gawande
Page 2
"What tormented Ivan Ilyich most," Tolstoy writes, "was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill
death is not a subject that his doctors, friends, or family can countenance
No one pitied him as he wished to be pitied
comforted
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ok, so where am I going with all of this ....
some of my thoughts ...
1) My opinion is that allergists need to understand labeling rules & limitations in order to best advise allergy families on avoidance. Especially for the non-top8, the risk of reaction should be balanced with quality of life & family mental health considerations (imo). Unless medically necessary, pls don't set almost impossibly high avoidance standards.
Re: Oral Food Challenges - Links & General Info2) Docs & orgs sometimes complain about overstepping patients/forums ... at least in my case, I was somewhat a monster of their own making imo .... my needs were not being met ... in terms of "how to read a food label for sesame" education & for making advocating for better sesame labeling a priority.
3) Hopefully, sesame will get labeled. However, for those with other non-top8s, docs & FA orgs shouldn't leave patients/families feeling alone. Provide them with education on label reading. Empathize with & acknowledge how difficult their situation is. One of the worst things is when people misjudge risk and think that you are crazy ... they don't understand how difficult the situation is ... they think that a quick look at the label is all that is needed (which is usually not the case with non-top8s unless dealing with a high threshold).
So, finally, I'd just like to include a reminder to patients that I'm not an expert and that they should ask their allergist about any questions they may have about things discussed in this thread.
That.is.all.for.now.