And, I'm back (sort of)

Six months have passed and it isn't that I didn't have updates. I had so many updates and not enough time to process. I want to see this through to the end though, because it isn't much of a document of James's treatment journey if I quit when the getting is good.

Since I last posted:

• James passed all his food challenges (ie he is no longer allergic)
• He started high school
• I started teaching science to homeschool groups and families
• James was released from his allergist's care (just today)
• and he has started, very slowly, to wean off of his protocol.

Currently, he has two days a month when he has no protocol. If this goes well, we will work up to one week a month.

He has had a recurrence of his seasonal allergies. Like "normal" people, we are treating this with antihistamines. I'll be talking to Dr. Li this weekend to see if it's something to be concerned about (ie is this a sign his food allergies could also recur) or not.

I only forsee two more posts for this blog. One to update my cardamom ring recipe to add non-gluten free notes, because this is now where I keep the recipe. And one when treatment is complete.

Post Oral Food Challenge or Struggles with Soy

Disclaimer: This content is not intended as medical advice. .As always, contact your allergist or medical professional with any medical questions you may have and follow the medical advice they give. This is simply our experience.

It's been two months since James passed his soy challenge. The directions we were given were to make sure he consumed soy 2-4 times a month. According to this article, about one third of patients do not regularly consume their former allergens after passing an oral food challenge. This matters because to avoid a recurrent allergy, the research says one needs to regularly consume the former allergen.

The nurse asked why we even challenged soy, since it is an issue to keep it in the diet for most (soy lecithin, soy bean oil, soy sauce all do not count because they are low in protein. Many who are allergic can eat soybean oil and lecithin.). For James to know that he will not react if he has soy (and he has had an accidental soy ingestion before), it was worth it. My husband would say it was worth it to have regular soy sauce (and hopefully, eventually, eat in real Chinese restaurants). It is something I think one should keep in mind before challenging a food. Is it worth it?

This is not a question the allergist discussed with us. He knew we were motivated. But, the reintroduction has not gone smoothly. During the challenge, James complained of stomach upset, but everyone thought it was from the amount of liquids he was drinking to wash away the taste of the soy milk. However, he has continued to have stomach upset and/or pain on consuming soy. He did not want to give up, so we have kept trying.

Forms we tried:

Tofu: James liked it the first time until he asked me what it was. When he heard it was fermented soybean, he said he felt sick. The next time, he adamantly stated he didn't like it at all. Orange Glazed Tofu and Hawaiian Tofu BBQ Bowls

Edamame: I personally love edamame with a little bit of sea salt. James said if he had to, he could swallow them like pills. Taking all those pills per day is coming in handy.

Roasted edamame: I thought they tasted like dirt. James said he could eat them if he was really hungry.

Soy Milk: Tried at the food challenge, never again.

Edamame Guacamole: This was a maybe. I need to play with the recipe a little more. I really jsut made guacamole and added in edamame.

Chocolate and Roasted Edamame Toffee: Darren and I liked it. James did not.

Soy Protein Cookies: made with sunbutter, very dry, used soy protein powder

Hot Cocoa with a teaspoon of soy protein powder in it: James said this taste foul and I believe him. It smelled foul.

And, finally success with;

Nestle's Chocolate Chip Cookies

I read here that you can replace 1/3 of the flour in a recipe with protein powder. So, I did. Now, it's been a long time since I have made wheat chocolate chip cookies, but none of us could taste any soy. They were delicious. And, he didn't get any stomach upset.

The biggest problem is that he has to eat 6 1/2 cookies to get a similar amount to what he had at the challenge. Well, this isn't a problem for him! I am going to try recipes that are slightly more healthy - muffins, pancakes, etc - and hope that this is the solution we are looking for.

My thoughts:

Allergists are always eager to broaden the diet and for good reason. Although James is considered tolerant now, he is not as tolerant as I expected. It is not the same as one who is simply not allergic. If he doesn't consume his allergen, he has a higher risk or reacquiring it. While this is not OIT - no measured doses, no rest breaks, and he can eat as much as he wants - it is not complete freedom either. He is somewhere in between. For all is other allergens, it will be easy to include them in his diet once he passes the psychological hurdle of eating them; he loved nuts prior to his allergies.

