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.

A New Epi-pen Case for Christmas

I know many people are looking for new epi-pen cases, particularly for teens, after the Auvi-Q recall. I bought James this one .

(That's the Super Smash Bros symbol for non-Nintendo fans out there. The shop has a lot of different images). 

I have no relationship (other than being a customer) with this shop. I like this case because it seems like it will be large enough to hold the epi-pens when they are in the Veta Case.

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!

Lessons from the Auvi-Q Recall

We do not use Auvi-Q, but my heart goes out to all those affected. Here's some things I've learned as this recall proceeds.

Have two types of epinephrine injectors at all times.

We have more than one set of epi-pens, but not more than one brand. This recall could have just as easily been for epi-pens. When the fervor has died down (so I am not getting an injector someone needs), I will be contacting James's allergist and asking for a prescription for Adrenaclick, which my insurance also covers. 

Replace your Auvi-Q as quickly as possible.

But, in the meantime, continue to carry your Auvi-Qs. They have reports of 26 device malfunctions and "In these reports, patients have described symptoms of the underlying hypersensitivity reaction." I looked up "hypersensitivity reaction" and it is an abnormal immune response. So, basically, the device did not inject enough epinephrine and the reaction continued. Until you can replace your Auvi-Q, I would carry whatever supply you have and, if necessary (as always), give multiple injections until the reaction stops.

Here is a link to the coupon co-pay for epi-pens: https://www.epipen.com/copay-offer/

Here is a link to the coupon for cash paying customers for Adrenaclick: https://webrebate.trialcard.com/coupon/EpinephrinePortal/

Remember that the app, GoodRx, will tell you where the prescription is the least expensive.

Get your Information Directly from the Source.

This is easier said than done. As I understand it, Sanofi has been very hard to get through to on the phone. And, whoever writes Sanofi U.S.s press releases needs to look for a different job. However, because the information was initially muddled, there were lots of stories making their way around social media. The only way to be confident in your information is to contact Sanofi. Here is a link to the Auvi-Q website https://www.auvi-q.com/ . There is a warning message on the home page that callers may get a message that the phone has been disconnected due to high volumes of calls.

What has Sanofi Said:

From the U.S. press release:

The recall involves all Auvi‑Q currently on the market and includes both the 0.15 mg and 0.3 mg strengths for hospitals, retailers and consumers. This includes lot number 2299596 through 3037230, which expire March 2016 through December 2016.

There is obvious confusion on whether all Auvi-Qs have been recalled or only the ones with the mentioned lot numbers.

From the Canadian press release (Allerject related): 

"Sanofi-aventis Canada Inc. (Sanofi Canada) is recalling all Allerject® (epinephrine injection, USP). The voluntary recall involves all Allerject currently on the market and includes both the 0.15 mg/ 0.15 mL and 0.3 mg/0.3 mL strengths for hospitals, retailers and consumers."

Note that there is no mention of lot numbers.

Tweeted from Sanofi:

1/2 IMPORTANT CLARIFICATION: @SanofiUS voluntary recall includes ALL Auvi-Q® (epinephrine injection, USP) devices currently in market.

— Sanofi US (@SanofiUS) October 28, 2015

And regarding the phones:

We are actively working to address phone line situation. You can continue to visit https://t.co/V6gVKtDo7B for info. Will update ASAP.

— Sanofi US (@SanofiUS) October 29, 2015

Stay Safe!

One Year Down

As of Sunday, James will have been seeing Dr. Li for a year. I thought I would want to celebrate, but to be honest, it seems routine. My guess would be that 1) he hasn't had any follow up blood work (he wants to wait until after Halloween for a draw) and 2) we are likely, at best, a third through treatment. It is hard to get excited at this point.

What I've Learned from One Year

Things will go wrong - Don't Panic

Missing Doses

There will be times when you miss doses, from forgetting, running out, or schedule issues. Missing a dose here or there is not worth stress. Do your best to be as consistent as possible, and accept that life happens and sometimes your schedule is thrown off.

Reactions

James has had reactions this year and hives and digestive problems however, he's had a lot fewer than ever. He has always had reactions and hives and digestive problems. Because the herbs are new to you, there will be a temptation to blame every problem on the herbs. It is possible that the herbs cause a problem. And, we have been handling hives, reactions, and digestive problems. You can continue to handle what comes using your own common sense. This doesn't mean to never consult your doctors. But, don't give up your own competency because you are doing something new.

Carry a Towel

When traveling, bring your own towels – the cream stains everything. Using your own towels will save you from embarrassment. If you are using Cream IIIb or IVB, green towels are best.

Please be thinking of us in the next couple weeks as we move forward with James's first year tests.

