Tuesday, September 13, 2016

Seeing Dr. Xiu-Min Li in New York - 30-Month Progress Report

Hello! I feel like I have been quiet for so long! I'll spare you all my excuses and get down to business. If you haven't read it, please read my prior post about our 18-month progress.

Click here for an information sheet published by Mt. Sinai, about Dr. Li's work. 

In July, we had my daughter's allergy testing done. I didn't really have much to report back on, before that, because treatment just goes along, one day at a time, and it has been uneventful, in a good way. We haven't had any negative reactions to the treatment items, other than a few sparse pink spots during some herbal baths, that resolve quickly.

Last time we did my daughter's labs, we ended up stuck with a huge bill, because I had been misinformed by my insurance company about when I was allowed to do them, again. I appealed and lost and it was very frustrating. This time, I decided to be even more careful and I also cut back on the number of items I tested. The following is a chart of some of the highlights from our lab results.

(click to enlarge)
These are updated values, showing the accumulated drops in IgE values for the items listed, for the treatment period. Egg White is moving along, nicely, and the ovalbumin and ovomucoid values are dropping well, too. Milk, oh, milk...Milk is the stubborn one of the bunch, but it is interesting to see how much the whey-related proteins have dropped. Of course, I wish it was the casein-related/heat stable proteins that would drop as much, but there's still time. I have always known that milk would be the last one conquered. "Whole" peanut is moving well, but I was really impressed with the drop in Ara h 2. It is down 84%, to "only" (it's all relative) 4.98! It was 31.80 at its highest. I am really hopeful about peanut's progress. Also, sunflower seed finally moved into the "negative" <0.10 range!

We've had an inconclusive history with sunflower, and I've never known it to cause anaphylaxis, but it's really good to see it go <0.10. After discussions with Dr. Li and our new allergist, we are looking at pursuing a challenge. The allergist believes the risk level is low enough to do it at home. The other food I am eager to challenge is flaxseed. We are not quite negative, there, but it has been hanging out in the 2-ish range for a while, now. When it was first tested, years back, it was 28. I feel that it has seen a huge drop, and our allergist agrees, but we will be doing that challenge, officially, in the office.

Almond has also dropped quite a bit. We don't have any history for almond, because she has never had it. I also tested Pecan Nut, which came back <0.10 and last time around we saw that Walnut came back <0.35. We are just leaving tree nuts aside for the time being, but they are on the list to consider for challenges, down the road.

I am just so excited to even be in the planning stages for challenges! Sunflower will hopefully be a gentle start, since we don't have a history of anaphylaxis. Doing flax will test my nerves more, given my daughter's history with it. We are also supposed to do codfish, but there really isn't an eagerness, there, to get that one done. Her IgE to codfish has always been negative, but it just hasn't made it up the priority list.

Tuna was another food that has always tested negative, but I had never tried. A few months back, I finally tried it and it was a success, though it's not one of my daughter's favorite foods. We've spent so long, with such a restricted food list and I feel like I really need to get moving on introducing/challenging foods, now, or it will take us forever!

On the overall immune system front, I still see improvement. A cold made the rounds, and my daughter had it for a scant 2 days, and was over it. I, however, had it for a week, then thought I was better, and then it landed on me, again, and I am just coming out of it.

I really feel like I can see the light at the end of the tunnel. I can't quite tell how long the tunnel is, or how long each train's track will be, but I can feel change happening. This treatment is involved and complex, but after a while, it becomes second nature. I see real change happening in my daughter and I can't wait to take each restriction off of her, one by one, and work toward getting her to where so many people wake up each morning, without a second thought.

Hopefully, I'll have some more good reports to bring you, soon! Wish us luck!

Sunday, April 24, 2016

No, We're Not All Cured, Yet!



There have been so many advances in food allergy research, and there are treatment options that will be FDA approved over the next couple of years, for the treatment of peanut allergy. This is amazing, awesome, and hope-inspiring.

