Food Allergy Support

Specific Food Allergies => Peanut/Tree Nut Allergy => Topic started by: AdminCM on September 05, 2011, 09:41:54 AM

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Title: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: AdminCM on September 05, 2011, 09:41:54 AM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Macabre on October 23, 2011, 09:20:32 PM
I think about this a lot.  And with the reaction symptoms that kids doing baked milk and baked egg routinely get--that are acceptable--it makes me wonder about this.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on October 24, 2011, 12:08:34 PM
Me, too. 

It *really* freaks me out in some ways, in fact...

and it's the top reason why we've proceeded SO cautiously in ramping up the dose with milk and egg both.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Carefulmom on October 25, 2011, 12:26:42 PM
This is a big reason I have not put dd in a peanut desensitization study.  I think it is great that some on this board have had such good results, but I don`t think there are any long term studies, so there is no way to know if they are going to be allergic in the future.  Dd is doing great on baked milk, really great.  She has no symptoms now when eating pizza.  However, the difference is that in baking the milk, the protein is broken down.  As some of you know, dd "passed" a milk challenge two years ago by drinking a few tablespoons of milk and then four days later had a reaction at home.  The peanut desensitization isn`t baked.  I wonder what would happen if they tried studies with baked peanut such as pb cookies.  They should do a study on that.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on October 25, 2011, 12:43:41 PM
It doesn't change the recognition site enough, apparently, Carefulmom.

It's not that it isn't a good idea-- it's just that some proteins types are heat-labile, and some are not.

Egg and milk proteins are in the former category, and seed storage proteins of ALL types very definitely are not-- if anything, heating tends to increase allergenicity (perhaps by removing/altering masking portions of the protein and allowing for even better recognition by IgE).

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Carefulmom on October 25, 2011, 12:53:23 PM
Interesting.  I guess that is why they have not done studies on baked peanut. 
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on April 11, 2012, 01:19:56 PM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Mookie86 on April 11, 2012, 02:30:07 PM
I've thought of you and your nightmare often.  :grouphug:
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: rebekahc on April 11, 2012, 04:18:39 PM
justme - please PM me if you'd like to have your post count on your new profile match that of your old ID.  Also, I can change the name to lala if you'd like.

Good to see you! :)
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Macabre on April 11, 2012, 07:12:32 PM
Wow--I think about y'all a lot.  Seeing what are pretty common symptoms with OIT and then with baked egg dosings, I wonder about your kiddo's symptoms--and what things would have been like with low, regular doses.  Not that I am recommending any second thoughts. 
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on April 13, 2012, 02:57:53 PM
Well, the interesting thing is that he had successfully outgrown dairy, gluten and egg prior and exhibited many of the same symptoms in his peanut challenge that he did in the other challenges. So it was not as crazy as some thought at the time. I did end up going back and reading the thread and had a chuckle that the person who totally slammed me as a mother took all her comments down. I am glad to see that she did, because we have enough hate from the non-allergic world that we do NOT need it from our own community.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: PurpleCat on April 15, 2012, 08:53:31 AM
My DD "redeveloped" her egg allergy after passing an office challenge.  It stinks and the worse part is DD and I knew it long before we could convince the doctor.  It was almost a year ago when I argued to have her retested and the surprise to the nurses and doctors of her results. 
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: eragon on April 15, 2012, 02:21:56 PM
my son passed his cooked egg food challenge at 7, and his raw egg one at 10. flash to 12 yrs epi pen from mystery cause.
confirmed egg allergic, totally age 14.

has however grown out of tree nuts, but not food challenged.

has grown out of some bean /legume allergies, again not food challenged.

suspect some seed allergies, blood and skin test neg, now slowly going through all 6 suspects with food challenge.

each food takes a whole day to challenge, and is stressful.
having lived through re development am pretty scared about any more coming back....

