http://www.bsaci.org/LiteratureRetrieve.aspx?ID=141770 


From the BSACI   who recognise that the two main UK allergy charities do not agree with all points of their new recommendations.

^ Those responses underscore Roberts' knowledge gap, and those who share his knowledge gap, between clinical and field medicine.  That does seem to be the undercurrent of most FA or other patient advocacy orgs that rely on legislature for laws or appropriations.  The job isn't finished there; it's only begun the cycle of rule making, implementation, and measurement.

http://onlinelibrary.wiley.com/doi/10.1111/cea.12852/full     http://onlinelibrary.wiley.com/doi/10.1111/cea.12856/full 


Responses from Prof Roberts and Another from the Anaphylaxis Campaign.

Beach Girl, thanks for taking the time to post about your experience.  If you have the chance, ask your Mom what her username was.  I haven't been here for about 7 years, and if she was around way back, I might remember her.  Doing some math, depending, there is one person coming to mind.... but I could be wrong.

But.... relating to your post, and this thread..... for the sake of discussion....

..... if a recommendation came out, saying that people needed to only carry one autoinjector, what would you think about that?  Or, if a doctor told you that you only needed one? 

Who do you look to for being "expert" when it comes to the recommendations about your allergy management?  Do you feel like how you were raised, and the structure you had in placed created by your parent(s) influenced how you manage your allergy as an adult?

Also, if you are doing research, do you have a goal in mind that furthers your involvement with food allergies, in any capacity, moving forward for a career.... and would it involve anything that might influence the direction of something precisely because you live with food allergies?

BTW, I realize those are a lot of questions.   

Beach Girl  !!!!

Quote from: gvmom on November 02, 2016, 12:21:10 PM
Name..... I also look forward to the day when there is a huge group of our food allergic children that grow up and possibly become the new group of allergists and researchers.  Not only am I sick of people who don't live it determining the fate of our children, and thinking of deciding limitations on things like epi-pens for them, but my latest gripe today is the glut of new and "exciting research" that I find completely uninspiring, and thought up, again, by people who don't live it and are focused on getting kids in carefully filtered studies to eat a peanut.

I do think though, that it will be interesting to see how the growing adult FA population does advocate for themselves.  How the influence of us parents carries over as our children grow up.  Frankly, I am sure there are parents out there that think one injector is fine.  What will their kids believe as they get older?  That their parents were wrong, or that they've been just fine without two?

Has there been any sort of info collected, or interviews done, with a teenage group of FA kids?  I don't get the sense that anyone is talking to them.  Wonder what they think about one or two injectors..... if they are even remember to carry them consistently..... or would know how to use them?

Hi gvmom, I am a kid of someone who used to be a regular user on this board and eventually left.  I am 21 now and a senior in college.  I first came here when I was going to do a study abroad and was looking for information about airlines and traveling.  Since then I come here from time to time.  I have been doing peanut allergy research for about a year and contributed to a paper that was submitted to a medical journal.  You will be happy to hear I carry two epipens with me everywhere.  I am never without them.  I had to use my epipen once when I was 18 and I used it right away.  It was a milk reaction due to a restaurant error.  It is a little disappointing that I am still unable to tolerate unbaked milk, but I am able to eat baked milk or even extensively heated milk like quesadillas with no problem.  By the time I was starting high school, I felt very capable of handling my allergies and then I had to learn about my rights as a disabled person.  That part was pretty depressing.  My high school did not want to allow the kids with food allergies to eat at Senior Prom and the day after my 18th birthday I filed a complaint with OCR.  They were useless.  It got resolved when my mom called the Justice Department and surprisingly they called the school principal.

I don`t know what my mom`s user name was on here.  You can pm me if you want to know anything else. 

I agree that finding out the cause has potential to lead to prevention.

For us, meaning my family specific, "why" or "how" in and of itself, without needing a fix, as an encapsulated answered question is fine.  It is sort of like finding the starting point, but you actually find that point first, before anything else.  If that makes sense.

Still though, as I muse on about the possibilities that are in our children..... what if one of them designs the next auto-injector?  As far as I know, there is no patent on epinephrine ... just the injector right?  All of my kids are pretty mechanical, maybe one of them need to go into engineering & design. 

 

 

For me, pinpointing the CAUSE of LTFA might then lead to meaningful prevention.  I'd sure rather see prevention that does little harm vs "cures" that may not ever really be that, ya know?

What will happen going forward with our children, indeed will be different! 

For my kid with food allergies, that stated now.  She may or may not make it to her goal of becoming a vet, but for one dog owner, recently boarding a beloved family member with allergies, she was a godsend.  Someone in the care group who gets it, gets cross contamination, gets that a little is too much, etc.....  And that animal had a better experience and the owners had a better level of comfort because my kiddo gets it, lives it, and is compassionate and understanding!  (yes, animals have food allergies too!)


