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.

A New Epi-pen Case for Christmas

I know many people are looking for new epi-pen cases, particularly for teens, after the Auvi-Q recall. I bought James this one .

(That's the Super Smash Bros symbol for non-Nintendo fans out there. The shop has a lot of different images). 

I have no relationship (other than being a customer) with this shop. I like this case because it seems like it will be large enough to hold the epi-pens when they are in the Veta Case.

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!

Lessons from the Auvi-Q Recall

We do not use Auvi-Q, but my heart goes out to all those affected. Here's some things I've learned as this recall proceeds.

Have two types of epinephrine injectors at all times.

We have more than one set of epi-pens, but not more than one brand. This recall could have just as easily been for epi-pens. When the fervor has died down (so I am not getting an injector someone needs), I will be contacting James's allergist and asking for a prescription for Adrenaclick, which my insurance also covers. 

Replace your Auvi-Q as quickly as possible.

But, in the meantime, continue to carry your Auvi-Qs. They have reports of 26 device malfunctions and "In these reports, patients have described symptoms of the underlying hypersensitivity reaction." I looked up "hypersensitivity reaction" and it is an abnormal immune response. So, basically, the device did not inject enough epinephrine and the reaction continued. Until you can replace your Auvi-Q, I would carry whatever supply you have and, if necessary (as always), give multiple injections until the reaction stops.

Here is a link to the coupon co-pay for epi-pens: https://www.epipen.com/copay-offer/

Here is a link to the coupon for cash paying customers for Adrenaclick: https://webrebate.trialcard.com/coupon/EpinephrinePortal/

Remember that the app, GoodRx, will tell you where the prescription is the least expensive.

Get your Information Directly from the Source.

This is easier said than done. As I understand it, Sanofi has been very hard to get through to on the phone. And, whoever writes Sanofi U.S.s press releases needs to look for a different job. However, because the information was initially muddled, there were lots of stories making their way around social media. The only way to be confident in your information is to contact Sanofi. Here is a link to the Auvi-Q website https://www.auvi-q.com/ . There is a warning message on the home page that callers may get a message that the phone has been disconnected due to high volumes of calls.

What has Sanofi Said:

From the U.S. press release:

The recall involves all Auvi‑Q currently on the market and includes both the 0.15 mg and 0.3 mg strengths for hospitals, retailers and consumers. This includes lot number 2299596 through 3037230, which expire March 2016 through December 2016.

There is obvious confusion on whether all Auvi-Qs have been recalled or only the ones with the mentioned lot numbers.

From the Canadian press release (Allerject related): 

"Sanofi-aventis Canada Inc. (Sanofi Canada) is recalling all Allerject® (epinephrine injection, USP). The voluntary recall involves all Allerject currently on the market and includes both the 0.15 mg/ 0.15 mL and 0.3 mg/0.3 mL strengths for hospitals, retailers and consumers."

Note that there is no mention of lot numbers.

Tweeted from Sanofi:

1/2 IMPORTANT CLARIFICATION: @SanofiUS voluntary recall includes ALL Auvi-Q® (epinephrine injection, USP) devices currently in market.

— Sanofi US (@SanofiUS) October 28, 2015

And regarding the phones:

We are actively working to address phone line situation. You can continue to visit https://t.co/V6gVKtDo7B for info. Will update ASAP.

— Sanofi US (@SanofiUS) October 29, 2015

Stay Safe!

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.