OIT may not produce lasting effects?

[twinturbo]

Awesome, and in talking to DH realtime and editing post it's possible by using a software called Mendeley to set up an FAS-only repository of papers for shared reading. The access will be limited but between academic access and calling in favors with med friends it can get done. Accounts will be limited but should be sufficient. A rolling wishlist of papers would have to be established as well.

I gotta reread this thread a couple of times, too. It's like the afterconference conference.

[CMdeux]

Okay-- in conjunction with that-- this is HUGE news, by the way--

the feds have now insisted that federally-funded research MUST be open access.  FREE, in other words.

Seriously.     No more pay-to-view journal articles that our tax $$ paid for!!  YAY!

[Gray]

Anyone who's been through at least one oral challenge knows you have limited input on the procedure itself because of established protocols, and it's the doctor's notes about the challenge that get recorded.

This is very true.  During our IOFC, our dd had facial hives, but these were not recorded in the record.  It was written as a completely clean pass.

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

CM - Thank you so much for sharing this with us.  Thank you for listening to our story when doctors were turning their backs on us.  I knew I had to get another allergist from what I learned here at FAS.

[GoingNuts]

Gray, I'm so glad you found us. 

[Macabre]

[lakeswimr]

DS passed an IOFC and ate the allergen at home a very short time and then had a more potent form of the allergen and failed at home (dr approved to do that at home) and it was as though that turned on a switch in him.  He reacted to every form of the allergen and smaller and smaller amounts and I couldn't keep it in his diet.  The allergist has a very hard time to accept this and has since skin tested him and seen a big positive result to that same food that had a neg skin test and which DS at in front of him in the challenge.  He seems to have the belief that you can't have the allergy come back that quickly.  It really did seem that the time I gave him the more potent form of the allergen (not that much more potent than what he ate in the challenge) flipped some switch in him to make him even more sensitive than he was before the challenge.    Allergist wants to skin test again for this (and other foods) soon.  I will go along with it but I know DS will test positive.  He is allergic to that food now. 


This same allergist doesn't believe you can have contact ingestion ana like DS has had and insisted DS must have eaten something and lied to me.  DS would not do that.  Even years ago when much younger he remembered ana well and didn't want it again.  He has never once tried to sneak food.  He knows I'll give him whatever he wants and make up for anything he misses.  So, it does seem there are set beliefs about things like this.  I agree with bandboosmom that allergists do have to deal with a bunch of patients who think all sorts of untrue things, people who have had 'ana' to placebo during challenges, and much more.  Dealing with that all day would make me sceptical, too. 

[sbs]

Welcome to the impossible world of "my food allergy doesn't fit your theory."     )

I'd like to frame this quote!

[sbs]

DS passed an IOFC and ate the allergen at home a very short time and then had a more potent form of the allergen and failed at home (dr approved to do that at home) and it was as though that turned on a switch in him.  He reacted to every form of the allergen and smaller and smaller amounts and I couldn't keep it in his diet.

Do you mind me asking what allergen this was with (if you'd rather not say, I understand)?

This same allergist doesn't believe you can have contact ingestion ana like DS has had and insisted DS must have eaten something and lied to me.  DS would not do that.

I thought it was generally accepted that contact ingestion ana can happen.  Are you considering switching allergists?

[ajasfolks2]

Threads like this one

Raison d'être

for Foodallergysupport.org . . .

and core reason for many here to have continued with FAS and this group of parents and food allergy families.

 

[ajasfolks2]

(And thanks for the link, Ajas!)

No, THANK YOU, boo for your blog.

Truly.

 

[LinksEtc]

http://www.medscape.com/viewarticle/779896

From the above article (my bold)...

We've worried that a patient may leave a study with a false sense of security.... Some of the more dramatic failures were kids that looked like absolute successes at the end of the study

I was just thinking that I find that infamous phrase very appropriate in this context.

[LinksEtc]

As to FAHF-2, OIT, and Dr. Li, during the time I was establishing with her as a patient DH corresponded with her a bit. One of his direct questions he asked about the possibility of using FAHF-2 in conjunction with OIT in similar way to Boston's Xolair-milk studies: she declined to answer and we of course didn't push it.

I'm wondering if (you/your dh) partially inspired this.
http://www.asthmaallergieschildren.com/2013/04/20/history-is-made-at-lunch/

I or a mod can delete this post if you'd like, but I just had to ask.

[twinturbo]

Doubtful. My best guess would be she and associated others had thought of it already but kept it mum with us. She could have also glossed over it since it would require more than a yes or no answer. What may interest you Links is the Dr. Li's background is similar to that of the current go to FDA folks whose purview are these medicanl herbs. Give me 15-20 min to edit a link in here to the Asian consortium she was part of back in about 2010. It looked like a regional conference akin to AAAI. All the big names surrounding TCM for FDA approval seemed to be there or the names there led me to them. Regardless they are all 'dual' medicine MDs for lack of a better term IIRC.

I think DH and I had a lucky guess is all.

ETA: No go. The page is gone. I'll try to find it a different way.

[LinksEtc]

Hmmm, pretty cool!

Thanks for looking for the link, but it's probably not something we're personally interested in at this time.

[twinturbo]

Totally understood. I meant interesting as in there seems to be a growing contingent of qualified MDs on both sides of the equation working in research and the FDA sharing similar backgrounds. It's like TCM coming out of the closet to join the ranks of the well studied pharmaceuticals. At least movement to get what has been in use for a long term to finally be set to scientific rigor.

That there are FDA officials with this sort of background surprised me. That they're working at least partially with MD researchers at Sinai of a similar background makes me super interested in where they're taking it because it's more big city medicine you'll find on the mainland than the small alt med shops independently run.