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We should also keep in mind that many people do outgrow food allergies & they never come back.
I was formerly known as "lala" on the previous site. I had problems transfering my account over, so here I am if anyone has any questions.
It's funny- I didn't even read this over again because I didn't want to re-live it. It was such a horrible experience for our family.
Pray for ds- peanut challenge tomorrow: I can't believe this day is finally here
lala's DS peanut challenge, and the subsequent redevelopment (?) of the peanut allergy.
This is a thread that parents SHOULD read when undertaking a food challenge of any kind.
If you have no symptoms, food allergy can be ruled out.
My question: as allergic reactions aren’t consistent, if she doesn’t react or has only minor symptoms on the day of the oral challenge, can we be certain this allergy is truly gone? Would you continue to carry epinephrine, at least for a while?
It’s important to note that the children whose peanut allergy resurfaced generally are those who avoided peanut for a prolonged time following their oral food challenge, or they only consumed products with trace amounts, and then experienced symptoms when concentrated peanut (peanuts, peanut butter) was finally eaten.
False-negative open challenges occur 1-3% of the time
We should also keep in mind that many people do outgrow food allergies & they never come back.
Agree! My son has out grown egg, sesame, anchovy, soy, hazelnut , walnut and barley. The only one that has resurfaced is peanut....You just need to be on the alert...just in case-it can happen but not always.
Lala/Justme,
I just want to thank you again for sharing your story. My dd passed a food challenge a couple of days ago, even though she had some hives on her face. The allergist told me skin reactivity can be one of the last things to be outgrown. The allergist was no longer going to support keeping Epi's at our new school (1st day in Sept.) since she passed the challenge.
However, partly thinking of you, I asked them to reconsider and they are now going to allow me to keep them at school during this transition period. I am hoping that she has truly outgrown, but I will keep a close eye on things.
K
Thanks for that. It's the reason I posted. I just didn't want any other child to go through what mine went through. I'm not saying people shouldn't challenge, but just to make others aware of things that could happen.
I was formerly known as "lala" on the previous site. I had problems transfering my account over, so here I am if anyone has any questions.
It's funny- I didn't even read this over again because I didn't want to re-live it. It was such a horrible experience for our family.
:Hi. Have recently joined the site. I really feel for you. We are all trying to do the best for our kids and it is difficult because science does not know the right way, yet. Our son was very allergic to egg and dairy (outgrown egg but still contact reactive dairy). Never had a peanut reaction or positive RAST or postive SPT. Turns three. Wait till 5? More research saying start younger? So we took the middle approach and started at 3. Full body hives. Argghhhh....and the guilt. Anyway, Rast peaked at 4 and went to <.3 before bumping up to .65. Going for SPT and ara h2 and then considering challenge. I am curious, did you have skin prick tests done or just the RAST prior to challenge and was ara h2 available?
I hope you are feeling ok. Time heals a lot.
Didn't want to quote the entire post, but.....
"It’s important to note that the children whose peanut allergy resurfaced generally are those who avoided peanut for a prolonged time following their oral food challenge, or they only consumed products with trace amounts, and then experienced symptoms when concentrated peanut (peanuts, peanut butter) was finally eaten."
Obviously my child was not one the ones they consider under the "generally" category. We did not avoid for a prolonged time following the challenge.
@AllergyKidsDoc puzzle for you have you ever seen a child who had passed baked egg 5 years ago. Then pass whole egg challenge. To only
@AllergyKidsDoc to only go anax to ALL egg 2 days later?
@AllergyKidsDoc I can't find anything one it. Son on baked egg for 5 yrs. passed French toast egg challenge. Had hard boiled egg fine
@AllergyKidsDoc next day had Scrambled and ended up in ER. 5 days later have bake good also in er. Spoke to dr. Puzzled.
@AllergyKidsDoc it was done at Sinai. And he had 2 hard boiled eggs after challenge fine.
@AllergyKidsDoc the puzzle is because he was on baked Egg for many years even things like matzoh balls. It's so odd.
@AllergyKidsDoc and the research shows this doesn't make sense
@AllergyKidsDoc ugh
@AllergyKidsDoc I guess I will ask to do another challenge in a few weeks. Although I think they think I am crazy. Thanks.
When patients report allergic symptoms following a passed oral food challenge, pls do not assume "just anxiety" w/o a repeat objective OFC.
If #FoodAllergy patient/family has unhealthy anxiety, they shld B treated w/ kindness & compassion & referred 2 #MentalHealth prof 4 help.
