Category Archives: Allergy Education

Product Profile – Twigtale Custom (Allergy) Book

Twigtale is a company specializing in personalized books for children to help them with transitions, improve their sense of identity, cope with loss, or understand something about themselves. Like allergies! How cool, right?

Twig Tale Allergy Book

Twig Tale Allergy Book

There are tons of pre-scripted books. You simply personalize the book by adding your child’s name, pictures, and relevant details. The food allergy book is just the right mix of education and fun.

If you utilize one of the pre-formatted books, the language is carefully crafted, sweet, perfectly child-appropriate and makes completing a book take all of 30 minutes. Unless of course your digital pictures are a sea of thousands of unorganized pictures (ahem), in which case it could take a few more minutes.

For Bubba, the language of the allergy book didn’t quite fit her unique profile (read – way too many allergies). I emailed Twig Tale customer service to ask what I could do and got a phone call that night. They were so sweet! We decided one of the blank templates would be our best bet. I simply copied most of the allergy book language but tweaked it as appropriate. Bubba loves her book. It shares so many of the special things about her, but also helps her understand what we need to do to keep her safe. We included a couple pictures of her with hives, of her epinephrine, and of unsafe foods. It can be complicated to teach a young child about all the different variations of unsafe foods. The most important thing, at this age, is for Bubba to know that only Mommy and Daddy know what foods are safe. But we feel that it’s important for her to start learning what all different kinds of unsafe foods look like. Most of the rest of the pictures are just adorable, silly, Bubba-being-Bubba pictures. Because it’s also important for her to know her allergies are just one special thing about her.

The books are $20 with another $5.50 in shipping costs. BUT there is a 15% off special through 2/15/15. Code: HEART15.

Allergen Detection Dogs

8690997099_207a80c79b_nWhen I first heard about an allergen detection dog, I almost fell off my stool. Only a parent of a child with life-threatening food allergies could understand the fear…the feeling that your child’s entire life will be a mine-field…that even with every precaution, you could miss something…that missing something could cost your child her life…that you would do ANYTHING to keep your child safe.

And if that ‘something’ was a cute, lovable dog? Sign me up! Well, not so fast. I have a penchant for research and the potential $15k price tag slowed me down a bit.

There are two, related, reasons why we aren’t ready to start our fundraising for a dog just yet. Bubba has not demonstrated that she has severe contact allergies. She gets contact hives from egg and milk, but they (thus far) have resolved quickly by simply washing her off with soap and water. As a result, we feel fairly comfortable letting her play at playgrounds, at friends’ houses (with me present), go to church, etc. Also, I have concerns about the attention that a service dog brings to a child. Looking at the cost/benefit picture, for our family, makes me not ready to take this plunge just yet. But I will continue to update this post with information that I find in my research. Our situation may change someday such that I would want to pursue this option. I think this ‘field’ shows a lot of potential, and also a lot of risk. This is a largely unregulated industry and in the years ahead I’m sure we will see many folks seeking to take advantage of our fear. That said, there are companies out there with an identifiable track record who are helping kids.

Among the companies I found who could/would scent train a dog for allergen detection, I am self-characterizing them into three groups:

First, traditional service-dog training organizations that have trained dogs to be aides for kids with autism, epilepsy, those who are wheel-chair mobile, etc. For these companies, I want to know more about their background in scent detection, but would feel more confident about their ability to select and provide a service-quality dog capable of working with young children in a school environment.

Paws 4 Ability – I am impressed with the company and their track record. For now, it’s a dead end. They are not taking applications for allergen dogs because their waiting list is already too long. That should tell you something though I suppose.

I would like to look into Assistance Dogs International more.

Second, organizations dedicated to providing allergen-detection dogs. For these organizations I am most interested in their qualifications and track record. I feel more confident that these folks might understand allergens and how specifically they pose dangers for our kids.

Allergen Detection Service Dogs – I spoke with their founder Ciara Gavin. She has a background in scent training dogs for the military – doing bomb and narcotics work. This company boasts that they have trained almost half of the working allergen detection dogs in the country (17 of 50). The cost is about $15k for the trained dog and the training session you do with the dog (offered at their facility or they will come to you). If you opt to go to them, additional perks include workshops on deducting the cost of the dog from your taxes, etc. The waiting period is about six months. I have not yet spoken to someone with personal experience with them. An interview with Ciara can be found on this blog. The company’s website answers a lot of FAQ and also discusses the issue of “allergy-friendly” breeds. I also came across this Facebook discussion from a couple years ago about the benefits of an allergy service dogs and video demonstrations of their skills. In addition to her prior military canine work, she previously worked for Angel Service Dogs.

