Showing posts with label team you. Show all posts
Showing posts with label team you. Show all posts

Food Allergy Counseling: Your Middle School Child’s Food Allergy Fears

Being in Middle School* is a really interesting age for kids. It’s the time that they start becoming more independent in many aspects of their life. Physically they are growing and able to use their bodies in new, powerful ways; think group sports and competitions. Cognitively they are able to handle more complex information, more logic and reasoning; as well as more mature aspects of moral reasoning. Emotionally there are changes, too. In a deeply profound way, ten year old children start noticing and thinking about their place, their role in the larger, outside world.

For children with severe life threatening food allergies, many who have been told their entire lives they could die from a food allergic reaction, the prospect of a fatality takes on a whole new meaning at this age. “Like, I could die, die?”

While five year old children don’t need a more specific context (death doesn’t have the same meaning at that age), a Middle School aged child, who is more aware of the world and their place in it, needs a context for this information and fast. And at this age, they are able to cognitively and emotionally handle more information; in fact, they crave it.

As a food allergy counselor, I believe strongly in giving children information in an age appropriate way so they can integrate their food allergy diagnosis into their sense of self and become independent, self-aware teens with full lives and to continue that integration into adulthood.

One major issue Middle School aged children have is the separation of irrational fears about food allergies and the facts of food allergies. In my food allergy counseling practice, I help Middle School aged children learn how to separate irrational fears from real food allergy risks, a skill set they will need for the rest of their lives.

Firstly, we talk about the fears through drawings or writing stories. If I see them in my office (versus through video chat session), we may play a game to help them process and describe these fears. Fears can take metaphoric forms like fearing the family house might burn down, someone might break into their house or even feeling like there is a ghost following them. I have worked with children with all of those fears. These are essentially fears of the unknown and a profound feeling of a loss of control, which needs to be examined and managed.

I validate Middle School aged children's feelings and fears all along this process: food allergies are real, serious and our feelings around them can be scary. They (the feelings and the food allergies) are also manageable with information, facts and a plan.

Secondly, we explore how a Middle School aged child understands their food allergy diagnosis: what are the facts, as they understand them, what is their plan, as they understand it? Very often children at this age have only pieces of the picture of food allergies, usually the death piece, but not the fuller picture of what food allergies are, how they work in the body (or don’t work) and what a food allergic reaction and its progression looks like.

Many Middle School aged children don’t remember earlier infant reactions or have never had a reaction and were diagnosed through testing as an infant. Without memories they have overblown ideas of what can happen; and with memories they can have even more overblown ideas of food allergic reactions.

Grounding Middle School aged children in the reality of disease management in an age appropriate way can help them learn how to separate reality from fantasy; fact from fiction. Once we are able to introduce this concept to children, I work with them, giving them more tools to calm themselves when they feel anxious and ways to ground themselves in the facts of food allergies.

This is beginning: airing the fears and getting to the facts.

***
Here are parts two and three of this blog series on middle school aged children and anxiety around food allergies.

Here's an excellent post about anxiety, generally speaking, in children, by Karen Young.


*I'm using Middle School aged children to represent the middle school years 8-12.

NB: When fears are not managed, children can suffer or withdraw. If you witness troubling behaviors in your child, please have them evaluated by a local child psychologist, social worker or psychiatrist as well as your allergist and your pediatrician.

Food Allergy Counseling: A Letter to my Musical Improv Teammates



Request re: Sloane's tree nut & fish allergies

Dearest Teammates and Coach,

This hasn't come up yet but eventually someone's going to eat a Kind bar or some raw cashews before a practice or show and then wonder why I don't want to touch them during a scene.

Trust me, it's not you; it's the nuts.

I'm severely allergic to tree nuts (cashews, brazil nuts, walnuts, almonds, pistachios, etc.) and salmon.

If you wouldn't mind refraining from eating food items containing these ingredients before or during our practices or shows, I'd deeply appreciate it.

Any questions or concerns, I'm here!

Thanks!

