Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy

[LinksEtc]

What I believe is that something has changed.  Many patients are not passive anymore.  We connect with each other, we share our stories with one another, we build communities like this one at FAS.

I think that a lot of online allergists have good intentions ... guiding patients to official respected support groups ... trying to keep them away from bad internet info where anybody can say anything ... it's just that I don't see small groups like ours going away ... people are going to connect with those they feel a connection with ... I got something from this group that I didn't feel anywhere else. 

Even though food allergy issues don't have a big impact on our life anymore, my mind keeps playing with certain topics ...

I adore that Six Biases paper by Trisha Greenhalgh ... remember all that google-bias hypothesis stuff, the "epistemic injustice", & this:

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.

This. So much. 

If I were an academic, this is the paper that I would have written ... I have experienced so much of what she wrote about.  To me, this is where the exciting stuff is at ... that gap, the potential for better integrating the scientific literature and the unique knowledge that groups like ours hold.   As you may be able to tell, my efforts to fully retire Links aren't going as well as I had hoped ... but I don't know where I really belong now ... these things are not so much food allergy issues ... it's like my FA experiences are kind of a gateway drug to larger, more general patient issues ... anyway, I'm getting sidetracked ... not so much a topic for a food allergy support board.


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Getting back to the OFC issue ...

With that KFA webinar, I had actually talked to Lynda on Twitter beforehand and mentioned that I was concerned about this issue of reacting after a passed challenge.  I really appreciated that she made sure to bring up the issue to the doc.  I felt happy to be communicating with her, to be working together, I felt "heard" unlike with a previous KFA webinar where they didn't have time to ask a question of mine.

After I heard the doc's response on the webinar to the question about reacting after a pass,  I didn't raise the issue with her ... I guess I was a bit advocacied out (yeah, probably not a word).

Just a couple of days ago, I listened to the FARE webinar ... there, I did not ask about that issue - others did.  The doc, for the most part did a great job, but what he said about this issue really rubbed me the wrong way ... obviously, I have some personal emotional baggage, so maybe I'm more sensitive?

What I do think, though, is that true patient engagement beyond tokenism would allow patients to talk back ... to say that we disagree with what was said at FARE & KFA ... to have our feedback considered ... and if it is found to have merit according to their medical board, to have the wording in the webinars improved.

During our last appt, our GI doc told me I should be a scientist ... had to laugh a little to myself ... see what Links has done to me?  Anyway ... science ... papers are improved, sometimes retracted.  Even though for the most part we are lay people, not experts ... true patient engagement, I think, requires what we say to be evaluated on its merit.  This seems to be something that is very difficult for many experts to do.

You know, now that I understand the Google-mom issue, I sometimes have fun with it.  I finally got around to my own pcp appt & I joked about googling patients & the doc jokes that the first step is admitting I have a problem.   

Before understanding the Google issue better ... I didn't get it ... why were docs acting strangely if I mentioned internet knowledge?  I remember a few years back, my former dentist was telling me local honey was good for treating allergies ... of course I tell him how some of the online allergists say that this is a myth ...  can you just say the.smile.disappeared.immediately.from.his.face.  Oh gosh, I could have some real fun with this Google-patient stuff if I were a researcher.  Sidetracked again.  Told you - convoluted.

I think it's the same kind of thing when groups like FAS "challenge" the expert narrative ... whether docs, lawyers, etc. - they often seem to have a hard time accepting that what we do or say legitimately has (or might have) value and should be taken seriously, or at least considered.


Can't help but think of the movie Titanic ... "It lets us know where we rank in the scheme of things".

[LinksEtc]

I joined Twitter for the FDA/sesame labeling stuff, and along the way I unexpectedly found these exotic creatures called "ePatients" ... people like

@HeartSisters
@SusannahFox
@ePatientDave
@DavidGilbert43
@JBBC
@GilmerHealthLaw
@breckgamel
@colleen_young
@allyc375
& many more ....

I think that they are onto something.  If professionals don't find a way to better bridge this gap I was talking about, many patients are no longer waiting.

For instance, did you see the patient led qualitative study that I linked to in this thread?  How cool is that?

Patients are forming these groups ... they are getting access to their medical records ... they are realizing that they have more control of their data. 

