New Research, New Hope Part 1 #FAREcon

* CDC. HIV Surveillance Report,2013; vol. 25. Published February 2015.
+Case Fatality and Population Morality Associated with Anaphylaxis in the United States, J Allergy Clin Immunol. 2014 Apr; 133(4): 1075–1083. (includes deaths due to anaphylaxis from any cause)

Dr. Baker began his introductory comments comparing the food allergy epidemic with the AIDS epidemic. I understand the analogy, but I also found it offensive. Obviously, I feel passionately about food allergies. I can feel passionately about food allergies and compassionately for people fighting other battles. I also know well the struggle with anxiety that people with food allergies face. And, to catastrophize food allergies raises the often high anxiety of people's real stress learning to manage food allergies. 

Every life lost, in both column, is a tragedy. 

Dupilumab

The first treatment that Dr. Baker spoke of, it's currently in trials for eczema and asthma and has good results so far. 

As a basic review (forgive my simplification), the portion of the immune system that regulates the immune system is Th2 (stands for T-helper). And when TH2 cells are activated, there are (scientific jargon coming) a whole mess of proteins they can release. Two of these are IL-4 and IL-13 (IL=interleukin, which is not nearly as easy to remember as T-helper. Dupilumap was developed to block the release of IL-4 and IL-13.

Dr. Baker spoke hopefully of the possibility that Dupilumab would be useful for people with food allergies as it's original trial was for eczema and it was found to improve asthma. Additionally, it seemed to block the atopic march.

He stated that for the six months it has been trialed, it has been shown to be safe, with the people in the placebo group to have had greater side effects, from their uncontrolled eczema and asthma. 

My thoughts

For many people with allergies, eczema and asthma are an enormous problem, if not a greater problem. I well remember the impact of sleepless nights from when James had hives. I can only imagine uncontrolled eczema, the fear of infection, the itching, and the pain. Hopefully, this will offer relief for those people who have tried everything and cannot find it.

To present this first, and seemingly as the best hope, for people with food allergies when not a single piece of data has been collected regarding food allergies seemed odd. It's data I agree, I would love to see. In a conference, where parents have come to get "New Hope," I'm concerned it may have been putting the cart before the horse to suggest that this will provide a cure. In my first post, I analyzed three different food allergy treatments currently being used, in private practice and in trial. I could have added more. 

And always, I was concerned about the six months of safety data. That, of course, is the risk/benefit analysis that we as parents, as people, as patients have to make every time we choose to take (or not) a medication. 


Part 2: The Peanut Vaccine

Part 3: Dr. Nagler and the Microbiome

Part 4: Dr. Finkelman and anti-human FcεRIα mAB

Fear and Hope, James's Perspective

James is participating in a Read-A-Thon on Tuesday, started by a remarkable young woman who is in a peanut clinical trial. Technically, the Read-a-Thon is Monday, but we will be enjoying the company of our family. On Tuesday, we will be enjoying the quiet of our car on the way home, perfect for long stretches of reading.

I asked him to write the description on his page, answering the question as to why raising money for food allergy research is important.

Having anaphylaxis used to truly scare me, every day, all the time. I wondered why people couldn’t just create nutritional pills to give you your food. That would have already made me feel ten times safer than the alternative of eating regular food. But now I’m getting allergy treatment with Dr Li and I’m very thankful for it because worrying isn’t as much a big part of my life as it used to be. I can feel safe about about eating things I’m familiar with because I know the treatment will at least keep me from getting any serious reactions.

I didn't edit anything he wrote, so I want to be clear, the number of food allergies hasn't decreased. He is eating a wider diet because he isn't scared.

To be scared of food. To have a child scared of food. It's a heavy burden.

Obviously, James is in treatment with the goal of more than freedom from fear. But, when we started treatment, we told him, "This may not be a cure. At the end, you may not be be able to eat your allergens. If we do this, what is the least that you will be satisfied with?"

"I don't want to be afraid anymore."

This is why more research is needed. People should not be afraid to eat.

