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.

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.

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.