Allergy Friendly Copycat Candy Bars

Or, how I came to make two of my least favorite candies

When I was a child, I loved Butterfingers, one of my absolute favorites. I must have overindulged (a King sized bar was to blame I believe) and I had a nightmare. I ate a Butterfinger and ended up blowing an oil bubble as a result. It's pretty tame as nightmares go, but I was done with butterfingers. 

As an adult, I would have an occasional snack-sized bar, but I never regained my love. However, for the past couple years, I have been seeing easy homemade Butterfinger recipes and finally decided to give it a try.

Peanut Free Butterfingers

Free of: peanuts, tree nuts, wheat, fish, shellfish, milk       

Contains: Soy and Egg

*The soy means that James will not be able to eat them. It is in the form of soy protein in the candy corn. Luckily, I caught this before offering a taste.

Ingredients:

2 cups candy corn

2 cups Sunbutter

Chocolate coating (I used Vermont Nut Free dark chocolate melts)

Sprinkles (I used Target Dollar Spot sprinkles)

Directions

1. Melt the candy corn in the microwave in 30 second intervals until smooth.

2. Add the sunbutter and stir. This will not be easy and I recommend a mixer.

3. Press into an 8 x 8 or 9 x 9 pan which has parchment paper in it.

4. Put in the freezer for at least 30 min.

5. Cut the Butterfingers into pieces.

6. Using the directions here, melt your chocolate for dipping.

7. Cover with chocolate and quickly add the sprinkles on top.

Note:  Keep in mind that the smaller you cut the butterfingers, the more dipping you will have to do. This step may have gotten old for me.

And Mounds

I have never liked Mounds, not even as a child. They were only good for trading candy as far as I was concerned. However, I was not paying attention to our Amazon Subscribe and Save subscriptions and currently am buried in coconut. This was an attempt to use it up.

Free of: peanuts, tree nuts (except coconut), wheat fish, shellfish, and soy (yay!)

Contains: Egg and dairy (can be adapted to be dairy free)

Ingredients:

1 1/3 cup coconut flakes

2/3 c sugar

1/4 c cornstarch

1/2 c heavy cream

1/2 c coconut milk (in the carton not can)

2 egg yolks

2 T butter

Dipping chocolate and sprinkles

Note: To make dairy free, replace the 1/2 cup heavy cream and 1/2 c coconut milk with 1 cup full fat coconut milk from the can. Also replace the 2 T butter with coconut oil.

Directions:

1. Put the coconut milk and sugar in a saucepan.

2. heat over low heat until the sugar is dissolved.

3. Add the heavy cream, cornstarch, and butter and stir until combined.

4. Add about 1/3 c of the hot liquid to the egg yolks, stirring continuously. This will help to keep the egg yolks from scrambling.

4. While stirring continuously, add the egg yolk mixture to the pan.

5. Add the coconut flakes to the pan and stir until the mixture thickens.

6. Allow to cool in the refrigerator. Then place in the food processor and pulse until you have a smooth mixture. This step might not be necessary depending on the thickness of your coconut flakes.

7. Roll into balls (or flat ovals to copy Mounds more exactly).

8. Again, melt the dipping chocolate and use to cover each one. Add the sprinkles while the chocolate is still wet.

 

Making Progress

The Good News

James is still free of hives. If he continues hive-free this month, Dr. Li will have us begin to lessen his antihistamine dosage.

We have now "graduated" to every other month phone consults. My excitement is not at less contact with Dr. Li, but at the knowledge that she feels James has made enough progress to need less contact.

Dr. Li has switched from Mei Huang 4 to Mei Huang 5. James has used varying doses of Mei Huang 4 (and 3). At his highest dose, he was taking 20 pills two times a day. With Mei Huang 5, his ultimate dose will be only five pills two times a day. Currently, he is taking three because he felt nauseous with the higher dose. This has happened with his pills before and as he becomes accustomed, he is able to take more. So, while the dosage will increase slightly, few pills has meant a lower cost. We have gone from $1200 a month to $900 a month.

The Bad News

James had a minor reaction this week. I am not sure to what. He complained of throat itchiness and knew it was a reaction. It resolved with Benadryl.

All he had had was chicken and OJ. At first I thought perhaps his OAS now included oranges (although juices usually are pasteurized).  The pollen family his other OAS foods fall under is grass and orange is commonly listed in the cross reactivity lists. However, he has since had the same juice with no problems.

So, I turn to the chicken, which was a Costco rotisserie chicken. We picked it up on the way home from a museum and not from our normal Costco. It leads me to wonder if this Costco was not careful in preparing it, leading to cross contact with nuts from their bakery department. If this is the case, it was a very minor reaction and shows a lot of improvement from his previous cross contact reactions. And I will be more careful in the future questioning the stores before buying a rotisserie chicken.

