Desensitization Programs in the US -- OIT SLIT SCIT

[CMdeux]

"Oral Immunotherapy for Food Allergy: Not Ready for Prime Time"
http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/

I wish to caution that widespread adoption of any OIT methods is premature, and may lead to crushing the hopes of patients, and worse.

This is exactly what our allergist has suggested re: peanut with our DD.  (Much to our disappointment, obviously)  He has also cautioned us that baked egg may not be a true "cure" but that isn't our goal-- our goal is to establish sufficiently high tolerance so as to make anaphylaxis less likely from casual exposures.

[booandbrimom]

CM, if you didn't see this one, you'll find it fascinating:

http://allergynotes.blogspot.com/2012/04/oral-immunotherapy-oit-for-food-allergy.html

I love this blog!

[CMdeux]

   Exactly:

There is a risk for unanticipated OIT reaction (not during buildup) when the patient has fever, viral infection, exercise, menses.

(emphasis mine; how often would one of those conditions be true for an adolescent?)

In a study of 19 patients on OIT for 33-70 months, OIT was stopped for 4 weeks: 11 remained tolerant to 5000 mg of PN.

That's actually a very disappointing statistic, even if that failure rate is 10-20% high due to small N.   That is a LONG time to be at maintenance or in treatment only to regress like that.   

[aggiedog]

I just left a comment to Dr. Sampson's article in favor of OIT.

I know there are unknowns.  I know dd may need to take PN's for life.  I wasn't looking for a cure.  I was looking for a better day to day life with PA for her.

She and I both feel we achieved that goal.  When she asked what I was typing, and I told her, she was mortified.  "Why wouldn't you do it?  I am sooooo glad I did.  I love being able to do all these things now."  I know that a 9 year old is not going to understand the necessities of rigorous research or complexities of new medical treatments, but at the ultimate level of her life experiences, she will tell you any time you ask that this was the best thing that ever happened to her.  She still says the best day of her life was the day we started treatment.  This was an 8 hour day that involved a blood draw, more grape koolaid flavored doses of PN than she'd ever care for, and a shot of epi for a possible reaction at the last dose.  STILL her best.day.ever.

I understand it is totally possible to live a full, wonderful, adventurous life with FA's.  I also know it's a lot easier with the FA's no longer the main concern. 

[hedgehog]

Aggie, that's exactly how I feel

I don't consider DS's treatment a "cure" and I don't care that it's not.  The reality is that it makes his life better.  It gives him more options and less stress.  I'd said for years that if it was as simple as not eating peanuts, life would be so easy.  Well, now it is that simple.  He may have to eat 3 a day for the rest of his life for maintenance, but that's OK.  And it's not known whether this will last his whole life, but I certainly hope it does.

I honestly think that getting DS desensitized is the single best thing I have ever done for him in his life.

[momma2boys]

Oh, I would take ds for desensitization in a heartbeat. He comments often that he wishes he could do it.  Just to take that level of anxiety away from him would change his life.

[Macabre]

Raising

[ajasfolks2]

As with opening post, am looking at options as we look to move next spring/summer . . . perhaps to area where OIT or other potential studies/therapies available to our LTFA children.

Glad to see this re-raised.

[ajasfolks2]

Do we have a dedicated "list" going here already in a MAIN thread?

It would be nice to have this here and allow folks to contribute doc/practice names and info, but still remain anonymous if wish.

[hedgehog]

This is where DS went:

http://www.nefoodallergy.org/

And, might I add, Dr. Mendelson is terrific .

[CMdeux]

We had a list like this at one time-- I think SoupToNuts (?) started it?

[GoingNuts]

Good to know, HH.  A friend who lives near Stamford just emailed me about them this week, asking if I knew anything about them.  She wants to take her 17 y.o. DS there for desensitization.

[hedgehog]

If you would like to give your Friend my contact info, pm me.

[Macabre]

Can we merge threads with the one we have? It's already 5pp long.

Desensitization Programs in the US -- OIT

[Macabre]

bump