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.

Allergy Friendly Copycat Candy Bars

Or, how I came to make two of my least favorite candies

When I was a child, I loved Butterfingers, one of my absolute favorites. I must have overindulged (a King sized bar was to blame I believe) and I had a nightmare. I ate a Butterfinger and ended up blowing an oil bubble as a result. It's pretty tame as nightmares go, but I was done with butterfingers. 

As an adult, I would have an occasional snack-sized bar, but I never regained my love. However, for the past couple years, I have been seeing easy homemade Butterfinger recipes and finally decided to give it a try.

Peanut Free Butterfingers

Free of: peanuts, tree nuts, wheat, fish, shellfish, milk       

Contains: Soy and Egg

*The soy means that James will not be able to eat them. It is in the form of soy protein in the candy corn. Luckily, I caught this before offering a taste.

Ingredients:

2 cups candy corn

2 cups Sunbutter

Chocolate coating (I used Vermont Nut Free dark chocolate melts)

Sprinkles (I used Target Dollar Spot sprinkles)

Directions

1. Melt the candy corn in the microwave in 30 second intervals until smooth.

2. Add the sunbutter and stir. This will not be easy and I recommend a mixer.

3. Press into an 8 x 8 or 9 x 9 pan which has parchment paper in it.

4. Put in the freezer for at least 30 min.

5. Cut the Butterfingers into pieces.

6. Using the directions here, melt your chocolate for dipping.

7. Cover with chocolate and quickly add the sprinkles on top.

Note:  Keep in mind that the smaller you cut the butterfingers, the more dipping you will have to do. This step may have gotten old for me.

And Mounds

I have never liked Mounds, not even as a child. They were only good for trading candy as far as I was concerned. However, I was not paying attention to our Amazon Subscribe and Save subscriptions and currently am buried in coconut. This was an attempt to use it up.

Free of: peanuts, tree nuts (except coconut), wheat fish, shellfish, and soy (yay!)

Contains: Egg and dairy (can be adapted to be dairy free)

Ingredients:

1 1/3 cup coconut flakes

2/3 c sugar

1/4 c cornstarch

1/2 c heavy cream

1/2 c coconut milk (in the carton not can)

2 egg yolks

2 T butter

Dipping chocolate and sprinkles

Note: To make dairy free, replace the 1/2 cup heavy cream and 1/2 c coconut milk with 1 cup full fat coconut milk from the can. Also replace the 2 T butter with coconut oil.

Directions:

1. Put the coconut milk and sugar in a saucepan.

2. heat over low heat until the sugar is dissolved.

3. Add the heavy cream, cornstarch, and butter and stir until combined.

4. Add about 1/3 c of the hot liquid to the egg yolks, stirring continuously. This will help to keep the egg yolks from scrambling.

4. While stirring continuously, add the egg yolk mixture to the pan.

5. Add the coconut flakes to the pan and stir until the mixture thickens.

6. Allow to cool in the refrigerator. Then place in the food processor and pulse until you have a smooth mixture. This step might not be necessary depending on the thickness of your coconut flakes.

7. Roll into balls (or flat ovals to copy Mounds more exactly).

8. Again, melt the dipping chocolate and use to cover each one. Add the sprinkles while the chocolate is still wet.

 

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.