Kindness of Strangers

We have been the recipients of many kind deeds from strangers this year - someone bought our lunch at In and Out, an online friend bought James an art class, people have willingly put away their peanut butter sandwiches when standing in line - and then, another person from a Facebook group gave us tickets to Disneyland's Halloween Party. I will admit to being completely overwhelmed by this generosity.

Our Night, Allergy Wise

Trick or Treating

As per an email from Disneyland Special Diets, I went to Town Hall to ask about trick or treating for those with allergies. James was not interested in trick or treating much - there was so much to do non-food related - but I still wanted to get the information so I could relay it. I was told that in previous years, information on the candy was kept at Town Hall, but now you should ask at each Trick or treat station. The cast members there should get you something from below their stand. 

We only went to one area with no line for trick or treating. The cast members there really knew nothing about allergies and dug through the candy to get what we told them was safe. There were four stops in this area and by the third, James was asking for carrot sticks and potato chips (the alternative snack) to avoid the hassle. It was not at all a big deal for him, but I can see that a younger kid might be more disappointed. It would be nice if they trained the people handing out candy as well as the chefs or had allergy friendly stations (maybe with non-food treats).

There were teal pumpkins at some of the stations, but these were only for decoration and had nothing to do with the Teal Pumpkin Project.

Dinner

James wanted pizza, so we headed to Pizza Port. The chef there informed us that they could not guarantee "that nut particles wouldn't end up in his pizza." She directed us to Tomorrowland Terrace, where they had no tree nuts or peanuts in the kitchen. The chef there was thorough, going over each ingredient several times. For instance, there was soy in the regular hamburger bun, but not the gluten-free one. The fries were cooked in soybean oil, but in their own fryer. We felt very comfortable with the care given to his order.

Non-Food Celebration

If there is a place where the food really doesn't matter, then this was it. We didn't stop except to eat dinner, and then we watched the Monsters U Dance Party. From the time we arrived until leaving, we rode every ride on our wishlist. The lines were virtually non-existent during the party. We watched the parade and fireworks.

Taking the focus off of food and onto fun is a good idea for everyone, not only those that are food allergic.

What plans do you have for Halloween that are not focused on food?

 

Teal Pumpkin Project

James's first reaction was the day before Halloween, three years ago. On Halloween night, with no diagnosis (although we were pretty sure it was the nuts he had been eating), I sent him trick or treating with his friends, no adults, his new epi-pens in his candy bag, with strict instructions, "Do not eat anything."

That rule holds today. We buy him our own candy and switch out when he gets home.

Even at 13, he still loves everything about Halloween: dressing up, being out on the streets at night with his friends, looking at the decorations.

The Teal Pumpkin Project

The Teal Pumpkin Project was started last year in an effort to raise awareness for food allergies. I don't do this for James, because he, honestly, is perfectly happy with Halloween. I do this for awareness and for other kids with food allergies or other medical conditions. At a minimum, if you print the sign and make non-food (not allergy safe, because the requirements for that vary widely) treats available, you will have participated. 

We are terrible candidates to participate. We live in an area where no one trick or treats (too rural). But, I still participate in the easiest possible way. I bring my teal pumpkin, my sign, and my non-food treats to our friend's house, where James will be trick or treating. 

For treats, I've gotten glow in the dark bracelets and I will get mini-comic books from the comic book store in October, when they are available.

I hope you will consider participating. It's not about not offering candy (my friend will take care of that on her end) but about offering options.

The TEAL PUMPKIN PROJECT and the Teal Pumpkin Image are trademarks of Food Allergy Research & Education (FARE).

Compliance

I would recommend taking 30 pills per day for 6 months as prescribed and see how that works before saying someone was slacking off #AAAAI15

— Nathan Hare M.D. (@AllergyTalk) February 23, 2015

One of my favorite tweets that came out of the American Academy of Allergy, Asthma, and Immunology conference this year. It arose as a reaction to an abstract  with a negative result. That is, the placebo group improved more than the treatment group. People often don't publish their results when they are negative, so this took a certain amount of courage (and is how science should proceed). The conclusion form the study is: "FAHF-2 is a safe herbal medication for food allergic individuals and shows favorable in vitro immunomodulatory effects; however, efficacy for improving tolerance to food allergens is not demonstrated at the dose and duration used." Emphasis is mine.

A theme in "curing" food allergies is that researchers are skilled at curing mice. It's the (murine to human) jump that can be a hurdle. But why?

Mice are controllable

Everyday, the mice in these studies all eat the same food. They don't go out with friends and get sick. They never miss a dose. Their stress level is controlled. As is their exposures allergens, both food and environmental. But, we are dosing a person with all the unpredictability that implies.

James's Record

As a person goes, James is compliant. He hardly ever misses a dose. He complains vehemently about the cream, but still applies it twice a day. But, other factors still come into play.

