A happy(er) Anniversary

As of today, it has been one year since James had needed to use an epi-pen. For the record, it's the day before his birthday. I'm never sure how to talk about his life threatening reactions - all emotion with no language attached. While we were on our way to Urgent Care (note: if you have given an epi-pen, please go to the ER, not Urgent Care), James looked at me and said, "I want to go to Dr. Li. I don't ever want to go through this again."

Eight months earlier, after James's failed food challenge, I had begun researching and had brought up Dr. Li to both him and my husband. James was adamant that he was not interested. He would avoid his allergens and be fine. He didn't want to eat what he was allergic to. He didn't want anything to do with allergists. He wanted to be left alone. On the wise advice from others in the CHA FB group, I continued to mention case studies every so often to keep Dr. Li in his mind, but conversationally.

And although he wanted to be left alone, his condition changed after his food challenge. For the first year after diagnosis, I knew very little about food allergies and that was fine. I read labels without worrying about "crazy" things like were there nuts in the factory (I didn't even know that the label didn't have to reflect that), he ate at other people's houses, whatever was served, out at restaurants - we went about our lives minus his allergens and had only one incident, when he was served nut ice cream at an ice cream parlor (yes, we even ate at ice cream parlors). Luckily, he was sharing with my husband, who ate first and discovered the error.

After his food challenge, I first learned about the screwy labeling laws, when he got sick after having some sprinkles on a cupcake I made and he got sick. He had had his healthiest year his entire life after having his allergens removed (because he had had chronic diarrhea before that) and suddenly, sick again. I called about the sprinkles, and felt my world tilt, 'Could he really be sick from the amount of nut that could be in a bottle of sprinkles?'

Then, it was a tea bag that my husband brought home after a conference. In this case, there was no case of cross contact, but it was a rooibos tea, and, the operator told me in a concerned voice, she thought I ought to call my allergist, because it was a legume like peanuts. And soon, he was getting sick from more and more legumes, until we decided to avoid them altogether.

Which brings use to June 30, 2014, when for dinner, he had mango, melon, and rice (in my defense, I'm sure more was served. I have no idea what anymore). And he had diarrhea. Not unusual. But then, his throat started tightening, which was. He knew as soon as the diarrhea started it was not his usual, and had asked for Benadryl. When his throat started tightening, we went to the refrigerator, talked about the emergency action plan, and he administered the epi-pen to himself.

After a fair amount of testing, the reaction ended up being OAS to the melon. Illustrating the importance of following up with your allergist, Urgent Care called us and diagnosed him with a mango allergy because his RAST test was positive (it is also positive for melon but Urgent Care couldn't figure out how to code to test melon). OAS rarely causes a systemic reaction, however with two systems involved, his allergist agreed it was better to give the epi-pen than not.

Since seeing Dr. Li, James has not lost anymore foods. He has not had any severe reactions. I hope to celebrate this anniversary again next year.

A Life Needlessly Lost

Today is the one year anniversary of the death of Sergio Lopez. He ordered veggie tacos, asked several times if they contained peanuts, but went into anaphylactic shock as the tacos had mole sauce, which does contain peanuts. Belinda Vaca, Sergio's mother, has become an advocate for those with food allergies.

I would ask you to join me today in either wearing teal (the color for supporting those with food allergies) or in burning a candle, both in memory of Sergio Lopez and in support of his mother, Belinda Vaca.

Thank you.

Three's a Crowd?

Balancing Between a Research Allergist and a Local Allergist

Dr. Li does not replace your local allergist and, in fact, on her website under the FAQs, she outlines why she likes to work with local physicians and why they will need to do your blood work. Still, almost from the beginning, I have struggled to decide what issues are a local allergist issue and what are ones for Dr. Li.

An example that worked well

In March, James had hives for about three weeks. When they first began, we treated them ourselves and thought I would mention them to Dr. Li during our regular consult. Hives are not unusual for James.

As the week progressed and they were not under control, it became obvious that they worsened during bath and shower (likely from the hot water). I contacted Dr. Li by e-mail to see if we could eliminate one to reduce his water time. She responded quickly and told us to stop his bath until further notice.

