Rast went from 12 to 2.6 in two years. Is that a level that can be challenged

[dlibby1angel]

Success!?

Isaac ate 1/2 muffin (giant) without trouble. He did not want to eat the third quarter because he said his stomach didn't feel good. Unfortunately dh felt it necessary to force the issue, saying the nurse WILL have him eat it so he could clear with one muffin. Poor kid began to cry and got hot and began to get blotchy with the beginnings if hives. Not the kind he gets when he has an exposure, but the emotional hives. I was so angry at dh for pushing him so hard. I said the nurse is not going to make him eat anything and it was okay. Thankfully the timer went off and she did not force him to eat it. As soon as Isaac knew he wasn't going to be forced, his whole demeanor changed for the better. After 20 min the blotchy skin was gone, hives gone and he said his tummy was fine. The doctor came in to examine him and said it all looks good. We waited another 30 minutes and Isaac was completely fine.

The allergist said he can now eat any item with baked egg, once or twice per week. Isaac does NOT want any more of the muffin I made. He also said he doesn't want anything with egg in it, not even Grandpa's super choc chip cookies....

Do you agree with the doctor? No need to dose, just eat away, twice per week?

We have now been home for an hour and Isaac says his tummy is okay, but he wants NOTHING for lunch....he isn't hungry....

This is a boy that eats a lot of food normally. At meals he just asks if "someone can pass him something" doesn't care what, just anything.

[CMdeux]

I'd be cautious based upon that.

Pick his favorite-favorite-favorite thing and just quietly begin MAKING that item with about 1/2 to 1/3 as much egg per serving as he had at the challenge.

Tell him matter of factly that the doctor feels that it's a good idea for Mom to start using eggs in a few things, since the challenge indicates that this will be safe for him.

It's (IMO) probably important that he get SOME ingestion in order for greater tolerance to 'stick.'  Does it need to be daily?  Weekly?  Nobody really knows at this point-- just that continued avoidance is a way to a lower threshold.

I'd also not make this about FOOD because it really isn't about fun stuff that he'll be able to eat.  It's about other things-- going places, activities, etc. etc. etc.

I'd definitely talk that part up.  How now it will be okay to visit a FARM!! With repeated dosing, even restaurants that serve eggs will be allowed... fun shapes of pasta (that are run on shared lines)... sleepovers...

Really, even a little bit of tolerance for egg (or milk) changes so much.   

[twinturbo]

That's what our allergist says about our oldest child given his history of previous egg tolerance. He's in the statistical norm for the most part--that if you can tolerate a little baked egg you more or less have that as a baseline tolerance with high heat treated egg in general for baked goods. How heat treated and how much egg is the chaos factor.

My youngest would require an extreme regimen.

[maeve]

I'm going to be the outlier here. DD tolerated half a muffin but like your son complained that her tummy didn't feel right at her challenge. Her dose was set one step below what she tolerated (1/4 of an muffin/cupcake). However, she was also dosed with 4 teaspoons of Benadryl at her challenge to treat the stomach symptoms. She did not have an ana reaction.

We started our dosing per instructions and she tolerated it for a couple of weeks. But then she got sick and I didn't dose her while sick. Then she started complaining her stomach hurt. My allergist's nurse suggested what would essentially be a blind challenge--baking a batch of the same item with egg and a batch without and feeding it to DD without telling her which had egg in it. I refused to do that. Our protocol does not include brownies (that's much further down the line in the Hopkins protocol), and DD doesn't eat chocolate cake, so "hiding" egg would have been next to impossible. In addition, I refused to trick her because I and my DH have to be the two people on earth that she trusts unequivocally about food. Deceiving her would have eroded her trust in us.

At her appointment 2 years ago, Dr. Wood left the decision to her and also said that her stomach complaints might not be anxiety as I thought but true allergic symptoms. So I've let her be the guide. She had RAST testing again this year and in letter with her results was a note saying we could do baked egg, what her dose would be, etc. but leaving the decision to us.  DD is 12 and I am leaving the decision to her. 

While I don't think she'll do the baked egg dosing, having had the challenge and knowing she can tolerate some baked egg has allowed her to get the flu shot and for us not to have to worry about may contains.

So I'm going to be the outlier and say that you should listen to what your son tells you.

[CMdeux]

I don't think that Maeve and I actually disagree on this one.  We just have different kids.   Um-- and different docs, too.   

I'd TELL him that the doc wants you to all try this, and then I'd offer regular small doses in something that you know he likes.  Make it clear that sometimes things may have little amounts of egg and sometimes they won't.  That way he KNOWS that you're doing this, and he consents to it ahead of time.  This is very important-- I agree completely with Maeve about TRICKING kids into double blinding.