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Penny on April 17, 2012, 02:47:52 AM
I'm not sure how many here remember gvmom from the old days - but her son passed an egg challenge  and later had a reaction.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: AllergyMum on April 18, 2012, 09:34:55 AM
We should also keep in mind that many people do outgrow food allergies & they never come back.  My son has outgrown 3 food  & 1 drug allergy and none of them have ever come back and I pray that they never do. 

Has the recurrence of redevelopment of allergies ever been studied.  I wonder how common it actually is and if it happens more in some allergies. 


Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Mookie86 on April 18, 2012, 01:45:10 PM
I was told that odds of recurrence go down with more time that has passed.  ds2 passed his PN challenge four years ago.  I'm still nervous sometimes that it could reappear.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: cmf on May 10, 2012, 07:04:10 AM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: ejmm on May 11, 2012, 12:37:44 PM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: K on August 23, 2012, 02:57:37 PM
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
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: classicsmom on July 20, 2013, 09:38:21 PM
Hi I am new here. My kid just "passed" a food challenge for peanuts. Are there any links to the previous thread? I am wondering since ds unfortunately did not tell us till afterwards about very slight uncomfortable stomach. I have tried full does of peanuts multiple times since and he has had very slight tongue itching and/or very slight stomach discomfort with no distress at all. I plan on calling doc Monday. I appreciate any info.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Macabre on July 20, 2013, 11:32:43 PM
The link is in the very
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.


Welcome!

The link is in the first post of the thread, quoted above.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Gray on July 21, 2013, 12:36:03 AM
Welcome classicsmom.  I'd probably hold off on giving him more until you touch base with the doctor.  I'd also suggest that you continue to have epinephrine available for him at all times for at least the next year.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on August 29, 2013, 12:01:44 PM
oops lol
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on March 11, 2014, 11:33:53 AM
Just adding a few links:

Allergy after passing peanut challenge?

-----------

How long do contact hives stick around after outgrowing?

Living with Food Allergies, FEB 2013   (Page 1)

-----------

"Passed egg challenge last week; anaphylaxis yester"
http://allergy.hyperboards.com/action/view_topic/topic_id/1717

http://www.peanutallergy.com/boards/passed-food-challenge-egg

OIT may not produce lasting effects?

http://forums.thebump.com/discussion/12162412/reaction-after-passing-baked-egg-challenge

"Anyone pass a food challenge and then have a react"
http://allergy.hyperboards.com/action/view_topic/topic_id/4370

http://www.aaaai.org/ask-the-expert/possible-milk-allergy.aspx


* Mods can bring over hyperboard threads if you think it'd be helpful.


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

Related topics:

Let's talk about anxiety

Oral Food Challenges - Links & General Info



Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on March 28, 2014, 08:02:35 AM
justme ... I hope you don't mind ... I'm not trying to take over this thread ... it just seemed like the right place to ask these questions.  I can start a new thread if you prefer.

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

Do you think it would be helpful if FA educational materials were updated to include more info on the rare cases of "false passes" and/or "allergy recurrence"? 

http://www.foodallergy.org/diagnosis-and-testing/oral-food-challenge
Quote
If you have no symptoms, food allergy can be ruled out.


http://www.kidswithfoodallergies.org/docs/Demystifying-Food-Challenges-for-Food-Allergy.pdf?pdf=Oral-Food-Challenges

http://allergynotes.blogspot.com/2014/04/food-allergy-and-may-contain-labels.html?utm_content=bufferd8997&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
OFC "100% accurate"

etc.

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

Do you think patients should carry epi for a while after a passed challenge?

Do you think there should be certain protocols in place for post-challenge care in cases where the pass was not completely "clean" (minor and/or questionable symptoms)?

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

Related link:

http://allergicliving.com/2013/09/20/how-do-you-know-if-an-allergy-is-truly-gone/

Quote
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?


Quote
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.