Stress

James is a perfectionist and puts himself under a vast amount of stress. In theory, I could lower his stress exposure, but the cost would be his maturing as a person.

Diet

Almost all of our meals are local and organic, but James loves snacks and pretty much snacks as a normal teenager (chips, candy, etc). 

Life

We have one. There are times when pills get forgotten, when he gets home late and puts on his cream without a shower, or has to be somewhere early and misses his bath.

Keeping up enthusiasm

Reviewing his progress

One of the benefits of going to NYC this summer was reviewing his improvements since he has started treatment. We were moving day to day and not taking time to reflect.

Not having hives anymore has also been a huge boost. He has a daily reminder, physically, that the treatment is working.

Sharing others progress

When people share their results in the CHA FB group, I share with him. I did this prior to him starting treatment as well. His own blood work won't be for another month, so hearing about others improving boosts his morale.

Not making a big deal

At fist, it seemed huge, insurmountable really as the number of pills he was taking kept going up. But now, it is routine. I tell him if he's had a change in protocol, but don't focus on it being hard or too much. It just is.

Whatever your treatment, have you had compliance issues? And how did (or do you) deal with them?

Judgement Free Zone

Likely most have seen this commercial.



So many decisions are the basis for division. In my own experience: adoption (foreign or domestic, private or state, interracial or not  - the list goes on), staying at home vs working, homeschooling vs public schooling (vs private vs charter), homeschooling methods - and most recently in my life, treating food allergies vs not and type of treatment.

I trust that each family is able to make the right decision for them on any of the above issues. My choice is not a reflection on yours.

If you would like to learn about various treatment options, judgement free, please join us at Food Allergy Treatment Talk on Facebook.

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.

How I Read a Scientific Paper

"A research problem is not solved by apparatus; it is solved in a man's head." Charles F. Kettering

I'm using a case report from Dr. Li as an example, because it's openly available on-line. The analysis is slightly different than it would be for other research papers, because it is a case report. Instead of asking a question and doing an experiment, they are retrospectively reporting on patients. Where possible, I've included what I would do differently with a different type of study.

Print it

You may not want to print it, but I do recommend having on a device you can take notes on. Highlight and look up all the words you don't know. This may be a lot. That's okay. You can't understand the paper without the work.

Identify the Authors

In this case, I was already familiar, so there was no need. But, if you are not, find out where the authors are from and, for that matter, what journal is publishing the paper. Not all sources are equally valid. Reading a scientific paper can be a commitment. Make sure you are reading something worth your time. 

Skip the Abstract

Often, all I have access to is the abstract. When possible, try to leave the abstract to the end so you don't become biased.

Introduction

This paper doesn't have one. If it did, read and decide, 'what is the question being asked.' Also, ask yourself, "does there seem to be an agenda here?'

My summary of the case report: 

Although the case report doesn't have an introduction, there is still an implied question: "Does TCM work for FSFA (frequent, severe food induced anaphylaxis) patients?" I do think there is something of an agenda. By design with case reports, supportive cases will be selected (this is the purpose of a case report).

Summarize briefly the background

My summary of the case report: 

Treatments are needed for those with FSFA (severe food-induced anaphylaxis) as avoidance is not working. TCM has been studied for treating food allergies, both in mice and in Phase I clinical trials. This study looks at the success of the treatment of three children with FSFA.

Summarize the Approach

My summary of the case report: 

The investigators will present data showing that TCM helped three FSFA patients.

Read the Methods 

Take your time with this, so you truly understand what the researchers are doing. I find a mind map helpful at this point.

My summary of the case report:

If you click on the mind map, it will be larger and easier to read.

Case Presentation (usually the results section)

Write a paragraph or two to explain the results. A lot of information is buried in the charts and graphs. It can be difficult to understand. Again, wrestle with it a bit because the charts and graphs are the visual summary of all the words.

My summary of the case report (you can see these are notes and largely informal):

Case 1:

13 yo milk allergic patient who had >100 reactions in the 2 years before starting TCM, 50 of which required epinephrine. She had frequent and severe reactions, from inhalation, contact, and trace ingestion, impacting her QOL. She used all 4 TCM remedies described, as well as acupuncture and Fructus Arctii Lappae. She has 16 reported allergic reactions in year 1, 6 requiring epinephrine. She had 4 reported reactions in year 2, 1 requiring epinephrine. In the first 6 months of her 3rd year, she has had no reactions. 

Case 2:

16 yo tree nut allergic patient, diagnosed at 13 yo, who had 30 severe reactions in the 2 years before starting TCM (requiring 34 epinephrine doses). She reacted from contact, inhalation, and trace ingestion. QOL so impacted she developed anxiety/depression. She followed the same protocol as patient 1 (not clear to me: also Fructus Arctii Lappae? acupuncture/acupressure?). She had only 2 mild allergic reactions in year one and passed a tree nut challenge at the end of the year. Treatment was discontinued. E-mail communication continued for 6 more months and patient 2 was able to continue eating tree nuts.

