The Day After Anaphylaxis

I can’t claim to know what it is like in other homes the day after anaphylaxis. But this is a snippet of what it is like in my home.

The day after an emergency run to the hospital is a strange day because it is such a contrast to the moment a food emergency is happening. When you are facing a severe food allergy reaction, everything happens fast – and must. You must inject epinephrine. You must get 911 on the line. You must get the ER. You must keep a close eye on any emerging or continuing symptoms of anaphylaxis. You can’t forget to record the time everything started happening.  You must keep a second auto-injector nearby.  Everyone’s adrenaline is pumping. And in all this, you must remain calm and focused. There is no time for doubt or waiting around.

Once our son was on his way to the hospital, the exposure needed to be completely cleaned up. In this case, that meant cleaning every surface in our kitchen, completely cleaning two refrigerators, washing pot holders and linens at the sink, and packing up and moving out a whole bunch of cross contaminated vegetables. We did all this after getting home from the ER, which meant it was a very late night for the parents in our house. We also continued to check on our son to make sure that he was staying stable and give him meds throughout the night.  Sleep did not come easily.

By contrast, the day after anaphylaxis at our home moves slowly. It is a strange day – a day in which we are all acutely aware that live an almost normal life. Eating is hard for all us. We look at food and wonder: what will this do to the one we love?  Read the full post »

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Food labeling problems: Bananas that contain shellfish

Food allergy labeling and laws are confusing and widely misunderstood, including by groups that are leaders in the field.  Here’s the latest scary example:

The Food Allergy and Anaphylaxis Network (FAAN) is probably the leading advocacy group for food allergies in the U.S. On their Facebook page yesterday, FAAN posted a link to a report stating that a new preservative made from shellfish (shrimp and crab shells) has been tested and shown to slow ripening of bananas.  Shellfish are one of the 8 top allergens that must be listed, per federal law, if they are contained as an ingredient in a packaged food.  The report contained no information on the effect of such a preservative made from shellfish on allergic individuals, but there is a high potential for a problem because medical reactions are caused by the allergen’s protein shape and not the food itself. This product is not yet on the market.

On FAAN’s post was the header “Reading labels is important because…”  The implication is that such bananas will have a label. Stated emphatically, this is wrong. Bananas are a “raw agricultural commodity” and not a “packaged food” and are therefore NOT covered by the 2006 FALPCA law.  (Other non-covered items include meats, eggs, restaurant foods, cosmetics, etc.) This means no label is required on whole raw foods. And this is aside from the problem that there is a huge gap in the law regarding cross-contamination and the non-regulation of “May Contain” statements.

The U.S. needs new food labeling regulations and needs closer oversight of food modifications. This is a story that deserves more attention and more analysis, so I’m working on two pending legal research projects on this and hope to post more before long. If readers are interested I would be happy to talk further.

When Tracy is Absent

Tracy can’t always be everywhere with Benjamin.  We try hard to take her to everything, but there are a few rare occasions when it’s just not best for her to be present.  For example, Benjamin and I went on a 30 mile bike ride on Sunday.  Tracy can’t run that far beside the bike, and we aren’t up to that distance pulling her in the Burley even though she’s getting good at it.  So she stayed back and was fine, though a bit sad.  Tracy also can’t go in situations that would be unsafe for her.

On Saturday, Benjamin had a great opportunity but it was a bad situation for Tracy. Benjamin’s scout troop is working on the aviation merit badge and a group was meeting at the local airport, where he got to tour the control tower, do a “walk-around” of a plane and see how maintenance is done, and then fly (and help co-pilot!) a small plane. I opted not to stay since there were enough other adults present who had been with him before and knew about the severity of his allergy, and since we are working hard to give him increasing independence (which is a big part of why he has Tracy).  So this was the first time in the last month that Benjamin was somewhere without either Tracy or me present.

When I picked Benjamin up 2 1/2 hours later, he immediately told me in the car how fun flying was– and then he started looked in the car mirror because his mouth looked funny. When I looked also it was clear that he was having a minor reaction, which had just started shortly before I arrived. The best we can piece together, since Benjamin had nothing to eat there, was either that the cockpit headset he wore had nut residue on it or — more likely — that he got just a trace amount of residue from the cell phone that he used to call me to pick him up.  Benjamin carries his own phone for just such a situation, but the scout policy is generally that boys are not supposed to have or use cell phones and so he was respectful of that and used an adult’s phone rather than his own. This was a mistake both by Benjamin and by the adults present — and we were lucky it wasn’t worse, even though it was plainly an honest mistake.  Had I been present, Benjamin not only would not have needed to call — but, if he’d called, I would have insisted on using his own cell phone.  More importantly, had Tracy been there, she could have “checked” the other cell phone (and the cockpit headset, which could have been the problem) for residue. Even with no nuts visible (and there were not), Tracy could have kept him safe.