For instance, if I wanted to cause trouble (which I don't) ... I could gather some of the patients in this thread and approach an org like @ProPublica and ask them if they'd like to do some investigative health journalism about the stuff in this thread.  The point being whether through forums, Yelp, journalism, patients have more ways to share their experiences, their stories ... even if it's stuff the professionals might prefer goes away quickly & quietly.

We could find an interested "real" researcher & give that person access to our records ... we could participate in follow-up OFCs to help generate some more trustworthy data on this issue ... we could recruit other patients ourselves.  For me, at this point, I'm kind of hopeful that dd might have outgrown ... we will see ... but I'm talking in general here.

Things have changed.  It's not all bad.  There's some really exciting stuff going on.

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Anyway, I think that I'm done with this topic for now again.


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One thing that I was thinking about was that whether with the sesame stuff, the FDA transparency stuff, working through what personally happened to me, exploring the Google-mom issue, etc. ...

a lot of this had the general theme of trying to get the patient voice heard ... part of my personal narrative, I guess. 

[CMdeux]

I don't know, Links. 


But what I do know is that too many doctors are too...


arrogant?  (No, too strong)

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."

Patients suffer tremendously from this approach to medical care. 

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.

[LinksEtc]

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:

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.

[CMdeux]

   I like that approach VERY much.

I'm forever grateful that we have been blessed with an allergist who is more than just a medical advisor and doctor-- but also a partner in helping us to determine management decisions of all kinds.

He has been respectful of where his role ends and ours (and really, our DD's) begins.  Yes, she might pass an IOFC-- but her daily follow-up LIVED experience has to inform her decision-making as much as that one-day snapshot of a challenge does.  It took her over a year to add straight up egg to her diet after passing an open challenge.  Before that, she was on a very low daily dose for almost five years.  He didn't push-- he advised and answered questions as best he could.  But the decisions were OURS.  Because the consequences are, too.   

[LinksEtc]

.

[ajasfolks2]

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.

<Respectfully Snipped>


I just wanted to see this in even bigger letters.  _{Maybe because I sometimes feel like YELLING this at some medical care providers when we are in to see them and get poo-pooed as to our REAL concerns and TRUE experiences . . . .}

Such an important statement about our medical care in the USA . . .

[LinksEtc]

Will link this ...


Bias



----------------------



Will also link to this ...

Re: Desensitization Programs in the US -- OIT SLIT SCIT

[justme]

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.

[LinksEtc]

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.

Thanks justme ... your story helped me when we were going through this.  There was only one time where the symptoms were so bad that dd was crying/panicked ... most symptoms were pretty mild (since she was reacting, I was controlling the dose somewhat because I didn't want her to ana) ... so I don't think it affected her too much ... but it was a horrible 6 months for me.

Do you think that you could share your story again in this thread since the hyperboards link is not working anymore?

[CMdeux]

I'd like to second that request-- with the additional note that there are quite a handful of us who are, or have been, part of this particular online community who have experienced this passed-challenge-but-apparently-it-doesn't-hold-in-the-real-world thing.  Our allergist worries about this, even-- he ALWAYS checks in after a passed challenge to see how things are going, and it's (IMO) a reason why he's not entirely sure that OIT is ready for general clinical use.

[PurpleCat]

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. 

[LinksEtc]

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.

I'm actually still a big fan of challenges.  Most of the time, they are accurate and they let you know whether a person is allergic to the food or not.

In fact, we are scheduled for another OFC in 2017. 

The reason that I'm not nervous about another challenge is that I have a lot of confidence & trust in the professionals where we are now.  I don't think that they would label symptoms as anxiety without making sure 1st ... and if there was anxiety, I have trust that they would treat us kindly and try to help. 

The way that I was treated after that other challenge was just wrong imo & it should never happen to another family again ... it hurt me deeply ... & in my opinion (which could be wrong), it was a dangerous situation for dd ... which is why I am not happy with the wording of those webinars & I think that some allergists need to handle post-challenge care better.

[PurpleCat]

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.


--------------


The language that I would prefer to hear on the webinars would be something like this:

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.

That statement you wrote speaks to me as how our outcome may have been different.


DD's shrimp and coconut challenges were clear passes and she eats both of those foods now.  Symptom free!  I do like our allergist and appreciate her extensive knowledge.

With Egg, the challenge was a clear pass.  I watched DD eat first yolk and then egg white without any symptoms, other than our nerves.  She had been safely eating baked egg for 3 months.

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.

[LinksEtc]

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.

What you said totally makes sense to me.