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.

Thanksgiving, Allergy Style

The food restrictions we will accommodate on Thanksgiving include: vegan, peanut, tree nut, soy, and wheat allergies, OAS to melon and tomato, avoids most legumes (not peas anymore! This means vegan butter is in. Hoping to re-introduce at least one more legume before Thanksgiving). My goal is not to make every dish meet every need, but for everyone to be able to eat a complete meal within their restrictions.

These are not my recipes, but the collection of what I will use and how I will adapt them.

Pre-Thanksgiving (with guests):

Avocado Pasta (with cheese on the side)

Taco Soup: No recipe, vegetable stock (4 c), salsa (1 small container), whatever add ins everyone can have and lots on the side. Suggestions for add-ins/toppings: black beans, cheese, tortilla chips, meat, avocado, corn, kidney beans, sour cream (yuck, not here).

Thanksgiving Day:

Turkey
Mashed Potatoes (will not make vegan)
Sweet Potato Casserole (will be vegan)
Green Bean Casserole (Will not be wheat and maybe soy? safe. James doesn't eat it so I honestly don't really know the allergens present. Also not vegan - my sister also doesn't eat it)
Stuffing stuffed pumpkin
        Vegan Version: Wild Rice and Brussels Sprouts  (but I replaced the nuts with sunflower seeds)
         Non-Vegan version: Sourdough Artichoke (I will use GF Jules recipe to make baguettes)
Pumpkin Ravioli with a Sage Pesto
     Pasta Recipe
     Pumpkin Filling (no cheese)
     Pesto recipe (pumpkin seeds to replace the walnuts)
Caesar Salad and Autumn Salad (to be vegan)
Gravy (not vegan)
Cranberry Sauce

Seriously, I already feel sick looking at that collection. But, we still have ...

Dessert:

Apple Pie (vegan)
Whoopie Pies:
     Pumpkin and Chocolate but both using the pumpkin version's filling

My Action Plan:

Making Now:

The pumpkin ravioli and the wild rice stuffing are already in the freezer. I am going to pre-bake and freeze some baguettes. And, I will pre-make and freeze the cranberry sauce. I'm hoping to test out and maybe freeze the whoopie pies before Thanksgiving. Maybe some "Whoopie! The election is over" pies.

A Day or Two before Thanksgiving:

Bake the sweet potatoes and prep the casserole. Make the green bean casserole. Bake the mini pumpkins, make the artichoke stuffing and stuff the pumpkins. Make the apple pie.

Thanksgiving Morning:

Make the whoopie pies (if they aren't done). Prep the salads. Make the pesto.

Right before eating:

Bake all that needs to be baked, make the mashed potatoes and gravy. Boil the ravioli.

My husband dos the turkey (and the gravy and Caesar salad for that matter) so that doesn't make my plan. He usually cooks it outside (either smoked or fried) so it also doesn't interfere with oven space.

Have you started your Thanksgiving plans?

An Apple Every Two Years

is apparently not enough to keep the doctors away.

But, here is James, his first apple in two years.

His Apple History:

He reacted to a fruit salad (no apple) on June 30, 2014, the day before his 12th birthday. He had a two system reaction and so self administered his epi-pen. Later that summer, he got an itchy mouth when eating apple, although he had applesauce earlier that day with no reaction. This disparity led his allergist to test him for oral allergy syndrome (OAS). In one of those weird twists, he did not test positive for apple (on the fresh apple skin test, no IgE was taken). However, he tested positive for other fruits and vegetables, including the melon that we now know caused his reaction.

His allergist advised me that we could do an at home challenge for apple. However, at the time, he was having issues with more and more foods and we were in the process of simplifying his diet. He had no desire to try apple. Since he could eat most apple products, just not fresh apple, we left it alone.

Fast Forward:

He has improved immensely, both physically and emotionally. His IgE for grasses, which is what causes his OAS allergies, are now nearly negative (0.24 and 0.37, a 90% and 89% reduction). We are joining friends this weekend on a hike followed by apple picking; he wanted to be able to eat an apple.

So, we decided to go ahead with the challenge recommended two years ago.

Please note: I am not giving medical advice or recommending you follow these steps. I am describing the steps recommended only in this particular case by a board certified allergist. If you have questions specific to you or your child, please consult your own board certified allergist. Thank you.