Make it clear that you will ALWAYS listen and won't force him to eat things he doesn't want to eat.   If he doesn't want to do it at all, though, be sure to mention that you will need to talk to the doctor about it because it's what your doctor has asked you to do (well, it sort of is-- it's actually far more conservative than what you've been told to do!).

Make something (cake mix made into minimuffins and frozen in batches?) with eggs and without them-- and pay close attention to whether or not he complains if he's eating eggy stuff and does NOT complain when he isn't.  Respect him if he refuses something, and make a note of it.  Start on the "no eggs" side of things-- if he develops psychosomatic symptoms, it'll be REALLY obvious, and you can talk it over with him, and reassure him that he wasn't eating anything with eggs.  (Does that part make sense?)  After a while, if it seems to be going smoothly, you can tell him that he's successfully eaten some egg in a few things, and ask if it seems okay to him to do that.

When I say "brownies" by the way, I definitely do NOT mean the standard way of making them, or the way that purchased brownies are (moist/chewy)-- mine are thinner, they are cooked longer (all the way through), and every one is identical because I make them as minimuffins.     I really recommend the mini-muffin route if you can.  That way all of the doses are more or less the same, and it's easy to make a few as egg-free "controls" before you put the eggs into the batter.  I like brownie mix better than cake mix because the leavening produced by making them with 1/2 portions of eggs doesn't make much difference to the texture or taste, unlike cake mixes.  Minimuffins are also less sensitive to a lack of egg giving them away as different because of increased fragility.

I do disagree a BIT with allowing a child to decide whether or not they want to continue avoidance, at least hard-core avoidance.  Maeve does NOT avoid may contains anymore for her DD, as she noted. 

My reasoning is about overall risk-benefit, though-- with a teen, they ARE going to take risks that they shouldn't, and I figure regular dosing with a low-enough-to-be-asymptomatic amount of an allergen is an insurance policy.  It's the best I can do in terms of decreasing risk during this next decade.  For another thing, asking OTHERS to make accommodations for you when you aren't doing what you can to mitigate things on your own end is just not okay with our family, and on some level, this crosses over into that territory.  So if dosing with egg means that your child's science class can safely use educational materials that they would otherwise have to avoid, then that DOES play a role in our decision-making.  Medical considerations being more or less equal, I mean.  (And they aren't always-- I'm DEFINITELY not advocating pushing through symptoms that seem dangerous or scary to either parents or children.  Absolutely NOT.)

I definitely understand respecting a child's decisions about his/her own body.  BUT... I also don't think that most children or adolescents are yet capable of understanding that larger picture and its ramifications down the road... this is one that has consequences in terms of ability to live away from home for college, how risky dating is, how much accommodation they'll need in entry-level jobs, etc.  So some pretty serious things are riding on how low that threshold is when they are 15-25yo.  Lower threshold = more danger, less freedom.  Similarly, I didn't "respect" my child's desire to remain unimmunized or go without dental care.   


I do rather wish that more allergists were sensitive to parents' and children's fears and concerns about such high dosages when starting out, though.  I think it would be MUCH easier if more parents had the option of doing what we did-- there is NO way that I could have gone through with dosing at 1/8th of an egg.  Pretty sure that I couldn't do it now.    That seems like an enormous amount to me, and my DD has been dosed with egg daily for years at this point.

Nope, we challenged with 1/40th of an egg over a period of five hours, and then started dosing with 1/90th.  Symptoms were mild enough that we never felt uneasy about doing it.  That just wouldn't have been true starting with the kinds of doses that most people challenge with.  I mean, I get that "a lot" is ideal tolerance-- but "a little teeny bit" seems a whole lot better than "nothing" which is the likely outcome if you make it all or nothing.  Our goal has never been to force NORMAL tolerance in the first place.  Just to increase the threshold dose enough to reduce risk significantly.

I can't understand why more allergists don't "get" that this is a completely WORTHY goal all by itself. 

Bummer, that.  Maybe they aren't living it?


Anyway.  Felt the need to qualify what I was saying there.  You know now that anaphylaxis is REALLY unlikely from very small doses.  That's a GREAT thing.  So exploit that and make sure that it stays that way.  That's all I was suggesting-- be cautious because it seems like he could still be allergic beyond some threshold dose, maybe even be MORE cautious than the doc thinks is warranted to give yourselves a buffer in case of other allergen overload, or illness.  Maeve and I both agree wholeheartedly there-- doc doesn't live with your child or know him like you do.   

[dlibby1angel]

I can't thank you enough for your input. First for taking the time and second for sharing some great insight that is immeasurably helpful. I have lots to digest and think about. I find that this sight gives me way more support, tools I can use and security than I get from the staff at the allergists.

Thank you!

[CMdeux]

 

Of course.  If only this stuff were ever easy.