I'd love to see future change in food handling and manufacturing, and perhaps that will be something one of our kid's tackle.  We know about the smaller businesses stared to make something safe for someone loved....imagine that going another step further/bigger.  Even full and honest disclosure would be a breathe of fresh air! 


One thing for sure, food allergies are not going away.  Better more accurate testing, better more accurate labeling, better drugs, etc.... I believe there will be change.  Change is hard, and slow, yet innovative and exciting!

I think there is no doubt that the driving force in most everything these days is money.  Including those things in the food allergy world.  And, I'm sure that the levels of conflict of interest that exists is staggering and sickening.   

Honestly, who really cares if anyone figured out why food allergies happen, just for the purpose of knowing right?  The only way to make it so someone would bankroll that research is if there was a way to turn that into money making.  Unless, of course, they are independently, and obnoxiously, wealthy, and want to know just for the sake of knowing. 

OH... and I did see something somewhere about a few Moms out there doing something research-ish like that.  There is also that guy who gave a whole bunch of money to Stanford to find a cure.... and as far as I know that is all about immunotherapy based.  Money maker. 

But..... and I'm not quite sure if I'll get this vision out there right.... think for a moment about the group of kids, now teens, that exist "out there".... the actual numbers of them.... who are the children of those of us who started at PA.com, moved to FAS.... and various other sites (there's a canadian one escaping me right now) that have remained a collective of parents that started the FA journey around roughly the same time.

How many of our "kids"..... who we were lost with, fighting with schools for, and looking for help figuring out mystery hives and lab results for..... are headed out into the world? College, jobs, etc.

Right now, that number could easily be in the thousands.

Think about Dr. Wood.  He is one person.  He was a kid, now a big name doctor in the allergy world.  But, let's say he came out with a statement that was contrary to AAAI?  Right now, in this link:  http://drrobertwood.com/check-your-autoinjectors  he says to keep at least two auto-injectors.  That is in contradiction to the guidelines for BSACI that eragon posted.  For those of us with kids with FA's, or for those with FA's themselves, who are they going to listen to? 

If our children, go out into the world, I wonder what they will do.  They could be the next allergist who gets on a board somewhere that speaks out.  Who says that eragon's son won't end up someday affecting the policies that BSCAI comes up with?  Or, my kids?  My older two are very interested in civil rights.  They remember our days fighting with the school district, contacting the OCR, and the long lasting effects bullying had on our family.  Maybe one of them will end up in the OCR.  Or, someone else's kid may become the Superintendent of a school district, and make policies that support, rather than undermine, 504's for kids with LTFA's.... in a real way.... not just lip service to shut up the helicopter parents. 

I honestly am a pretty cynical person, but, I do wonder what will happen. What are the possibilities that there are enough people in the coming years that have LTFA's, and have lived through the experience that compelled many of us to find support because of terrible things with schools, or awful stuff with friends & family, that will be a voice that manages to speak out, even if it doesn't make money, but because it is right?  They might have positions or jobs, or have enough money to finance something..... maybe.  And, maybe people would be more likely to listen to what they have to say because they have first hand experience having lived with LTFA's, instead of just reading about it from pamphlets. 

Only the top portion is a direct reply to you, gvmom.  The rest is aimed at the wilds of the internet.

Insert obligatory statement I'm not an attorney and none of this should at all be construed as legal advice.

Yes, there are the sort of first-person storytelling qualitative investigations featuring teens' perspectives.  The bankrolling of the medical investigators may not appeal to you, however.  Some grants come from Mylan or National Peanut Board with results that are (or more accurately were) thinly veiled marketing to support EpiPen-driven expansion programs in schools, or oral immunotherapy.

I look at funding disclosures, 990s, audits, investigative journalism reports from reputable for-profit media, public records disclosures, medical investigators' required ethical self-disclosures designed to reveal potential conflicts of interest, and whatever open source reports I can find (social media is a terrific investigative tool). 

The thought I will leave is this: Epigate demonstrates the autoinjector business is quite profitable.  Enacting key legislation that would support patients' rights in air travel, education access as a civil right, and diversity of autoinjector market driven by strong innovation for product features that increase the ease of carrying, administering, and longer-term stability of epinephrine by dismantling the monopoly is not (profitable).

There is no incentive to move beyond EpiPens and in office oral challenges.  Noble cause corruption is a teleological ethics system that allows its subscribers to justify the greater good.  Few medical professionals believe in challenging the ACAA on peanut, at least in organizational behavior.  As individuals they may sympathize with their patients.  But extend this to schools and it is lawyers, parents, and some administrators who have pressed the case under civil rights.