Angel Service Dogs – Many of us have seen of videos of Sherry Mers or the families doing fundraising to get an ASDI dog. As of January 2014, the organization has placed over 60 dogs, per this article. Their current plans are to train 20-30 dogs/year and wait times for a dog are around 6 months. This somewhat dated article provides a little information on how the organization was started, its trainers, and preferred dog breeds. An example of one of their success stories can be found here.

I am a part of several allergy support groups on Facebook and read a discussion about ASDI (you need to join the group to read the thread). It includes families who love their dogs and families who feel betrayed by the organization and don’t feel they got what they were promised. I took the time to reach out to these families and several were kind enough to share their stories with me.

Those with good experiences shared that ASDI has been ‘like a family’, very supportive through the whole process, and that the dog has helped them to feel safer and to help them locate allergens they could not see. These families report they are going more places, with fewer reactions.

Those with negative experiences complain of issues with behavior and temperament. One family shared that their dog can no longer work as a service dog due to an aggressive incident at school. These families put a lot of money and emotional investment in their dogs, when it doesn’t work out it is heart-breaking. Google searches of this organization turn up accusations regarding professionalism and a dated discussion of various ‘issues’, but there are no Better Business Bureau complaints within the last year. The organization has an “A” rating.

I spoke with Sherry about dog selection and training. I was impressed with the socialization process, which sounds similar to how other service dogs are raised – in the homes of volunteers where they can be socialized to families and the community (the puppies go out wearing vests). As the dogs get older they work with ASDI trainers (all certified) for their advanced obedience and specialized training. This includes for the desired allergens as well as things like tracking (for an autistic child), electric fence work (for families like ours who don’t have a fenced yard), etc. They have trained dogs on up to 15 allergens, including dairy. All of the ‘standards’ the dog is required to meet are spelled out explicitly in a contract with ASDI. The dogs are evaluated by a third party before they are placed.

Placement/training sessions with the families are held in Colorado. The training includes lots of additional workshops to help families coping with allergies – risk assessment, the psychology of personality (so you know how to best advocate for your child), canine and human first aid/CPR courses (including how to use a defibrillator), allergy education, etc. Families are required to sign-off on witnessing all of the behaviors the dogs are expected to exhibit. If there is an issue with any of the dogs, or a mis-match so to speak, there are a few ‘extra’ trained dogs (referred to as “dogs on deck”) who could be placed with the family instead.

Getting an allergy service dog is a commitment to ongoing training to keep the scent detection fresh and obedience on track. Part of the contract spells out that families need to send in weekly training logs. Trainers are available for Skype sessions. If there is a serious problem that cannot be worked out remotely, Sherry told me the dog would be sent to ASDI (owner’s expense) and that her trainers would try to resolve it (ASDI’s expense). Worst case scenario, if the dog could no longer work as a service animal, it would be returned to ASDI and a new trained dog would be provided after ASDA raised the necessary funds.

UPDATE: CBS Denver posted an article about Angel Service Dogs, “Service Dog Organization Accused of Selling Untrained Dogs”. A separate news article mentions an additional family who does not feel their detection dog works.

Noelle’s Dogs Four Hope – I actually came across this organization because the owner, Tina Rivero’s name came up unfavorably in a discussion about Angel Service Dogs. Another blogger appears to try to have looked into her. Tina is the mother of a daughter with epilepsy and got her start by training a dog for her. I have not done any additional research.

Third, organizations with a track record of dog training (related or otherwise). There are a lot of questions here.

Southern Star Ranch – I know very little about this organization outside of their website. They scent train dogs for police units, pest detection, and a number of other purposes. They also train people who train dogs, which gives me confidence in their skill and reputation. I found a story about one of their dogs here. I have been played phone tag with Sharon Perry, the head detection trainer. I will update this post if I speak with her. My questions center around their experience with allergies and how to get a scent dog service qualified. Do they know what to look for in the temperament? Do they know what types of environments the dog needs to be comfortable in? How do they train dogs to work with/for young kids?

Tarheel Canine – I spoke with one of their employees as well as Jerry Bradshaw, the head trainer. He has an international reputation for training professional dogs (narcotics, police, etc.). He founded Tarheel in 1994. Tarheel turns out close to a dozen police dogs a month and they have trained allergen detection dogs, but I’m not sure how many (it may be only one). Tarheel has less experience training dogs designed to work primarily with children (versus say Guide Dogs for the Blind), but Jerry discussed with me how most of their protection dogs are trained for families, so they are used to having children in mind. Similarly, many of their police dogs need to be trained and comfortable in a variety of ‘service’ settings, e.g. public transportation, schools, etc.

