And, I'm back (sort of)

Six months have passed and it isn't that I didn't have updates. I had so many updates and not enough time to process. I want to see this through to the end though, because it isn't much of a document of James's treatment journey if I quit when the getting is good.

Since I last posted:

• James passed all his food challenges (ie he is no longer allergic)
• He started high school
• I started teaching science to homeschool groups and families
• James was released from his allergist's care (just today)
• and he has started, very slowly, to wean off of his protocol.

Currently, he has two days a month when he has no protocol. If this goes well, we will work up to one week a month.

He has had a recurrence of his seasonal allergies. Like "normal" people, we are treating this with antihistamines. I'll be talking to Dr. Li this weekend to see if it's something to be concerned about (ie is this a sign his food allergies could also recur) or not.

I only forsee two more posts for this blog. One to update my cardamom ring recipe to add non-gluten free notes, because this is now where I keep the recipe. And one when treatment is complete.

Is this it?

We traveled to New York last month for James's 20 month follow up with Dr. Li. I really have no new blood work results to report, because, on paper, his testing is perfect. His improvements, even from last July, when he had already made a huge number of gains, are incredible. With that in mind, my first query to Dr. Li was:

"Is this it?"

James's quality of life has improved so significantly since beginning treatment, combined with the difficulty of tapering his Allegra down further, made me think that perhaps we had reached the end point of his treatment - and I was ok with that.

Dr. Li felt he still could go farther.

Her first recommendation was to have him have a food challenge, still on Allegra, and at most half the normal dose for a food challenge, eating that amount regularly. One of the benefits of seeing Dr. Li each day was that I could relay this to James's local allergist and have a response while still in daily contact with Dr. Li. Many times I have wished I could get them both in the same room to hash things out - this was the next best thing.

James's local allergist did not outright say no, but definitely expressed concerns. His first concern was that if James was still taking Allegra, minor symptoms might be suppressed and any reaction might be more serious before noticed. To combat this, the allergist said we would have to admit James to the hospital for the challenge and have an IV put in.

The allergist's second concern was with EoE. I know this is a controversial subject. I am reporting his concerns, not adding commentary because I think the research is still out. He felt that OIT had an increased risk of EoE and not doing a full challenge was too similar to OIT. Challenging when we weren't sure that James's immune system was fully healed could put him at a higher risk.

So, ultimately, the ball was in my court. James's allergist was willing, but ... Dr. Li recommended it.

I asked Dr. Li if it was even possible for James to develop EoE; his blood work shows 0% eosinophils in his blood. She said that yes, he could. Eosinophils can be in tissue and not blood.

I will be honest, EoE terrifies me. James has had digestive problems in the past (and to some extent, continuing) and I don't want to tip the scales. It seems the ultimate jumping out of the frying pan into
the fire.

And so, we decided to wait.

Inadvertently, we seem to have started James's Allegra taper again. Last Tues, the pills got stuck in his throat and he threw them up. This Tues, he forgot to take them. Unless I hear otherwise, I'm going to drop his Tuesday dose since he's gone two weeks without it with seemingly little effects. October will be a year since we began the taper. My goal now is to be done by next October!

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.

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.

Summary of Our In Person Appointment with Dr. Li

We returned to New York to see Dr. Li last week. Dr. Li and I had already discussed James's one year blood results during a phone consult. There is nothing like a face-to-face appointment though, so I was truly looking forward to seeing her.

Honestly, I had one hope of the appointment (being able to re-introduce legumes, which James's allergist felt were an intolerance, not an allergy) and James had another (reducing the dreaded cream). Dr. Li wisely followed James's lead and I will have to wait.

She started by checking his skin ("beautiful") and acupuncture. Upon returning, she took history and we discussed food challenges.

• She clarified that, although Kaiser records >0.35 as an allergy, she considers anything over 0.01 possibly still allergic. I am sure James's history of having severe reactions with low IgEs plays into this (in other words, this is specific to him and not a general statement of Dr. Li's thoughts).
• James asked to reduce to doing cream one time a day. She said this was fine, but that he should step down (one day a week), particularly as he is still stepping down from his Allegra.
• She asked James what food he would like to challenge first. He replied that he wanted wheat back, but that he thought he could pass soy. She said that when we were ready (off of Allegra, SPT from allergist), he could start with wheat.
• However, for each challenge he does, she wants to challenge only 1/5th of the amount that is usually used in the challenge. Then, she wants us to control how much returns into his diet, small amounts one day a week at first, stepping up a day a week, and then portion size. Her concern is he will feel sick from adding foods he has been avoiding into his diet and wants him to go slowly. He does tend towards GI problems. I will be discussing the smaller challenge with James's allergist.
• Dr. Li was most excited that James (on his own) had turned up the water heater and had not had hives. He used to have heat intolerance. In her words, "That shows true tolerance."

