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?

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.

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.

Is this it?

We traveled to New York last month for James's 20 month follow up with Dr. Li. I really have no new blood work results to report, because, on paper, his testing is perfect. His improvements, even from last July, when he had already made a huge number of gains, are incredible. With that in mind, my first query to Dr. Li was:

"Is this it?"

James's quality of life has improved so significantly since beginning treatment, combined with the difficulty of tapering his Allegra down further, made me think that perhaps we had reached the end point of his treatment - and I was ok with that.

Dr. Li felt he still could go farther.

Her first recommendation was to have him have a food challenge, still on Allegra, and at most half the normal dose for a food challenge, eating that amount regularly. One of the benefits of seeing Dr. Li each day was that I could relay this to James's local allergist and have a response while still in daily contact with Dr. Li. Many times I have wished I could get them both in the same room to hash things out - this was the next best thing.

James's local allergist did not outright say no, but definitely expressed concerns. His first concern was that if James was still taking Allegra, minor symptoms might be suppressed and any reaction might be more serious before noticed. To combat this, the allergist said we would have to admit James to the hospital for the challenge and have an IV put in.

The allergist's second concern was with EoE. I know this is a controversial subject. I am reporting his concerns, not adding commentary because I think the research is still out. He felt that OIT had an increased risk of EoE and not doing a full challenge was too similar to OIT. Challenging when we weren't sure that James's immune system was fully healed could put him at a higher risk.

So, ultimately, the ball was in my court. James's allergist was willing, but ... Dr. Li recommended it.

I asked Dr. Li if it was even possible for James to develop EoE; his blood work shows 0% eosinophils in his blood. She said that yes, he could. Eosinophils can be in tissue and not blood.

I will be honest, EoE terrifies me. James has had digestive problems in the past (and to some extent, continuing) and I don't want to tip the scales. It seems the ultimate jumping out of the frying pan into
the fire.

And so, we decided to wait.

Inadvertently, we seem to have started James's Allegra taper again. Last Tues, the pills got stuck in his throat and he threw them up. This Tues, he forgot to take them. Unless I hear otherwise, I'm going to drop his Tuesday dose since he's gone two weeks without it with seemingly little effects. October will be a year since we began the taper. My goal now is to be done by next October!

Back to Camp

I had really hoped to skip camp this year. I had every reason to believe that not only would it not be necessary, but we could even stretch our visits out to a year, avoiding the expensive summer season.

Life laughs.

In addition to his atopies, James has Tourette Syndrome. It was, comparatively,  minor by the time we saw Dr. Li and had been for some months.

Since James has been reducing his medications (both Allegra and melatonin), his tics have increased exponentially. At 10 years old, his tics were bad enough that he asked to be medicated. He tried but the side effects to the medication were intolerable. His tics have increased to that point, perhaps beyond.

Dr. Li asked about increasing both Allegra and melatonin. I explained my hesitation at increasing either, but particularly Allegra. We will not e able to do any food challenges if we can't remove him from Allegra. She concurred and we met in the middle. His Allegra will remain the same, his melatonin will be increased. She is making a custom herbal formula for him. Hopefully, he will see some improvement. She asked him to try acupuncture locally, which I am in the process of arranging.

And, we are going back to camp.

Last year, I was in the position of advocated for camp and Darren and James were more reluctant. This year, they are the enthusiastic ones and I am ... worn. Darren and I spent a day re-arranging travel plans. We have a family trip scheduled, also Back East, for the week following camp. Planes needed to be changed, hotels booked, logistics figured out. But, it is done.

What I'm doing differently this year:

1. A full kitchen, not a microwave, mini-fridge, cook in the bathroom combo. I couldn't face that again this year.

2. Gulp. A red eye flight. We couldn't find anything else (using airline points). Anyone want to wager that this will be my 'never again' point next year?