By the beginning of the next week, we still didn't have his hives under control, so I e-mailed his allergist for advice on a protocol to help control the hives. It took a couple of weeks and a few e-mails to get a protocol to begin to work. The hives were improved but he still had daily breakthrough hives. 

During that time, we also had our regular phone consult with Dr. Li. She adjusted her protocol as well. Two days after her changes, the hives stopped and I started reducing his western medicines. It took about a week to return to his previous levels and, although he continues to have mild hives occasionally, for the most part, the issue is resolved.

An example I'm less comfortable with

Dr. Li had casually mentioned mast cells to me a couple times (note to self: Dr. Li doesn't casually mention. If she says something, it is not in passing.). After the second time, I e-mailed James's local allergist asking if Mast Cell Activation Syndrome* was a possibility for James. And he replied yes, but he also sees people that it could be a possibility for that don't have it. So, we agreed to wait until James already needed blood work and run a tryptase* test.

Which we did and the results were normal. And now Dr. Li says not so casually that she is concerned about his mast cells and she wants him tested, but she wants a Prostglandin D2* test. And this puts me in the somewhat awkward position of returning to our local allergist, 'Thanks for the first test. Yes, I know it was normal. Hmm. I would really like this second test, supposed to be better. I hear. Carry on."

This is not a matter of not trusting James's local allergist, because I do, this is a matter of Dr. Li having a more complete picture of James's health. Although we don't talk long, we have had ten consults between October and now (nine planned and one in between). I have attempted to document for her each symptom and improvement. His local allergist has had one consult and a handful of e-mails.

I should add that our local allergist is really supportive of our seeing Dr. Li and told us she was "brilliant." So, this is more about communication and using each of their time and resources wisely.

Have you had any issues balancing doctors? How do you handle it?

*  Definitions available on the Glossary page

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 I Almost Never Go Grocery Shopping

Buy Local, Get Them to Deliver

We have always tried to eat local foods, belonging to various CSAs over the years, going to the Farmer's Market, joining with a friend to buy meat. But, James's diagnosis turned our efforts from a "try to" to more of a mission. The problem for us has always been the hassle. We live less than centrally located, CSA pick-ups were usually at least half an hour away and on weekends. Ditto the Farmer Markets. They were something that we started off doing with enthusiasm, then dragged ourselves to, and then stopped altogether.

I should be clear, there's a whole continuum of healthy eating. I would say we fall somewhere in the middle. Our meals are pretty much local, organic and meet my standard of healthy (our cheese is not organic or local. There are some other ingredients if you went through our pantry for sure). James picks his snacks (within reason) and eats like a normal 12 year old (junk). Like most kids, if he over does it, he suffers the consequences. He also loves fruit (and sometimes eats too much and suffers the consequences) so not all his snacks are junk, but I don't want to paint an inaccurate picture.

Primal Pastures

This is a local (to me) farm that raises free-range, pastured raised, grass-fed and finished animals (their stock varies chickens, lambs, pork, and beef). They often have various events at their farm ranging from kid's camps to chicken processing. I will be honest that I have never attended one because except for the chicken processing (little known fact about me: at five, I was in charge of pulling feathers out of dead turkeys with my sister. I will never be processing chickens) involve food. They offer FedEx shipping throughout Southern California and farm pickup in Temecula.

I will be honest, I find their prices shockingly high, especially if you are accustomed to shopping for conventional meat. So, we buy whole (or half) animals from them. Be warned - they give you every part of the animal if you do this. I have become a much more adventurous cook since doing this. Just this last week, I used half a pig's head and one pig's foot to make soup stock. It was actually really good stock and the dogs were happy.

Farm Fresh To You

(If you decide to try Farm Fresh to You, we will both get a credit if you use the above link. Thank you)

USE CODE: HZLL5689

It's somewhat debatable how "local" this is. I'm not getting any carbon footprint bonus points. This is an organic farms in the Central and Imperial Valley of California. It's hard to tell their entire delivery area as they have you enter your zip code to tell if they deliver. However, my guess would be a large portion of California. When I searched, I saw Bay Area, Los Angeles, San Diego, Ventura, and Orange counties. Since I am none of those, I would guess many areas in between.

