If you were an allergy researcher ...

[LinksEtc]

Why in the world would it annoy me?

I read what you wrote about being interviewed by them so I didn't want you to take my post in a way that it was not intended.

"FA group" politics & personal conflicts are emotionally draining for me, so when I link somewhere, I'm just focusing on "is this an interesting idea or good info" .... but I realize that my intention might not always be clear to others.

I personally care about a lot of people here, but I feel most comfortable posting as the info-focused Links.

There's (seriously) nothing I love more than discussing fecal transplant!

We are indeed a strange and wonderful bunch here at FAS 

And sorry...didn't see your note above about linking my blog. I guess it wouldn't hurt anything. I do try not to tie my personal ID to my blogging ID, given my son's real discomfort with it all, but I guess my ID here is somewhat removed from my RL identity. Thanks!

No problem .... I completely understand!

I will say that I'm glad you're posting more here ... I think your viewpoints add a lot to our discussions.

[booandbrimom]

Thank you, Links - that's very nice and very appreciated right now. I think the online world can be a weird place and I agree about the on-line drama being draining.

I really don't care that much about the asthmaallergy site guy. It made me angry that he didn't disclose that he was going to be making money off the info I provided, but really - it seems like there are so many people now who are in it for the money. It was just a really dishonest way to do an interview. But, on the other hand, I assumed, so it was my fault too.

I think it would be the ultimate irony if the FAHF-2 study report comes out right before his book and it's negative. As I said in my blog, the researchers at the Chicago site were not too hopeful about the results. There were apparently only two dramatic responders in our group (my son and another MFA child).

[booandbrimom]

You're just a sh**-stirrer at heart, aren't you?   

I didn't used to think so...but I'm having to reassess things as I age. 

[CMdeux]

I'll reiterate that.  It's really good to know that there are still some of us doing this for no real hope of anything but paying it forward.   

(Hope you know that my comment WAS a teasing one in light of the topic of convo-- not really a comment on you personally.... er-- well, okay, maybe it was a little, but said in the most loving way imaginable.  I think what I mean is that I have a soft spot in my heart for this sort of thing to start with, and you're my favorite... er... well, my go-to person when it comes to poo.  Microflora isn't my area, yk?)

[ajasfolks2]

 

We've always been that diverse group    . . . the "old" padotcom folks and forward . . .

Glad to see you, boo, posting . . . and always interested to read blogs.

[booandbrimom]

(Hope you know that my comment WAS a teasing one in light of the topic of convo-

Of course! Really - I appreciate all of you guys. Horrible couple of weeks at the day job, so it's nice to "see" familiar faces.

[CMdeux]

Maybe you should work fecal transplants into conversations more often?   <-- this is me, being helpful and supportive. 

In all seriousness, I am wondering increasingly if "food allergy" is even the SAME phenomenon in all patients.  I'm guessing that the underlying immunology may not be following identical pathways.  Sort of like how "asthma" isn't one condition-- it's a symptom.

I think that might explain how some treatments work for some people-- but not all of them-- and why even things that SHOULD work for everyone... don't.

[LinksEtc]

So, here is (maybe a bad) idea ...

What would happen if docs started giving their patients "pop quizzes" at the annual ped and/or allergist/pulmo appt?

Show me your Epi's.

Show me your albuterol.

Show me your action plans.

Demonstrate how to use these.

What should you do in this situation?

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

Bad patient - get that prescription filled 

Bad patient - you should always carry   

In that situation, according to the plans - see - you should handle that situation this way.  Here's some more educational material that might be helpful.

You get a gold star for awesome job 

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

I'm 1/2 joking, but hey, I think the idea has some potential if it could be done in a way that doesn't offend.

[CMdeux]

Ours does do some of those things.  Usually not forever-- I mean, ours doesn't now with us, but that's because we passed with flying colors for close to a decade.  There is a patient-friendly way of doing it that is compassionate and non-confrontational. 

[LinksEtc]

You, pass with flying colors ... just kidding. 


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Some updated food product cross-contam studies would be nice.  I'd throw a few more allergens in like sesame & corn.
HELP! Studies as to X-contam, may contains, etc

[ajasfolks2]

Links, remember the study that showed how (painfully) few doctors actually knew themselves how to properly use the Epipen?

Maybe that's changed now that there is AuviQ to tell them what to do.   

[LinksEtc]

Links, remember the study that showed how (painfully) few doctors actually knew themselves how to properly use the Epipen?

Maybe that's changed now that there is AuviQ to tell them what to do.   

Ajas, I'll join you there ...   

You know what they say .... one often learns best by teaching   

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

Seriously, without docs, I doubt my dd would be alive today ... I do not put myself in the same category as docs ....however, I have been through enough to know that they make mistakes and that sometimes I do know more on a particular topic.  I don't say this to be arrogant .... just to give an example ....

I once had a doc insist that hummus (with tahini) should not be a problem for my sesame allergic child.  It didn't matter what I said or what article I brought in ... as a patient's mom, I could not convince her otherwise.  Funny thing is I liked her and we even kept in touch for a while after she moved.  I knew she had my dd's best interest at heart and she helped my dd medically in other ways, but we had to agree to disagree on that topic.

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More research topic ideas    ?

[twinturbo]

I don't think most stock or use autoinjectors. Even in ambulance, ER, and anaphylaxing at allergist's office they all drew up syringes. The data plot chart displayed by Emerade on injection factors illustrated the value of needle length wrt subcutaneous v intramuscular. I don't remember if force of injected liquid was a factor.

If that was a lone Swedish study I'd love to see that reconfirmed with others, including the higher 500mg dose.

[LinksEtc]

Over a period of years, why do some people have very large SPT's yet negative RASTs to an allergen?

[booandbrimom]

Over a period of years, why do some people have very large SPT's yet negative RASTs to an allergen?

Having worked in the lab industry, I can answer that to a degree. Not all RAST tests are the same. The more obscure the allergen, the less reliable the test (because the companies that make them have less feedback to refine them). There can be different proteins from the same food that trigger an allergic reaction, and proteins in general are not homogenous. There was an interesting study I read once that demonstrated that cat shots made from female cats were significantly different than those made from male!

Some people also are just not "stickers." The allergen has got to bind to the plate substrate and some people are quirky. That's why it's possible to be allergic, yet test negative. It's also why the number ceases to matter after a certain point - being "stickier" on the lab test doesn't mean you're necessarily going to be more reactive.