That night, we made sure to train Tracy on checking cell phones … and continued to think hard about situations where she can or can’t be present. The simple fact is that Benjamin is safer and less likely to have a reaction if Tracy is present; we unintentionally proved that again Saturday. We’re happy and a bit lucky that what happened when Tracy was absent on Saturday didn’t progress to anaphylaxis.

Tracy’s first week of school

Tracy has now been to school with Benjamin for a full week, so I thought should post an update.  (Last week was shorter because of Labor Day.) Overall, Tracy has done great at school and has been very helpful to him.  Tracy accompanies Benjamin on the school bus to and from school and stays with him from class to class, checking things along the way for him to keep him safe. Before school started, when she was getting acclimated to the school building, she alerted to several doorknobs (especially at the entrances of the building) that had nut residue on them. She also alerted to a box of scissors in one room, the underside of a couple of desks (where kids would rest their feet, and thus likely contaminated by residue on shoes), and even the top of one of the desks. Knowing this information has helped us all work on making those kind of places safer for Benjamin so that he doesn’t react from peanut residue somewhere. 

Now that school has started, there are two big things that we know that have been helpful for him – and I’m sure I don’t get all the stories from him.  First, this district allows the students to bring a science textbook home for the year so they don’t have to carry it back and forth. When Benjamin selected his, he asked Tracy to check it.  She alerted – probably because the prior student who had it at home had eaten nuts while studying for science last year. He asked Tracy about another book.  She alerted again.  This happened more than once until she “cleared” a book, which he brought home and has now used and has been fine. 🙂  Second, Tracy has now alerted several times to his locker at school. We are still assessing the cause of this, as it could be a strong smell in a locker next to his, something inadvertently rubbed/bumped on the outside by someone else, or something else.  But he’s been able to thank Tracy, fix the situation, and has been (so far) safe. It’s troubling that she’s alerted more than once to the locker but we know to stay on top of it and we’re all watching it.

Getting Tracy to school has been a real shift in routine for Benjamin, and he’s really stepped up.  Tracy has to get up and really get her day going before she can be at her best for working.  So he’s having to wake up before school every day before 6:00 and taking her on a 20 minute fast walk, and then coming home and getting ready himself before feeding her and getting her out the door for school.  And then, after Tracy works so hard all day at school, she needs more attention again and he’s walking her again every afternoon for 30 minutes right now.  (We’ve decided he’s going to be in even better shape than he already is!)  We’re really proud of the level of responsibility he’s taken to care for Tracy, and she is paying him back by giving him excellent behavior and really good detection work during the day when he needs it most.  He has a level of comfort and peace by knowing where allergens are because of Tracy, and tells us that he loves her very much and that she’s worth all the work because of how much she helps him.

What difference does a nose make?

We brought Tracy home in June after spending two weeks in Colorado Springs learning how to work with her.  Bringing home a service dog is in some ways similar to bringing home a new infant.  Everyone’s excited, overjoyed.  Tracy was a long-awaited and prayed-for new member of our family.  We had to adjust our routines to incorporate Tracy’s needs. Benjamin had to learn to embrace a new level of responsibility. We all needed to learn about each other.   It was an important time for all of us.   As can happen in transition times, not everything went smoothly at first.  Tracy immediately began to experience some health issues.   Her transition away from Colorado was more difficult for her because she didn’t feel good.  Happily, she is well now and fully embracing her new home.  She is obviously deeply devoted to her new boy.

Even from early on, though, the answer for our family is:  Yes, her nose makes a difference.  Tracy’s ability to search out trace amounts of allergens makes a difference for our son.  As soon as we brought Tracy home, we went on a family vacation to Yellowstone National Park.  This is the kind of vacation that takes careful planning on our part because of the great distances from medical facilities in remote areas, limited access to safe food,  and heavy dependence on nut products for summer snacking.

To make it work, we rented a cabin with a kitchen and planned to cook from scratch. We always carry a number of epi pens with us in the event of an emergency.  We located places where we could purchase fresh ingredients.

