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.