And for all concerned about schools, consider the following because you should be worried.  SCOTUS has accepted three key cases that could greatly affect parent advocacy in schools.  Fry v. Napoleon oral arguments started Oct. 31.  Key question there must special education administrative remedies be exhausted before seeking damages under ADA or Section 504 even if the matter is unrelated to the IEP.  All of you thinking grass is greener for LTFA under IDEA for its robust procedural safeguards may want hold off on that until the case is decided and you clearly understand the implications, ideally with an attorney well versed in ed law  in addition to civil rights statutes.

Next, Gloucester County School Board v. G.G., commonly referred to as the transgender bathroom case.  Hint: it ain't about the bathroom, transgender, or Title IX, although I'm sure some part of the opinion will cover this.  The real question is Auer and Chevron deference; two doctrines that require courts to show deference of administrative agencies 'reasonable' interpretation of regulations where law is not clear in limited circumstance.  Additionally, DoE OCR discretion to threaten withholding federal funds for noncompliance.  So those in favor of calling OCR in a post-ESSA environment might want to start rolling with the administrative changes where Ed. Dept. federal authority is waning in favor of state or local agency.

Last but not least is a case deciding meaningful education benefit. For those with kids in middle school and beyond in decently funded districts, you'll possibly be able to keep cruising on the same established 504. 

So yeah, autoinjectors on the map.  But it's turning into a sand trap issue compounded by opportunistic monopolization.  There are plenty of fingerprints that made it possible, as well as some conspicuous absences or inactions. 

Can't wait for this statement to be co-opted, purposefully misinterpreted, or attempted refutation based on anecdotal-driven solipsism by the internets.

Name..... I also look forward to the day when there is a huge group of our food allergic children that grow up and possibly become the new group of allergists and researchers.  Not only am I sick of people who don't live it determining the fate of our children, and thinking of deciding limitations on things like epi-pens for them, but my latest gripe today is the glut of new and "exciting research" that I find completely uninspiring, and thought up, again, by people who don't live it and are focused on getting kids in carefully filtered studies to eat a peanut.

I do think though, that it will be interesting to see how the growing adult FA population does advocate for themselves.  How the influence of us parents carries over as our children grow up.  Frankly, I am sure there are parents out there that think one injector is fine.  What will their kids believe as they get older?  That their parents were wrong, or that they've been just fine without two?

Has there been any sort of info collected, or interviews done, with a teenage group of FA kids?  I don't get the sense that anyone is talking to them.  Wonder what they think about one or two injectors..... if they are even remember to carry them consistently..... or would know how to use them? 

@gvmom

That's come to my attention as well.  The well-credentialed pediatric allergist whose experience is restricted to an office environment so highly controlled that artificial reconstruction of allergy risk (by adult medical professionals) is the stand-in for uncontrolled environments.  I wouldn't say they're choke artists in the real world but some get so caught up into the idea of 'mythbusting' they fail to become aware they are masters of a small subset of unilaterally self-controlled, and limited, experiences.  Or worse, begin to think they can practice law as well.

The few ped allergists who have LTFA themselves, or their own children with low thresholds inducing anaphylaxis, seem to be appropriately cautious.  Let's face it: this branch of medicine has been gridlocked for at least 20 years without significant advances.  However, there have been wildly significant shifts in beliefs or best practices based on correlative findings and meta analyses on a segment of whole population.

I think this will undergo an organic demographic shift as the first wave of formerly pediatric patients reach adulthood.  At that point the medical relationship will be uncoupled from 'helicopter parents' that must be managed when the now adult patients will advocate for themselves forcing the issue of their own personhood to be acknowledged by doctors. 

http://www.allergyuk.org/blog/blog/post/268-update-from-bsaci-regarding-guideline-on-aprescribing-an-adrenaline-auto-injectora- 

from allergy uk

ooh, lots of questions, yes we can change doctors and have right to get 2nd  opinion.
GP can write and do give prescriptions for auto injector. They can also refuse to prescribe, or possibly after this refuse requests for more than two or one at at time. And this is another huge concern. Gp lack real training unless they have sought it.

Allergy UK and anaphylaxis campaign here are working back ground to get this new guidance clarified.

my son will still keep his 2 auto injectors due to his history of severe reactions.


the new guides outline who would not get one with certain rules. suggesting that someone with a prawn allergy should only carry one for instance.
There are guidelines outlining that patients with allergy must be referred and in some areas that may be for instance a pead consultant in local hospital if they cant refer to allergy clinic,
or they get referred to a local hospital allergy clinic but its part time, and so the first wait for an appointment should only be between 8-10 weeks. because they are part time the wait time is this long, this is due to lack of allergy doctors and funding for full time clinics.
GP can do RAST tests, but really to get the best care you need to be under the care of a hospital allergy clinic.