3. Not make any plans of tourist things to do. What we see is fine, but, I found last year, James needs rest after acupuncture. Often, by the time he had the energy to go out and see, it was night. Not that there isn't a lot to see at night!

Summary of Our In Person Appointment with Dr. Li

We returned to New York to see Dr. Li last week. Dr. Li and I had already discussed James's one year blood results during a phone consult. There is nothing like a face-to-face appointment though, so I was truly looking forward to seeing her.

Honestly, I had one hope of the appointment (being able to re-introduce legumes, which James's allergist felt were an intolerance, not an allergy) and James had another (reducing the dreaded cream). Dr. Li wisely followed James's lead and I will have to wait.

She started by checking his skin ("beautiful") and acupuncture. Upon returning, she took history and we discussed food challenges.

• She clarified that, although Kaiser records >0.35 as an allergy, she considers anything over 0.01 possibly still allergic. I am sure James's history of having severe reactions with low IgEs plays into this (in other words, this is specific to him and not a general statement of Dr. Li's thoughts).
• James asked to reduce to doing cream one time a day. She said this was fine, but that he should step down (one day a week), particularly as he is still stepping down from his Allegra.
• She asked James what food he would like to challenge first. He replied that he wanted wheat back, but that he thought he could pass soy. She said that when we were ready (off of Allegra, SPT from allergist), he could start with wheat.
• However, for each challenge he does, she wants to challenge only 1/5th of the amount that is usually used in the challenge. Then, she wants us to control how much returns into his diet, small amounts one day a week at first, stepping up a day a week, and then portion size. Her concern is he will feel sick from adding foods he has been avoiding into his diet and wants him to go slowly. He does tend towards GI problems. I will be discussing the smaller challenge with James's allergist.
• Dr. Li was most excited that James (on his own) had turned up the water heater and had not had hives. He used to have heat intolerance. In her words, "That shows true tolerance."

The biggest benefit of being in person was that Dr. Li was able to talk to James and let him guide the appointment. I always ask before any phone consult if he has anything he would like to add or ask, but the answer is always no. Being in person, her questions could be addressed directly to him. Dr. Li gives him flexibility, respect, and some control and he is more motivated to do what is required.

Baby Steps

"You have done wonderful work."

Typical of Dr. Li, ever modest, this was her response to James's blood test results.

As I suspected, not much has changed in every day life. James needs to be off of his Allegra to move forward, so that is the next step. Since he has a history of chronic hives and has been using a daily antihistamine for a decade, this will be a long process.

Dr. Li is also going to send herbs to help with viruses, hopefully eliminating any viral hives. When he is no longer taking Allegra, he will be able to start with his local allergist, to do skin testing, and hopefully food challenges.

While this definitely is not an exciting update, it is the behind the scenes of what happens next (for us). While we would love blood testing to be accurate enough to get results and start eating the food, that is not reality. It tests my patience, but not my thankfulness.

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.

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.

Food Allergy Testing: Down the Rabbit Hole

“Have you guessed the riddle yet?” the Hatter said, turning to Alice again.“No, I give it up,” Alice replied: “What’s the answer?”“I haven’t the slightest idea,” said the Hatter” 

Usually, when we go to the doctor, have a blood test, roughly a week later, we receive the results and there's a diagnosis: your cholesterol is high, you have anemia, etc. These are screening tests.

Food allergy tests, both skin and blood, are not screening tests. A positive test does not mean you are allergic. In fact, both skin and blood tests are wrong about 40-60% of the time (called a false positive). False negatives are less likely, although possible, in both tests.

The only time food allergy tests should be performed is when you are having a reaction to a food. And the only way they can be interpreted properly is in the context of your history.

“That's the reason they're called lessons," the Gryphon remarked: "because they lessen from day to day.” 