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

"Diagnostic evaluation of food-related allergic diseases"
http://www.aacijournal.com/content/5/1/2
Quote
False-negative open challenges occur 1-3% of the time


Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on May 13, 2014, 01:35:00 PM
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.

Yep. This one we are talking about outgrew allergies to gluten, egg and dairy prior to the peanut fiasco. Dairy had the highest numbers; MUCH higher than peanut. I was told this was a good sign for the peanut challenge.  I was told that his low numbers for peanut was a good sign. All signs pointed in the right direction. But alas, not the case for us.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on May 13, 2014, 01:37:38 PM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on May 13, 2014, 01:39:53 PM
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.

Just RAST. Ara h2 was not available at the time of his test. They opted not to skin test because they said that often times kiddos with skin issues (ds has eczema) could show hives and it not be a true reaction.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on May 13, 2014, 01:47:26 PM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: Gray on May 14, 2014, 08:44:53 AM
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.


Justme,

This also was not our situation.  Dd had very minor symptoms during the challenge (a couple of hives), but she was able to eat a lot.  I was told that I didn't need to worry, that it was a pass. 

Two days later, I fed her the same form of the food as was used in the challenge.  Her symptoms that day included eye swelling, hives, and itchy tongue.  The symptoms were worse than what happened at the challenge.

The allergist felt the remaining symptoms would probably resolve within a few weeks and did not think that dd needed to carry an epi (we continued to carry the epi).  I was skeptical (because I knew about your story), but I gave it a chance because I am not an expert and I was hoping that the doctor was right.

The symptoms did not resolve.  The allergist thought that I was an extremely anxious mother.  My dh agreed with the allergist.  If I had not known about your story, I might not have had the mental strength to safely get through that situation until we got another allergist.

 :heart:

Many thanks to you for sharing your story.



Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on June 06, 2014, 11:25:08 AM
Can I have a link to your story? My ds said he will NEVER challenge again. He might change his mind when he becomes a teen, but for now it's just business as usual.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: rebekahc on June 06, 2014, 11:30:19 AM
Wrong thread.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on November 30, 2014, 06:38:10 AM
Differences in interpreting double blind placebo controlled food challenges
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on July 28, 2015, 08:16:38 AM
Since this is pretty personal & I'm sharing a few of her tweets here, I made sure that @harriet75 was ok with me putting them in this thread.  I don't know how her story will turn out, but it makes me feel sad to read what she is going through & how she is feeling.

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


Tweeted by @harriet75

Quote
@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
Quote
@AllergyKidsDoc to only go anax to ALL egg 2 days later?
Quote
@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
Quote
@AllergyKidsDoc next day had Scrambled and ended up in ER. 5 days later have bake good also in er. Spoke to dr. Puzzled.
Quote
@AllergyKidsDoc it was done at Sinai. And he had 2 hard boiled eggs after challenge fine.
Quote
@AllergyKidsDoc the puzzle is because he was on baked Egg for many years even things like matzoh balls. It's so odd.
Quote
@AllergyKidsDoc and the research shows this doesn't make sense
Quote
@AllergyKidsDoc ugh
Quote
@AllergyKidsDoc I guess I will ask to do another challenge in a few weeks. Although I think they think I am crazy. Thanks.



 :disappointed:


That last line about "crazy" is so disheartening.  Patients/families should not be made to feel this way imo.



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




My non-expert request to docs:

Quote
When patients report allergic symptoms following a passed oral food challenge, pls do not assume "just anxiety" w/o a repeat objective OFC.
Quote
If #FoodAllergy patient/family has unhealthy anxiety, they shld B treated w/ kindness & compassion & referred 2 #MentalHealth prof 4 help.



Yeah, & I realize OFC probably can't be 100% objective as interpretation & sometimes subjective symptoms are involved, but go into it with an open mind, not just trying to "deal w/ the mom's anxiety".

Make sure symptoms not due to allergy - even something like a new allergy to a diff food - before declaring psychological.





Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on July 28, 2015, 08:33:41 AM
This thread seems appropriate ...


Patient safety



As far as I'm concerned, the patient experiences in this thread suggest under-addressed safety issues in how allergic symptoms following OFCs are handled by medical professionals.



Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on July 28, 2015, 08:39:17 AM
Tweeted by @ESchattner


"Over-Reliance on Tests: Why Physicians Must Learn to Trust Themselves & Their Patients"
http://www.disruptivewomen.net/2015/07/28/over-reliance-on-tests-why-physicians-must-learn-to-trust-themselves-and-their-patients/







Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on July 29, 2015, 07:54:39 PM
Links-- I know of two other longtime members of this community who have had-- er-- weird experiences re: egg in particular.

My own DD passed an open egg challenge 10 months ago-- and yet--  and. yet.

She has only had OVERT egg on two other occasions, and in both instances, she didn't feel at all well-- not well enough to finish the portion she had, in fact, and then she developed asthma that lasted for days.  I have no idea what it means, and I know that our allergist won't either-- because-- as those tweets show-- not supposed to happen.

We've kept her on baked egg in prepared foods that are otherwise safe, but we're also not going to push our luck.  Annual flu shots and being able to tolerate cross-contamination in restaurant settings is too important.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on September 16, 2015, 01:21:03 PM
I'm so sorry to hear about another child and parent having to go through this. I agree that there needs to much stricter protocols regarding the amount of passed allergen a patient may eat afterward. And doctors truly have to listen to their patients and their parents. It is supposed to be a team approach to health, but often times the doctor is really the only one on the 'team'.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 06, 2016, 10:48:08 AM
This topic is really bothering me after watching a few recent webinars ... I'm having some pretty negative emotions ...


hope you guys don't mind, but I'm going to save a few spots and write down my thoughts gradually when I have some time.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 06, 2016, 10:48:26 AM
ok, the webinars ...

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


FARE
The Diagnosis of Food Allergies and the Role of Oral Food Challenges
Speaker: Dr. S. Shahzad Mustafa
3/16/16
http://www.foodallergy.org/tools-resources/webinars/basics#diagnosis


49:25
Quote
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.


He talks about the importance of keeping peanut in the diet following a pass, which is something we know is currently recommended to maintain tolerance ... I'm fine with that part, but then ...


50:15
Quote
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.


50:29
Quote
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



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


FARE
Understanding and Managing Sesame Allergy
Speakers: Robert Wood, M.D.
10/14/15
http://blog.foodallergy.org/2015/10/22/sesame-webinar/


For the most part, I liked this webinar, but wanted to post this b/c the focus is keeping the food in the diet after pass/outgrowing ...


46:26
Quote
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.




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


KFA
Oral Food Challenges: What to Expect (Video and Resources)
Irene Mikhail, MD, an allergist immunologist at Nationwide Children’s in Columbus, Ohio
7/29/15
http://community.kidswithfoodallergies.org/blog/oral-food-challenges-what-to-expect-video-and-resources


41:53
Quote
Also, how likely is it that you pass the challenge in the office and have a reaction ... say a week later?

Quote
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.







Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 06, 2016, 10:48:45 AM
I noticed the link to justme/Lala's original hyperboards thread is no longer working.  Her story (both the physical & emotional aspects) is so important imo ... I hate to lose it ... maybe she'd consider posting a summary in this thread?

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


A few more things that I want to stick in this thread ....



Re: Docs helping patients to surf the internet


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]

4:29
Quote
This is useful information, but you know what, it does not exist in the scientific literature.

4:53
Quote
Something has changed.



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


Six ‘biases’ against patients and carers in evidence-based medicine
Trisha GreenhalghEmail author, Rosamund Snow, Sara Ryan, Sian Rees and Helen Salisbury
http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0437-x

Quote
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.