***

Back in September, I auditioned for and was cast in a musical improv house team; "house" means we are regular players at a particular place. There are eight of us on a team, plus a coach and a pianist. We practice weekly and perform twice monthly. It's so fun I can’t even contain my joy in being able to do this regularly.

I have been in classes learning this new skill for the past two years and over that time have watched many of my classmates snacking on raw, roasted, candied nuts in various forms during practices and before shows. Nothing ever happened, a severe anaphylactic reaction from casual contact would be highly unlikely (read more about that in my interview with Dr Dave Stukus), and it hasn’t happened yet in my life and I go out socially at least 5 nights a week.  However, it didn’t make me feel super comfy about rolling around with everyone especially when their nutty hands reach out to touch my face.

Since I’m on a team now, with regular performers, performing weekly I thought I should mention something, mainly because I want to be able to be close to them and not fear spitty talker or nutty hands. *Again, nothing serious nor life threatening has ever happened with casual contact with me, maybe a hive or two or an itchy cheek but nothing near systemic nor anaphylactic. This is more about mental comfort than a physical reality.*

So, I sent the above note. I saw everyone two days later for rehearsal and there was one collective thought from my team: “Cool, no problem. We don’t want to hurt you.”

What a wonderful feeling to put out a clear direct request and receive a clear direct reply.

And I’m back to rolling around with my team!


Food Allergy Counseling: Interview: No Nuts Mom Group Founder, Lisa Rutter

I met Lisa in person last year at the EpiPen Blogger Summit where I was a featured speaker (more on that here); however, I had been hearing about her Facebook page for some time as it provides a space for parents of food allergic children to connect and share resources. Recently I had a chance to ask Lisa more about her group, NO NUTS MOM GROUP (NNMG).

***



Allergic Girl: Tell us a little about you, Lisa?

Lisa Rutter, NO NUTS MOM GROUP (NNMG): I live in MI with my husband and my 4 and 6 year old boys.  My 6 year old has food allergies to peanuts and tree nuts. I am a stay at home mother, Founder of NO NUTS MOM GROUP (NNMG) and Co-Leader of a local support group called FACES of Michigan

AG: Tell us about why you created
NO NUTS MOM GROUP (NNMG)?

NNMG: I started the group as soon as my son was diagnosed at 3 years old. It was a way for both us to connect with others dealing with the same thing. I wanted playmates for my son and I didn't want to have to worry about being around peanuts and nuts at play dates.  Shortly after the group started, I became more actively involved in the food allergy community and as I learned more, I wanted to help more. The group started as just a playgroup, but has now become so much more. 

AG: What is the NO NUTS MOM GROUP mission?

NNMG: The No Nuts Moms Group is a group dedicated to connecting others, educating and raising awareness throughout our communities. We are also a great online support community.

As the Website states: "Welcome to No Nuts Moms Group!  We are a group dedicated to learning, educating and supporting others.  We have 53 peanut and tree nut free groups for all ages.  If you are looking to meet other families that are dealing with life threatening food allergies, please check out our groups tab located at the top of this page.  They are FREE to join!"

AG: What can we look forward to in 2014 from NO NUTS MOM GROUP?

NNMG: We would love to see more groups pop up in other cities. We will continue to raise awareness and connect others dealing with life threatening allergies.

AG: What aspect of NO NUTS MOM GROUP are you most excited about?

NNMG: Connecting and helping other food allergy families. But the group is also not just for peanut tree nut allergic. We are open to all with life threatening food allergies. I don't get paid to do any of this. It is one of the most rewarding jobs I have ever had. I feel very close to so many of these families. It helps me and it helps others and it just feels good.  And I love my family and my son and I know I am making the world a better place for them.

AG: How can we find NO NUTS MOM GROUP online?

NNMG: Website: http://nonutsmomsgroup.weebly.com/
Facebook: https://www.facebook.com/nonutsmomsgroup
Twitter: https://twitter.com/nonutsmomsgroup
Pinterest: http://www.pinterest.com/nonutsmoms/



***
 

Thank you, Lisa of NO NUTS MOM GROUP and every food allergy parent for your tireless work to support your children as they grow into young adults living confidently with food allergies.