Case 3:

9 yo peanut/tree nut allergic patient, diagnosed at 7 yo, who developed more food allergies after diagnosis. He had approximately 400 reactions in the 2 years before starting TCM, 5 of which required epinephrine. He reacted from inhalation, contact, and trace ingestion. His QOL was impacted; he had chronic stomach pains, headaches, and a sleep disorder. He received the same herbs as Patients 1 & 2, but in decreased amounts due to his age. He also had monthly acupuncture. Patient 3 started in June 2013, so there is only 7 months of data. In the first 7 months, he had 13 allergic reactions, 1 of which required epinephrine. His stomach discomfort, headaches, and sleep disorder resolved.

A summary of the results section would look much different if this was not a case study. Here are some things to look for: how big is the study? do I understand the statistics, graphs, and lingo (do you know what a p value is, or the purpose of an error bar? There are certainly more examples. These are results I found simply by googling and you can understand the text more with a basic understanding of the numbers behind it). Do the researchers answer the question they set out to answer?

Discussion

What does the researcher think their paper shows? Do you agree? Do they find fault with their study? Do you? What is the next step they propose? Do you agree?

My summary of the case report:

What the researcher thinks: These three cases represent three cases of extremely severe food allergies. The food allergies were improved using TCM. The compliance, based on the self-reporting, of these three cases to the protocol was excellent in contrast to a previous, broader study.

Faults in they find: # of cases, relying on memory and knowledge of parents for reporting.

Next Step they propose: clinical studies, ramdomized trials, as well as testing the individual treatments to see if each of the 3 were required.

My thoughts: I would additionally like to see longer term studies. Having a reporting system would minimize reporting errors.

Return to the Abstract

Now, return to the abstract. Does is match with what is written in the paper?

My summary of the case report:

Yes, it matches

Rabbit Trails

Were there any papers cited in the article that you wanted to follow up with?

My summary of the case report:

I was particularly interested in this statement: "In, addition, acupuncture has been reported to reduce wheal size following allergen skin tests and to reduce basophil activation in individuals with atopic dermatitis [24,25]."

Secondly, I wanted to follow up on this: "A recent large cohort study reported that although 80.7% of food allergy reactions were triggered by ingestion, 12.9% were triggered by skin contact, and 1.2% by inhalation [6]."

And finally, I want to look into a couple papers on MCAD: "Both primary and idopathic MCAD usually have no objective evidence of food specific IgE allergy by ImmunoCAP® and percutaneous testing, which distinguishes them from IgE-mediated hypersensitivity reactions, a form of secondary MCAD [36, 37]."

So, this one paper leads to five more to look up.

One Month Post-Camp

What are the long term expected outcomes expected from TCM camp?

I had this excellent question posed to me shortly after I posted our experience, and the truth was, other than giving Dr. Li a better sense of James and his condition (in many ways, huge), I wasn't sure what, if any, the long term physical outcomes would be. We are only a month out, but I feel confident enough to give an update.

Hives

He simply hasn't had any. His last set of hives was at my mom's right before we went to see Dr. Li and, for a month, he has been hive free. This may seem like a small milestone but, considering he had his first hives at three years old, and now at 13, he has never been hive free for an entire month unless specifically medicated. After the first three years, most of his hive episodes were mild and self-resolving, but relentless. Once or twice a year, he would have head to toe hives that took a week to a month to resolve, with varying degrees of medications.

Our last day with Dr. Li, we told her, a bit shocked, that James hadn't had hives for the entire week. Dr. Li suggested that, based on other patients, this might be the starting point for being hive free for a month.

"Well," I said, "I'll take it a week at a time. Actually, I'll take it a day at a time."

That we are here, at the end of the month, with no hives, is astounding to me.

Sleep

Acupuncture made James tired and more calm, so sleep was not a problem in New York. Usually, he takes a melatonin at night to help him sleep. I had made it a goal this summer to eliminate any melatonin, slowly over the summer. We realized returning from New York, that he had not taken any melatonin while we were there. So, taking advantage of a two week break, an established sleep pattern, and the time change, we continued not giving it to him.

This has been a moderate success. He has had some days he has taken melatonin; he couldn't get to sleep as he's gotten used to the time difference. This has happened maybe once a week. He's had other days he's stayed up later than I would like, however, that was the case with melatonin. 

He has used melatonin for years, so being able to sleep regularly and without drama is huge progress.

