Planning a supervised food trial.

[mommydancer]

Hi all,

I haven't been here much, having figured out all of the foods my DS was allergic (egg, maybe sesame) to and intolerant (many) of when he was very young (with loads of help from MDC mommies) we had devised alternative recipes and have just been putting one foot in front of the other for almost four years.  Having had some ongoing intolerance symptoms since as early as 2 mos, my DS had an anaphylactic rxn to egg (and possible sesame) when he was 8mos. old.  It was the second time he had ever eaten egg, and I thought I was giving him only yolk, but he vomited violently until he tore a hole in his esophagus and was vomiting blood.  His face was blueish, he was limp in my arms, and despite our having sped him to a reputable hospital in a major city, we were ignored, then told it was a Mallory Weiss tear...but it wasn't until I researched it myself that I put it all together and knew he's been in anaphylaxis for that period of time. 

We did an ED, and it took a long time to isolate everything that caused problems.  But by age two, he (finally) started having brown, normal poops and there were no more rashes, eczema, etc.  We were on a very restricted diet for some time, have added in foods very slowly, and only recently (last 8 months or so) have stopped carefully limiting things like wheat and corn that had proved most bothersome.  He really does not seem to react to anything in his current diet ever, but there are still things he's never eaten (fish, nut, shellfish) and things he's not eaten for over three years (egg, sesame). 

So now that he is 4.5 years old, I am looking at putting him into school, and I figure prior to that, I really need to know whether I have to do the whole Epipen thing with the school, of if he has outgrown the egg/ sesame allergy and can eat those things now.  Not that I am interested in feeding a lot of these items, I only want to determine whether he can be safe without emergency interventions at school.

So last week I had blood testing done for IgE (RAST), as we had a positive RAST immediately following the rxn when he was a baby (I had to ask the ped, but they did it).  And this recent test came back negative for all foods that they had checked.  He does not have a measurable IgE for egg, or for sesame, or for anything else.  Thus, I believe the next reasonable thing to do is a food trial in the allergist's office.

I guess I wanted to bring it here now, to see what other moms have done in a supervised food trial.  It seems to me that it's nice to have the MD standing there for the first time, but wouldn't it be the SECOND time that would be really scary?  And I believe it should be at least 4 days between exposures, right? 

I did do some preliminary searches for older discussions on this topic here on MDC, and didn't find any that seem to be the same.  If I missed something I apologize.  Although I am writing primarily for help around the food trial, I am open to feedback about other parts of this if a momma has something to say.

Thanks

[scsigrl]

So what are you testing, egg?

First, after the first ana reaction, you should have had an epi pen all this time!  I am surprised your Dr. didn't get you one.

As for a food challenge, this would be the first or second time your child has had egg (assuming it's an egg trial).  It is true that you have to have a prior exposure to have a reaction but you have had that first exposure.  So to answer the question, no you don't need to do it twice.  

[mommydancer]

Thank you for the reply.  And i will clarify...yes, I'd be trialing egg and yes, we HAVE had an epi pen here the whole time.  I am just hoping not to have to bring it to school and make sure everyone is trained and so on.  Not to mention it would be easier with the whole "eating snack as a group" thing.

So you feel like that first ingestion sticks and I don't have to see it as a second "first time" after so many years?

[scsigrl]

Good!  I was a little worried about not having had an epi for this time!  (Not that there would have been anything you could do, but it may impact someone else who may ready this ;) )

MY understanding of immunology is that those exposures back in the day are plenty.  You can ask your Dr. for clarification to be sure.  If it weren't you wouldn't be able to do things like RAST and SPT because they would be - after being away form said for for a while.

HTH

[kjbrown92]

So he had a RAST recently but not a scratch test, correct? I thought it usually went RAST, scratch test, food trial, no? Since there was a former anaphylactic reaction, I would want a doctor there for me. Just to make sure. There are kids who outgrow allergies around ages 3, 4 and 5. So it is possible that he outgrew it. That would be fantastic!! But yes, I'd want that added safety of a doctor's office for that first trial.

[MrsJewelsRae]

I'd be looking for a negative scratch test first as well, then a food challenge under supervision if the scratch is negative too.  Good luck! 

[mommydancer]

You guys rock.  I love that you ask these things and know what should be put together. 

