Quote from: joanna5 on February 06, 2012, 12:32:19 PM
Oh, that's so disappointing.  I hope they can get more fund soon.  How's your DD handling the news- I know you said she was excited.

She is so disappointed.  We were so close to starting too.  She's okay though and always has such a positive attitude. 

Oh, that's so disappointing.  I hope they can get more fund soon.  How's your DD handling the news- I know you said she was excited. 

Ugh.  What a bummer for study participants.   

Sorry it didn't work out hk.  It's a shame the study ran out of funding.

In case anyone was interested in doing this, the study has run out of funding.  DD was supposed to start next week.  I guess I'm glad we found out before she had to fail 3 food challenges.  They are trying to raise money.  I'll post again if it opens up again anytime soon.

DD got accepted into the study this week.  We start in mid-February.  I'm nervous and excited.  The first few months are going to be the hardest, I think. 

JUST now saw that...


will have to do some investigation into it-- but definitely printing.  Doc will want to review it and vet everything.  Good opportunity later in the week, however, since we'll be there much of the day for a challenge anyway.

But CMdeux--there is a source much closer to you.  I found it a few days ago. Haven't had the chance to tell you. 

Quote from: CMdeux on November 11, 2011, 03:22:44 PM
Any chance that they'll include investigators at any other west coast sites?

Like UCLA?  UW-Med?  OHSU?



Because Stanford is kind of right at our limit as far as driving distance goes... at least for an
"every two weeks" commitment--
it's a full day down and a full day back.  (VERY full day drive, I might add) but Portland or even Seattle is much more do-able.

Oh-- what about desensitization for other allergens?

For example, kids that have been tolerating protocols for ramp up of baked milk or egg.


I take it from your above post that they require a positive DBPCFC to be included in the study?

How would that work for multiple allergens?  Would they do it in multiple visits?  (Because a reaction to one allergen sort of puts the body on a hair-trigger for another for a while, I thought...)

Right now it's just Stanford, but their goal is to do this and get the data out there and (hopefully) get allergist nationwide doing it.  They seem absolutely confident that it will work.  The doctor has previously done peanut and milk studies and some of those patients have transitioned over to the multi study.  My drive is 3+ hours each way (but only because of the traffic) and that seems like a lot so I totally understand you not wanting to do the entire day each way drive every two weeks.  It is only every two weeks the first year, I think.  I will keep you posted if they do it anywhere further north!

I will ask about the baked egg/milk at my next appointment and will let you know.

Yes, she has to fail a DBPCFC to all three allergens before they start the study.  It's actually 4 8-ish hour days at the beginning.  They do blood and skin tests the first day plus a food challenge.  It's 4 total due to 1 day for the placebo.  The first 4 appointments have to be at least one week apart.  I'll probably do at least 2 weeks apart because I am very nervous about all three allergens we are thinking about trying - cashew, egg and sesame.

They think the cashew will also desensitize her to pistachios.  I thought that would be the case and that is a nice bonus.

DD is really excited about it.  I'm trying to make sure she realizes that she is still going to have some food allergies after going through this entire process.  I do think that just the fact that this study exists is a huge step in the right direction

Any chance that they'll include investigators at any other west coast sites?

Like UCLA?  UW-Med?  OHSU?



Because Stanford is kind of right at our limit as far as driving distance goes... at least for an
"every two weeks" commitment--
it's a full day down and a full day back.  (VERY full day drive, I might add) but Portland or even Seattle is much more do-able.

Oh-- what about desensitization for other allergens?

For example, kids that have been tolerating protocols for ramp up of baked milk or egg.


I take it from your above post that they require a positive DBPCFC to be included in the study?

How would that work for multiple allergens?  Would they do it in multiple visits?  (Because a reaction to one allergen sort of puts the body on a hair-trigger for another for a while, I thought...)

I know some of us have lamented the lack of food allergy experts on the West Coast.  Until August of this year, I had no idea that Stanford had any involvement with food allergies whatsoever.  Then our allergist told me that they were recruiting for a clinical trial for multiple food allergies.  I have been in communication with them since then and went there for an 'exchange of information' this week.  They are doing OIT for 1-3 allergens on each person who participates.  One of the most interesting things to me is that they are doing it for tree nuts.  I'm going to post the basics of this study below and will write more later.  They are also going to start a trial involving a peanut patch at the beginning of next year and another peanut study in conjunction with the NIH.

The allergen is given in a flour.  You go there every other week and dose at home on the other days.  The team is available 24/7 for questions/problems.  The study is being lead by Dr. Kari Nadeu, who sounds like a pretty amazing human being.  The only frustrating part is that you have to have a RAST of 7+ on an allergen for it to be considered for the study.  DD has had ana reactions to allergens with a RAST of 1.5.  I know they have to have a cut off point.  I just wish we could do one of the other allergens!

That's all I can think of at the moment.  Let me know if you have any questions.  We are strongly considering having DD participate in the study.  We haven't been officially accepted into the study, but I was told that someone would contact me to schedule the next appointment so I *think* we have the option of doing it if we want to.

Stanford Multi or Single OIT
5-55 years old

Blood Specific IgE > 7
OR
Skin Test>6mm+
DBPCFC (+)

OIT
Almond  +/-
Cashew  +/-
Peanut  +/-
Milk  +/-
Egg  +/-
Soy  +/-
Wheat  +/-
Hazelnut  +/-
Sesame Seed +/-
Walnut  +/-
Pecan  +/-

Outcomes:
1)   Safety
2)   4g
3)   2 years in Study