What was supposed to happen:

1. Take a thin slice of apple, put it to his lips, wait 15 min.

2. Microwave a small slice of apple for 10 sec. Take a nibble. Wait 15 min.

3. Slowly finish the microwaved slice over 15 min. intervals.

4. Repeat with a fresh slice.

5. Continue eating more until an entire apple has been eaten.

What did happen:

1. Hand James the apple slice to put to his lips.

2. He eats before I can say anything.

3. "What, was I not supposed to eat it?"

The results:

The first day he tried apple (about half of the entire apple), he got some very minor digestive problems. This is not entirely out of the ordinary for him and he was likely nervous. So, we stopped for the day and said we would come back to it.

Two days later, he finished an entire apple with no symptoms. And just like that, one food is down.

Moving Forward:

I plan to celebrate this victory for a while before moving forward. Whether he never had OAS to apples or he if his environmental allergies improved enough that he can now tolerate it, it is a victory. He is confident enough that he will try foods he has been avoiding.

The next food I plan to re-introduce is green beans. His allergist also felt that his issue with legumes is more of an intolerance. Legumes are histamine liberators. Since he has had a histamine type reaction, it is possible that, while his body was recovering from a reaction in particular, he had trouble digesting them. I will not be home trialing any that he was specifically tested for (all were positive) without discussing with his allergist. But, I am ready to lift the "avoiding legumes" label if possible.

Update:

In perfect irony, James got sick, so we will not be going apple picking this weekend. Nothing to do with apples or allergies, just your standard virus. Considering that in two years, he has not had a fever ever, I am debunking the "apple a day keeps the doctor away" advice.

Stunning One Year Test Results

Yesterday, I read off James's test results, starting with the environmentals which were at the top, "Normal, normal, normal, slightly high, normal - wait a minute, these are all normal." I scrolled down to the food results, "Normal, normal normal."

Background

James, 13, starting seeing Dr. Li after multiple life threatening reactions, starting when he was 10 years old. Despite low IgEs, his allergies were progressing, including having OAS to multiple fruits and vegetables. He had had life long GI issues, chronic hives, and a cough after exercise that could lead to throwing up.

Test Results

Last years results are from July 2014, except for the tree nuts, which are from Sept. 2014.

Food

Wheat: 1.61 to 0.18 

Soy: 1.27 to 0.15

Lentil: 0.50 to <0.10

Peanut: 1.50 to 0.30

Walnut: 0.31 to <0.10

Hazelnut: 0.46 to <0.10

Pistachio: 0.97 to 0.24

Almond: 0.64 to <0.10

Environmentals

Bermuda Grass: 2.36 to 0.24

Rye Grass: 3.28 to 0.37

Mugwort: 1.23 to <0.10

Russian Thistle: 2.87 to 0.44

Elm: 2.27 to 0.18

Cockroach: 1.54 to 0.27

Juniper: 1.24 to 0.18

Cedar: 0.63 to <0.10

Total IgE: 65.7 to 30.1

Questions

Where do we go from here?

I'm not really sure. I am waiting for the official report to come in the mail and then I will send them to Dr. Li. My first priority is to be able to reduce James's Allegra, because he cannot have any food challenges if he still is taking it. In a twist (because nothing is every simple), he had minor hives twice last week. I believe he had a virus which caused them, but it's not perfectly clear that was the case. So, I was supposed to start reducing his Allegra and didn't. Hopefully, by the time of our next consult, he will still be hive free and we can begin that process.

What did you do?

I've blogged on here a few times about James's protocol: here, here, and here. This relates our experience at "TCM camp" this summer.

His protocol has changed more often than I have blogged. His current protocol is:

Mei Huang 5 Tea: 5 capsules 2 times a day

Mu Lian Tea: 5 pills 2 times a day

Good Mood Tea: 5 pills 2 times a day

Shi Zhen Tea 1A: 8 capsules 2 times a day

Shu Chuan Tea: 6 capsules 2 times a day

Cream 3VB: 2 times a day application, after bath and shower

Huang Lian: 2 tsp in bath once a day

Niu Bang Zi: 2 packets in bath once a day

Remember however that Dr. Li's protocols are personalized so these are only examples of James's protocols, not prescriptions that can be generalized.

Other than doing our best to eat healthy (and he eats plenty of junk - don't get the wrong idea), we don't do anything else: no probiotics, no cranberry juice, nothing supplementation wise. I am not saying there aren't benefits. This was just our choice.