So once you pass a food challenge, it's what we call the Gold Standard. It's as definitive as anything we've got that you are no longer allergic to that food. The only food that has been proven, that has been shown, in the medical literature, in the research to where someone passes a food challenge and can develop the allergy in the future is actually peanut.
to my knowledge, there's no other reports in the literature of people passing food challenges and then experiencing a recurrence of those allergies in the future.
so I would reassure you with food challenges, if you pass, if you're allergic to food, you pass a food challenge, your likelihood of recurrence in future is, never say never, but exceedingly exceedingly low with the exception of peanut, and with peanut if you keep it in your diet, you can make that risk of recurrence much lower
having regular exposure does help prevent recurrence of the allergy, or looked at the other way, not having regular exposure puts you at some risk of getting the allergy back. Sesame would be kind of like peanut in this context.
Also, how likely is it that you pass the challenge in the office and have a reaction ... say a week later?
I would say that's very unlikely. What could happen is you could pass the challenge, introduce the food in the diet, and then notice a week later my excema is a lot worse or you could have kind of a delayed reaction that's caused by a different type of the immune system and if that happens, you want to call your allergist.
Tweeted by @SusannahFox
"Talks in Stockholm – the Land of Nobel"
[url]http://www.epatientdave.com/2014/08/28/talks-in-stockholm-land-of-nobel/[/url]
[url]https://m.youtube.com/watch?v=T2S6TYLarTk[/url]
4:29QuoteThis is useful information, but you know what, it does not exist in the scientific literature.
4:53QuoteSomething has changed.
Bias 1: Most published research has had minimal patient input
Evidence generated by clinical research will depend on who asks the questions, who defines the outcome measures, who interprets the findings, and who disseminates the outputs.
Bias 2: EBM’s hierarchy of evidence devalues the individual patient experience
The individual case report sits at the bottom of EBM’s hierarchy of evidence. Indeed, we are explicitly warned not to trust ‘anecdotal’ evidence
Much of the EBM literature relies on (and its practitioners must to some extent accept) fixed categories and definitions of what a disease is. Qualitative research can inform new categories and definitions if researchers are open to this possibility. Patients with depression, for example, who took selective serotonin reuptake inhibitors, were ignored for years after they raised concerns about side effects such as ‘electric head feeling’ that did not fit the existing ‘evidence-based’ model of the drug’s effects or the formal categories of adverse events used in standardised post-marketing surveillance [36].
Bias 4: Power imbalances can suppress the patient’s voice
Examples from these studies included doctors dismissing symptoms that were not explained by blood tests, ignoring patient experience that did not correspond to textbook descriptions, using medical jargon to re-establish a position of power, and actively withholding information or services. Patients learnt to conceal their own expertise and treatment decisions in order to comply with medical expectations and to avoid professionals becoming “patronizing or angry” [50, 51]. All these might be considered as examples of what has been called ‘epistemic injustice’ – that is, the numerous and often subtle ways in which patients may be dismissed in their specific capacity as knowers [52].
Bias 5: EBM over-emphasises the clinical consultation
First, we are highly social and mutually dependent beings. Our interactions with medicine often involve others (who may be present or absent during the consultation) [62, 63]. Managing a chronic illness involves work, which is typically distributed across a network of family and friends [3, 8, 31, 64–66]. Doctors generally know this, but their ‘evidence-based’ discussions with patients about the options for tests and treatments rarely take full account of which people and perspectives the patient would like to bring into the conversation, when, and how; this is of more than tangential significance.
Second, the overwhelming majority of decisions about a person’s chronic condition are made by that individual, their carer(s), and their lay networks without the input of professionals [10, 67]. The knowledge of how to manage one’s own illness overlaps only partially with the knowledge that doctors draw on to manage diseases; it also includes the embodied, tacit knowledge of particular symptoms and the body’s response to treatment
Tacit knowledge is the stuff of communities of practice – accumulated through years of experience and exchanged through stories
Herein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another [80–83]. Hence, EBM’s accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.
"We’re no longer living in an era where the medical community gets to hold information in" - @ashishkjha @ProPublica
When we believe we have experienced something directly, it is difficult to impossible to convince us otherwise.
The first is that anecdotes should be documented as carefully as possible. This is a common practice in scientific medicine, where anecdotes are called case reports (when reported individually) or a case series (when a few related anecdotes are reported). Case reports are anecdotal because they are retrospective and not controlled.
The second criterion for the proper use of anecdotes in scientific medicine is that they should be thought of as preliminary only – as a means of pointing the way to future research.
Qualitative studies help us understand why promising clinical interventions do not always work in the real world, how patients experience care, and how practitioners think.
Few research topics in clinical decision making and patient care can be sufficiently understood through quantitative research alone.
The intent of this work and report is to stimulate learning and knowledge in another relatively new and important area of patient safety – the engagement and partnering of patients and/or their families who have been harmed in healthcare to help make the system safer.