(Not) Practically Perfect in Every Way

Any label making mistake could result in a life threatening reaction and I made not one, but two, last month alone. James is fine. My high rate of failure is unusual for me, but speaks to the heart of difficult for a lot of food allergic people.

I'm a human

Humans make mistakes. In a situation where a mistake can be life threatening, being imperfect leads to guilt. But, I'm still human.

Labeling sucks

1. According to FALCPA (Food Allergy Labeling and Consumer Protection Act), any food that contains the top eight allergens (tree nuts, peanuts, wheat, soy, fish, shellfish, milk, and eggs) must be clearly labeled as such, even in flavors, colors, spices. 

One of the labels I misread contained soy, completely my fault, and here's how: James can eat soy lecithin and soybean oil. You will find this in nearly every packaged food you buy. Because we were traveling, we bought him cookies we would not normally buy. I saw "contains soy" at the bottom, I scanned the label and saw the lecithin, and completely missed "soy flour" in the list. This was my fault completely for being complacent.

2. However, did you know that labels are not required to list if they item may have come into contact (ie "may contain") a top eight allergen? I became aware of this only a year after James had been diagnosed when he started having reactions to foods that were not labeled with cross contact warnings. At that point, I started contacting manufacturers to find out their labeling and cross contact policies.

3. Meat, poultry and eggs are covered by the USDA not FALCPA (not something I've had an issue with). There are no requirements covering alcohol (again, not something I've had a problem with). We have known a couple of people who had to avoid wheat in alcohol and it can be trickier than you might first think.

4. If you have an allergy outside of the top eight, you are on your own. This is a pdf of the labeling laws. If an ingredient is considered a spice or a flavor, it does not have to be listed. If it is present in incidental amount, it does not have to be listed. However, the FDA does not define what incidental amounts means.

You can follow (and support) efforts to get sesame listed on labels as another allergen here on Oh Ma Deehness! 

Complacency

Here we come to the final mistake I made. James has not had a major reaction for just over a year. He has barely had any minor reactions. And so, I have apparently relaxed my guard. Someone posted on Facebook that a vanilla ice cream was made separate from his allergens and, without doing my own research, I bought it. James complained he felt stuffy after eating it and he always felt stuffy after eating it. All I had to do was turn over the container to see that it had a may contain warning with all his allergens.

Teens and young adults are at the highest risk of fatal food induced anaphylaxis. I think part of this come from complacency. Teens and young adults are often diagnosed after a reaction in early childhood. Without a recent reaction, they may be less vigilant than someone recovering from a more recent reaction. I am grateful that I have been reminded about not being complacent with only a minor reaction.

   

Protocol Update

James's protocol has changed practical every month since October. Some months, the changes were minor, increasing dosages, adding one herb. Some months, much more significant. My most complete description of his protocol was in April with and update in June. At that point, I thought his protocol had stabilized somewhat because, although his protocol had changed a lot since his April update, there were no changes from May to June, only the second time since he had begun he had no changes at all. Little did I know that our visit in July would radically change his herbs once again.

To backtrack a little, he had a Prostaglandin D2 test, requested by Dr. Li, in June. The results were normal. Dr. Li was surprised. She was actually so certain that they would not be that when I said we had the test done, she completed my sentence by saying, "and the results were high." She then asked about a string of other tests, which we hadn't had done (she hadn't asked for them). And continued as if he had Mast Cell Activation Disorder. And, I think this is where we will stand. He will have no official diagnosis and if he stays reasonably stable (at this point, he is. He has improved considerably both under her care and since being diagnosed at all and cleaning his diet), I will not pursue further testing. If at some point his health slips, I know the direction to push in.

Current Protocol:

Put on two times a day, after bath and after shower. He is working up to complete coverage after bath, starting with just his legs. Right now, we use about six jars a month. The cream is IgE lowering, as can be seen in this abstract.          


Huang Lian and Niu Bang Zi

Both are bath herbs and he is working up to his full dose of two teaspoons of Huang Liang and two packets of Niu Bang Zi. He does this bath once a day.

He takes ten Mei Huang 4 twice a day. This is half the dose he was taking previously. Mei Huang 4 has some (not all) of the components of FAFH-2. 

He takes five Mu Lian tea two times a day.

He takes five Good Mood tea twice a day and this perhaps has been the most stable part of his protocol.

He takes six  Shi Zhen Tea 1A two times a day.

Finally, he takes six Shu Chuan Tea two times a day. This was the one I was happiest to add, as I know it is used, in part, to help with environmental allergies.

With additions and subtractions, our cost stayed steady this month at just over $1000.

TCM Camp

For a week, we have made a hotel room our home - cooking in the bathroom, bruising our shins on the platform beds, and asking housekeeping always for more coffee. A month ago, when I told Darren that Dr. Li had asked that we come to New York for a week so James could participate in her yearly TCM camp, he was bit skeptical: "A week of acupuncture and a consult, couldn't we do that here?" But, always supportive, we went, and we are all glad we did.

