Egg Allergy Treatment Programs

[kw]

As parents who have battled like many of you on this board on keeping your children safe, us primarily through avoidance, we are beginning to feel as though we haven't done enough for him to seek out treatment options to live a more normal life.  Our oldest son, 13, failed the baked egg challenge several months ago and think inadequate instruction from our allergist may have contributed to the failure.  We have another 10 year old son that suffers from the same allergy. Our allergist preaches avoidance, and while several years ago thought she was very good, now have second thoughts.  We live in north west Kentucky and wanted to see if anyone had recommendations on where we may go to investigate treatment options.  I guess we are having a pity party seeing that the kiddos have missed out on a lot of activities and faced social challenges perhaps because we didn't do enough.  Any places you would suggest?
Thanks

[lakeswimr]

I'm sorry you are feeling frustrated by things right now.

Do you might if I ask what happened with the challenge?  Did you do it in office or at home?  How much did you give and what type of reaction did your child have?

I would want to trail your younger child on baked egg.  Avoidance is great but if a person can do baked egg they should IMO to help outgrow the allergy.  Good luck!

[CMdeux]

KW,  there are many of us here with kids of similar age who share egg allergy in common.  My DD (now 15) completed a vastly modified food challenge for highly-heated egg when she was 12, since she demonstrated no signs of outgrowing.  We were surprised when she passed-- but I will add that this was a VERY different thing than a regular in-office food challenge.  The precision that was applied was so that we could determine a safe starting dose to deliver low levels of egg protein SAFELY at home.  Every day.  This meant that I measured everything by weighing, and carefully made individual dosing portions, which I kept in the freezer.  I made egg doses about every three months.

We gradually increased the amount of protein tolerated until she could handle as much as 1/16th of an egg in baked into a single dose.  I don't think that we ever went much higher than that.  Our goal is to prevent reactions from contact, from accidental environmental exposures, that kind of thing. 

The thing is, though-- MOST baked egg challenges use that kind of level as a starting point for the challenge.  At my daughter's challenge, she consumed 1/90th of an egg, baked into a 9 X 13 pan and portioned into 45 servings.  So you can see-- way, way different than a "yes/no" answer.

Please read down in the egg allergy sub-board at the bottom of the page.  And don't give up hope-- I never thought that we could be where we are today, 3y later.  My daughter has a freedom that she could not have had otherwise-- and when we started, she was one of the unlucky and rare people who (seriously) can't get a flu shot.  She didn't even have a minor/local reaction to last year's flu shot!!  (I know, pretty amazing-- right??)

[kw]

I will have to check with my wife on the recipe but just the instructions seemed somewhat confusing.  We thought it was going to be for a starting point, but based on the recipe the Dr. said checking for yes/no result.  Anxiety plays a big part for our son and is always nervous.  Never heard of the blind test until researching, and our Dr. never mentioned that.  I will have to get with my wife also on the reaction symptoms but EpiPen was administered and this was done in Dr.'s office.  All we want is help keep both safe in case of accidental exposure.  Disappointed that the Dr. has not offered any other type of treatments so exploring other options.
Thanks again,
Kelly

[CMdeux]

How far are you willing to travel?

There is world-class food allergy treatment available in either Chicago, Little Rock, Baltimore, or of course NYC.    It wouldn't hurt to call around to a few of those major research centers and see who they recommend a bit closer to you.

Another thing that you might consider is the center at La Crosse WI, which does desensitization via SLIT.  We have a few members who have done that.

[maeve]

Duke might be closer to NW Kentucky; though I think Dr. Burks is now at UNC.

My DD did the baked egg challenge 3.5 years ago. Her starting dose is 1/16th of an egg. She has not continued with the protocol of keeping it in her diet. She says that it upsets her stomach.  That said, our guidelines from her allergist at Hopkins (Dr. Wood) is that she can have commercially baked goods where egg is in the bottom third of the ingredient listing and we don't have to worry about shared lines.  She has now had the flu shot without problems for the past three years. That itself has been life-changing because she used to get the flu every year (including H1N1) which is problematic with her asthma.

[kw]

I think Chicago would probably be closest and is only 6 hours away from us.  Would you happen to have any more contact information so we could investigate?  Thanks to all responses.

Thanks

[maeve]

I have contact info for Johns Hopkins but not anyone in Chicago.

[CMdeux]

I don't, either-- but I know that we have several members in that general area-- Boo would know best, but I don't know how often she drops by.

You might check in with her over at her blog-- she's the FoodAllergyBitch.  Pretty sure that she checks the e-mail on that account more often than she checks in here.

[hezzier]

I used to live in the St. Louis area and a friend drove her son up to Chicago for oral immunotherapy for peanut. 

Dr. Sakina Bajowala is the doctor they saw.  The process worked for him and he is on a daily maintenance dose of peanut. I'm not comfortable broadcasting her blog without permission, but if you send me a PM, I will send you a link to the blog.