There's many things I like about this service over other CSA's I've tried, top of the list of course is the delivery. Beyond that is the ability to customize, since James has OAS, I can eliminate the things he is allergic to and keep them on my "not to deliver" list. That way I know, even if I forget to customize, those items won't be delivered. But, each week I can, and usually do, customize what I get each week. So, we get a small mixed fruit and veggie box delivered each week ($25) with pastured raised eggs ($8) added on. I can then add and subtract, getting rid of what we won't eat and adding what we will. Finally, they offer things a traditional CSA would not (although you can get their traditional CSA box and not add these items if you wish) like fair trade bananas. One thing we really missed in a traditional CSA was a variety of fruit.

Amazon

We buy a ton of food from Amazon: Sunbutter in 5 lb tubs, Let's Do ... Organic Tapioca Starch, GF Harvest Organic Oats, Glutino GF Toaster Pastries, Betty Crocker GF Cake Mix, Edward and Sons Trading Company Coconut, Annie's Microwaveable GF Mac and Cheese and more, all on subscribe and save.

We have Prime, so we get "free," shipping, even on Sundays, which never fails to confuse me. I think this is a carbon footprint draw. I would have to drive to multiple stores to get all these different items. This way, they are all delivery once a month to my door, stress free.


What It Leaves

Mostly, this leaves us to buy dairy, some snacks, some dry goods, and cleaning supplies. And this is where Costco and Sam's come in. Coscto was recently named the largest organic grocer and they do have some things we simply can't get elsewhere, perhaps the most important is reasonably priced gluten, tree nut, peanut free bread. We got a Sam's membership during on of their Groupon deals and kept it after realizing that they had large bags of Namaste Flour at a decent price.

Mostly, Darren does the shopping for me at both of these stores. I have to be honest that I find them soul sucking.

New Research, New Hope Part 4 #FARECon

Rapid Suppression of Food Allergy by Dr. Finkelman

His Talk

He would like to use a rapid desensitization, a process which is currently most often used in patients who are allergic to a medication they need for a treatment, for food allergies. The idea behind rapid desensitization is that the patients are injected with increasing doses of the allergen every 30-60 minutes, starting with a dose that is too small to cause a reaction. In the case mentioned above (of a drug desensitization), the tolerance is temporary and the process can also be complicated by reactions, mild to severe.

Dr. Finkelman would like to develop an anti-IgE or an anti-FcεRIα antibody useful for rapid, permanent desensitization to all antigens. This would be a similar drug to  Xolair in function but he wants to improve on Xolair in the following ways: Xolair is slow acting, expensive, and does not work well in patients with high IgEs.

His lab began by injecting mice with an anti-mouse FcεRIα monoconol antibody (mAB). This resulted in a decrease in body temperature for the mice, which is an indication in mice of anaphlyaxsis. He then did rapid desensitization with the anti-mouse  FcεRIα mAB and was able to prolong sensitization to the anti-mouse FcεRIα mAB for 12 days after the initial rapid desensitization. 

The next step was to see if desensitizing mice using anti-mouse FcεRIα mAB would also result in a desensitization of any other allergens. So, they treated egg-allergic mice with the rapid desensitization method and did a food challenge and the mice were protected from their allergen. 

Dr. Finkelman's goal is to completely and safely suppress IgE mediated disease in under 24 hours.

He has five steps he says he needs to accomplish to meet that goal:

1. An anti-human FcεRIα mAB

2. Mice that have human mast cells or human FcεRIα on mouse mast cells

3. A food allergy model in mice that have human FcεRIα 

4. More rapid removal of IgE from mast cells

5. Back-up safety measures

They have already met steps one, two and four with trials using human FcεRIα on mouse mast cells and the  anti-human FcεRIα mAB. During these trials, they have been able to complete desensitization in less than 24 hours that lasts six days, but because of the expense of the antibody, they haven't had any longer trials.

They are still working on step three, making a food allergy model mouse. They do have a mouse currently that generate human mast cells, about 200 times the normal amount for a mouse, and human IgE. These would be a mouse equivalent for a human with mastocytosis.