I am excited at the prospect of these new treatment options, for those who don't currently have access to treatment, but I can't help but also have a nervous feeling about the reaction from the general public and the media. I am dreading seeing more headlines like, "PEANUT ALLERGIES CURED!" and other such sweeping declarations. They have already been floating around and we haven't even reached FDA approval, yet. To be sure, these will be celebratory events, but much of the past media reporting on food allergy advances has been hyperbolic and lacking in nuanced details. I imagine some people thinking to themselves, "Phew! Glad that whole mess is over!" and wanting to get right back to eating peanuts in every conceivable location. I feel that efforts to gain accommodations will be met with, "Why don't you just wear that patch/take that pill, etc.?" as if it's that simple. The following are some of the things to consider about treatment for food allergies.

It's not just peanuts!

These initial treatments slated for approval are only focused on peanut allergies. Approximately 30% of those who have food allergies have multiple food allergies. For those of us dealing with multiple food allergies, peanuts are sometimes the least of our concern. Dropping peanut from my daughter's allergen list will not really change our lives, as a whole. (Though, of course, it would be great - don't get me wrong!) Dropping milk, however, would change things, dramatically. In 2014, study findings showed that parents reported milk and egg allergies to be harder to manage than peanut. Just think of how many restaurant items are either slathered in butter or smothered in cheese. Some in the food allergy community may choose to wait until more of their most restrictive/severe food allergens can be addressed, either alone or together.

Treatment takes time.

As promising as the many treatment options are, none of them provide magical safety and protection overnight. They all require many months, to several years of treatment time. Currently, since there are no FDA-approved treatments available, patient options are limited to clinical trials and private practice options, neither of which might be locally available. When participating in a trial, the patient is on the trial timeline and could be in the placebo arm and spend a year without actual treatment. Even in "on-demand" private practice, patients cannot always "get in" to see their preferred provider, immediately. There may also be distance barriers involved. Office visits take time and this may mean time away from school, and time away from work for caregivers.

Treatment costs money.

Even when the first treatments gain FDA approval, the pricing of said treatments remains to be seen. Not everyone has "Platinum" insurance, with stellar coverage. It's easy for someone to say, "go cure yourself!" if they aren't the ones footing the bill and going through the potentially-arduous process.

Treatment involves risks.

One of the treatments slated for FDA approval, Aimmune's AR101, involving a proprietary version of oral immunotherapy, carries the risk of side effects including gastrointestinal problems, and dose-related reactions up to and including anaphylaxis. The second treatment, DBV's Viaskin Peanut Patch, comes with the risk of skin irritation at the site of the patch. Aside from the risk of side effects, any treatment comes with the risk that it simply won't work for the particular individual. Everyone has their own unique immunological makeup and no single treatment will work for all.

Please be patient.

The food allergy community will continue its best efforts to educate everyone about recognizing the signs of anaphylaxis, avoiding accidental exposures to allergens, etc. Not everyone will be able to jump into treatment right away. Some, as it is their right to do, would like to wait for what they feel is safest treatment option. They may also choose no treatment, at all, for any number of reasons, and they must continue to be protected, as well.

If you are outside of the food allergy world, please keep looking out for those with food allergies and bear with us, as we deal with this epidemic. Babies are born every day that may still develop food allergies. This isn't going to vanish in a single generation. Science moves more slowly than our patience might wish.

It is never time to give up on being compassionate. There should be no expiration date for people's willingness to accommodate those in need of assistance. We are grateful to those who continue to support us as we make our way to a safer space.

Tuesday, April 5, 2016

First Flight with Food Allergies

In July of 2015...yes, I am WAY behind...we flew to New York for our follow-up consultation with Dr. Xiu-Min Li in her private practice. In Dr. Li's private practice, the amount of time between in-person visits is based on the patient's distance and needs. Typically, the initial appointment is an in-person visit. However, we acted as "guinea pigs" and had an initial consultation via Skype. (Note: Our experiment was evidence that due to the office network and the nature of the practice, our process was not optimal, so it's not an option, anymore.)

So, this was my daughter's first flight! We flew on Southwest Airlines. I have been flying Southwest since I was a child and I love it. We also have a rewards credit card* with them, that allows us to earn points towards free flights. As much as I love Southwest, I did have a moment's hesitation over the fact that they serve peanuts on their flights. However, they grant pre-boarding authorization to those with peanut dust allergies to allow a moment for wiping the area before the other passengers board, and they will switch to a non-peanut snack for all legs of your trip.

