still very good news!  Will  open up more choices / coversations on new comfort zones ahead!

we saw our sons allergy doc on tuesday, and he said son would be ok to eat cooked egg again and offered a food challenge. Son again said no. he is 16 so I dont feel I can push this as we are still dealing with the angiodema caused by excessive amounts of histamine reacting to each other in his blood.

to add baked egg will mean that he will be able to enjoy a wider range of foods, as he is still underweight but still growing up iyswim.

now looking for adult immunologist, pead doc as asked for more time to FIND one.

i am so glad that your daughters world , allergy wise is going to get slightly easier, will make travel and other future adult /student life less stressful.

Today's update-- and I realize that I hadn't updated from our allergist's appointment back in early October, either!!

DD has been off of her egg dose for... er... well, "a while" now.

Frankly, she had trouble REMEMBERING to do them, and also had trouble remembering to TELL me that she was running low, which was an incredibly big deal since the process of making the individually portioned dose-controlled eggy stuff is still...

well.  We have to get eggs from a friend, I have to clear the entire kitchen and preheat my oven (which contains a pizza/bread stone) for an hour, and then make things in batches-- and I can either portion things as I go (oy vey... this means 1 tbs in each of 50 or so mini-muffin cups) and treat everything as though I'm handling toxic waste.... or I can handle everything as though I were handling toxic waste and make a "pan" of brownies and then cut them up and weigh them as I go...

I prefer the mini-muffin route, honestly-- less weighing and crumbs, and better dose control, ultimately.  It's more labor intensive on the front end, no doubt-- but it's also neater and it leaves me getting my kitchen back after just a few hours (as opposed to wrapping a pan of brownies overnight for easier cutting and portioning the following day).

102 mini-muffins and 307g of egg later, I have made 102 mini brownies at 330 mg of protein each.  GO, me!   


Why, one might ask, are we sticking with this level of dosing and not pushing things higher?

Well, because of the research coming out now.  As we raise the dose, we also raise risk-- because if her tolerance were to snap back down for some reason (and we've seen it happen before-- we know that tweaking her immune system is like pushing a sheet of styrofoam underwater... if you push in one spot, something is going to tip upward elsewhere)....

then we're courting anaphylaxis if that dose is 1000 mg rather than 250.

So at our October appt, his recommendation was to "NOT" up either the dose or the concentration.  Both matter, and we want to play it safe.

This one has some different information.

http://www.webmd.com/diet/news/20120718/egg-therapy-may-help-allergic-kids

Oooooo... VERY interesting quote, this:

QuoteResearcher A. Wesley Burks, who chairs the Department of Pediatrics at the University of North Carolina, Chapel Hill, tells WebMD that an important goal of future research is learning how to identify who will and will not outgrow food allergies early on and who will benefit from oral immunotherapy.

He adds that the fact that four of the children in the study had to drop out because of allergic reactions suggests that the therapy will not work for everyone.

"I think there is probably a small percentage of kids who will not tolerate a treatment like this, and we need to learn how to identify them early on," he says. "But for kids who do respond, this treatment can be life altering."

THIS is why our allergist has steadfastly maintained that immunotherapy is "highly experimental" at this point in time-- moreso for anyone that has had a severe reaction (like DD, who technically might have been excluded from the OIT trial reported in the study b/c of questions about past reactions involving BP changes).

We are hoping that DD is in this group that can derive some benefit, but the truth is that we don't really know.  She has not been seriously ill in the 20 months that we've been dosing with egg, and we're aware that any tweaks to the immune system (like illness) can cause unpredictable changes in reactivity in some people. 

Mostly, I want to emphasize how much this is still sooooooo not a weekend DIY project.     While what I'm doing may SEEM like it's a personal DIY project, this is being done with the full consultation of a VERY good food allergy specialist that has a direct number for some of these research gurus-- and uses it regularly.  I know that he's gotten advice re: our DD from Burks in the past-- and maybe even from Sampson. 

Stay with me here-- there's definitely a point that relates to the thread!   

http://www.eurekalert.org/pub_releases/2012-07/jhmi-cat071512.php

Quote
Children allergic to eggs can benefit from 'egg therapy'
Study shows oral immunotherapy can retrain the immune system


Giving children with egg allergies increasingly higher doses of the very food they are allergic to can eliminate or ease reactions in most of them, according to results from a federally funded study conducted at Johns Hopkins Children's Center and four other U.S. institutions.

