An Apple Every Two Years

is apparently not enough to keep the doctors away.

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

His Apple History:

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

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

Fast Forward:

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

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

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

What was supposed to happen:

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

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

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

4. Repeat with a fresh slice.

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

What did happen:

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

2. He eats before I can say anything.

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

The results:

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

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

Moving Forward:

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

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

Update:

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

Stunning One Year Test Results

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

Background

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

Test Results

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

Food

Wheat: 1.61 to 0.18 

Soy: 1.27 to 0.15

Lentil: 0.50 to <0.10

Peanut: 1.50 to 0.30

Walnut: 0.31 to <0.10

Hazelnut: 0.46 to <0.10

Pistachio: 0.97 to 0.24

Almond: 0.64 to <0.10

Environmentals

Bermuda Grass: 2.36 to 0.24

Rye Grass: 3.28 to 0.37

Mugwort: 1.23 to <0.10

Russian Thistle: 2.87 to 0.44

Elm: 2.27 to 0.18

Cockroach: 1.54 to 0.27

Juniper: 1.24 to 0.18

Cedar: 0.63 to <0.10

Total IgE: 65.7 to 30.1

Questions

Where do we go from here?

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

What did you do?

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

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

Mei Huang 5 Tea: 5 capsules 2 times a day

Mu Lian Tea: 5 pills 2 times a day

Good Mood Tea: 5 pills 2 times a day

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

Shu Chuan Tea: 6 capsules 2 times a day

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

Huang Lian: 2 tsp in bath once a day

Niu Bang Zi: 2 packets in bath once a day

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

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

My Own Thoughts

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

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

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

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

In Between Here and There

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

I would be happy to answer anyone's questions. 

Results

But not what you think ...

October 23rd, James had a cyst removed from his forehead. I went in thinking it was no big deal, right up until the dermatologist said, "You'll have the biopsy results in two weeks," - not the words you want to hear.

I kept this mostly under my hat, but Wednesday, the dermatologist called with the results - benign. Everything else I'm sharing had paled in comparison to having that behind us.

Hives

They're back. The disappointment is huge. We are not talking about a serious case - a few on his lower leg that resolved on their own. But, the implications are vast. I never did get to try to reduce his Allegra - that would have been this Saturday. No food challenges will be possible until he has no hives without Allegra. I'm grateful we will be returning to see Dr. Li in December.

Blood test

It's drawn, this Monday. I am hoping to be able to report some good progress, whether or not we are able to challenge. Hopefully, next Monday we will have results. I had a hard time deciding what to test for this round. James has some allergens tested that are possibly false positives and I questioned whether or not to include them. 

As it turned out, I had an (insurance) limit of 25 allergens. It sounds like (is) a lot, but included environmental. He has nine environmentals tested, peanut, wheat, soy, lentils (that's 13). Running a tree nut panel (minus Brazil nut because that would be one too many) fills up the 25 limit. I excluded melon and mango (OAS related) and pea and white bean. James's allergist feels the legumes are likely false positives. I included lentil as a representative of the class as it is the one he has had GI problems with the longest (his whole life).

Hopefully, early next week I will be able to come back with positive results!

Fear and Hope, James's Perspective

James is participating in a Read-A-Thon on Tuesday, started by a remarkable young woman who is in a peanut clinical trial. Technically, the Read-a-Thon is Monday, but we will be enjoying the company of our family. On Tuesday, we will be enjoying the quiet of our car on the way home, perfect for long stretches of reading.

I asked him to write the description on his page, answering the question as to why raising money for food allergy research is important.

Having anaphylaxis used to truly scare me, every day, all the time. I wondered why people couldn’t just create nutritional pills to give you your food. That would have already made me feel ten times safer than the alternative of eating regular food. But now I’m getting allergy treatment with Dr Li and I’m very thankful for it because worrying isn’t as much a big part of my life as it used to be. I can feel safe about about eating things I’m familiar with because I know the treatment will at least keep me from getting any serious reactions.

I didn't edit anything he wrote, so I want to be clear, the number of food allergies hasn't decreased. He is eating a wider diet because he isn't scared.

To be scared of food. To have a child scared of food. It's a heavy burden.

Obviously, James is in treatment with the goal of more than freedom from fear. But, when we started treatment, we told him, "This may not be a cure. At the end, you may not be be able to eat your allergens. If we do this, what is the least that you will be satisfied with?"

"I don't want to be afraid anymore."

