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!

A happy(er) Anniversary

As of today, it has been one year since James had needed to use an epi-pen. For the record, it's the day before his birthday. I'm never sure how to talk about his life threatening reactions - all emotion with no language attached. While we were on our way to Urgent Care (note: if you have given an epi-pen, please go to the ER, not Urgent Care), James looked at me and said, "I want to go to Dr. Li. I don't ever want to go through this again."

Eight months earlier, after James's failed food challenge, I had begun researching and had brought up Dr. Li to both him and my husband. James was adamant that he was not interested. He would avoid his allergens and be fine. He didn't want to eat what he was allergic to. He didn't want anything to do with allergists. He wanted to be left alone. On the wise advice from others in the CHA FB group, I continued to mention case studies every so often to keep Dr. Li in his mind, but conversationally.

And although he wanted to be left alone, his condition changed after his food challenge. For the first year after diagnosis, I knew very little about food allergies and that was fine. I read labels without worrying about "crazy" things like were there nuts in the factory (I didn't even know that the label didn't have to reflect that), he ate at other people's houses, whatever was served, out at restaurants - we went about our lives minus his allergens and had only one incident, when he was served nut ice cream at an ice cream parlor (yes, we even ate at ice cream parlors). Luckily, he was sharing with my husband, who ate first and discovered the error.

After his food challenge, I first learned about the screwy labeling laws, when he got sick after having some sprinkles on a cupcake I made and he got sick. He had had his healthiest year his entire life after having his allergens removed (because he had had chronic diarrhea before that) and suddenly, sick again. I called about the sprinkles, and felt my world tilt, 'Could he really be sick from the amount of nut that could be in a bottle of sprinkles?'

Then, it was a tea bag that my husband brought home after a conference. In this case, there was no case of cross contact, but it was a rooibos tea, and, the operator told me in a concerned voice, she thought I ought to call my allergist, because it was a legume like peanuts. And soon, he was getting sick from more and more legumes, until we decided to avoid them altogether.

Which brings use to June 30, 2014, when for dinner, he had mango, melon, and rice (in my defense, I'm sure more was served. I have no idea what anymore). And he had diarrhea. Not unusual. But then, his throat started tightening, which was. He knew as soon as the diarrhea started it was not his usual, and had asked for Benadryl. When his throat started tightening, we went to the refrigerator, talked about the emergency action plan, and he administered the epi-pen to himself.

After a fair amount of testing, the reaction ended up being OAS to the melon. Illustrating the importance of following up with your allergist, Urgent Care called us and diagnosed him with a mango allergy because his RAST test was positive (it is also positive for melon but Urgent Care couldn't figure out how to code to test melon). OAS rarely causes a systemic reaction, however with two systems involved, his allergist agreed it was better to give the epi-pen than not.

Since seeing Dr. Li, James has not lost anymore foods. He has not had any severe reactions. I hope to celebrate this anniversary again next year.