Clinical Trial vs Private Treatment #FAREcon

I had the privileged of volunteering at the FARE National Food Allergy Conference this past weekend, which allowed me to attend many fantastic presentations. Over the next few blog posts, I will summarize some of the research presented.

Out of my swirling my, one fact stood out. Dr. Baker, the CEO of FARE stated that the FDA had told DBV, the maker of the Viaskin Peanut Patch and ARC, the maker of CODIT, that they each needed studies of 8,000 people in order to get approval of their products.

8,000!

Staggering.

The LEAP Study, which was fairly widely commended for its size had 640 infants enrolled. In 2014, DBV announced results of its IIb study, "the largest clinical trial in peanut allergy desensitization ever completed" - 221 patients.

How will they ever get 8,000 patients each?

Why We Chose Private Practice

We briefly considered enrolling in a clinical trial. James qualified to be evaluated for a clinical trial for OIT to wheat at Stanford. My husband, in particular, was interested in considering this route. So, why did we decide against it?

1.  As I shared in my first post, we chose a different treatment. My husband, like many, had heard of OIT through the news. The trial, for us, opened the conversation, but OIT was not the right treatment for our family. I would not recommend choosing a treatment only because a trial is available.
2. We would have had to travel to Stanford every other week, for two years, about a 6-7 hour drive. Unless you think no one would ever be willing to do this, you should read this article of people who did a drive of the same time for the same reason.
3. The placebo. I will admit that I didn't want the risk of James being administered the placebo. We were told upfront that we would be offered what they could at the end of the trial for treatment. I don't know what that means, because I did not investigate the trial any further.

Benefits of a Clinical Trial

1. You have access to some of the best medical care and minds. 
2. You have access to treatments and testing that aren't yet available outside of trials.
3. You are helping to advance science and the community as a whole.

8,000 Patients

I have so much respect and appreciation for those families that do participate in clinical studies. Despite the perception that it is "free," because they don't pay for the medicine, the saying, "there is no free ride," certainly applies - time off for appointments, traveling, stress, emotional wear and tear. Thank you.

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.

"That's No Ordinary Rabbit"

We are in Food Allergy Awareness Week. Technically, rabbits are food. However, I will not be speaking of them in that context.

Two weeks ago, a dear friend's husband had a life-threatening reaction to their pet rabbit. He had been having asthma problems which were related to the rabbit for some time. The rabbit had been relegated to the garage. Even so, this day, when he went into the garage, he had trouble breathing, used his asthma medication, found no relief, and eventually, was taken to the hospital. He was given epinephrine, Benadryl, and steroids. He left with a prescription for Epi-pens, steroids, and a refill for his inhaler, but, as is so familiar, very little instructions or directions on what to do next.

Here is my advice, having been down a similar path, somewhat generalized, for those who may walk this path again:

Avoid your Allergen

This is an emotional blow, different when you are talking about a beloved pet versus a food, but either way, those words, which seem simple on the face, are actually quite difficult. Quoting Dr. Dave Stukus, "Families told to get rid of their pets by their allergists find themselves a new allergist, not a new pet." And I know when James got his test results back, my second thought (after looking at the food) was to be relieved that he was not allergic to the dogs and cats.

Epi-Pens: Carry Them, Keep them Together

Obviously, a rabbit being easier to avoid than most allergens, it may seem like you don't need them with you always. There's a few reasons I would argue that with even a seemingly easy to avoid allergy, you always need your epi-pens with you:

1. It can take months for your environment to be fully clean of the proteins from pet, even with thorough cleaning. Regarding mammalian proteins in an article about anaphylaxis from a horse allergy: "It is necessary to remember that the allergen levels decrease slowly over several months after pet removal." Gao et al, Wao Journal, Aug. 2009
2. Other people own pets and allergic proteins are clingy. I, myself, have experienced going to the Urgent Care (not allergy related) only to be treated from the door way because the doctor's pet allergies were too severe to treat me. Note to self: Use tape roller before heading to Urgent Care?
3. There is always the possibility that instead of the rabbit, the reaction was caused by the hay the rabbit was being fed. Grass (hay being a form of grass) is actually a more common allergy than rabbit. And a more common trigger.