Food Allergy Counseling: How Common Is Anaphylaxis: Study

Some of the most well-respected leaders in the food allergy medical field, including Robert A. Wood, MD; Philip Lieberman, MD; Hugh A. Sampson, MD; and F. Estelle R. Simons, MD
were involved in a new study about anaphylaxis.

The conclusion: "According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%)."

Here's a full text of the Journal of Allergy and Clinical Immunology (JACI) study

Below is a partial of the press release from Asthma and Allergy Foundation of America (AAFA).

***

NEW STUDY SHOWS NEARLY 1-IN-50 AMERICANS AT-RISK FOR SEVERE ALLERGIC REACTIONS

Anaphylaxis is More Common Than Many Thought, Most Patients are Not Prepared

A novel study by the Asthma and Allergy Foundation of America (AAFA) published today in the Journal of Allergy and Clinical Immunology (JACI), finds that severe life-threatening allergic reactions – anaphylaxis – are common in the U.S.  According to the peer-reviewed study, anaphylaxis very likely occurs in nearly 1-in-50 Americans (1.6%), and the rate is probably higher, close to 1-in-20 (5.1%).

The article, Anaphylaxis in America: The Prevalence and Characteristics of Anaphylaxis in the United States, based on AAFA’s study of the same name, provides one of the most reliable estimates to-date of the prevalence of severe, life-threatening allergies in the general population.  It is also helping experts understand how the public, patients and caregivers think, feel and behave regarding anaphylaxis.  For the full text of the article, visit www.aafa.org/AnaphylaxisInAmerica.

Dr. Robert Wood is the lead author of the article, chair of the AAFA research panel that conducted the study, and Director of Allergy & Immunology at Johns Hopkins Children’s Center.  “This study provides the first estimate of anaphylaxis prevalence in the United States using a large unbiased survey,” according to the article.  But the authors also pointed out that patients do not appear adequately equipped to deal with future episodes, indicating the need for public health initiatives to improve anaphylaxis recognition and treatment.

“One of the most alarming things we found is that, despite the common occurrence of anaphylaxis, most people are not prepared to do the right thing when emergency reactions occur,” says Mike Tringale, Senior Vice President at AAFA and one of the authors of the article.  “We need to re-double our efforts to make sure that people are informed and have access to the right medication.”


For the full text of the article, visit www.aafa.org/AnaphylaxisInAmerica.





Food Allergy Counseling: Talking to Suburban Essex Nursing Supervisors Association (SENSA)

Allergic Girl talking food allergies
What a pleasure meeting with and talking to the Suburban Essex Nursing Supervisors Association (SENSA) in Verona, NJ last week. That's me in the picture above, beginning my presentation before an audience of public health nurses and school nurses. Together, we talked about the many challenges and triumphs they face as more and more children are diagnosed with life-threatening food allergies and entering the school systems.

Growing up as a child with anaphylactic food allergies and allergic asthma, I knew every school nurse, summer camp nurse and college nurse, and they knew me. These women were on the front lines of what was happening with me health-wise during the hours I was in their care. Nurses are an integral part of a food allergic child's support system and their TEAM YOU. 


What is TEAM YOU? I believe it takes a team -- a supportive network of friends, family and professionals -- to navigate through life successfully and confidently. I call it Team You and I talk about creating one more extensively in my book, Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011) A Team You member helps you in the places where you need help. And for children with medial needs, school nurses are integral part of that team.


Thank you SENSA for a lively conversation and all that you do for all of the children in your districts!




Food Allergy Counseling: Interview with Dr. Michael Pistiner

My colleague Dr. Michael Pistiner’s website AllergyHome.org is now hosting a free, downloadable PDF handbook called: Living Confidently with Food Allergy. It was created in conjunction with Anaphylaxis Canada and co-written with Jennifer LeBovidge, PhD, Pediatric Psychologist.

