Friday, October 7, 2016

Airport Mystery Reaction

At this point, maybe I should stop explaining that this will be a long post, because that's pretty much the norm around here. ;)

We had a very unexpected incident when we tried to make our annual trip to see Dr. Xiu-Min Li in New York. I recounted our tale on a support group page, but I also want to share it, here, in the hopes that it might help someone. 

Well, we didn't make it to New York on Tuesday, as we had a little incident at the Dallas airport. I never want people to worry, so I want to point out that my daughter is totally fine, now, other than very disappointed about not completing the trip to NY.
Our itinerary was to fly SAT (San Antonio) -> DAL (Dallas) -> LGA (NY). The SAT->DAL leg is 1 hour and the DAL->LGA leg is 3 1/2 hours. Last year, our trip with the same itinerary was totally fine, with no issues.
Anyway, given DD's multiple food allergies, I always pack all her foods and she doesn't eat anything "outside". I did give her some apple juice from the beverage service (not my best idea, ever) on the DAL flight, but it was at least an hour before the problem started, so I don't think it was related.
I'll try to recount the events with my [internal monologue] in brackets.
So, we're sitting at the gate, waiting to board the DAL -> LGA flight, which was 30 minutes delayed. We had already been at the airport for about an hour, hanging out. Then, I see her touch her throat and make a sound and she said, "Mommy, my throat STINGS"...
[Oh, NO, not now, what could it be? Oh, no, oh no, keep it together, stay calm...]
It's NOT the kind of thing we want to hear from our kids, right?! The thing is, though, she often says her throat is "warm" or "dry" or "hot" when she is thirsty. I wish she had better terms for it, as they are tortuous to hear, but she has been saying that all her life. This time, though, she said it stung and I said let's go get a drink.
[Should I be taking her to get a drink? Oh I hope she is just thirsty, we have 15-20 minutes before we're supposed to board this 3.5-hour flight...]
I bought her a water and we went to the Family bathroom (where we could be alone). She took a sip and I asked if the water helped. She said yes, but then said, hmm, no, give me more. She tried like 6-7 sips but it didn't stop the feeling. I decide to give her some albuterol, since she hadn't eaten in over an hour.
[Albuterol? Do you really think you should be doing this, first? Ugh, well she hasn't eaten anything in over an hour, but where is this coming from? She said the feeling is different than normal. What would you tell other people to do? Oh, let's hope this works, but am I doing the right thing??]
I gave her 2 puffs of ProAir HFA, but the first one came out half-heartedly, since we hadn't used it in so long and I don't think I shook the canister in my haste. After the ProAir, we waited a minute and she said, "OK, I think that might have helped." So, I'm like ok, good, though still nervous.
[OK, she thinks she feels better...Try not to panic, let's see how it goes...Oh, dear, the flight is boarding in like 15 minutes...]
We went back to the waiting area, and she sat down, but then said, "No, I feel it again" [NO!] and she emphasized a wheezing sound (sometimes she kind of "makes" a wheezy sound on purpose to show when she feels throat/breathing discomfort - she is not a traditional, out-of-breath wheezer) and I said what was that sound and she said "my breathing" and she made this fist tightening hand motion when describing the pain of the air going down her throat and she said something about "tight" and "pain" (she could talk plainly, so it wasn't too dramatic, but still)...
[I need to do something, NOW, and get help...]
I asked the gate agent if there was a place for medical help and Morgan tugged me and said, "Mommy, I don't feel well, I need to sit down"...[Oh, that is IT, I just have to give her the EpiPen, there's no way I can take the chance. I don't know what in the world is causing this, but she needs something now and the albuterol isn't taking care of it.]
I gave her the EpiPen right next to the gate agent and she put down her jacket so I could lay Morgan on the floor. [Ugh! The floooooor! It's so dirty! Thank you gate agent!]
Not even 10 seconds later, my daughter said, "Oh, that's MUCH better!" [OH THANK GOODNESS! OH MY BABY, MY BABY!] and I was talking her through it and she said her heart was beating fast and I told her that was the medicine, etc. I kept asking about her breathing and she said the medicine helped and it was better.
The paramedics came after a few minutes and it was a bit of a blur with Southwest employees asking for information, and answering the paramedics, etc. They put her on a stretcher and took her to an in-airport triage area. DD was shaken up, but handling things so well. The paramedic recommended taking her to the hospital for observation for a biphasic reaction (poor DD's eyes welled up with tears at the mention of "hospital" but I told her I'd stay right with her the whole time) and meanwhile they checked her vitals, which were all good.
[Oh, we've missed our flight...She didn't eat anything and this was probably asthma, but we should observe to be safe. Oh, my poor family, to have to get a text about this, even though she is doing just fine...She doesn't want to go to the hospital, but we need to be sure everything's OK...]
She was doing so well that I half-thought about not going to the hospital, but then I thought, no, she needs monitoring since I have no idea what happened or why. The paramedic was so funny because he told me he was glad I was being a sensible, logical adult by taking her to the hospital, but then he was telling me that he had a shellfish allergy and "needed to get himself a set of those EpiPens"...I was like, "Yes, you need to carry 2 doses at all times!"