Jerry initially trained an allergy detection dog in order to help out a family who was having trouble raising the funds for “one of those $20k dogs”. Jerry believes the fees charged by organizations devoted to allergy dogs are out of line with what the costs to train a dog are. I believe that he has a lot of skill and experience as a dog trainer. My only concern would be the tendency to want an excitable, higher energy dog that might do great in a police setting, but struggle to be the mellow, petable dog required for a young child. Additionally, an organization like this is normally handing a dog over to an adult whose job it will be to handle them rather than a family (and child) with little-to-no dog training experience. There may be great differences in how ‘finished’ a dog is according to Ciara Gavin. I asked Jerry at what age did he think a child could be the primary handler for a dog like this and he said (depending on maturity) probably in the early teens.

*There are also private trainers who can do scent detection training with a dog. I am not comfortable with this route personally. I have heard both positive and negative stories on Facebook from people who worked with someone privately.

Issues to Consider

  • Might the dog increase your/your child’s anxiety about allergies rather than decrease it?
  • Will the dog draw attention to a child who might otherwise be able to blend in? Are you, your family, and your child ready to be an allergy ambassador everywhere you go with the dog?
  • What will happen if the dog can’t work as a service dog? Do you have a recourse with the trainer? How will your child handle it?
  • Is your child or someone else in your home dog-allergic?
  • What if your child’s school is unsupportive? Is that another battle you want to have?
  • How many allergies does your child have? Can the dog be trained on all of them? What if your child’s allergies change over time?
  • Detection dogs don’t typically work well in the home. It’s their down time and also too ‘comfortable’ for them. Some families use strategies to have their dog work at home, e.g. have the dog sniff groceries in the garage before they enter the house or sniff guests shoes when the enter the front door.
  • The dog will not alert for an allergen unless you ask it to find one. The dog won’t be looking all the time.
  • Most pet dogs can not be service dogs. It takes a rare dog to have the personality for it. There are exceptions of course.

Baked egg – not all it’s cracked up to be

Bubba passed her baked egg food challenge!!!!!! Which is, er, was awesome. More on that in a minute. This was great news because it meant that we could start serving baked egg to Bubba daily as a therapy to increase her odds of outgrowing her entire egg allergy.

But “baked egg” is strictly defined as being cooked at 350 degrees for at least 30 minutes. I’m no baker, but I can tell you that does not include a single cookie, brownie, or cake recipe. The cupcake recipe provided by our allergist resulted in hard scone-like cupcakes, albeit rather sweet ones. I vowed to get creative and start experimenting.

Bubba had her baked egg ‘therapy’ cupcakes each day for 3 days following her food challenge. Then we went to Disney World and didn’t bring any with us. Our first day back, we popped one out of the freezer and brought it along to a birthday party as her ‘treat’. Well, she took two small bites from the top and then started drooling, wiping her tongue, and asking for water. Spicy mouth strikes again. I asked her what was wrong and she said she didn’t like it. I figured she might be off from all the travel, and since she didn’t have any other reaction, decided we would try again the next day. When I served her another one shortly after breakfast, she again would only eat two bites. She said it wasn’t good for her and it was spicy.

Sigh.

So what does that mean?? I called our allergist who said it could be one of two things. First, it’s possible that the food ‘challenge’ really just desensitized her. Meaning, because she ate such small amounts, spread out over so much time, it wasn’t really a good gauge of whether she would react to it, i.e. she is actually allergic to baked egg. This happens in a small number of patients. Bubba is nothing if not the anomaly. Always. Second, maybe something was off with the batch I cooked. I could try baking another batch and making sure to test the oven temperature and rotate the cupcakes halfway through cooking. Lastly, and most likely, her immune system was still taxed from her accidental dairy exposure in Disney World.

For those interested to know how often something like this happens…not often. One article cites a 10% risk of a false negative on a food challenge, but provides no citation. This study found that 3% of participants had false negatives and suggested food challenge participants ingest the allergen in question in-office the day after the challenge.

Our allergist would like for us to try again with half the amount of egg. If Bubba can tolerate the cupcake we could eventually work up to the full ‘dose’ and increase her odds of outgrowing the egg allergy completely. I know she’s right. So that’s on the agenda if we can just get Bubba a few months reaction-free then we’ll try again.