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.