The biggest benefit of being in person was that Dr. Li was able to talk to James and let him guide the appointment. I always ask before any phone consult if he has anything he would like to add or ask, but the answer is always no. Being in person, her questions could be addressed directly to him. Dr. Li gives him flexibility, respect, and some control and he is more motivated to do what is required.

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. 

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.

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.

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. 

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.

 

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.

Preparing for a Monthly Consult

Each month, we have a monthly phone consult with Dr. Li, to update her on how James is doing and for any alterations in his protocol. I have struggled on how to best make use of this time. The first month, I pretty much only talked about the medicines, 'Yes he was taking them, no he hadn't had any problems with them.' Eventually, I realized that she was looking for more information than this, but how much information was enough, how much was too much, and how to be efficient - it's a balance I'm still working on. After all, Dr. Li not only sees patients, but conducts research, and as far as I can tell, rarely takes a day off. The time should be used efficiently.

The people on the Chinese Herbs for Allergies Facebook group (a wonderful resource that I highly recommend if you are interested in TCM treatment) have been helpful in guiding me in my latest attempt to be more efficient.

1. Throughout the month, I note any incidents of consequence in my google calendar. I've chosen bright red for the color so it stands out, although I would of course filter the calendar to show only allergy events.
2. At the end of the month, I turn those events into a bulleted list in an e-mail.
3. At the beginning of the e-mail, I re-cap James's current protocol, if there's been any deviation, and how much we currently have left of the herbs.
4. This month, James had a (brief) message of his own that I added at the end. There is a portion of his protocol (a bath) he had to stop due to his hives. Hot water frequently makes hives worse and this was the case for him. He's eager to restart the bath because he feels that doing the full protocol will be the most effective.

I'm always open for suggestions on how to use this time most efficiently. I only wish we lived close enough to see Dr. Li in person.

Daily Protocol for Treatment of Food Allergies with TCM

I hesitate to post this, not because I hesitate to share the information, but I don't want to give out any mis-information. This is a snapshot in time for one patient. By the very nature of Dr. Li's practice, she works with each patient as an individual. James's protocol has changed nearly every month. What the protocol is for James, I'm sure is very different for a patient of a different age, condition, and response. There are patients with no pills and patients with many more pills. So, please don't look at this and assume that if you or your child were to see Dr. Li, this would be your protocol.

That said, as of today, and at least until my next phone consult, this is James's daily routine:

After eating  (breakfast and dinner), he starts taking pills. He takes them in the order I have shown (although the capsules are mixed together, I've only separated them for the photo. He takes 5 at a time, mixed). He sets a timer for 1/2 an hour, takes the next set (he calls them M&M pills, for visual reasons only, there are 15), sets the timer for 1/2 an hour again, and takes the final 5 capsules. We have found if he doesn't take them spaced out this way, they make him sick (nauseous and heartburn). It's definitely the capsules that cause the upset. He's able to take the Mei Huang 4 without any issues. Dr. Li suggested spacing the dosages out and, as long as he sticks to it, he does fine.

So, each day total, he takes 50 pills over a 3 hour period. This is actually the part of the protocol he doesn't mind, assuming he leaves enough time between doses that  he doesn't get sick.

For those wondering what the pills are for, I can only speak to use for my son and my understanding as it's been explained. Different people may have the same pills prescribed by Dr. Li for different things.

Good Mood Tea: To help anxiety, he hates the name whereas it makes me want to sneak some every now and then

Mei Huang Tea 4: To lower IgE/help with food allergies

Shi Zhen Tea 1A: To help his skin/itchiness/hives

After he's had all his pills, before bed, he showers and then his dad puts Cream III-VB on him.

 This is the part he doesn't like. Previously he used Cream IIIB, which had a texture similar to Aquaphor™, and it stank. In my opinion, it smelled strongly like dirt. I was physically repelled by the smell. He put it on himself. 

Dr. Li wanted to be sure he was getting the cream applied adequately, which meant by someone else. She felt he would be more receptive to this with a second version that has the same medicinal properties but a different base. It's much lighter, both in texture and smell. James says it smells like lemons; I can't smell it. It's a water based cream, so it goes on much more smoothly and lightly.

But, he hates having someone else put cream on him and he hates the green tinge on his clothes and his skin. He doesn't like when Darren affectionately calls him the Hulk.

Cream III-VB: to help lower iGe/food allergies

A month of this protocol (for a 12 year old who is 5'6" and just over 100 lbs) is nearly $800. It is a commitment, both financially for the family and for James, daily dedication.