The research findings, published July 19 in The New England Journal of Medicine, add to a growing body of evidence showing that feeding escalating doses of a food — an approach known as oral immunotherapy — can, over time, condition the immune system to tolerate the food with minimal or no reactions. Recent, smaller studies conducted at Johns Hopkins and elsewhere have shown the approach can also be useful in treating children allergic to milk and peanuts.

The researchers say the results are promising but caution that, at present, oral immunotherapy is still considered experimental and should not be used outside of a strictly controlled research protocol.

In the current study, conducted as part of the NIH-funded Consortium of Food Allergy Research, 35 of 40 children treated with egg immunotherapy experienced improvement. Five of the 40 patients dropped out of the study, four of them due to allergic reactions related to treatment. Eleven of the 35 patients experienced complete long-term elimination of egg-related allergic reactions, the most sought-after therapeutic outcome. The rest of the children were able to tolerate higher doses of egg with only mild or no symptoms, but lost some of their tolerance after discontinuing treatment. However, a higher threshold of tolerance, the researchers say, is an important therapeutic endpoint because it can protect against serious allergic reactions from accidental or incidental exposures and give patients and parents a peace of mind at restaurants, parties and other venues where food control is difficult or impossible.

"More than a quarter of the children in our study lost their egg allergies altogether, but we also saw dramatic improvements in those who didn't, which in and of itself is an important therapeutic achievement," says Robert Wood, M.D, director of allergy and immunology at Johns Hopkins Children's Center. "These children went from having serious allergic reactions after a single bite of an egg-containing cookie to consuming eggs with minimal or no symptoms."

In the study, 55 children, ages 5 through 18, received escalating doses of egg-white powder or a cornstarch placebo for 10 months. Thirteen of the 15 patients treated with placebo failed an oral food challenge, which requires a child to eat under medical observation 5 grams of egg protein, or the equivalent of half a large egg. Two placebo patients had dropped out before the challenge.

After the initial 10-month buildup, 22 of 35 children treated with egg whites were able to consume 5 grams of egg protein, 14 of them without symptoms. All 35 children continued to consume small doses of egg whites daily for 22 more months — the so-called maintenance phase, during which daily exposure to small doses of the allergen is believed to build tolerance. At the end of the 22-month maintenance phase, children underwent a food challenge with 10 grams of egg whites. Thirty out of the 35 children passed the 22-month food challenge. Those who passed the 10-gram food challenge then ceased all egg consumption for four to six weeks and underwent a final food challenge after the "abstinence" period. Eleven children were still able to tolerate 10 grams of egg protein — the equivalent of a large egg — without any symptoms and were considered completely cured of their allergy. Being able to consume eggs without a reaction after a period of abstinence is considered the true marker of sustained tolerance, the scientists say. During a phone follow-up one year later, all 11 reported eating eggs and egg-containing products without symptoms as frequently or as infrequently as they chose.

The fact that most children lost some of their tolerance after only a month of abstinence underscores the importance of daily exposure to an allergen to maintain tolerance, the researchers say.

An estimated 4 percent of U.S. children have food allergies and, by age 3, nearly 3 percent of children have evidence of egg allergies, the researchers say. Some children outgrow their food allergies, but for many they are life long and require complete avoidance to prevent serious or life-threatening reactions.


###

Other institutions participating in the study included Duke University, University of Arkansas, National Jewish Health, and Mt. Sinai School of Medicine in New York.

A. Wesley Burkes, M.D., of Duke University, and Stacie Jones, M.D., of the University of Arkansas, were lead authors on the NEJM report.

Emphasis mine.  This is very similar to the protocol that we have been following w/ our allergist's advice (though we are using carefully monitored doses of highly cooked whole egg).  Our allergist offered us the chance to try doing this with baked egg after discussing the protocol with the Duke team and trying it out on his own (egg-allergic) child. 

We are also nowhere near these amounts nor rate of increase-- DD is, after nearly 20 months of daily dosing, up to almost 330 mg of protein.  That's a long way from even 5 g (5 g = 5000 mg), but it seems to be "holding" the way that we are doing it-- that is, I deliberately took her off of that daily dose at the 300 mg mark for over four weeks and then reintroduced the same dose.  The first day, she experienced some diffuse symptoms that may or may not have been egg-dosing related.  It's certainly possible.  DD is not a good candidate for an out-grow given her age and history, so we have little to lose by trying this (as long as we're extremely conservative, which we have been).  I figured that 20 months in was about right in terms of seeing whether or not we're affecting real change that will 'stay' after we quit dosing.  If it doesn't stick, then we don't really have a good reason to take the dose higher, and it certainly increases risk to do that. 