So, now you have your results, and you have been given numbers, classes, wheal sizes, and the larger then numbers the more severe the allergy, right? Of course not. But, here is where the blood test numbers can come in useful (and you can eliminate some of the false positive concerns), the larger the numbers, the more likely the test is accurate. That is, the more likely you are to truly react. The likelihood that one will react is called the positive predictive value. This is from medscape here:

• Egg: In children > 2 years of age, IgE level 7 kU/L (98% PPV); in infants ≤ 2 years, IgE level 2 kU/L (95% PPV)
• Milk: IgE level 15 kU/L (95% PPV)
• Peanut:IgE level 14 kU/L (95% PPV)
• Fish: IgE level 20 kU/L (95% PPV)
• Tree nuts: IgE level 15 kU/L (95% PPV)
• Soy: IgE level 30 kU/L (73% PPV)
• Wheat: IgE level 26 kU/L (74% PPV)

As you may remember, James failed his oral food challenge to hazelnuts and his Ige is 0.46 (depending on what standard you follow, positive is either >0.35 or >0.01. Our lab says above 0.35, so he is barely positive).


And, here is the lesson, barely positive can mean an anaphylactic reaction. Negative can even result in an anaphylactic reaction (rarely). The test is meant to guide the allergist with your history in diagnosis. It is not diagnostic in an of itself.

“Why, sometimes I've believed as many as six impossible things before breakfast.” 

What about IgG testing? IgG has no place in testing for allergies or intolerances. Some researchers and OIT doctors have actually begun measuring it (research wise) as a good measure, as in, as IgG rises,  your ability to tolerate the food. IgG shows that you have been exposed to the food. There have been studies showing that children who out grown their milk allergies have higher IgG milk levels and that IgG levels rise throughout OIT. 

“Would you tell me, please, which way I ought to go from here?""That depends a good deal on where you want to get to."

We seem to be on the cusp of the future as far as testing goes.

At Stanford, there has been news of two new tests in development. The link can explain it better than I can, but one uses a heel prick to test for 90 allergens using white blood cells. The other looks at DNA. Used together, they can also be used to determine the severity of an allergy. Now, of course, families are told to treat every allergy as potentially life threatening.

At UConn, they are also developing a food allergy test, specifically for peanut, interestingly in addition to being a food allergy test, the researchers are hoping to use the test to get a better look into the biology of a reaction.

Of course, my personal favorite, Dr. Li is developing the Basophil Activation Test (BAT). Because James's IgEs are all low, an alternate test for him, for people like him, is necessary. The idea of him undergoing another food challenge relying on a test that is, quite frankly, inadequate, is terrifying.

That said, parents are fundraising for a clinical study to help move forward Dr. Li's work on the BAT. The total is not completely updated on the page; we need slightly less than $5,000 more. If you are able to contribute anything, it would be greatly appreciated. We are trying to get the last bit raised by the end of this month.

Great news from this afternoon (April 27th) that the study has been fully funded! Thank you to everyone who has contributed and everyone who supports those with food allergies in any way.

Choosing an Allergist

Our Experiences with Allergist

Allergist (?):

I almost forgot about him, probably not the highest recommendation. We saw him when James, at 3, was diagnosed with chronic urticaria. After he diagnosed him and gave us his treatment protocol, James was followed by his pediatrician and we never saw that allergist again.

Allergist N.:

This is the allergist I think of as James's first allergist, the one that left us both scarred.

We have Kaiser, an HMO, and after James's first reaction, subsequent hospital visit and blood tests, he was referred to an allergist. After his first appointment, where the control did not react on his skin test (despite having no antihistamines for 4 days, no matter the significant look exchanged between the allergist and nurse), it was determined that James likely had a reaction to tree nuts, seeing as how he was eating hazelnuts when he reacted. A hazelnut blood test was never ordered. 

James was prescribed an EpiPen® (but we were not given directions on how or when to use it) and we were told to avoid tree nuts and wheat. Not long after, because of reflux problems, soy and peanuts were added to the list to avoid.

We were asked to return in a year for a food challenge.

And we did. Because I didn't know any better. No more testing was done before the challenge (although when his hazelnut iGe was eventually run it was only 0.46, so he does appear a good candidate for a challenge on paper).

