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.

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.

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.”

First full day

Did I mention that Benjamin has a broken arm?  He is sporting a very green cast on his left (dominant) arm, which he got on the next-to-last day of school.  Bummer.  He’s a really good sport about it but it makes several things more difficult.  He is taking it in stride now, though, leading his full-sized stuffed animal stand-in service dog around everywhere.  At one point I didn’t know where he went today and then he showed up – and when I asked he looked at me matter-of-factly and said that he was taking his (stuffed-animal) dog to potty outside.  He’s very ready for the responsibility of the dog at this point J

Today (Monday) was a full day of training.  The morning included basic dog commands and obedience, and a discussion about “pack leadership.”  We also talked about realistic (and unrealistic) expectations for the dog.  We learned some good things that I’ll try to write about later as we practice them…

A highlight of the day included a demonstration kind-of-gone-wrong, actually.  After lunch the lead trainer was talking through the basics of dog-handling and “clearing” a room of allergens.  She talked through how to do a wide-scale look over the room with the dog, then a slightly more detailed search of the whole room and any potential problem areas, and then a very detailed search of a place or chair or something where the food-allergic individual would be. This would ensure that the allergic individual has the least chance of encountering even a surface amount of allergen that could be very dangerous for them.

The trainer next decided to show us by using a dog-in-training.  (Backstory: Because of the severe allergies of the individuals in this group, the hotel has gone through some pretty extensive cleaning measures in the rooms – including deep cleaning the carpet in the meeting room, wiping tables/chairs, etc. And a service dog had previously searched the room … but then some extra chairs were brought in.) As she used the dog to “clear” the room the dog alerted to a chair she had pulled out.  There were so many distractions that it didn’t seem like a real alert at first, so she had the dog check the chair again – and another “sit” for an allergen “find.”  The trainer was still skeptical given all the other precautions that had been taken, so she had her daughter (the dog’s primary leader/handler) check the chair – and same thing.  Obviously despite all the precautions an extra chair had come into the room that had some very small trace residue of peanut on the back of it.  (It was removed, all were safe, and the organizers and the hotel were very regretful and apologetic that something slipped through despite their good precautions.) We didn’t talk about this aspect – but this also fit into yesterday’s discussion of risk and that there are truly no “risk-free” situations, even at a training session like this one.   But it was a great illustration (though accidental!) of the way that Tracy will help reduce the risk of a severe reaction for Benjamin.

Arriving in Colorado Springs

We arrived in Colorado Springs on Sunday, after a 900+ mile drive.  Sunday afternoon was the welcome session for our group of families receiving Angel Service Dogs.  There are families and individuals here from California, Colorado, Minnesota, and Virginia.  The individuals here are allergic to peanuts, tree nuts, fish, shellfish, dairy, eggs, sage, soy, wheat, and even more.  Benjamin felt fast camaraderie with the gang of 7 to 13 year olds hanging around together, and he was reflective about the fact that others shared severe allergies – and that some others here have food challenges that are potentially more complex because of their multiple allergies.

The first formal session was an “operational risk assessment” session.  The facilitator teaches strategic theory and other courses at the Air Force Academy, and he walked through how to “optimize operational capability and readiness by managing risk to accomplish the mission with minimal loss.”  (I think that’s military-school language for: Our goal is to live as full a life as possible by making good risk decisions.)  I really liked his approach of describing a metric for measuring the possible hazard multiplied by the vulnerability of the victim equaling the risk level – and then you decide if the risk is acceptable by asking whether you can implement sufficient controls to minimize the risk to an acceptable level.  Again, that’s a long way of saying that the facilitator described a process of assessing the likelihood of the situation for a potential deadly allergen, the vulnerability of the person (Benjamin) to that allergen, and the level of “controls” that could be implemented – and then asking whether the situation was still worth doing.  We talked with Benjamin that this is a method of decision-making that we’ve been trying to do for him and with him for a very long time, and that we’re trying very hard to hand off to him.  We have always wanted him to live absolutely as full a life as possible while avoiding unnecessary risks.  That’s a very hard thing to balance and figure out.

The last part of the session for the evening was an exercise where Benjamin had to simulate the thought process of thinking through a risk situation and assessing it.  He did a great job identifying potential problem spots and how he would try to avoid or fix the problems.

Benjamin was disappointed that he did not yet get his dog Tracy.  BUT, he did a great job with the very large carnival-sized stuffed animal dog that they gave to him to keep up with (wearing a service-dog vest and everything).  The thinking is that he needs to start taking it everywhere he goes already, taking it to potty and eat etc., so that he gets used to the dog right now.  He will get the actual dog Tuesday night.  The “wait” is just so that there is enough time to teach him (us) how to handle the dog properly so that the first meeting is really successful and sets the tone for a great working relationship, rather than letting the dog and handler settle into any bad habits from the beginning.

Here’s a transcript of an interview we did just before coming to Colorado. We were talking to Ted Katauskas, who was Tracy’s first puppy-raiser. We’re looking forward to meeting Ted next week. Ted helped prepare Tracy for Benjamin, “Tracy’s Forever Boy.”

June 1

THANKS to all who have been reading — and a special thanks to all who donated to Benjamin’s service dog.  We have finished the fundraising for his dog (hooray!), and we’re really grateful for all your help.  I’m leaving up the “donate” button for now on the top left in case you still want to donate to Angel Service Dogs, since they are a great organization and still need support.

Today Natalie posted her 31st “dog book” review at the sister blog to this one.  (She had a goal of reading and reviewing 30 dog books to raise money for Benjamin’s dog but one-upped herself!)  She’ll keep posting some things there, including — I think — some summaries/analysis of the dog books that she’s read.  But I want to say thanks to her for great work!

Benjamin completed riding the 30 mile version of the Ironman bike ride while pulling a dog-trailer.  He sought and received a number of sponsors for that ride and worked very hard himself.  He has done a number of other “odd jobs” and writing fund-raising letters to raise money, too, and is also finishing a successful year at school — and is now working on a bunch of thank-you notes! (keep it up, Benjamin! 😉  ) 

He plans to contribute some more posts to this blog as well over the next stretch of time, and we will generally keep the blog going to help others learn about life with a food allergy and life with a service dog. And maybe there will just be posts about life. 🙂

One week from tomorrow we’ll head to Colorado Springs to get Trac-E (Tracy), Benjamin’s new service dog.  We’re excited for the all the ways that she will help Benjamin.  In fact, we’re wishing she were around next week for his end-of-year school party.  The school team has been good to help trouble-shoot that, but it’s exactly the kind of place where things unexpectedly turn up.  We’re hoping the dog will make events like this a bit easier for Benjamin to manage…