When we pulled up to the cabin in West Yellowstone, my mother waved us back and announced that there were peanuts strewn all over the front porch. (The owner knew of the allergy and had cleaned the inside, but the previous guests must have eaten nuts on the porch just before they left.)  Tracy had been with us 7 days.  Mom and I worked to clean up the porch. When we were done Joel asked Tracy to search the porch. She alerted to the door knob, door mat, and an arm of the chair. I cleaned those areas again. Joel asked her to check the area again. She cleared the door knob and the mat. She alerted again at the chair. As I got down to clean again, I noticed two small peanuts that were under the chair between the wall and cement.  I cleaned those up, wiped it down a third time, and asked Tracy to search it again. She cleared it.  Joel walked her through the house, and she never alerted to anything in the house.

Benjamin sat on the front porch often during that entire week, and never once had even a small reaction.  That might not sound like much, but to us it was amazing.  Tracy’s collar says, “I save Benjamin’s life.”  Did she save his life? I don’t honestly know if that can be measured.  Anaphylaxis works in wily, hard-to-predict ways. That, of course , is why it can be so scary. In one situation it is upon fast and furious. And in another similar situation it isn’t.  What I can say for sure, though, is that my son was relaxed, having fun, and not worried.  He never even had a small reaction. Nothing. That, I can say, was a first for him.

We are extremely grateful to Kathlyn Ross, Tracy’s trainer, for the time and care she poured into Tracy. We are grateful to Tracy’s puppy raisers for the loving environments they provided for Tracy as a puppy.  Her nose makes a difference for our family, for our son. We are grateful.

Life with a service dog: Thoughts on Tracy

We have now had Tracy for eight weeks. Over these weeks, I have learned a lot about what it means to take care of a living thing. I have to think of Tracy’s needs before I do what I need or want. This means that when I get home and I need a drink, I must give Tracy water first because I know that she needs it. This is a major change for me because I never had to do that before. Taking care of her first also includes taking her potty. If she needs to go potty, I have to take her out no matter what I am doing. As annoying as this is, I know that it is necessary and that I need to do it for Tracy because I love her. I also have to get up and take Tracy out to exercise right away. I have to exercise for a minimum of thirty minutes, meaning that I will be walking three or more miles each day. I will have to go farther if I run or bike. It is annoying for me to have to do this every morning because I cannot skip any mornings, but Tracy needs me to do it, and the exercise is good for both of us.

One thing that I certainly know is, as much work as Tracy is, I am absolutely glad that I have her. We just did a training session with her in which we hid pistachios and a peanut individually in different things outside like a pile of rocks. She did great. I have learned that the training sessions are more for me to learn how to better work with Tracy than they are for Tracy to get better. Tracy is already very good. I am the one that needs to learn how to find nuts with her. We are both doing very well, and the training session was a success. I made the mistake of telling her to show me where the nut is before she had caught the scent, but I did not do it again and I learned that I have to wait for her behavior change before I tell her to show me. During the session, Tracy learned that she has to work for me outside. There were a few times that she got distracted, but she got right back to searching and did a great job overall. 🙂

A Bomb-Sniffing Dog for Peanuts

My short-hand description of Tracy is that she’s a bomb-sniffing dog for peanuts. What I mean by that is literally that she has been trained in the way that many military or police dogs have been trained (for explosives or illegal substances), but that her training is specifically to detect allergens.  Tracy is currently certified on detecting peanuts, peanut shells, peanut oil, cashews, and pistachios.  Those are 5 different scents to a dog — and we selected those 5 because Benjamin’s highest reactivity, to our knowledge, is to peanuts and then cashews and pistachios.

When Tracy searches an area and locates the smell of one of these allergens, she is trained to “alert” to it.  She does this by exhibiting a change in behavior once she finds the scent, and then sitting right where it’s the strongest.  If it’s not clear to the dog handler what she is doing or where the allergen is, she is trained to respond to a “show me” command – where she will get up from sitting and then nose the exact area again where she found the scent , or sometimes, if it’s obvious to her, she’ll even kind of paw at the area where she found it.  Then the handler gives her the biggest treat of all: a squeaky tennis ball!  When she finds something for us we praise her and give her the ball right in spot where she found the allergen, since she associates finding the allergen with playing a great game that gets her the prized-possession of a tennis ball!

Tracy needs to be able to alert to unknown amounts of peanuts or tree nuts.  One thing we’ve been asked is how we’ll EVER go grocery shopping since she will be alerting to things all over the place.  The answer is – yes, she can show us where the Butterfinger bar is or the bag of nuts (and she likes to, since it leads to getting a tennis ball!), but she does not need to alert all the time.  Tracy is trained to find nuts mostly when we ask her to.  That is, when she is given a command (“check it”), she knows that we want her to check an area or location. Otherwise she can be on a short leash so that we can walk through the store and get what we need (and just avoid the things that we can see!).  So she could check the shopping cart handle and cart, but need not check everything else out that Benjamin could just see and avoid.  We tried this successfully in a couple of stores today.