This is why more research is needed. People should not be afraid to eat.

"That's No Ordinary Rabbit"

We are in Food Allergy Awareness Week. Technically, rabbits are food. However, I will not be speaking of them in that context.

Two weeks ago, a dear friend's husband had a life-threatening reaction to their pet rabbit. He had been having asthma problems which were related to the rabbit for some time. The rabbit had been relegated to the garage. Even so, this day, when he went into the garage, he had trouble breathing, used his asthma medication, found no relief, and eventually, was taken to the hospital. He was given epinephrine, Benadryl, and steroids. He left with a prescription for Epi-pens, steroids, and a refill for his inhaler, but, as is so familiar, very little instructions or directions on what to do next.

Here is my advice, having been down a similar path, somewhat generalized, for those who may walk this path again:

Avoid your Allergen

This is an emotional blow, different when you are talking about a beloved pet versus a food, but either way, those words, which seem simple on the face, are actually quite difficult. Quoting Dr. Dave Stukus, "Families told to get rid of their pets by their allergists find themselves a new allergist, not a new pet." And I know when James got his test results back, my second thought (after looking at the food) was to be relieved that he was not allergic to the dogs and cats.

Epi-Pens: Carry Them, Keep them Together

Obviously, a rabbit being easier to avoid than most allergens, it may seem like you don't need them with you always. There's a few reasons I would argue that with even a seemingly easy to avoid allergy, you always need your epi-pens with you:

1. It can take months for your environment to be fully clean of the proteins from pet, even with thorough cleaning. Regarding mammalian proteins in an article about anaphylaxis from a horse allergy: "It is necessary to remember that the allergen levels decrease slowly over several months after pet removal." Gao et al, Wao Journal, Aug. 2009
2. Other people own pets and allergic proteins are clingy. I, myself, have experienced going to the Urgent Care (not allergy related) only to be treated from the door way because the doctor's pet allergies were too severe to treat me. Note to self: Use tape roller before heading to Urgent Care?
3. There is always the possibility that instead of the rabbit, the reaction was caused by the hay the rabbit was being fed. Grass (hay being a form of grass) is actually a more common allergy than rabbit. And a more common trigger.

Here is a link for a co-pay coupon for the Epi-pen.

See a Board-Certified Allergist

An allergist will be able to sort through the history and do the testing to determine what the allergy actually is. He will also be able to give an emergency action plan, clear for the entire family.

Rodent Allergies

This is information I found specific to rodent allergies.

What information would you share for someone newly diagnosed?

 

The Roller Coaster Ride

The Ups

Is he ok?

Yeah, he coughs like that when he runs or exercises. I told his pediatrician. She says it's normal.

That is not normal. Tell her again.

A conversation I had with a friend of mine, a nurse, last August. James was coughing, bringing up mucous, like he always did after he ran or played with his friends for any period of time outside. He often would cough so hard he would throw up, He often would not participate or take frequent breaks so he wouldn't end up doubled up, coughing helplessly.

Then, in April, he met his friend at the park, and as we were leaving he said, "You know what was weird, mom? I could run as much as I wanted and I never had to cough."

His friends wanted him to take a soccer class with them and, with reservations, I signed him up. He went on Monday, and never coughed. An hour of running, kicking, playing - freedom - and not a cough. He did say he had a slight burning in his lungs after, but no coughing.

For him to be able to play and breathe without worry is a priceless gift.

The Downs

The very next day, James had a patch of hives on his arm after being hive free for nearly a month. I was hoping for bug bites, but as we watched, the changed shape, came and went and came again - not bug bites. It was a small patch and didn't spread. The next day, he had no more hives and so far, has been hive free again.

My Thoughts

James has severe problems with environmental allergies. His cough never occurred when he played hockey, inside. So, the lack of a cough is a sigh that his environmental allergies are improving and I'm so thankful.

His hives are also likely caused by environmental allergies. Although he hasn't had an episode as long lasting as he did this Spring, he has had hives every Spring for the past three years. And the hives on his arm the day after soccer could have been cause by his exposure to pollen while at soccer (and actually, we spent the entire day outside for a field trip).

And here is my dilemma. By not limiting his exposure to pollen, I am causing his body to constantly react, to reinforce his allergic response. But, I do not want to rob him of his present in order to prefect his future. And being active and being outside is extremely important to him.

So, those of you with children with extreme environmental allergies who are in treatment, how do you balance this?