Friday, November 18, 2016

Flax is Back!

Bread made with "flax eggs"! Hooray!

January will mark 3 years that we have been in treatment with Dr. Xiu-Min Li. We have been so lucky to see the continued downward trending of her IgE levels. My daughter is no longer on daily antihistamines, she rarely gets sick and when she does, the illness is short-lived, and almost her entire body is eczema-free, aside from the tops of her ankles, which are a bit of an unsolved mystery. (Actually, part of the mystery isn't so mysterious - I am not being very compliant about the eczema creams that Dr. Li has prescribed, so that is definitely a factor.) Aside from that area, we have worked hard to stay at around 99% compliance with capsules, baths and after-bath creams. In the past couple of months, I'd say we might have even slipped into 95% compliance territory, because we have skipped a few baths, here and there. Even so, I feel we have been very good in the compliance department. It has not been easy, though. It's a lot to manage, but worth the effort.

We recently had a couple of big "wins" that I'd like to share. If you'll notice, the "currently avoiding" list on my banner is missing one food - flax! My daughter's flaxseed allergy has been one of the more restrictive items on her list. It's often used in a lot of allergy-friendly products, or on shared equipment with said products. Calling companies about flax cross-contact is tiresome and sometimes fruitless, since they don't always have that kind of information readily available. 

I've written previously about my daughter's reaction to flaxseed when she was a few weeks shy of turning 2. It started quickly, but was protracted and escalated as the night went on. (I actually wrote about it in a few posts, as it was very traumatizing for me - even more so after the fact, when I realized how bad it was without me being fully aware of the situation.) She was undiagnosed, at the time, but later her IgE test came back at 28. She also experienced intermittent rashes from foods with cross-contact with flaxseed.

This mini-chart shows her flax IgE over time: (below the line is after treatment began...) 
Her IgE had already dropped off quite a bit before treatment started, and it continued to drop a little during treatment. I grew confused and frustrated a bit, because I felt like it just didn't make sense. A part of me was terrified of flax, but another part really felt like she was "ready" to tolerate it, to some degree, but her IgE would not go below 2. She had a skin test for it back in May 2015, and the wheal was as big as the histamine control. Dr. Li reminded me that the skin has a longer memory, but the allergist didn't recommend doing a challenge with such a positive skin result. Around that time, her IgE was 2.76. 
All 3 of these were considered "positives"
When we tested in July, it only moved down to 2.20. I had this feeling that it was just "stuck" and wasn't going to go down any further. Dr. Li had previously explained that IgE may never go back to "before they were allergic" or "when they were a newborn" etc., and I thought to myself that maybe this was "as low as it gets" for flax.

Initially, I asked Dr. Li for her opinion on doing a challenge for a "trace" amount of flax. I really didn't care about eating flax straight. I just wanted all those many allergy-friendly products that are in cross-contact with flax. She said we could talk to our allergist about doing a challenge with a small amount of flax. I recently switched allergists and when she looked over my daughter's history, she felt that even with the reaction from when she was 2, she had a good chance of passing a full challenge. We split the difference, and decided to go with what came out to about a 1/2 serving. This was in the form of me using a "flax egg" (3 T. ground flaxseed meal) in a dozen muffins.

It's hard to describe, but I had these simultaneous feelings that she was ready to try flax, again, yet utterly terrified to the point of feeling ill. I felt like part of me knew that everything would be OK, but the other part was so scared. Anxiety isn't a very logical friend.

We arrived at the appointment and the nurse said they were going to do a skin test and I got nervous. The last skin test wasn't so great, but this time it was being done with a muffin that contained flax and not straight flaxseed. Her histamine result was HUGE! Even her saline control had a tiny wheal. On the other arm that was poked with the flax muffin, there was barely a blip. Phew!

The process took quite a while, with larger and larger pieces being eaten over the course of about 2 1/2 hours. I watched her like a hawk. My insides flip-flopped a thousand times, but she was fine. *I* actually sprouted a small hive on my cheek. Oh, the irony!

She drew a picture of her "Minecraft alter ego" looking at a muffin, saying, "Yum!" They declared it a success!

We planned to continue at this amount and then gradually move up to a full serving. The purpose is not to desensitize, but to slowly reintroduce the food to the body, since it hasn't "seen" it in about 6 years. We just want to continue "low and slow" and give her body a gradual reintroduction to her long lost flax. I think both doctors feel she would likely pass a full challenge, but I'm good with taking it nice and slow. 

I've relied heavily on IgE for clues, in the past, and still look at the values, since it's all I have to look at, but more and more I realize that IgE just doesn't convey the entire immunological picture of what's happening at the cellular level. I'm hoping this is a sign that all this time in treatment has produced changes in other biomarkers that IgE isn't displaying.

The second "win" is that we also introduced sunflower seeds into her diet without incident! She doesn't have a reaction history for it, but it was one of those marked "positive, so avoid it" and it finally went down to <0.10. Her skin test from 5/2015 also didn't come out negative, but she ate them just fine. I did toast them, so that might have helped, some, too. We also had another year of treatment under our belts. 

Even though these aren't common, "major" allergens, they are a huge deal for us and we are so happy to have made this progress.  I am still just amazed that she is able to eat anything with flax in it. I was just hoping not to worry about cross-contact. It's hard to really feel like I can "trust" any food, completely, but we move forward with cautious optimism!

Wednesday, October 26, 2016

Auvi-Q Epinephrine Auto-injector to Return in Early 2017!

Exciting news is making the rounds! Auvi-Q is slated to make its much-awaited return in early 2017!

I have loved this device ever since I first heard about it. I love the size, I love that it talks you through the process, and I also love that it was invented by twins Eric and Evan Edwards, who are both at-risk for anaphylaxis.

Given that this device was recalled from the market, we all want assurances that any problems have been solved. Rights to the device have been returned by Sanofi to kaléo (formerly Intelliject). Eric Edwards explained, "We have created an intelligent, high tech, 100 percent automated robotic production line with over 100 quality checks on each and every Auvi-Q device to help insure that streamlined and consistent production process."

Pricing has not been set, as of yet, and is definitely a top concern, especially in light of recent events. The makers of Auvi-Q are well aware of the need to provide affordable access to patients.

To keep up with the latest on Auvi-Q's return, you can visit and fill out their form to sign up for updates.

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.