One other piece of detection work is that Tracy has to practice. So we have been learning how to do “hides” for her – both to maintain and increase her skill, and to let her know that WE like to play the “find the allergen game” just like her other handlers did.  So “hides” (for example, a single peanut in a sealed plastic container in a sealed black vinyl bag) are placed by one of her trainers in an area and we get to go find it with her.  For example, we did a practice search of a seating area around a fire pit today. Tracy could locate the “hide” under a seat cushion, or under the couch, or in the corner about 4-5 steps away from the seating area — all without seeing it.  Or, at Lowe’s, there was a “hide” placed inside a stack of plastic tarps (which have their own funny smell) and Tracy could find it successfully; she also could find it hidden inside the underside of a gas grill on display. When she can find hidden nuts on command, it increases our confidence in her whenever she alerts and increases her drive to find nuts whenever we ask (since it pleases us) and increases her ability to find small amounts in any place that they might be lurking when we ask her to search.

Good dog.

Under a mountain – and then on top of one…

There are (at least) two big things happening here at once for us in Colorado Springs. We have to get used to handling Tracy both as a come-with-us-everywhere service dog AND as an allergen detection dog.  So, we alternate between doing “hides” for detecting allergens with a number of trips and tasks with the dog just to make sure that we’re all comfortable with obedience expectations in Wal-Mart, under the table in a restaurant, on a tour to the Air Force Academy Chapel, etc.  And some of the time includes “mixed” trips – like Monday morning when we went to the new Brunswick bowling alley and arcade to encounter a tremendously over-stimulating environment, where we did some practice “hides” in the black light of the Lazer Tag room after bowling.  Wow!  That’s a lot of smells/sights/distractions, and Tracy is a pro on both her behavior and her detection.  I’ll write more about “hides” and the detection work in a later post …

One of the biggest things that showed how well Tracy is fitting in was our Father’s Day trip on Sunday.  Benjamin and I went with part of the group to a nearby cave – Cave of the Winds.  A cave tour could be very difficult for a service dog, but Tracy was totally nonplussed by walking into a dark place where the lighting was poor, that was underground, and where you weren’t allowed to touch the walls.  She went up and down narrow steps without much issue or even command.  She hesitated just once at one particularly steep and narrow metal staircase, but when coaxed just a little she did great.  And all this was without me holding the leash once; Benjamin handled her the entire time.

For lunch we went to a restaurant in Manitou Springs that had an old stagecoach out front.  She was willing to get into the stagecoach and let the kids rock her up and down like it was bumping along on the old West jutted trails.  She didn’t look especially thrilled about it, so I did invite her down to stand by me before we went to eat.  🙂 She then “downed” under the table at lunch very nicely and didn’t disturb anyone.

After our late lunch, Benjamin and I hiked up the Manitou Incline with a couple of friends.  This is a famous spot here – because it has a straight-up hike up an old cog-railway trail near Pike’s Peak, in what is already a pretty high-altitude environment.  The Incline has a vertical rise of about 2100 feet in about a 1.0 or 1.1 mile span.  So it averages a 40% rise on the hike, and one source says the rise is 67% at one point! (There’s no actual scrambling or rock climbing, just navigating up and around old railroad ties.)  To hike down we used the Barr Trail, which winds down the backside on more of a traditional switchback style at a more moderate slope, and therefore a longer mileage down.  Tracy loved the hike.  We joked that she might be part mountain goat, since she could handle the hiking even better than we did.  She was actually better off-leash hiking, because she was so willing to go just a bit ahead of us and run right back … and everytime we paused to get a drink (often on the way up!) she came to me and wanted to be re-leashed to sit comfortably with us.

I got home on Father’s Day evening with a tired but very happy 13 year old – and a happy dog.  If we can spend a day trekking in caves under a mountain and then hiking up the steep incline of a mountain and down again, then yes, we’re gaining confidence that she’ll be able to “hang” with Benjamin … just like we want.

Tracy is here! (by Natalie)

Hello! Guess where I am right now! If you guessed Colorado Springs, Colorado, you guessed right! Even as I am typing this, my brother Benjamin is hanging out in the other room with our very newest member of the family, Tracy!!! We got Tracy yesterday evening. She is the cutest dog ever, and her eyes are just so intense. She is very well trained, and we love her.

