Goal Setting

When James started treatment, my goal was pretty clear: I didn't want him to be allergic anymore. The allergy seemed the mountain to be conquered.

What I didn't know was how ill he had always been. Having been told, "this is normal," what I didn't hear is: "This is normal for him. This is not life threatening."

The food allergies were obviously not normal and obviously life threatening, so they became the enemy.

His health improvement was so fast and so nearly complete that it quickly became obvious that his previous struggles were not normal, not even normal for him. It became clear how completely they were affecting his daily quality of life. Since it had always been that way, none of us knew.

He had a brief, slight regression and seems to have recovered. I realized that his allergies were no longer the main mountain we were climbing.

I want to clarify our goals while seeing Dr. Li this month:

• Can he maintain his gains (or improve more)?
• Will he be able to maintain them even when eventually weaned from treatment?
• Realistically, should we be planning on food challenges or should we be focusing on getting him healthy, without attempting to introduce the foods he's allergic to?

Protocol Update:

Currently James is taking:

• Digestion Tea 2 (in tea form, not capsules. Most of the teas he takes are in capsules. There's one herb in the capsule version he cannot have, so he gets the drinkable version). We give 1/2 a packer of 6 different herbs mixed together in hot water twice a day
• Shu Chuan Tea - 6 capsules twice a day
• Shi Zhen Tea 1a - 6 capsules twice a day
• Good Mood Tea - 5 capsules twice a day
• Niu Bang Zhi (2 packets), Huang Bai (2 tsp), and Shi Zhen (1 capful) mixed together in his bath once a day
• Cream 3vb once a day

His focus in treatment has shifted to focus more on his GI problems and keeping his skin clear.

Back to Camp

I had really hoped to skip camp this year. I had every reason to believe that not only would it not be necessary, but we could even stretch our visits out to a year, avoiding the expensive summer season.

Life laughs.

In addition to his atopies, James has Tourette Syndrome. It was, comparatively,  minor by the time we saw Dr. Li and had been for some months.

Since James has been reducing his medications (both Allegra and melatonin), his tics have increased exponentially. At 10 years old, his tics were bad enough that he asked to be medicated. He tried but the side effects to the medication were intolerable. His tics have increased to that point, perhaps beyond.

Dr. Li asked about increasing both Allegra and melatonin. I explained my hesitation at increasing either, but particularly Allegra. We will not e able to do any food challenges if we can't remove him from Allegra. She concurred and we met in the middle. His Allegra will remain the same, his melatonin will be increased. She is making a custom herbal formula for him. Hopefully, he will see some improvement. She asked him to try acupuncture locally, which I am in the process of arranging.

And, we are going back to camp.

Last year, I was in the position of advocated for camp and Darren and James were more reluctant. This year, they are the enthusiastic ones and I am ... worn. Darren and I spent a day re-arranging travel plans. We have a family trip scheduled, also Back East, for the week following camp. Planes needed to be changed, hotels booked, logistics figured out. But, it is done.

What I'm doing differently this year:

1. A full kitchen, not a microwave, mini-fridge, cook in the bathroom combo. I couldn't face that again this year.

2. Gulp. A red eye flight. We couldn't find anything else (using airline points). Anyone want to wager that this will be my 'never again' point next year?

3. Not make any plans of tourist things to do. What we see is fine, but, I found last year, James needs rest after acupuncture. Often, by the time he had the energy to go out and see, it was night. Not that there isn't a lot to see at night!

Protocol Update

Disclaimer: As always, this is one experience with Dr. Li's protocol. Each protocol is personalized. No generalizations to your own situation should be made. Thank you.

I have tried all sorts of options to organize James's protocol. So, I thought I would give you a glimpse into my fancy system as it stands now.

Eat your heart out, Martha Stewart!

I have been through several different pill sorting boxes and have outgrown them all. I have finally take to saving pill bottles and cream jars, labeling, and filling them. This box has a weeks worth of sorted pills and any open pill bottles. It lives on a shelf in the bathroom so James can help himself.

This is in my closet and is the unopened pills for two months. Our expenses are currently about $1000 a month.

This is a nightly pill container. I can tell it is for night time because of the Allegra poking out. His protocol from Dr. Li does not change pill wise from morning to night.