Sorry i didn't mention the scratch.  That happened about 6 mos ago, and they did 20.  The only official "positive" was the control, but there were slight reddened areas and swellings, so I felt conflicted about the allergist telling me everything had checked out. 

I have to admit I have dragged my feet to do more testing, because I still have so little faith in the western doctor's knowledge about ALL food reactions, but especially IGg, IgA. etc.  I have been concerned that their desire to prove there was no IgE reaction would lull me into false confidence and that I would start feeding my DS foods that were still causing inflammation and digestive damage, but not realize it.  So many of the "specialists" give such ignorant advice.  I had a gastroenterologist tell me to feed my DS everything but milk and soy, despite his having reacted to other identified foods...because (get this) it would be too difficult to figure out everything my child was intolerant to. 

So KJ, do you agree that his having eaten egg prior to one year of age is most likely enough to let this food trial be considered a "second" exposure or more? 

Also, he's NEVER had peanut, fish, a couple other ones...should i test those with supervision too? 

[Surfer Rosa]

Originally Posted by kjbrown92 

So he had a RAST recently but not a scratch test, correct? I thought it usually went RAST, scratch test, food trial, no? Since there was a former anaphylactic reaction, I would want a doctor there for me. Just to make sure. There are kids who outgrow allergies around ages 3, 4 and 5. So it is possible that he outgrew it. That would be fantastic!! But yes, I'd want that added safety of a doctor's office for that first trial.

Originally Posted by MrsJewelsRae 

I'd be looking for a negative scratch test first as well, then a food challenge under supervision if the scratch is negative too.  Good luck! 

This is what our ped. allergist has said about doing a food trial for DD. Next summer (she'll be six), he'll do a blood draw, test for the allergen, do a scratch test, and if it's within acceptable limits, do a food trial. She's only had one exposure to almonds. He said this would be enough. she's had yearly scratch tests, and the last one showed a much smaller reaction. She's also "grown out of" many of the food sensitivities she had (dairy, corn, egg, etc.) in the last year and her asthma is pretty much nil, so he thinks she might be one of the lucky ones who grows out of her allergies...hope you get some good/conclusive answers! They will probably tell you to keep carrying an epipen anyway, since sometimes reactions come back. Insert sigh here.

BTW when DD started school last year, I had the same concerns. "Luckily" so many kids have alleriges that most teachers (and even fellow students) are very knowledgeable about epipens. Her school (and most, I think) has a strict "no sharing food" policy, and dependeing on the student makeup, certain foods can't be brought in. I love that her teacher asked parents not to being in any food treats b/c the allergies are all over the place in E's class (various nuts, dairy, eggs, plus vegans and vegetarians). E carries an epipen in her backpack and there's also one ar school for her at all times.

Have you considered seeing a naturopath about food sensitivities? E went to one for a while, and it really helped (she also had brutal eczema)...

[kjbrown92]

Yes her prior exposure to eggs "counts". The body remembers. Did they do RAST/scratch for the things he hadn't had yet - peanuts, fish, etc? If he's never had them, then I'm not sure about the accuracy of those.

[mommydancer]

Yeah, they scratch tested all the top ones, so you are right, KJ, to question the accuracy of a scratch if he's never been exposed. 

IDK, I am trying to be grateful that he seems to be able to eat things like milk and corn that he had been reactive to.  I want to move forward and trial things, but a piece of me wants to make sure I don't try too much too fast, 'cause I don't know if I could go backward into what we'd been dealing with again. 

@fridgeart- I did consider a naturopath, I just had trouble finding one, and had worked with too many unhelpful "specialists".  I guess i just shut out the world and put my heart into solving it myself.

[scsigrl]

Originally Posted by mommydancer 

Yeah, they scratch tested all the top ones, so you are right, KJ, to question the accuracy of a scratch if he's never been exposed. 

Was there any exposure through breastmilk?  That will be enough in most cases from what I was told.

[mommydancer]

Yes with nuts, legumes.  No (almost certain) with fish.  It is hard to say with absolute certainty because at the very beginning, it wasn't on my radar.  Please, where is that information from?  I would LOVE to know that there was research that would support the idea that BM exposure would "count". 

[scsigrl]

http://jama.ama-assn.org/content/285/13/1746.full.pdf

There is one.  I can see what else I can find.  Lunch is calling the kids ;)