Here's a peek into our week:

Day 1:

We called ahead to check if Dr. Li is running on time. Our appointment was at 11:00 am, we were told to arrive at 11:30, but still waited some in the waiting room. The waiting room is not very big and your hotel, or in our case lobby, as we hadn't checked in yet, will be more comfortable.

This ended up being our consult day (when they made the appointments initially, they weren't sure what day would be the consult. I think Dr. Li wanted the consult prior to beginning treatment this week). Having his improvements summarized was gratifying - no severe reactions since beginning in October (three severe reactions in the two years prior), one minor reaction since beginning (20+ prior). Those are for food allergy reactions, not for environmental. He still has hives 5 out of 7 days (cause is suspected to be environmental by our local allergist), unknown frequency prior because they were (are really) so common I did not track them until Dr. Li asked me to. James still is not reporting them to me reliably so that number is based on his estimate.

I should have had James's IgEs taken. This is not his one year point (that will be October) so I didn't (I'm quite the rule follower). That does not always work in my advantage. It was fine, but she did want to know (me too!).

James was not able to tolerate acupressure. He's very ticklish. So, he again had two needles, one in each of his arms, but found the leg needle painful so she removed it. Dr. Li applied acupressure to his leg, observed it was "jiggly", and asked what trauma he had had in his life. For those who have experienced toddler adoption following abandonment and/or orphanage care, you will know there was trauma. I don't understand acupuncture at all, and so that she can know from his skin sensitivity that he had trauma, was a little spooky (what is the saying? We fear what we don't understand).

Day 2:

A much faster day, James had acupuncture while we spoke to Dr. Li. We were told to make no changes and emphasize the positive things, such as his ability to handle things, a healing of the heart as well as the body.

James was exhausted when we got back to the hotel. I was going stir crazy.

Day 3:

Four needles, two in each arm for 15 minutes, very efficient.

We went out afterwards, to MOMA and then to Nintendo World, probably James's favorite New York place. He was exhausted though, a frequent theme after acupuncture. To my delight, there is a Farmer's Market in front of Rockefeller Center (Wed-Fri). If, like us, you don't eat our much, and like us, your hotel only had a mini-fridge, by this point you might be getting dangerously low on fresh fruits and veggies. Honest joy for fresh produce for me and some raw cheese for James.

Temporary Iwata shrine at Nintendo World memorializing the recent passing of the President of Nintendo, Japan.

Day 4:

Dr. Li spent a long time doing acupressure before acupuncture. The difference in the amount of touch James was able to tolerate from Day 1 to today was amazing. We sit quietly, but at one point, I wanted to shout out, "I can't believe she's touching his feet!" He often says to me, "I've heard you can't tickle yourself, but I can." He's the most ticklish person I know.

All of these appointments have been tiring. James always asks to do something afterwards, but usually changes his mind. Yesterday was the only day we have followed through so far, and that was leaving the office directly. It resulted in him being overtired and crabby. He usually has a lot of energy. However, the acupuncture is supposed to be relaxing and our diet has not been as healthy as at home. It takes it's toll.

Day 5:

Another day of acupressure and acupuncture, although not quite as long as the day before. Today, Dr. Li had a young patient helper with her, who handed her the needles as she prepped James's skin. One of the real highlights of the trip has been meeting other families going through the process and even one who is in the biomarker study (so incredible to see that real and beginning!). I am not particularly gregarious in person (perhaps an understatement) but luckily I had a friend from the Midwest I met at the beginning the week who was outgoing enough for us both. And truly, I met many lovely families this week.

Dr. Li was particularly talkative today, which surprised us. Usually, when we come in, our directions are to be quiet, so that James can relax, so when she was asking us questions and conversing, we were a little hesitant at first to reply, kind of like talking out of turn in class.

After acupuncture, we met some friends for ice cream at A La Mode and we even got burgers from Bare Burger  for dinner. Two places out in one day might be a record for us. James declared the Bare Burger to be "the best he's ever had." He's had a fair number of burgers. And they were very careful, noting the allergies and reviewing their ingredients with Darren (who did the ordering and went to pick them up) despite how busy they were.

Day 6:

We were all relieved to make it to our last day. James was more antsy during acupuncture than he had been since the first day, so Dr. Li dropped his time down to 5 min., but within a minute of having the needles in, you could visibly see his body relax. I actually thought he was asleep on the table, he was lying so still.

We had a wrap-up chat. She wants his cream dosage increased ("we all have to do things we don't like") and we will be back in 6 months.