Here is a link for a co-pay coupon for the Epi-pen.

See a Board-Certified Allergist

An allergist will be able to sort through the history and do the testing to determine what the allergy actually is. He will also be able to give an emergency action plan, clear for the entire family.

Rodent Allergies

This is information I found specific to rodent allergies.

What information would you share for someone newly diagnosed?

 

The Roller Coaster Ride

The Ups

Is he ok?

Yeah, he coughs like that when he runs or exercises. I told his pediatrician. She says it's normal.

That is not normal. Tell her again.

A conversation I had with a friend of mine, a nurse, last August. James was coughing, bringing up mucous, like he always did after he ran or played with his friends for any period of time outside. He often would cough so hard he would throw up, He often would not participate or take frequent breaks so he wouldn't end up doubled up, coughing helplessly.

Then, in April, he met his friend at the park, and as we were leaving he said, "You know what was weird, mom? I could run as much as I wanted and I never had to cough."

His friends wanted him to take a soccer class with them and, with reservations, I signed him up. He went on Monday, and never coughed. An hour of running, kicking, playing - freedom - and not a cough. He did say he had a slight burning in his lungs after, but no coughing.

For him to be able to play and breathe without worry is a priceless gift.

The Downs

The very next day, James had a patch of hives on his arm after being hive free for nearly a month. I was hoping for bug bites, but as we watched, the changed shape, came and went and came again - not bug bites. It was a small patch and didn't spread. The next day, he had no more hives and so far, has been hive free again.

My Thoughts

James has severe problems with environmental allergies. His cough never occurred when he played hockey, inside. So, the lack of a cough is a sigh that his environmental allergies are improving and I'm so thankful.

His hives are also likely caused by environmental allergies. Although he hasn't had an episode as long lasting as he did this Spring, he has had hives every Spring for the past three years. And the hives on his arm the day after soccer could have been cause by his exposure to pollen while at soccer (and actually, we spent the entire day outside for a field trip).

And here is my dilemma. By not limiting his exposure to pollen, I am causing his body to constantly react, to reinforce his allergic response. But, I do not want to rob him of his present in order to prefect his future. And being active and being outside is extremely important to him.

So, those of you with children with extreme environmental allergies who are in treatment, how do you balance this?

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.

Where in the World is My Epi?

Kids with Food Allergies is running a year long campaign to encourage people to always have their epi-pens (or epinephrine device of choice with them). By uploading a picture with the #WhereInTheWorldIsMyEpinephrine at a platform of your choice (see details here ), you can be entered into a monthly drawing for $400 worth of products.

Here's a collection of pictures from our recent trip. Can you see his epi-pens in these pictures? They are visible, although I don't think visible enough for the contest (which is fine, James would not want them that visible).

The bottom two pictures were taken at Zion National Park. We took a shuttle on the way back and here's what we heard over the radio as we went (name and age changed for privacy because I, frankly, can't believe they gave that information out over the radio when it wasn't private):

We have a 15 year old girl, Trixie, in anaphylactic shock. Epi has been given. Coming out of the Narrows.

What did she react to?

In my head: Who the hell cares?

I don't know. She has been given an epi-pen. Her throat just started closing up. We need an ambulance.

But, was she stung by something? Did she eat something?

In my head again: Who the hell cares?

James: "Why isn't the driver calling for help?" 

Our driver had not been using the radio, this was all overheard, so we explained that he would hear what was going on throughout the park, but that others were helping.

James: "Someone needs to help her."

We're out of the Narrows now. 

Is she stable?

In my head: Finally!

Yes, she's stable. She's walking.

Ambulance and rangers are on their way.

And at this point, they pass our shuttle.

This is the Narrows.

She was smart, she carried her epi-pen. I am still thinking of her everyday and hoping she is ok.

Where in the world is your epinephrine?