He is currently taking:

8 Mei Huang tea 5 Tea capsules 2 times a day
8 Shi Zhen Tea 1a Tea capsules 2 times a day
6 Shu Chuan Tea capsules 2 times a day
5 Mu Lian pills 2 times a day
5 Good Mood Tea capsules 2 times a day
1/2 an allegra once a day
2 tsp of Huang Lian in the bath, once a day
2 packets of Niu Bang Zi in the bath, once a day
Cream IIIVB, full body application, once a day

For James, the most exciting change has been dropping the cream from twice a day to once. I cannot describe how much he hates the cream.

For me, it has been inching closer to being able to remove Allegra entirely from his protocol. This month, Dr. Li asked us to hold steady at half a pill for a month (we had been dropping half a pill every other week). I have noticed that when he reduces the amount, he has seasonal allergy symptoms for a day or two after. This week was particularly bad and he was unable to sleep for a night. However, they resolve fairly quickly so I have to guess that it is his body adjusting to the lower dose of antihistamine. Assuming all goes well, he will no longer use antihistamines in the beginning of June and we will be able to schedule skin testing.

If you had told me when we got his blood test results  that it would be at least 7 months until he was able to have skin testing, I would have thought you were crazy. And, I am not going to lie and say that the waiting is easy. Every year between March and June, James has had a major flair of his hives. If he can get through this season successfully while reducing his antihistamines, it will be a huge victory.

So, we wait.

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!

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.

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.

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.

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. 

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.

Three's a Crowd?

Balancing Between a Research Allergist and a Local Allergist

Dr. Li does not replace your local allergist and, in fact, on her website under the FAQs, she outlines why she likes to work with local physicians and why they will need to do your blood work. Still, almost from the beginning, I have struggled to decide what issues are a local allergist issue and what are ones for Dr. Li.

An example that worked well

In March, James had hives for about three weeks. When they first began, we treated them ourselves and thought I would mention them to Dr. Li during our regular consult. Hives are not unusual for James.

As the week progressed and they were not under control, it became obvious that they worsened during bath and shower (likely from the hot water). I contacted Dr. Li by e-mail to see if we could eliminate one to reduce his water time. She responded quickly and told us to stop his bath until further notice.

By the beginning of the next week, we still didn't have his hives under control, so I e-mailed his allergist for advice on a protocol to help control the hives. It took a couple of weeks and a few e-mails to get a protocol to begin to work. The hives were improved but he still had daily breakthrough hives. 

During that time, we also had our regular phone consult with Dr. Li. She adjusted her protocol as well. Two days after her changes, the hives stopped and I started reducing his western medicines. It took about a week to return to his previous levels and, although he continues to have mild hives occasionally, for the most part, the issue is resolved.

An example I'm less comfortable with

Dr. Li had casually mentioned mast cells to me a couple times (note to self: Dr. Li doesn't casually mention. If she says something, it is not in passing.). After the second time, I e-mailed James's local allergist asking if Mast Cell Activation Syndrome* was a possibility for James. And he replied yes, but he also sees people that it could be a possibility for that don't have it. So, we agreed to wait until James already needed blood work and run a tryptase* test.

Which we did and the results were normal. And now Dr. Li says not so casually that she is concerned about his mast cells and she wants him tested, but she wants a Prostglandin D2* test. And this puts me in the somewhat awkward position of returning to our local allergist, 'Thanks for the first test. Yes, I know it was normal. Hmm. I would really like this second test, supposed to be better. I hear. Carry on."

This is not a matter of not trusting James's local allergist, because I do, this is a matter of Dr. Li having a more complete picture of James's health. Although we don't talk long, we have had ten consults between October and now (nine planned and one in between). I have attempted to document for her each symptom and improvement. His local allergist has had one consult and a handful of e-mails.

I should add that our local allergist is really supportive of our seeing Dr. Li and told us she was "brilliant." So, this is more about communication and using each of their time and resources wisely.

Have you had any issues balancing doctors? How do you handle it?

*  Definitions available on the Glossary page

Updates: Protocol and Finances

Treatment Update:

I outlined James's daily protocol back in April. He's gone through a few, mostly minor, adjustments since then. His protocol as it stands today is:

Mei Huang Tea 4, 20 pills, 2 times a day

Shi Zhen 1A tea, 6 capsules, 2 times a day

Good Mood Tea, 5 capsules, 2 times a day

Cream III-VB, once a day only on his lower legs and once a day full body. We use about a jar a week, but I suspect this will go up as he is now using it on his lower legs. This is new.

Huang Lian bath  - this is new and was on back order, so we weren't charged and aren't starting it yet

The total for all this (minus the bath) was just over $1000.