I will say that I think it took a bit long for the ambulance to arrive for transport, but that might have been because she was reported as being alert, responsive, etc. They took us to the Children's Hospital and they put us in the "Asthma Wing" or something like that, which has chairs for breathing treatments. I'm guessing they also didn't think it was food-related.
It took them like 2 hours to bring her some oral corticosteroids and Benadryl, and the whole time she was fine, though she did say at one point that she felt the "feeling" again, but in a different way. It was hard for her to describe, but it wasn't very bothersome and nothing came of it.
Throughout the ordeal, Southwest Airlines customer service was so helpful. They gave me a number to call and the woman who helped me worked on getting everything arranged. At one point, I was considering continuing the trip in the morning and staying at a hotel, but, um, NO FOOD (and no luggage)! As most of you can plainly understand, I couldn't just get food for her any random place. There was a space of time where I had called for a cab from the hospital and I had to decide - airport to go home, or hotel to try to carry on...At the last second, when the cab arrived, I asked him to take us to the airport. After I came to my senses, I got us on standby for a 7:15pm flight home, with a 10pm fallback reservation.
[Throughout this ordeal, I had my dear friend was talking me through, checking on us, etc.]
By a miracle, we got on the 7:15pm flight. We were all the way in the back of the plane, but were SO grateful to be on it. We had no time, supplies, or energy to wipe anything down and I just put the novelty socks I carry, over the armrest. Then, a SWA employee comes on the plane and botches my daughter's name, asking for us to light up our call light. She comes to us at the back of the plane and says there is an irate passenger in the gate area saying that we somehow got ahead of her on the standby list. I almost broke down and DD's eyes teared up and mine started to well up and I pulled the tears back in and asked if she might explain that we had just come from the hospital and were trying to get home, etc. She said perhaps, but we'd have to deplane to sort out the issue. The other flight attendants on the flight were perplexed when we got to the front and were asking the lady why she had us get up when there were 2-3 empty seats on the plane. Apparently, the other staff member did her count wrong and we ended up being allowed back to our seat. Phew!
The flight attendants on our flight were so sweet to us. Poor DD was pale and exhausted, as the meds all kicked in. (Hospital had given her oral steroids and Benadryl...I refused Zantac and in hindsight probably should have refused the Benadryl...she had zero skin involvement.) By the way, on this flight, they asked if anyone had nuts from a previous flight, to not open them (they usually don't make that announcement anymore and just don't serve peanuts)...Toward the end of the flight, DD was asleep sideways in my lap and they asked if we'd like to deplane, first, and I was grateful, as I wasn't even sure I could wake her to have her walk out of the plane. They announced there was a "little one not feeling well" and asked everyone to stay put, etc., and nobody made a peep or grumble. I was grateful to them, as I know how badly EVERYONE wants to get off a plane when we land, so I felt bad inconveniencing everyone, but needed to get DD home, ASAP. When we arrived, they had a wheelchair for her and I pushed her to the baggage area. Ah, yes, our baggage. See, our baggage had continued on to LGA, so I had to asked for it to be returned to SAT.
DH was there to pick us up and we were so glad to be home! He brought a bag of safe snacks and drinks. He also went to pick up my luggage the next afternoon. I saw they put "RUSH" tags on it and we got it back in less than 24 hours! I called Southwest customer service to see if I could get the unused DAL-LGA portions of our travel refunded and they said they were giving us the WHOLE thing back and I could call and re-book that same itinerary (SAT-DAL-LGA) for free, when we were ready to return! Amazing!
Though it was not what we'd choose for our day or our trip experience, I think so many things worked in our favor. The 30-minute flight delay, which at first seemed annoying, turned out to be what saved us from having this happen on the plane, possibly mid-takeoff/flight. Also, my daughter felt near-immediate relief of her symptoms from the epinephrine, so I feel that gives her a "positive" experience with it, since she felt the results of treatment and it made her feel better. She knows she doesn't have to fear it. There were so many points at which we were lucky.
I *STILL* don't know what caused the asthma/throat issue, but I think the main takeaway lesson for me was that I may not always know WHY something is happening, but I just have to deal with what IS happening in front of me. We were in an airport, so I didn't have the comfort or luxury of a "wait and see" approach and she seemed to be getting worse, not better, and we know time is of the essence.
My daughter is very eager to get back and try the trip, again, but we will see how it all goes and are taking things day-by-day, for now. She slept a good 12 hours last night, which is more than she usually sleeps, so I think she is catching up and she has been fine and dandy ever since, so that bizarre incident will remain a mystery.

Since that incident, she has been completely fine and I find the whole thing to have been a complete fluke. I don't think I will ever know what happened, though some have wondered if the nearby Starbucks kiosk might have played a part, with its steamed milk. She has never had that kind of issue, before, but anything is possible. This happened in July, and we're now in October, and it all seems like a strange dream. I'm happy to say she is doing very well and doesn't seem to be having any heightened responses to anything, so I'm hoping this was just a one-off, random occurrence. 

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.