For most patients or family members, the fundamental motivation is simply to prevent this event from being repeated; preventing harm to others. “It didn’t matter what our own personal story was but we just didn’t want other families being put in situations of harm.” This is reinforced by working with other like-minded people in safety initiatives (including other patients/family members as well as healthcare personnel).
Tweeted by @AllergyNetQuoteDr Google: 1) Disregard if anonymous 2) Check primary source 3) Check author qualifications 4) Discuss with your medical doctor
The project fits the National Institute for Health Research INVOLVE definition of research for patient benefit: ‘research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them.’
Conclusion: More than one quarter of all children with a negative FC test result did not introduce the food. The FC test in its current form does not achieve its objective for this group of children.
Symptoms during introduction at home had a significant influence on failed introduction, in one fourth of the children. This factor is also reported by van Erp et al., Eigenmann et al. and Flammarion et al. [3, 4, 9]. Adverse events during introduction after a negative FC test have been documented for failure in 12.7 % of the cases by Eigenmann et al. and in 5.5 % by Flammarion et al. A possible explanation for the relatively high occurrence of symptoms during introduction at home might be that the introduction dose was higher than the final dose of the FC test. All FC tests were performed with a recipe described in the study by Vlieg-Boerstra et al. [9]. The term failed introduction is thus debatable; the children who experienced symptoms during introduction might react to a higher eliciting dose than used in the challenge. Consequently, an open challenge with higher doses at the department should be performed to identify susceptibility to higher doses and at the same time convincing for the child and parent that the allergen is not harmful. Another reason for the more frequently occurring symptoms during introduction at home could be the differences in intrinsic and extrinsic factors between clinic and home and the food matrix [8].
RATIONALE: The false-negative rate of double-blind oral food challenges (OFC), as defined by a positive open-OFC following a negative double-blind challenge, is reported to be ~3%. Despite the fact that open challenges are more commonly used in the everyday clinical setting, there are no studies examining the occurrence of false-negative open-OFC. METHODS: We performed a retrospective medical records review of all open OFC performed in our outpatient center from January 1, 2009 through December 31, 2009.
RESULTS: A total of 334 challenges on 276 patients were reviewed. The majority of challenges, 253 (76%), were negative. There were 4 cases (1.6%) in which patients developed symptoms consistent with an IgE-mediated allergic reaction at home to the challenged foods after appearing to pass an open-OFC: 2 were to soy, 1 to egg, and 1 to cashew. Time to symptom exacerbations following the negative challenges ranged from 6 hours to 5 months. In the case of symptoms occurring 5 months after the challenge, the patient had been eating the food on a regular basis until redeveloping symptoms, which were confirmed by repeat challenge. Three of the 4 patients had follow up visits either confirming the reaction with repeat challenge or demonstrating an enhanced sensitization by increased skin prick test or increased food-specific serum IgE levels as compared to their baseline values.
CONCLUSIONS: Physicians performing open challenges should be aware that patients may rarely develop IgE-mediated symptoms following a negative open-OFC. Possible reasons include inadequate dosing, questionable symptoms at time of initial challenge, and possible ‘‘redevelopment’’ of allergy.
When people share data with an organization like AAFA, it allows AAFA to understand how asthma and allergies are affecting their lives. That gives AAFA the ability to “speak” (advocate) for people with asthma and allergic diseases, both with confidence that we understand what those people need, what is most important to them, and with the authority that comes from truly listening to them.
If you or your loved one has a food allergy, you are not alone. Reading about others’ experiences can help you navigate the world of managing a food allergy.
patients or caregivers are more than their stories, we are thoughtful members of the healthcare system, or research team. We provide perspectives that bring insight to areas that were previously obscured
Table 1 Summary of barriers and enablers for involvement
Unwanted voices: Some points of views/ experiences are more welcome than others (particularly those who agree or are less challenging of the system or services).
Devaluing people: not valuing or listening to what people say.
Tokenism: asking for involvement but not taking it seriously or enabling it to be effective.
Gatekeepers/individuals who block the involvement process: individuals who obstruct the involvement process by their attitudes or actions and stop people getting involved.
With current involvement practice, power imbalances frequently manifest themselves in different ways, starting with who to involve. PPI often involves a narrow group of individuals, with the handpicking of just one or two ‘appropriate’ or ‘acquiescent’ patient representatives to be involved in committees or projects.
Belle, an Australian woman somewhere in her 20s (she doesn't even tell the truth about that), had a very active website where she claimed that she had beaten multiple forms of cancer by eating right and living healthy.
But Belle did not have cancer and she was full of malarkey.
Following this thread and looking forward to reading your thoughts . . .
the gold standard is that she tolerated the xxx with the challenge. Mom is extremely anxious about this issue.
Mother is extremely tearful on the phone.