Dr. Li has asked for another test from our allergist, a Progstaglandin D2 test, which is a marker for Mast Cell Activation Syndrome. Imagine my surprise upon reading the e-mail from him that he was happy to order the test - James's urine would have to be collected for 24 hours. Honestly, things like this are not in the baby books! I am certainly glad he is older.

She also asked us to come to New York in July instead of October for a session she runs of weekly appointments, one consult and then a week's worth of acupuncture. So, the beginning of this week was a bit of scrambling for travel arrangements but everything came together nicely.

Financial Update

Here's my initial thoughts on affording TCM and truly our costs have only gone up since then, especially with an unexpected trip this summer. 

The Cell Phone

What a (continuing) saga! Ting did not work out at all. It may be a good option if you are not porting a number however it was nothing but headaches for me. My number ported, but I was not able to text. I could make calls and receive texts, but I could not send any texts. I contacted their customer service and after they attempted helping me eventually their response was, "Is it raining there?" I live in a drought zone. "Well it's raining here. I think that's interfering with your signal." And this is when my head exploded.

My husband had to take over and they had him do a complete reboot of my phone, which means that I was left with a phone that could only make phone calls. I lasted approximately 1 1/2 hours.

My husband found Scratch Wireless. They offer free texting and free everything over wi-fi. If you don't have wi-fi, you can pay for a pass. You need to use their phone (it's a Coolpad something - a Chinese made smartphone. It is not fancy but it works. It's $99 though them. You can buy it used but we bought it new because I have had enough problems).

This works for us because we have no-data cap cell phone internet through my husband's work. It can come with me wherever I go. If you live in an area of high wi-fi coverage, this would work. If you would need to regularly purchase a pass, it might not be worth it.

We decided to also buy one for James. We have pre-order the Veta Epi-Pen case and up until now, he has not had a cell phone.

Edited: Scratch is no longer offering free texting, only over wi-fe. And, honestly, after six months, I was already frustrated with the service and the phone. I have asked for a "grown-up phone" for Christmas.

Satellite

Satellite has been cancelled. This is much more of annoyance for my husband than I. Half the time I don't even notice if there's a buffering or if the show if running properly. That said, Sling TV has a tendency to get stuck at the end of a show and the next episode needs to be selected in order to be watched. Some channels (ESPN) don't run the commercials; they put a graphic up. You would think this is a benefit but ESPN it turns out has a ton of commercials. It's more graphic than programming. I, of course, think this is a reason to not watch ESPN, but not everyone in my household agrees.

Mental Status

The past week has been a strain: unexpected travel, unexpected testing, rising costs, downgrading of lifestyle (first world problem :-) ). I did what every good Southern Californian does when under stress - I headed to the beach. 

A small reminder to myself, that it is most important when the burdens seem high, to continue living our lives, enjoying ourselves, and making time for the fun.

 

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.

Clinical Trial vs Private Treatment #FAREcon

I had the privileged of volunteering at the FARE National Food Allergy Conference this past weekend, which allowed me to attend many fantastic presentations. Over the next few blog posts, I will summarize some of the research presented.

Out of my swirling my, one fact stood out. Dr. Baker, the CEO of FARE stated that the FDA had told DBV, the maker of the Viaskin Peanut Patch and ARC, the maker of CODIT, that they each needed studies of 8,000 people in order to get approval of their products.

8,000!

Staggering.

The LEAP Study, which was fairly widely commended for its size had 640 infants enrolled. In 2014, DBV announced results of its IIb study, "the largest clinical trial in peanut allergy desensitization ever completed" - 221 patients.

How will they ever get 8,000 patients each?

Why We Chose Private Practice

We briefly considered enrolling in a clinical trial. James qualified to be evaluated for a clinical trial for OIT to wheat at Stanford. My husband, in particular, was interested in considering this route. So, why did we decide against it?

1.  As I shared in my first post, we chose a different treatment. My husband, like many, had heard of OIT through the news. The trial, for us, opened the conversation, but OIT was not the right treatment for our family. I would not recommend choosing a treatment only because a trial is available.
2. We would have had to travel to Stanford every other week, for two years, about a 6-7 hour drive. Unless you think no one would ever be willing to do this, you should read this article of people who did a drive of the same time for the same reason.
3. The placebo. I will admit that I didn't want the risk of James being administered the placebo. We were told upfront that we would be offered what they could at the end of the trial for treatment. I don't know what that means, because I did not investigate the trial any further.