My Own Thoughts

Having his blood work done was scary. There was a real chance that we wouldn't see progress in the first year and I know I would have been disheartened. The treatment is, as I have always tried to relay, intense. It has taken a lot of dedication and money.

I was hoping for improvement, but never expected such complete, positive results. I have some speculation as to why, but it is complete speculation.

1. His IgEs were low to being with, even though those low numbers had resulted in anaphylaxis. Basically, he didn't have as far to go.

2. Even though he was older, his immune system was obviously in flux, in the wrong way, when we began. Maybe it was "open" to being shifted in the other direction.

In Between Here and There

We are kind of in a weird place right now - in the best possible way. I am going to FABlogcon this weekend, and is James even really allergic anymore? I am not complaining. I plan to enjoy myself. But, like always, I would love to be at the end. I have already allowed myself daydreams of wheat bread and dim sum. I will keep posting at times and hopefully will be able to share successful food challenges in the not too distant future, but I hopefully soon, I will be wrapping things up here.

I would be happy to answer anyone's questions. 

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!

Where's the Easy Button?

Recently, I wrote how James had an accidental ingestion of soy. James's local allergist, Dr. L, had suggested both a soy and a wheat challenge last year, just prior to our first visit to Dr. Li. She requested we wait. At this seemingly successful tolerance, Dr. Li agreed that he could proceed with the soy challenge.

Not so fast, mom!

Dr. L, rightly, had lots of questions regarding James's ingestion. And two were particularly relevant to whether the challenge should go ahead or not in this case.

1. Any delayed reactions? Although I hadn't considered it at the time, James did complain the next day of shortness of breath, similar to (in his words) "when he has an OAS reaction." Since we were walking and in NYC, I chalked it up to humidity and pollen. 

Dr. L also did not seem concerned with this, but it did put the thought in the back of my mind.

2. What form of soy did he ingest? As it was soy flour, it turns out that this is not the most allergenic form of soy. Much like baked egg or milk, soy proteins change in a baked form from that of raw soy, as one would find in soy milk or tofu, which is used for a challenge.

So, while it was a good sign he had not reacted to the flour, it was not a clear ingestion either.

But wait! there's more (stumbling blocks)

Dr. L requested that James be weaned off his Allegra - and stay hive free - before undertaking any blood work even to see if he would be ready for a challenge (see information on OFC and CU here). Dr. Li, the day before, had specifically told me not to adjust James's Allegra schedule, until he had been hive free for six months. Then, she would work with us to wean him from his Allegra.

This is one of those cases - neither doctor is wrong, both have solid reasoning for their orders behind them, and if they were both in a room, I have no doubt they would discuss it and decide the best course of action. But they aren't. So, it's up to me to play a stressful game of telephone. And it's up to me to make the final call.

After talking it out with an amazing support system, I realized that our long term goal is health and healing. Ultimately, do we want to challenge foods, successfully? Of course, but we don't want to rush and possibly set back his current gains.

And so, we wait. Soy will still be there in 6 months, when hopefully, he is even healthier and hive free without antihistamines.

Food Fear Factor

"He's just anxious."

How many of us know someone who has the flu and afterwards, for a time, avoids the food they ate  before the flu started? Logically, they know that pasta dinner did not cause the flu, but physiologically, their stomach turns every time they look at a plate of pasta.

Now imagine that instead of throwing up, that plate of pasta made it difficult to breathe, caused you to be rushed to the emergency room, ended with shots, and tests, and medications, and more tests. Is it surprising that a child looks at everything on the table that night and says, "I don't want to eat that."?

Allergic Living recently published an article, "5 Reasons Patients Shun Critical Food Allergy Testing." Number three on the list was fear of the oral test.

Allergists have (among other things) the job of determining what is safe to eat.  Lives and, depending on the circumstances, nutrition, can be improved by broadening the diet. But, allergists can also undermine the confidence of patients by dismissing fear as "just anxiety."

Our Experience:

James does not test allergic to apple. It was one of the foods he was tested for OAS for. In fact, it was the food that caused a reaction that made the allergist think he had OAS, yet the testing was negative. Since the testing was negative and OAS generally results in minor reactions, the allergist recommended we test apple at home. We haven't. James has no interest in eating apple (he does eat cooked apple). I don't care. He eats plenty of fruits. If he never eats another apple, he is not missing out nutritionally.

