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.