In these mice, they have been able to achieve partial success with rapid desensitization. During the challenge portion, the mice have been desensitized still get sick, however they do not go into anaphylaxsis.

Dr. Finkelman said they are continuing to work on step five as well, trying a drug cocktail in addition to the anti-human FcεRIα mAB. With the mastocytosis mice, however, they continued to get sick, if not anaphylactic, so this is a portion they are still working on.

When the mouse studies are finished, they will need to test for safety and efficacy in monkeys prior to beginning a human trial.

During the question portion of the presentation, Dr. Finkelman was asked the dangers of removing nearly all of the IgE from the human immune system. His response was that this is something that is already been done, with Xolair patients, and in the Western world, as the risk from parasites was low, he did not believe it was a concern.

My Thoughts

When Dr. Finkelman said his goal was to suppress IgE-mediate diseases in 24 hours, my heart soared. How could it not? The path we are taking is years and here is someone, apparently not insane, who thinks that one day he will be able to travel the same path in 24 hours.

The thoughtfulness with which he laid out his research, he covered different variations, safety concerns, and went through step by step, impressed me.

That said, I think this may, one day, be an excellent choice for those most extreme cases of allergic conditions. Perhaps I am overly cautious of side effects, but as we have seen with Xolair, side effects continue to be found after the drug is approved. Xolair is amazing for those who need it, but not to be undertaken lightly. I feel the same will be true for this future treatment.

Secondly, I do wonder at the blasé response to the question of the IgE removal. IgE is not a vestigial organ like the appendix. It is true that we have few parasites in the Western world, however, people travel. 

For me, this treatment really boils down to need. If James had no other options and some allergic illnesses are that severe, it would sound amazing. With other options available, it sounds more like using a sledgehammer to kill a gnat.

New Research, New Hope Part 3 #FARECon

Dr. Carrie Nagler and the Microbiome

Some Background Information

Gut Check: Exploring your Microbiome from Coursera.org. 

I took this course earlier this year at the recommendation of someone from the CHA FB group . It is now available to take at your own pace and I highly recommend it if you are interested in health. It did not focus only on allergies. One personal caveat - I felt like, at times, it glorified a primitive lifestyle, a modern take on the "noble savage." I have my own reservations about balance between modern life and health, but I do love my indoor plumbing.

The Missing Microbe (affiliate link)

I myself have not read this book, but have had it recommended from multiple sources so it has risen on my rather long to read pile. Dr. Nagler recommended it in her lecture and The Gut Check Course I recommended above also recommended it.

Dr. Nagler's Talk

She is currently working with mouse models. When they give antibiotics, not only are microbiotics eliminated, but the peanut IgE rises. So, this leads them to the question: what microbes are protecting the mice or keeping the IgE low?

In the lab, the make germ free mice and chose two broad groups of microbiotics to test: Bacteroides, which are associated with digested food, and Clostridia, which is associated with the epithelial surface. They have found that Clostridia protects against the allergic response.

But how? And how can they be used?

What they have found is that Clostridia makes the cytokine IL-22, which plays a role in regulating the epithelium. The epithelium makes a protective barrier and IL-22 regulates production of mucous, the ability of the epithelium to proliferate, and the natural antibiotics made by the body help to protect the epithelium. Basically, it helps control intestinal permeability.

So, they gave an oral food challenge to three different groups of mice: one untreated, one treated with antibiotics, one treated with antibiotics and with IL-22, and one treated with antibiotics and Clostridia. The mice treated with antibiotics had higher than normal levels of peanuts allergen in their bloodstream after a food challenge. Those levels continued to rise. But, those who were treated with IL-22 or Clostridia had the allergen blocked from their bloodstream.

She has been collaborating with a university in Italy on a study on cow's milk allergic children, both identifying if they have a different microbiome from non-allergic children (they do) and developing a formula to help them gain tolerance. When the children who used the tolerance inducing formula had their microbiome compared to those who did not, those who gained tolerance had also gained Clostridia in their microbiome.