It is a factor that should be considered prior to challenging: how will you keep the food in the diet and how hard are you willing to work for it?

King Arthur Bakealong Challenge

It turns out, learning to bake with wheat has a learning curve.

This was my first attempt at pizza dough. It got away from me somewhat.

Learning to bake without wheat was enormously frustrating. I'm now a bit intimidated about going back.

Serendipitously, I got an email from King Arthur about their monthly bakealong. I may have been getting these for ages (I have no idea how long they have been running this) but I used to ignore the King Arthur emails because of wheat. This caught my eye.

I would love to have friends join me in my quest to be a better baker. I will admit I love this is a monthly challenge. I barely successfully shower every day; I am bound to fail any daily challenge.

For June, King Arthur is making baguettes. Because I have complete understanding of those with food restrictions, if you are wheat free, here is an amazing  gluten free version from Gluten Free Jules. She even has directions at the bottom for a yeast free version. All of her recipes come with adaptions to be free of the top 8 allergens.

Let me know if you decide to bakealong!

Wheat Challenge Success!

Note: More than a week passed in between me starting this post and finishing. Any timing is a little out of date, but the basic information is accurate. I will add that it is pretty clear that James has no wheat intolerance, which was the concern going into the challenge - that he would pass and prove to be intolerant. Relief!

We are all, in the happiest possible way, completely overwhelmed by this one. My grocery bill this weekend will be extra large as we buy all the wheat products (that are safe :-) ).

The challenge went much the same way as the soy. It was a one on one challenge with the nurse instead of with the allergist. He was monitored (by machines) more closely. With the allergist, they did blood pressure and a pulse oximeter reading at the beginning. With the nurse, they add a spirometery test and re-tested his blood pressure at the middle and end.

He had eight doses of wheat crackers, a total of six crackers. This didn't seem like a lot to me. Never fear, he's had plenty of wheat already to test the results.

A couple of interesting tidbits I picked up this time while waiting:

Hazelnut

For the hazelnut challenge, which James is on the wait list for, they mix hazelnuts into Nutella, to increase the protein level.

Bee Venom

There is a bee venom shortage for immunotherapy. Thankfully, this doesn't affect us. My understanding is that bee venom immunotherapy is painful and this will extend the length of the treatment for those involved. Basically, it stinks. The nurse mentioned that it had to do with colony collapse, but the reports I have found said the manufacturer failed a FDA inspection.

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.

The long and winding road to a food challenge

I am aware it's been months since I have updated.

Sometimes, I nothing to say. Other days, I didn't know how to share, would I be able to convey the hope and the fear jumbled together. So, I said nothing. And focused on enjoying the moments.

Bringing you up to date:

We saw the allergist in December. Remember that James has always had low IgEs, despite his reactions. Nevertheless, for food, he only has three (barely) positive remaining: wheat 0.21, pistachio 0.18, and peanut 0.18. He also has four (barely) positive environmentals: Bermuda grass 0.28, Rye grass 0.28 (the grasses have always been his worst environmental), Russian thistle (aka tumbleweed) 0.24, and cockroach 0.14.

He has an oral food challenge scheduled for soy, then wheat two weeks later. He will have skin testing done at the soy challenge so we can inform ourselves before deciding on any other challenges.

We have successfully added legumes (except peanut and soy) to his diet.

I have permission to feed him raw tomato at home, but when he is not taking Allegra, so I plan to wait until after his soy challenge, when he will have stopped antihistamines.

He had three occasions of hives in six weeks. Dr Li adjusted his protocol and (knock on wood) he has not had any hives in four weeks.

In the near future:

As mentioned, we have a soy and wheat challenge scheduled. In order to proceed, he has to stop taking Allegra, have no hives, not be sick, and have a successful skin test. The skin test both needs to work (he has had one previously where nothing reacted, not even the histamine control, although he did complain about itchiness, so weird) and be negative.

All of them are somewhat of a concern, but right now I am feeling as confident as possible.

Additional wrinkles are that his first challenge will be a group challenge. I'm concerned if someone reacts, it will cause anxiety and make him feel he is reacting. A lesser concern is what to bring for snacks in a room where kids will be allergic, but I'm not sure to what. Feel free to comment with suggestions or hop on over to my FB page, where I'm also collecting ideas.