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Author Topic: Good News/Bad News  (Read 881 times)

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Offline maeve

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Good News/Bad News
« on: November 10, 2014, 03:12:26 PM »
DD was invited to participate in an egg immunotherapy clinical trial at Johns Hopkins. We went last Thursday for our the first visit, which consisted of reviewing the informed consent, drawing blood (to test IgE levels), SPT, and spirometry. We met briefly with Dr. Wood. The nurse who we met with during the visit said that if DD's egg IgE was below 5 that she would be excluded from the study.


I just got the RAST results this afternoon.  Her egg is 3.65. It had been 6.13 in July 2013, when it was last tested. It's good news that her numbers are lower. It's bad news that she won't be part of the study. DD is disappointed about not being in the study.


We're being given a slot to do a baked egg challenge earlier than the November 2015 date we currently have scheduled. She'll have a baked egg challenge February 3. That's good news.


In other good news, her tree nut numbers have also come down and so has peanut. Her peanut was above 100 a few years ago, but had gone down to around 65 in 2013. It was 53.9 in the current testing. Her pine nut number is below .35 kU/L. Most of the other tree nuts are at 1 to about 2.67, except for walnut, which is 6.7. DD has never had tree nuts (actually she's never eaten a peanut either).



"Oh, I'm such an unholy mess of a girl."

USA-Virginia
DD allergic to peanuts, tree nuts, and egg; OAS to cantaloupe and cucumber

Offline CMdeux

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Re: Good News/Bad News
« Reply #1 on: November 10, 2014, 04:27:55 PM »
Oooo-- that IS good news, Maeve.

Honestly, if you can get egg tolerance prior to college without needing to do regular careful dosing (as in a trial-- and really, no guarantee that you'd be in the treatment arm of the study, anyway) I say TAKE IT.   :yes:
Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

Offline maeve

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Re: Good News/Bad News
« Reply #2 on: November 10, 2014, 04:40:12 PM »
For this study, there was no placebo. We would have been in one of two treatment arms. The study is looking at whether baked egg or egg protein powder is more effective for immunotherapy. If she had made it into the study, we would have been randomized into one of those two groups. I can pull up the study info later. It's being run out of Mt. Sinai, and Hopkins is one of five sites for the study (UNC [Burks] and National Jewish in Denver being two others).

I'm just surprised at the decrease in all her numbers. She'll need to repeat the RAST this summer because it needs to be within 10 months of a challenge.

It will be nice to see if we can get her to outgrow egg before college. I just hope that she follows the dosing protocol for baked egg this time. She only did for about a month last time.
"Oh, I'm such an unholy mess of a girl."

USA-Virginia
DD allergic to peanuts, tree nuts, and egg; OAS to cantaloupe and cucumber

Offline maeve

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Re: Good News/Bad News
« Reply #3 on: November 10, 2014, 10:18:21 PM »
Here is the study information from clinicaltrials.gov

http://clinicaltrials.gov/show/NCT01846208
"Oh, I'm such an unholy mess of a girl."

USA-Virginia
DD allergic to peanuts, tree nuts, and egg; OAS to cantaloupe and cucumber

Offline Macabre

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Re: Good News/Bad News
« Reply #4 on: November 11, 2014, 10:11:10 PM »
Maeve I'm sorry about not making the trial, but good news on the scores!

Is he thinking of challenging any of the tree nuts? Burks wouldn't challenge unless it was below 2, and  that's the sense we're getting from Dr. Mary, too, though she hasn't given us a definite number (and we're not there yet, either). 
Me: Sesame, shellfish, chamomile, sage
DS: Peanuts

Offline maeve

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Re: Good News/Bad News
« Reply #5 on: November 12, 2014, 09:44:59 AM »
Mac,
We're scheduled for a tree nut challenge next November. (It takes a while to get on the schedule at Hopkins.)  I'm not sure exactly which tree nuts will be challenged that day, but Dr. Wood did mention hazelnut, almond, and I think pine nut as being in the first round.
"Oh, I'm such an unholy mess of a girl."

USA-Virginia
DD allergic to peanuts, tree nuts, and egg; OAS to cantaloupe and cucumber