Last October, right before our first appointment with Dr. Li, James's allergist recommended a food challenge for soy and wheat. Dr. Li suggested we wait. James implemented a two allergist agreement rule for any food challenge so we are waiting. We would have waited on Dr. Li's request anyway. The time of waiting has been good for James. It has given him time to think about adding in the food, about what a challenge would be like, pass or fail. There are times when anticipation increases anxiety, but this has been about working towards a goal, with each swallowed pills and slather of cream, he takes back some control.

So, if all the tests look good in October, then those are food challenges he will complete. Soy and wheat, unlike apple, would make a huge difference in all of our lives. And, I expect, when the time comes, we will all be a little anxious. But, having taken time and allowed confidence to re-grow, I don't think it will be unmanageable.

Advice to Parents

You know your child. You need to make a careful consideration of all the factors and come to a decision. It's not a time to allow outside pressure from anyone - allergist, family members, strangers writing blogs - influence you, however well meaning they are.

1. Take your time. 

2. Work with your allergist.

3. Don't be afraid of taking your child to a therapist if needed. According to this toolkit from the National Eating Disorders Association, presence of a food allergy is a risk factor for an eating disorder. Obviously, most people with food allergies do not develop an eating disorder, however, if you notice that your child has developed extreme fear or avoidance behavior, professional intervention may be needed.

4. Celebrate your successes. I find this can be a one step forward, two steps back process, so we celebrate every step forward.

Has your child had and food based fear? What have you found helps?

A happy(er) Anniversary

As of today, it has been one year since James had needed to use an epi-pen. For the record, it's the day before his birthday. I'm never sure how to talk about his life threatening reactions - all emotion with no language attached. While we were on our way to Urgent Care (note: if you have given an epi-pen, please go to the ER, not Urgent Care), James looked at me and said, "I want to go to Dr. Li. I don't ever want to go through this again."

Eight months earlier, after James's failed food challenge, I had begun researching and had brought up Dr. Li to both him and my husband. James was adamant that he was not interested. He would avoid his allergens and be fine. He didn't want to eat what he was allergic to. He didn't want anything to do with allergists. He wanted to be left alone. On the wise advice from others in the CHA FB group, I continued to mention case studies every so often to keep Dr. Li in his mind, but conversationally.

And although he wanted to be left alone, his condition changed after his food challenge. For the first year after diagnosis, I knew very little about food allergies and that was fine. I read labels without worrying about "crazy" things like were there nuts in the factory (I didn't even know that the label didn't have to reflect that), he ate at other people's houses, whatever was served, out at restaurants - we went about our lives minus his allergens and had only one incident, when he was served nut ice cream at an ice cream parlor (yes, we even ate at ice cream parlors). Luckily, he was sharing with my husband, who ate first and discovered the error.

After his food challenge, I first learned about the screwy labeling laws, when he got sick after having some sprinkles on a cupcake I made and he got sick. He had had his healthiest year his entire life after having his allergens removed (because he had had chronic diarrhea before that) and suddenly, sick again. I called about the sprinkles, and felt my world tilt, 'Could he really be sick from the amount of nut that could be in a bottle of sprinkles?'

Then, it was a tea bag that my husband brought home after a conference. In this case, there was no case of cross contact, but it was a rooibos tea, and, the operator told me in a concerned voice, she thought I ought to call my allergist, because it was a legume like peanuts. And soon, he was getting sick from more and more legumes, until we decided to avoid them altogether.

Which brings use to June 30, 2014, when for dinner, he had mango, melon, and rice (in my defense, I'm sure more was served. I have no idea what anymore). And he had diarrhea. Not unusual. But then, his throat started tightening, which was. He knew as soon as the diarrhea started it was not his usual, and had asked for Benadryl. When his throat started tightening, we went to the refrigerator, talked about the emergency action plan, and he administered the epi-pen to himself.

After a fair amount of testing, the reaction ended up being OAS to the melon. Illustrating the importance of following up with your allergist, Urgent Care called us and diagnosed him with a mango allergy because his RAST test was positive (it is also positive for melon but Urgent Care couldn't figure out how to code to test melon). OAS rarely causes a systemic reaction, however with two systems involved, his allergist agreed it was better to give the epi-pen than not.

Since seeing Dr. Li, James has not lost anymore foods. He has not had any severe reactions. I hope to celebrate this anniversary again next year.