Our intention is to make an accidental ingestion less likely to provoke life-threatening anaphylaxis, though-- not to force true tolerance.  We're given up on that particular item.  If her milk allergy is anything to judge by, she may never have full tolerance anyway.  But one less thing that can kill her would be good.   



I'm going to cross-post this down in the egg forum under my DD's challenge thread.

Wonderful! 

That's great news!!!  So happy that it worked out okay for her.   

That is such a wonderful thing to hear. So glad that she did not have any issues after being off egg.

Update:

DD had to be off of her daily egg dose for a week surrounding oral surgery, so we were nervous (understandably, esp. in light of recent preliminary data shared at AAAAI's national meeting) about what this might mean as we started re-dosing this week.

Backed the dose back to a split 200 mg (that is, 100 and 100) the first day just to be on the safe side, but she's up to 230 mg this week.

  With no symptoms.  None.

(This is a pretty big deal to us-- I'm starting to think that we should maybe push a little harder on the dose at this point.)

Knowing where you started, her dose is HUGE!   

I know-- it feels like a HUGE deal to us.

I realize that in perspective, it is still pretty small amounts of egg, though... I mean, this is 1/30th of an egg.  After a year. 

Still, just knowing that she could tolerate something done in the same fryer as an eggy-battered thing is ENORMOUS.  Knowing that cross-contamination in pasta isn't such a problem.  YK?  We'll allow things that are on shared lines now with egg (provided they are cooked well).

Wow! I haven't checked this topic out in awhile- that's amazing, CM! Just amazing!

DD is doing great-- she's went all the way up to a 170 mg dose, and then we cut the dose back again to ~100 mg because we increased the concentration.

In other words, I made my family size box of brownies the way the box told me to.     <tears>  That was a surprisingly big deal to me emotionally, I have to say...


I cut those into pretty small pieces and I weighed them and sorted them by where they came from in the pan (inside ones are not as "crispy" as the outside ones are) and on how much they weighed... <8 g, 8-10 g each, 10-11 g each, or <11 g (up to about 13-14 g).   Yes, this was somewhat time-consuming.  I freeze the boxes so that she can pull the right one out when she needs it.  This makes about 65 doses, so a single batch, while a fair amount of work to prep carefully, lasts about seven weeks.

She's been eating the 8-10 g brownies this week, and those contain about 110 mg egg protein each.  The end of next week, she'll step the dose to ~130mg if this continues to go well.

wow.  Just amazing.   

DD is up to 120 mg daily without any problems--

today is another brownie-baking day.   


1 box family size dark chocolate brownies (Betty Crocker) 563 g package weight.

1 tub baby prunes + apples- 99g package weight

1/2 c Trader Joe's CANOLA oil

1/4 c water

and

1 med. egg (the two in today's batches were 51 g and 53 g respectively)-- weigh with kitchen scale to determine mass used

---

This will make a huge pan of brownies.  I bake them a minimum of 35 minutes at 360F.

For batch A (the 51 g egg), the total amount of egg protein in the preparation is as follows:

Fresh egg is approximately 11-12% protein... so this is

51 g (.12)= 6.120 g protein, or 6120 mg.  (Remember, this is PER BATCH)

Cutting into portions, we'd like for this to be approximately another 10 mg step in dosing...

Dividing 6120 by 140 mg, we get nearly 48 servings.  So I will cut the brownies into 48 portions of equal size-- this is a nice 6 by 8 cutting scheme, which works out well since both are even numbers.  It's much easier to cut things in half rather than into thirds or fifths.



So that will be 48 squares at ~126-128 mg each (or thereabouts).

The SECOND batch used a larger egg--

53g. 

That means that the total protein in that second batch is higher-- 6360 mg.

Cutting THAT batch into 48 portions will give doses which are about 133 mg each.  We may try to push it higher than that, however.

I'm thinking that a 6 X 6 = 36 square cutting scheme is probably about right.  That's a bit over 175 mg each.

---

DD won't be into that batch until November (I keep these in the freezer and we pull a container of them out about every ten days.