I am extremely frustrated and infuriated at the situation. Xxx passed a xxx challenge. There is no need for an epinephrine autoinjector in school. Nonetheless, we shall provide one for school with appropriate documentation for an epipen due to mom's request.
Epinephrine use is not going to be an issue. If anything, hives may ensue for which xxx will receive benadryl. Likelihood of xxx's theoretical risk of anaphylaxis to xxx (which she has passed) is negligible. Resources have been wasted to rectify this issue on multiple occasions.
Herein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another [80–83]. Hence, EBM’s accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.
Something, though-- they rely upon assumptions and tend not to question their own beliefs and biases. They EXPECT that the "rare" is instead the "impossible."
Although it is very rare, it is possible to experience allergic symptoms following a passed challenge. If this does occur, you should let your allergist know. They will be able to work with you to develop a medical care plan that takes into account your personal risk factors and medical history. You may be advised to continue carrying epinephrine and a FAAP/ECP. In some cases, the allergen dose may have to be lowered. In other cases, going back to strict allergen avoidance may be necessary. It is also possible that your allergist might request that you come back in for another OFC. The important thing is that you and your allergist should work closely together to decide what the next step should be.
The problem is far larger than simply in food allergy, btw. This is why one of the BIGGEST burdens on the entire healthcare system isn't... the fattest patients, it's not the drug-seeking patients, it's not even those who make poor lifestyle choices, or those that ignore preventative care advice-- though to be fair, all of those things are also problems.
Nope.
MISSED and MIS-DIAGNOSES.
It's a truly enormous problem. It costs each and every person who uses the healthcare system. We've GOT to get our system working better so that it doesn't take TEN visits to four specialists to diagnose what should have been obvious to the first general practitioner-- if only they'd LISTENED to the patient and asked the right questions to begin with.
Instead, they listen to their BELIEFS about the patient. Not the patient's reality.
Yes, patients and parents are unreliable narrators as often as not. But so are physicians.
Links. Wow. That's all I can say right now. Except
I get it. I know how bad it got for us. How life will never be the same so many years later. And I'm sorry it happened to your family, too.
and I worry now with DD's egg numbers down again that the allergist will push re-challenging egg.....which was a clear pass, and then returned for DD in direct egg form (she can tolerate baked).
Neither she nor I want to go there.
We would never trust the results of another pass.
Something, though-- they rely upon assumptions and tend not to question their own beliefs and biases. They EXPECT that the "rare" is instead the "impossible."
Yes, exactly.
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The language that I would prefer to hear on the webinars would be something like this:QuoteAlthough it is very rare, it is possible to experience allergic symptoms following a passed challenge. If this does occur, you should let your allergist know. They will be able to work with you to develop a medical care plan that takes into account your personal risk factors and medical history. You may be advised to continue carrying epinephrine and a FAAP/ECP. In some cases, the allergen dose may have to be lowered. In other cases, going back to strict allergen avoidance may be necessary. It is also possible that your allergist might request that you come back in for another OFC. The important thing is that you and your allergist should work closely together to decide what the next step should be.
Then she ate eggs at home for awhile, then some stomach issues started to pop up but the allergist did not think much of them, and then DD had an unexpected reaction to direct egg and at that time her blood work numbers for egg were back up.
For DD, I am not afraid of doing any other food challenge except egg. I even reluctantly agree to do pecan at home....which after the stress of the clam challenge failure at home is a big step for me.
Last year the allergist said lets do a challenge for egg but won't discuss our fears or concerns or even speculate why or what may have happened. Dismissing history is a big red flag.
Responding to you and thinking about this thread has given me some clarity....the only way I can agree for DD to do another egg challenge will be if the allergist takes into account and discusses with both DD and I, DD's egg allergy history and how a new challenge will be done and how she will follow up with DD differently.
This is my husband's biggest concern about the possibility of me doing a food challenge - that I will pass the IOFC and then have a reaction at home when reintroducing the food, or developing the allergy again, especially since my allergies don't appear on tests. I read through some of the articles linked in here and had some questions:
- In the experience of members here, would an allergist increase the final dose of an IOFC if a patient requested it? To make the final dose, or total combined amount allergen eaten in the challenge, close to what might be considered a normal dose for an average person. Or, should that already be best practice? (My challenge would be for potato, which could be a very large 'normal' dose when considering eating a whole jacket potato as a dinner, for example.)
- How long did it take people here to redevelop their allergy once they passed an IOFC? Is the timeframe fairly consistent, or is it all over the place? (Just curious if there's a point where one could successfully declare the risk of redevelopment unlikely.)
I'm trying to be as level-headed about this as I can, without freaking out too much (online, anyway). I tried looking for a thread on IOFC questions alone but couldn't find one.