Why It Was Worth It:

1. He had no hives all week. Enough said.

2. Traveling is enormously stressful for him. Prior to this, the longest trip we've done is 10 days (before we were in NYC, we visited my mom for a week, so we've been gone 2 weeks now). He remembers loving trips when we return, but during the trip, he's generally miserable, physically and emotionally. But, this trip, he felt some 'I'm ready to go home,' as did I, but it wasn't the extreme feelings he usually experiences. No increase in tics, no emotional outbursts, no physical ramifications.

I would really like to continue acupuncture with him at home, but with all things for him, Dr. Li urged us to go slow. If he requests it, then it's okay. If not, leave it be for now.

Practical Considerations:

We stayed at a Hilton Garden Inn because of having points. In retrospect, not having a full sized refrigerator was a big deal and I would make that more of a priority in future trips. We are used to eating fresh and this limited our options to a lot of packaged foods. The Dumont is also very close to the office, does have full kitchens and larger suites - something to consider for the next time.

Minute Rice Microwaveable Cups - terrible, you are not that hungry.

Hormel pre-cooked bacon - doesn't require refrigeration, but you might as well eat salt and call it a day.

The best part of the Hilton Garden Inn Midtown/Park Ave is its location, literally around the block from Dr. Li's office. 

Bring two pairs of comfortable shoes. You will regret bringing only one.

My experience, (yours may vary) is to plan on this being a medical visit, not a tourist one. Anything you may get to do or see is bonus, but don't plan on a lot. James, as I mentioned, was often worn out, and not up for any sightseeing. In the evening, he would have more energy and want to just take walks, which was fine. 

Pursuit of Happiness

Thank you to my guest blogger today, Stacey Cohen Sturner. Stacey is a mom of two boys, one who has a peanut allergy and the other diagnosed with Crohn's disease. Not only does she have a real-life job working to expand opportunities for those who have developmental disabilities, but she is actively working to expand her children's health opportunities as well. If you or anyone you know is affected by Crohn's, you might be interested in attending this International Research Symposium on August 16th, which she is organizing. She also pens the blog, Curing Jackson. I was fortunate to meet this dynamo through the Facebook group she started related to food allergies, Food Allergy Treatment Talk. 

62 Days of Happiness

Last year, there was a popular social media challenge, aptly titled “100 Happy Days.” The goal was simple – be happy 100 days in a row. We all want to be happy, right? Science isn’t so sure. It turns out that happiness takes a certain degree of effort… more for some than others. 

As part of the TODAY Show’s ongoing TV series, Summer Secrets of Happiness, reporter Maria Shriver recently asked, “Is happiness born or bred?” According to the segment, “One of the common denominators among the people they found say they CHOOSE to be happy.” The mission of the non-profit organization, Project Happiness, is aligned with this sentiment as well. It’s dedicated to empowering people with the resources to create greater happiness within themselves and the world. Reason being, happiness isn’t intrinsic to one’s welfare. It often depends on how you handle your day-to-day and what it throws at you. Relinquishing the desire to control everything and everybody. Letting life happen, the good and the bad.

I excitedly participated in the “100 Happy Days” project a year ago, almost exactly. On day one, I captured my oldest child blowing bubbles with the clever title, “Ready, Set, Blow!” On day two, my youngest child readied himself for his first day of camp ever. By day 22, our family had really embraced the idea of daily happiness and enjoyed a fun afternoon at the beach. It was truly eye opening how the act of seeking happiness brought happiness. We were happy!

It changed by day 34, the Fourth of July, which was recorded for posterity’s sake on my Facebook timeline with a photo of my little guy wearing a star cover-up and pushing a toy lawnmower (“Independence”). This was when my big boy was starting to exhibit signs of a significant medical condition. My display of photos and outward happiness naturally began to wane and felt more forced. Between days 34 and 41, he was becoming increasingly gaunt, lethargic and sickly. 

I pressed on, both publicly and privately, to prove to myself that happiness conquers all. I. Am. Happy. But the reality was quite the opposite. It became a regular struggle to project a positive outlook. Inside, I was falling apart. Even though doctors hadn’t yet put their fingers on a cause for my son’s ongoing illness, mother’s intuition had kicked into high gear and I knew that something was wrong.

Day 62, spent in San Diego for our summer vacation, was depicted by a photo of my youngest curiously watching a snail slide past him on the sidewalk (“Snail’s Pace). That day, I ultimately decided that I couldn’t carry on with the ruse any longer. It felt disingenuous. These weren’t happy days after all. Truth be told, they were among the darkest days of my life. There wasn’t a social experiment to express those feelings. So, I retreated.

Eighteen days later, my son was officially diagnosed with Crohn’s disease at age 6-1/2. No photo, no post, no positivity. However, after a lot of soul searching and time to adjust to our “new normal,” happy days did manage to return again. Because I CHOOSE to be happy.

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?