Benefits of a Clinical Trial

1. You have access to some of the best medical care and minds. 
2. You have access to treatments and testing that aren't yet available outside of trials.
3. You are helping to advance science and the community as a whole.

8,000 Patients

I have so much respect and appreciation for those families that do participate in clinical studies. Despite the perception that it is "free," because they don't pay for the medicine, the saying, "there is no free ride," certainly applies - time off for appointments, traveling, stress, emotional wear and tear. Thank you.

How in the World do we Afford TCM?

I'll begin by saying we are both fortunate and hard-working. I well understand that there are some people for whom this is completely out of reach and this post is by no means meant to be a judgement. I decided to share our journey, warts and all, and quite honestly, the finances are a large part of it.

I will also say, that if you are looking for ground shaking, frugal ideas, you are at the wrong blog. The things we have done are pretty normal, common sense ideas. It's simply what we've done and what we are researching.

No Car Payment

Years ago, we turned in a truck in the "Cash for Clunkers" deal. From that, we had 0% financing on one SUV and a 2007 Prius we had payed for in cash. As it turned out, we made the last payment for the SUV in the spring before starting with Dr. Li in the fall.

Savings: $560 each month

We had hoped that this would cover the cost of James's treatment, but he had outstripped that by the third month.

As a small savings (total unknown), we began to let go of the idea of "my" car and "your" car. We decide who drives what car in a day based on who is going to drive the farthest. Some weeks, this actual adds up to significant amounts.

Estimated Savings: approximately $60 a month

Not Shopping

I can't really put a price on this, but we just don't go to the stores that often. We make do, make things last, or do without as much as possible. Of course, this week, when we ran out of milk (there was plenty of other food), I may have been called "oblivious" by a certain tween in the household.

Things we are investigating:

Cell Phone Plans

My Verizon plan will be up next month and I plan to switch to a low cost carrier. I have had one in the past and hated it, but am willing to learn to live with it for the savings now. Priorities change.

My first choice is Ting. Their prices are good ; my average price would be approximately $33. And I can keep my phone. I don't love my phone. I would love to upgrade, but is it worth the money?

I have requested in invitation to Google's Project Fi. It's $20 a month for talk and text (no data). Each GB of data is $10, I currently have 2 GB/month, so that would be $20, for a total or $40 a month. You also get credits for the data you don't use. I currently pay about $95. You have to use a Nexus 6, which is $700, so factoring in the cost of the phone, it would take 15 1/2 months to start seeing any savings.

It seems pretty obvious that seeing the savings right away is more important than the upgraded phone. Ting is the winner.

Projected Savings: approximately $60 a month

Cancelling Satellite

We currently pay approximately $112 a month for satellite. We live in an area where there is no cable. However, we are fortunate to have no data cap on internet through my husband's work. Because of the area we live in, it's not always the fastest. The only option (besides satellite which is not secure enough for his work) is wireless cell phone internet. Sometimes - it's - a - little - choppy. However, we are doing a free month trial with Sling TV. It is $20 a month.

My husband really likes sports, especially baseball. MLBtv is between $115 and $95 a year. The cheapest option would be to pay for audio only ($20 for the year) and watch only the games he is able to see through ESPN on Sling and that we get on the antenna. The final option is the one he is leaning towards.

Projected Savings: approximately $90 a month

Savings per month: Approximately $770,  still under the current bill (I have not gotten our most recent shipment of herbs, however James's dosage has increased. I do believe our bill will have increased significantly from the previous $800 a month reported earlier). However, for us, these savings are fairly easy to do and make the cost easier to handle (for us).

Selling Things

We have lots of ... stuff. Generally, I take things to Goodwill, but there are some things that have hung around simply because of their value, not because I want them. This summer I will be doing a clean up and getting rid of some knick knacks. They may not (won't) bring in a ton, but they also won't be taking up space anymore.

Things we haven't cut back on:

I will give this is own post, to go into more details as to the why, but the short version: food, entertainment, education, and our gardeners.

Helping Each Other

Obviously, others may make different choices or be in the fortunate position to not have to make any of these choices. Regardless, I think all of us in treatment (or not, or with struggles, food allergies or not) should support each other, whether it is through compassion and understanding or, if we can, monetarily. Which brings me to the end of my post.

Another family in treatment is raising funds for their daughter (partially) by selling t-shirts. I have one and it's a great shirt.  Here's a picture of the v-neck. There is a regular t-shirt neck as well.They are each $20.

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?