He failed his challenge on the first dose and needed an injection of epinephrine and one of steroids. And Allergist N panicked. More than anything, this scared James. If the doctor was panicking, then the situation must be dire.

I now know, a lot was wrong with how this was handled: an oral food challenge (OFC) of a food with a known serious reaction, an OFC without test results for the food, panicking (well I knew that to start). So, I started researching more about food allergies and knew we would not return to this allergist.

Allergist S.:  

We saw after James's OAS reaction to melon. At the time, the urgent care had drawn blood, thought it most likely to be mango, and under the "you really can't make this stuff up file," couldn't figure out how to code testing for any of the other fruits he had eaten anyway.

I had done much more research by the point and realized that a positive blood test does not necessarily mean an allergy. I wanted to have an allergist review the situation and do the diagnosis. Only, according to Allergist S, everything except the tree nut allergy was in James's mind. Allergist N had failed to record any of the symptoms he had had during the failed food challenge, so they hadn't happened. I'm not sure why he thought Allergist N epi'ed James.

And yes, James was anxious going to see the allergist. The last time had not ended so well.

Allergist S said we should return in 5 years for re-evaluation. 

Allergist L:

Darren and I were trying to decide whether to change insurance as open enrollment was approaching. He has his own health issues and had been satisfied with the care he has been getting from Kaiser. I was completely dissatisfied with the allergy department. I did find an allergist within the Kaiser system that looked promising about an hour away. To see if we could all be happy with Kaiser, I wrote James's pediatrician outlining the problems I had had so far and that if we were unable to find a qualified allergist, we would be switching insurance.

And finally, we hit the jackpot. James is definitely complicated as an allergic patient goes: low iGes, high reactivity, OAS, possibly Celiac and not a wheat allergy, history of hives. There's a lot to tease out. But Allergist L did (and continues to do) the work to determine out what is relevant and important for diagnosis and treatment.

Personal Referral

This actually didn't work for me. Maybe if it was a true personal referral, from someone I knew and knew what they expected from a doctor. This was a referral from Facebook and landed us with Allergist S. Unlike Allergist N, I am sure he is competent. He was, however, a bad fit for our family.

Do You Feel Lucky?

So, how do you find a good allergist? Is it all luck?

With Allergist L, there was a lot of luck involved. After James failed his food challenge, I knew we would not being seeing Allergist N again. I started doing a lot of research about food allergies in general. One of the places that offers amazing resources is Kids with Food Allergies, including webinars and articles. One of the articles I read was written by Allergist L. I noted in the authors biography that he was a Kaiser allergist, but he seemed to be a little far from where we lived. Nevertheless, I bookmarked the article.

After the failed visit to Allergist S, I did returned to the article and thought again about Allergist L. Kaiser gives only the most basic of information on their website about each Dr. and some of that is useful. What I was most interested in was education and population served (I was interested in a Board Certified Pediatric Allergist).

From there, I did a Google search. I was looking to see if he had done any research and what the research was on. If I had done this with Allergist S, I would have found that he had one research paper on asthma. Allergist N had one paper on pneumonia. Allergist L has done research (and continues to do so) on food allergies. As James has no lung involvement, he needs an allergist that specializes in food allergies.

In general, I don't think it's necessary to eliminate doctors solely on their lack of research, because I'm sure many fine doctors focus on their treatment of patients alone. However, because of the system Kaiser has set up, making it difficult to get information on their doctors, and because, in general, a doctor conducting research is also going to be following the current research, I found this effective.

Finally, I was willing to drive. I live in an area surrounded by better places. If I were a highly qualified doctor, I would rather be by the beach than the desert  - and most of them have that choice. 

I went into our first appointment like an interview, as opposed to Allergist N, where I went in as a patient. And I think this is important. Realize that you can find an allergist for your family; it may take a little legwork, and a little luck.