Soy Challenge Success!

As I have posted everywhere now (a wee bit excited and relieved), James passed his recent soy challenge. The challenge was a different from his previous one, not only in the fact that it didn't end with epinephrine, steroids, and fear.

Disclaimer: This is a description of one experience with a food challenge. It is not meant to be a guide on how food challenges should be run, medical advice, or anything besides a personal narrative.

Skin Test First

As I've mentioned previously, getting James to the point of no antihistamines for a skin test/food challenge has been difficult. So, we combined the skin test and food challenge into one day. I wanted to get all his skin testing done but the allergist (not James's usual allergist, more on that later) didn't want to stress him out too keep things fairly calm. So, we settled on three tests: soy, wheat, and peanut.

Have you ever seen a more perfect SPT?

I've forgotten which the nurse said was wheat vs soy, but no matter. The histamine reacted, the rest did not, and that was perfect.

A Group Challenge

I knew ahead of time that James would be having a group challenge but I wasn't entirely sure what that would entail, other than there would be other people. My primary concern was if people would be challenging other foods that he is allergic to. My secondary concern was snacks; they had told us to bring snacks but I didn't want to bring something that would be a problem, allergy-wise, for someone else.

What I didn't know until we got there was that James's usual allergist would not be preforming the challenge. I did a fair amount of acting like it was no big deal (and it turned out not to be because the allergist running the challenge was excellent), James likes and trusts his allergist, not allergist's in general. I was concerned he would balk, but he did great (the entire time).

I am not sure how many offices do group challenges. Our experience was in Kaiser San Diego. I asked about the rational (mostly to make conversation because we were there for almost four hours). There is a long wait list (no kidding!). When they have one on one challenges, the primary person preforming the challenge is a nurse (this was our previous experience) and you only see the allergist if there is a problem or at the end. Kaiser is actually shorter on nurses than allergist. The allergist is able to monitor up to four patients at a time whereas the nurse can only monitor one. So, they can move the list faster by having an allergist do four challenges at once. 

I actually liked it better, because the allergist was in the room the entire time, mostly working on paperwork, but there. The allergist did say that they only schedule group challenges for the patients they are most confident will pass.

General Procedures

I believe James drank a total of eight ounces of soy milk, divided into seven different doses. He started with a drop on the tongue and ended with 4 ounces in a cup. There were 15 minutes in between each dose and an hour waiting at the end. He was allowed to drink Gatorade in between doses. Although he complained of the taste, he drank the doses quickly. Except for complaining that the soy milk was disgusting enough to make him want to vomit (quickly adding it was an opinion not a physical reaction), the challenge literally went that smoothly with no hiccups or concerning signs at all. 

Epi-Pen Information

Since we were there, I decided to ask the allergist about Kaiser's Epi-Pen policies. This is from casual conversation and not a "written in stone" policy. According to the allergist, Kaiser Southern California will not be switching to the generic Epi-Pen this year but will be staying with Mylan brand (depending on your plan, of course, but the allergist's first choice will be to write an Epi-Pen prescription). Kaiser is "not really" a commercial plan and the allergists will not be filling out vouchers for Auvi-Q. I did not push this at all, because James is comfortable with the Epi-Pen, having used it before, and I am not looking to switch. If I were, I would definitely question this decision.

Next Steps

We were advised to have James keep soy in his diet 2-4 times a week. I can tell you from his complete disgust during the challenge he won't be consuming soy milk. I'm going to try both tofu and edamame as two sources high in protein, hopefully he will like one or both of them.

James has a wheat challenge in a couple weeks, same allergist, same group challenge. I am hoping now that we have done this once, know the procedure, and he's passed, it will be emotionally easier. It will certainly taste better and so be easier in that respect. I was so proud of James, because he was (outwardly) so calm and composed about the entire challenge. It was not easy for me to stay calm so I can only imagine for him.

This weekend, he will be trying fresh tomato at home (he has OAS to it, but never a severe reaction). I am supposed to contact his allergist when he, presumably, passes. He passed! At that time, I will ask to be put on the wait list for peanut, as well as ask about trying mango and watermelon at home.

The wait list is four to six months, and to be honest, I think we will be glad for the break and will try mango and watermelon at our leisure while waiting. Tree nuts would be the next step, but James is not ready to think about that at this point.

Results

But not what you think ...

October 23rd, James had a cyst removed from his forehead. I went in thinking it was no big deal, right up until the dermatologist said, "You'll have the biopsy results in two weeks," - not the words you want to hear.

I kept this mostly under my hat, but Wednesday, the dermatologist called with the results - benign. Everything else I'm sharing had paled in comparison to having that behind us.

Hives

They're back. The disappointment is huge. We are not talking about a serious case - a few on his lower leg that resolved on their own. But, the implications are vast. I never did get to try to reduce his Allegra - that would have been this Saturday. No food challenges will be possible until he has no hives without Allegra. I'm grateful we will be returning to see Dr. Li in December.

Blood test

It's drawn, this Monday. I am hoping to be able to report some good progress, whether or not we are able to challenge. Hopefully, next Monday we will have results. I had a hard time deciding what to test for this round. James has some allergens tested that are possibly false positives and I questioned whether or not to include them. 

As it turned out, I had an (insurance) limit of 25 allergens. It sounds like (is) a lot, but included environmental. He has nine environmentals tested, peanut, wheat, soy, lentils (that's 13). Running a tree nut panel (minus Brazil nut because that would be one too many) fills up the 25 limit. I excluded melon and mango (OAS related) and pea and white bean. James's allergist feels the legumes are likely false positives. I included lentil as a representative of the class as it is the one he has had GI problems with the longest (his whole life).

Hopefully, early next week I will be able to come back with positive results!

A Life Needlessly Lost

Today is the one year anniversary of the death of Sergio Lopez. He ordered veggie tacos, asked several times if they contained peanuts, but went into anaphylactic shock as the tacos had mole sauce, which does contain peanuts. Belinda Vaca, Sergio's mother, has become an advocate for those with food allergies.

I would ask you to join me today in either wearing teal (the color for supporting those with food allergies) or in burning a candle, both in memory of Sergio Lopez and in support of his mother, Belinda Vaca.

Thank you.