Southwest primarily serves the...you guessed it...southwest. There are no direct flights to New York and we had to change planes in Dallas (Love Field). I actually found it comforting to know that our very first flight would be a short one, with only 41 minutes of flying time. I've been flying pretty much my whole life and I enjoy it. I think air travel is amazing and it never gets old for me. Yes, I get sleepy and bored in between flights, but I find getting in a tube and flying thousands of feet in the air nothing short of miraculous. Even though I was definitely nervous about the "great unknown" of flying with my food-allergic daughter, I did my best to focus on the positives. I was so excited to be able to share this experience with my her - to have her see the clouds out the window, see the world looking so tiny down below, to watch the planes take off and land, to watch the luggage get loaded onto the planes...everything!

I should add that being 18 months into treatment with Dr. Li, helped lessen my anxiety. I also reminded myself that this wasn't much different than the times we had visited the children's museums, though it adds a layer of stress being at 30,000 feet with nowhere to go in the event of a reaction. Even so, I felt more at ease than I might have felt pre-treatment.

I explained to my daughter that the airline was nice enough to let us get on the plane a few minutes ahead of everyone else, to give us a chance to clean our seats. She is used to me wiping down the world, so she didn't find that to be too surprising.

 

I packed travel Clorox wipes and a large Ziploc bag, to put my used wipes in, along with any contaminated trash. Aside from wanting to "quarantine" the wipes, I also wanted to contain their strong smell. I also packed napkins to use to dry the areas that I wiped, because we only had a few minutes before the rest of the passengers were coming in and I couldn't wait for air drying time. I had originally planned on using seat covers, but I was traveling solo and it was just too much to carry. I also doubt I would have had enough time to put them on and do the rest of my prep before the other passengers started filing in. All of the flights were completely full, so I had to prep, quickly!

Left image, above: I bought a pair of long novelty socks that I used to cover my daughter's armrests. She thought they were funny and for some reason I felt better about using them over plain white tube socks. I felt like people ended up complimenting the cuteness and saying, "good idea!" rather than looking at me like I was being overly germophobic. (The Nemo-esque neck pillow was an impulse purchase at the airport.)

Middle image, above: One thing I forgot to do on the first flight was bring plastic bag to put our carry-on items in. I wanted something between our stuff and the possibly-peanut-laden floor. In between flights, I bought some water and asked them for a plastic bag and did the same when I bought something else. After I got off each flight, I threw out the used bags.

Right image, above: For travel eating, I bought a couple of insulated food containers - one tall and one short.* In the tall one, I loaded it up with Annie Chun's Sticky White Rice* (which my daughter loves) and I put chicken nuggets in the other container. I also packed disposable covers for the tray tables.

As far as staff accommodations went, I mostly encountered amiable flight staff, though I did get one sigh and eye roll when I handed one of the flight attendants the paperwork. One other flight attendant started handing out peanut packets out of habit and got them to about 6 people before I got his attention and he was apologetic and nobody seemed to make a stink about having their peanuts exchanged for crackers. (That was a bit of an awkward moment, but thankfully nothing came of it.) We sat pretty close to the front of the plane, so I don't know if  there were any grumblings in the rows further back, though I didn't sense any. They did not make a "peanut allergy announcement" but I never saw anyone near us with their own peanuts, nor did I smell any during the flight. We did not take the first flight of the day, but all legs of our flights were still pretty clean.

Overall, the flights went well, both to and from New York, and I was relieved. It was an experience reminiscent of using the EpiPen for the first time, only in the sense that I spent lots of time dreading it, only to find that doing it wasn't dreadful as I had imagined.

We're due to make that trip, again, in a few months, so I figured I better get around to finishing this post! I always try to go into these situations armed with a smile and an obsequious manner, and I hope that the airline staff continue to be as supportive as they have been, in return, in the future.

P.S. I'd like to add a "shout out" to Lianne Mandelbaum, of NoNutTraveler.com for all her hard work in trying to make the skies "friendlier" for those with food allergies! Check out her work and support allergic passenger protection legislation if and when you can. We don't always like to have to get legal, but not everyone has had pleasant encounters and that issue cannot be ignored.

If you have any additional helpful tips, please feel free to leave them in the comments section!

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