Tracy LOVES tennis balls so much that she goes crazy around them. She loves Frisbees too! Also, she is really athletic. We have met a lot of people with allergies here. It’s really cool to be around people that “get it” with food allergies. We all understand each other and each others’ restraints. The hotel is trying to be really allergy-friendly, and Benjamin was excited because he can eat breakfast here, and he can have the waffles that the hotel serves. This may not seem like a big deal to you, but usually the breakfast at hotels isn’t safe for him to eat.

I still cannot believe that Tracy is finally here, and I have to keep pinching myself to make sure it’s not a dream. Thank you for helping to make this opportunity possible, because it’s the best opportunity ever! As I watched my brother take Tracy for a walk yesterday, right after he got her, I started to cry because I knew that Tracy is my brother’s ticket to freedom, his ticket to be able to live like a “normal kid.” Benjamin will be able to do things that he’s never been able to do before, things that you and I take for granted every day. Things like sitting at a lunch table and not worrying about what the person before you ate. Just talking with your friends at the lunch table, having a regular conversation. Things like sitting down in your desk, and not having to worry about what the kid before you had for breakfast and what he/she touched. These are all things that Tracy can help him with. She can sniff his lunch table before he sits down, and tell him if there is nut residue on the table. Tracy will sniff his desk and let him know if it’s okay to sit at. I just can’t believe that she is really here, and this is a possible new kind of life for Benjamin.

I don’t get to hold her leash much, and I don’t give her a whole lot of commands. I try not to interrupt when Benjamin and Tracy are practicing commands, and frankly none of us but Benjamin do all that much with Tracy. But it’s okay. It’s okay because I know that this dog might save Benjamin’s life. I know that she is primarily his dog, and that Tracy will know my brother the best, and she will trust him the most. She will look to him for the next move, and she probably won’t ever have that kind of relationship with me. Again, that’s okay. I am enjoying watching them bond, and seeing how even after only 24 hours how close the dog and Benjamin are getting. The trainers said that it will usually take 10-14 days for your dog to really trust you, but I think that Tracy is going to trust Benjamin before that.

Thank you thank you thank you thank you thank you thank you thank you THANK YOU!!! I could say that forever, and I wouldn’t have said it enough times. I am just amazed by this dog. Everyone who has donated, or looked at my blog, or just supported us by themselves in their heads, helped SO much to bring her home. Also, thanks to all of the trainers that took Tracy in along the way, and to the leaders of Angel Service Dogs for making it possible for Benjamin to get Tracy! Thanks again to everyone who donated or supported us, and I can’t wait to post pictures when I get back home! I’ll see you all later!    -Natalie

[cross posted at my 30dogbookblog]

Meeting Tracy: the “I Save Benjamin’s Life” dog

The second full day was very full, with classes on reviewing commands, redirecting and succeeding with a dog, pack leadership, and really interesting stuff on understanding air flow and how to search to maximize the dog’s sniffing capabilities.  But, on reflection, all that seems overwhelmed by the culminating event at the end of the day (at 7:30ish), when Benjamin met Tracy for the first time. The first meeting was a little teary for several of us – and unbelievably full of energy for a 13 year old boy who had been waiting so long for this dog and for a dog meeting a new friend, with lots of other dogs and people around, too. They are both in the other room now, sleeping next to each other, after Benjamin walked her, played with her, gave her commands, fed her, and worked on the basics of bonding.

What’s obvious even at first reflection is that Tracy is highly trained and will do her jobs well – even though we’ve only seen some basic obedience commands right now.  What’s also obvious is why we’re here: Tracy and Benjamin need to bond and grow in trust with each other, and Benjamin (and the rest of us) need to be trained so that we can handle Tracy properly and maintain her.

Did Tracy pull him and get distracted when he took the leash and walked her? Yes. Was he able to redirect her all the time yet? No. Did she look to her trainer at times rather than Benjamin for commands? Yes, but not always.  Did Tracy and Benjamin already start understanding their commands and rapport better together, such that he could give her a sit/stay or down/stay command and then walk away and do some other things before releasing her? Yes.  And that’s good.

I didn’t ever take Tracy’s leash today, and I barely even got a chance to touch her.  But we don’t want her to think I’m the main one in charge of her.  She’ll need to obey me, but this is Benjamin’s dog. We’re all still figuring out what that means — but one thing the trainers expect is inscribed on a new collar they gave as a gift when he received the dog: The collar reads —  “Tracy: I Save Benjamin’s Life.”