The next step is a pre-clinical model, taking fecal material from healthy children and cow's milk allergic children and put them into germ free mice, sensitize them with cow's milk, and then introduce different candidate drugs. They have three possible drugs they will try: a Clostridia based live biotherapeutics (which is already approved for IBD), identify and test pre-biotic fibers to expand butyrate producing Clostridia in vivo, and encapsulate butyrate in nano-formulations for targeted delivery to different sites within the gut.

Questions She Answered

1. There is no probiotic on the market that has been tested for food allergies now. They are mostly based on Lactobacillus (yogurt). The best thing you can do now for your microbiome is to eat a high fiber diet.

2. Try to limit your antibiotic use: get cultures before prescriptions, don't use antibiotic soap, try to eat antibiotic free food, etc.

3. Fecal transplants are not recommended for food allergies. They have not been proven safe for this condition for a variety of reasons.

My Thoughts

Having a child who has had (but has been better since starting with Dr. Li) lifelong digestive problems, I had a personal interest in Dr. Nagler's talk. James is not currently taking any probiotics (see the answer #1 under "Questions She Answered," which was also similar to the information I learned in the Gut Check class). If he needed to take antibiotics, I would have him take probiotics for the course and for some time after.

I plan to follow this study (as well as the work of Mimi Tang) and feel very fortunate I was able to hear her speak. I will reiterate, considering the audience, I'm disappointed that none of the speakers presented currently available treatment options.

New Research, New Hope Part 2 #FAREcon

A Peanut Vaccine

Notes from Dr. Baker's Presentation 

Vaccines produce a Th2 response, through their adjuvant, usually alum. Alum is an aluminum powder that's inflammatory. It wakes up the immune system and tells it to respond. The inflammation and soreness at the injection site is caused by alum.

The concern is that, since alum produces a Th2 response, could it cause allergies. He said he did not think so however, a different type of adjuvant that produced other types of T-cell responses, ones turn off the Th2 (allergic) response are needed.

One of the things they are doing in his lab is producing other kinds of adjuvants, one that produces a Th17 response. Th17 regulates or turns off the allergic response. Eventually, they want to make a vaccine for food allergies. Their vaccine involves nano scale oil droplets. They put the allergen or vaccine in the oil droplets and then put them on the surface of the nasal mucosa. The droplets penetrate the surface and produce an immune response. Using a green marker, they can see that the vaccine penetrates the nose and go throughout lymph nodes as well.

His work so far has been with the RSV vaccine. It particularly has had problems when used with alum because the alum can cause an allergic response to the virus. Some died in the 1960s when they got infected, because the vaccine induced an allergic response to the virus.

His question was: can they produce a more protective immune response and turn off the allergic response using the nano emulsion vaccine. In mouse trials, they had three group exposed to the RSV virus: with the nano-emulsion vaccine, a standard alum adjuvant, and no vaccine. Animals given the alum vaccine had eosiniphils (associated with allergies) in their blood, but no neutrophils or macrophils, The nano-emulsion group had no eosiniphils but had monocytes associated with a Th17 reaction, showing a priming of the regulatory reaction and a driving away from an allergic reaction.

Now they are doing work in mice to try to immunize food allergic mice with the allergic food in the nano-emulsion.

A Little History

A "peanut vaccine" has been in trial before by Dr. Wood et al. It was administered rectally and was not a success. 20% of the subjects had severe allergic reactions despite the vaccine.

Dr. Li et al are also investigating a peanut vaccine. It looks promising but the trials are also in mice currently, not people.

There may be other trials I am unaware of.

My Thoughts

People think that fear of vaccines is a modern issue. However, there has been a fear of vaccines since Edward Jenner first inoculated against smallpox. I don't really want to make this a general vaccine issue, but I will say regarding a food allergy vaccine, I understand the fear of those first parents who had their children vaccinated. 'You want to take something that could kill my child, and put it directly into my child.'

It relates very directly to my fear of roller coasters. In a very general way, I understand the science. I can even explain some of the processes. In the case of the roller coaster, given enough time, I could likely solve some of the equations to prove I won't die.

But, at a gut level, it still seems to be magic.