---
Quote
Bias 2: EBM’s hierarchy of evidence devalues the individual patient experience

Quote
The individual case report sits at the bottom of EBM’s hierarchy of evidence. Indeed, we are explicitly warned not to trust ‘anecdotal’ evidence

Quote
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].

---
Quote
Bias 4: Power imbalances can suppress the patient’s voice

Quote
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].

---
Quote
Bias 5: EBM over-emphasises the clinical consultation

Quote
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.

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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

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Tacit knowledge is the stuff of communities of practice – accumulated through years of experience and exchanged through stories

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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.


http://creativecommons.org/licenses/by/4.0/


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Tweeted by @HarvardGH

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"We’re no longer living in an era where the medical community gets to hold information in" - @ashishkjha @ProPublica


https://m.youtube.com/watch?v=ADhLUvzMbe0


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"The Role of Anecdotes in Science-Based Medicine"
https://www.sciencebasedmedicine.org/the-role-of-anecdotes-in-science-based-medicine/

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When we believe we have experienced something directly, it is difficult to impossible to convince us otherwise.

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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.

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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.



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"An open letter to The BMJ editors on qualitative research"
http://www.bmj.com/content/352/bmj.i563.full?ijkey=c1RmesunyZazzfY&keytype=ref

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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.

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Few research topics in clinical decision making and patient care can be sufficiently understood through quantitative research alone.


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Canadian Patient Safety Institute
"Harm to Healing – Partnering with Patients Who Have Been Harmed"
http://tinyurl.com/gorumeo

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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.

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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).


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Re: Docs helping patients to surf the internet

Tweeted by @AllergyNet

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Dr Google: 1) Disregard if anonymous 2) Check primary source 3) Check author qualifications 4) Discuss with your medical doctor




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https://commons.m.wikimedia.org/wiki/File:Graham%27s_Hierarchy_of_Disagreement.svg


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"What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study"
http://bmjopen.bmj.com/content/3/11/e003583

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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.’






Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 06, 2016, 10:49:03 AM
"Failure of introduction of food allergens after negative oral food challenge tests in children"
J. P. M. van der Valk , R. Gerth van Wijk, Y. Vergouwe, N. W. de Jong
http://link.springer.com/article/10.1007/s00431-015-2504-x/fulltext.html


Open Access
This article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited.


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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.

Quote
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].



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"Evidence for False-Negative Open Food Challenges"
Lieberman, JA; Sampson, HA. Journal of Allergy and Clinical Immunology, suppl. S127.2 (Feb 2011): AB180.
http://search.proquest.com/openview/05b2765471191d4f169ccfde187e230d/1?pq-origsite=gscholar&cbl=105664

Quote
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.



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"Coming Soon: Asthma and Food Allergy Patient Registry"
http://www.aafa.org/page/asthma-allergy-patient-registry-research.aspx

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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.



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True Stories
http://www.foodallergy.org/living-with-food-allergies/true-stories

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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.


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"Modeling Change"
http://modelingchange.blogspot.ca/2016/03/my-plea-to-attendees-of-hcsmca-national.html

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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


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"From tokenism to empowerment: progressing patient and public involvement in healthcare improvement"
http://m.qualitysafety.bmj.com/content/early/2016/03/18/bmjqs-2015-004839.full.pdf

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Table 1 Summary of barriers and enablers for involvement

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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).

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Devaluing people: not valuing or listening to what people say.

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Tokenism: asking for involvement but not taking it seriously or enabling it to be effective.

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Gatekeepers/individuals who block the involvement process: individuals who obstruct the involvement process by their attitudes or actions and stop people getting involved.

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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.


This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Medscape Business of Medicine > Ethics: Today's Hot Topics
Are Evil People Influencing Your Patients?
Arthur L. Caplan, PhD
Disclosures June 24, 2015

(I don't link to medscape - privacy reasons - but you can google)

Quote
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.

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But Belle did not have cancer and she was full of malarkey.






Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: ajasfolks2 on April 06, 2016, 11:49:22 AM
Following this thread and looking forward to reading your thoughts . . .

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 07, 2016, 08:32:50 PM
Following this thread and looking forward to reading your thoughts . . .


Thanks Ajas.

I think that covers most of the background links/info I wanted to include.

Will probably ramble a bit now & this also may take some time ...





Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 07, 2016, 08:34:15 PM
Hmmmm ... I don't even know where to start ... I fear this will be quite convoluted ... ok ...

Do I have to say it?  Is this issue worth giving up more of my family's privacy?  I prefer posting/sharing info & links.  Is it worth revisiting those old wounds that I would rather leave in the dust?

Fine.

My dd passed an OFC to a food (other than peanut) and then had reactions when we introduced the food at home as instructed a few days later ... and she continued to have reactions for 6 months until we switched allergists & that new allergist reduced the dose.

How can I explain to you how horrible an experience that was?  How can I/we get those allergists on the webinars to "hear", to "understand", to "believe" that reacting after a passed food challenge is in fact possible, that it happens?

The thing is, let's be honest ... we have a credibility issue here.  Who is Links?  I could be making this whole story up, right?  Same with Lala ... yeah, if I remember correctly, she said her son anaphylaxed after her allergists told her to keep feeding the food after the pass ... but, really, just anecdotes, right?

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


ok ... deep breath ... before anybody flips out ... I'm not going to name our former allergist here (I don't think that I told anybody in the online FA community even privately in pm's or emails her name) ... I am not going to name in this post where the OFC was done (I did tell a few people that privately) ... and, btw, there's nothing stopping me from naming names but ...

I am not looking to destroy reputations, I am not looking for revenge, I am not angry anymore ...

but mine is a story that likely would never be posted at FARE or KFA ... it's not pleasant ... but those webinars  :disappointed: ...

again, how can we patients get the professional community to listen?  I'm going to post a little bit of dd`s medical record here to give a sense of how bad things got (will "X" out some private info like name & allergen):


Quote
the gold standard is that she tolerated the xxx with the challenge. Mom is extremely anxious about this issue.

Quote
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.


That's all I'm going to post from the record here ... but maybe this shows a bit better why those webinars were enough to push me out of my recent lurking/reading mode ...

& to our former doc ... yeah, it didn't go so well between us & I can see now how I also contributed to that not being a good relationship ... you're probably a good doc ... you're human/I'm human ... you help a lot of patients ... you do a lot of good ... from what I've read, you docs can be kind of hard on yourselves ... this is not about attacking or judging ... this is about taking a bad situation and using it to help prevent future harm.


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



So my main question is how do we prevent something like this from happening to another FA family?


By not naming names ... the doc's, the hospital's, mine ... the above remains just my word which basically counts for nothing in terms of proof that this took place.  So how do we close that gap between my word and the scientific literature in a way that is productive .... that does good ... not in a way that further hurts me or my former doc?






Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 07, 2016, 08:34:44 PM
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:
Quote
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.


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



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".


 :P




Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 07, 2016, 08:35:28 PM
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.

-----


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


----


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. 






Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on April 09, 2016, 01:55:48 PM
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.

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 09, 2016, 10:36:55 PM
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:

Quote
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.




Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on April 10, 2016, 12:28:31 AM
 :yes:  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.   :heart:

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 10, 2016, 09:57:41 AM
.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: ajasfolks2 on April 11, 2016, 10:03:42 AM


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 . . .



Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 11, 2016, 10:44:08 AM
Will link this ...


Bias



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



Will also link to this ...

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







Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on April 22, 2016, 02:34:04 PM
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 22, 2016, 07:18:24 PM
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?





Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on April 24, 2016, 11:56:00 AM
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.

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: PurpleCat on April 25, 2016, 08:13:21 AM
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. 
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 25, 2016, 12:11:12 PM
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.






Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: PurpleCat on April 26, 2016, 07:22:42 AM
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:

Quote
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.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on April 26, 2016, 08:59:51 AM
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.



 :heart:



What you said totally makes sense to me.   :yes:





Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on April 26, 2016, 11:27:27 AM
Yep-- to me, as well.

I'm really hoping that doesn't happen to DD, in fact, and it worries me-- she ate eggs more or less normally for a couple of months, but now her tolerance seems lower again.   :-[
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: PurpleCat on April 27, 2016, 11:59:51 AM
Oh no!  What kind of symptoms is she having? 

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: CMdeux on April 27, 2016, 03:19:57 PM
Really awful eczema.  Her legs are a MESS. 

We don't really know if it's egg or some combination of things, but the eczema hasn't been this bad since she was 8-12mo.    She's also developing a fresh aversion to the smell of eggs cooking, which had gone away.   :-/
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: PurpleCat on April 28, 2016, 07:30:58 AM
I can relate to both of those symptoms.  They don't happen to my DD for baked egg, only direct egg.

Even right now, DD does not want to be around when eggs are cooked.  It's not an "I don't like the smell reaction, I believe it is a flight to safety reaction"  I air out the house if I cook any for the boys.

Ditto for my DD with egg exposure and eczema....I could not believe what gorgeous skin DD had when egg left her diet!

I hope there is no other progression of symptoms for your DD.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: justme on April 08, 2017, 10:13:18 PM
Unfortunately the more people I meet in the allergy community the more I have to link to thread ☹️  I am glad I documented it, though.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: spacecanada on December 21, 2017, 10:23:37 PM
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. 
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: LinksEtc on December 22, 2017, 01:28:08 PM
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.)

Just from my experience, some allergists are more open to patient requests than others.  I would probably talk to the doc and communicate your fears and let the doc know that this would help you to feel more confident about introducing the allergen at home if you pass the challenge.

- 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.)

My daughter had very minor symptoms during the challenge, but it was judged to be a "pass".  She then reacted at home when we fed her the allergen 2 or 3 days later.  She continued to react at home when we fed her sesame.  Earlier this year, she had another challenge and she passed and has been doing great since.  I think that there were about 5 years between the challenges.  She has been eating lots of sesame with no problems.


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.


My understanding is that the vast majority of the time, if you pass a challenge, then you are not allergic ... and the allergy usually does not come back (for people who have gone through OIT, they may have a greater risk of symptoms returning).  What happened to my daughter was rare, and the symptoms she did have were mostly mild.

There are always risks and benefits with any medical procedure, but generally speaking, IOFC are usually pretty safe and they can free you from having to avoid foods and improve your quality of life.  Unless you have symptoms following a passed challenge, I wouldn't worry about the rare possibility of redevelopment ... but I understand that this might be easier said than done, especially with everything that you have been through ... some counseling might help with the stress you are feeling.   :heart:

Best wishes.

Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: spacecanada on December 22, 2017, 01:58:34 PM
Thank you, Links.  Your comments were very helpful and reassuring.  The allergen we are considering challenging (potato) is the one that stresses me out the least, yet restricts me the most (due to being non top-10), so I think I will do the challenge.  I just need more time to process all my lingering thoughts and questions before I actually go ahead and schedule it. 
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: PurpleCat on December 23, 2017, 08:43:05 AM
SC, from a Mom's point of view.....if you do challenge (and it is worth it if you can eliminate an allergen), after, listen to your gut instincts and your body's signals. 

DD and I had a sense egg was not gone, but the medical folk said it was just her fears and worry, she was fine cause she passed.  Yes, she actually did eat more egg than originally planned at her challenge.  After, those little gut issues kept getting bigger and we should have listened to those.  Her body was talking.

It's like when we say here, reactions trump testing.

So challenge and then listen is my opinion and advice.
Title: Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy
Post by: spacecanada on December 23, 2017, 10:03:23 AM
Thank you, PC.  That makes a lot of sense.