Here are some previous conversations with Dr. Pistiner posted on Please Don't Pass The Nuts:


I had an opportunity to ask Dr. Pistiner a few questions about him as an allergist, a food allergy dad, an EoE patient and co-author of this exciting free handbook for food allergy parents.

***

Allergic Girl: Briefly, tell us about your practice and your specialty?

Dr Mike Pistiner: I’m a pediatric allergist in a large multispecialty medical practice. I see almost exclusively children with a large proportion of my patients having food allergies.  I like the challenge of taking care of families, with kids included in their own care. Kids are key players in their own health.  They are important participants in their own food allergy management at all stages of development. To help reinforce this, I really pride myself on getting the kids to get involved in their visit and try to set that precedent for when they leave and go home with their families. I usually start by introducing myself to the child asking them a ridiculous question to make them comfortable followed by a question getting at why they’re here. The visits quickly transition to the parents but I keep involving the kids for as long as their attention holds. Getting their buy in and perspective is so important. The same goes for physical exam and any procedures. I hope that their direct participation in the visit sets the tone for when they leave my office. Playing developmentally appropriate roles in their own food allergy management can engage kids and empower them to be self confident and active participants in their own health.

AG: What have you learned living with a child with food allergies (and you with eosinophilic esophagitis)?

MP: My family’s experience with food allergy has been both challenging and enlightening. Being a father of child with food allergy and having eosinophilic esophagitis myself has opened my eyes not only to the practical challenges my patients and their families face, but has allowed me to feel first hand the emotional and social side. Having food allergy affects many aspects of life - our personalities and our relationships can help or hinder necessary daily management.


For those who discover that they have allergies as adults, and for parents of newly diagnosed, it can force a shift of already established patterns and routines. If a food allergic individual is soft spoken, not accustomed to making their needs known and used to going with the flow, he or she now needs to advocate, communicate, and educate, which may feel quite overwhelming and out of a comfort zone.  Also, if someone is used to being spontaneous, now needing to plan meals, coordinate child care, and being prepared to appropriately deal with an emergency might feel compromising to a free spirit. For some, these new roles are easily incorporated into their lives and families, and for others it is a significant shift that will take time to get used to. Ultimately learning how to comfortably incorporate food allergy management strategies into our lives is necessary, character building and cannot be compromised or discounted. With time, learning how to make it work while retaining our spirit and flexibility is achievable and an important goal.

AG: You have done alot of work in food allergy education and advocacy.  What has motivated this?

MP: When my son first had his reaction I was already an allergist. Despite having a significant knowledge base and understanding of food allergy and food allergy management there were a surprising number of challenges that I didn’t see coming.  Many of these centered around transitions in care, teaching others, relying on others, and communicating effectively.   I made mistakes along the way. My newfound perspective inspired me to make it easier for other families.  There is no reason why we all must recreate the wheel and start from scratch. Since then I have dedicated great effort to food allergy education and advocacy, one outcome of which was AllergyHome.org.

AG: What is the mission of AllergyHome.org?  

MP: My close friend, John Lee and I are serious about AllergyHome’s mission to keep children with food allergies safe and happy no matter where they are or who they’re with. Also, AllergyHome is determined to play its part in ensuring that there are no longer food allergy related deaths, especially in our schools. The website provides practical tools to train and educate all who may be responsible for caring for a child with food allergy. These resources are designed to make training others a bit more regimented, reproducible, and practical. We account for different learning preferences and by offering a spoken format. To make the content even more relevant and memorable we use engaging pictures and tailor the modules to the specific target groups. We hope that the versatility that we offer will increase the chance that those who need food allergy education will understand and retain the information. Collaboration is a theme that permeates who we are and what we do.  Partnerships are necessary when it comes to food allergy education. Parents must partner with schools, doctors with families, etc.  Same goes for all institutions, organizations, and governmental agencies that share the desire to protect and nurture our children. Pooling resources, and meeting unmet needs makes sense when we must ensure the safety and happiness of millions of children.

AG: For our school communities, what do you suggest can be done to address bullying?

MP: While taking care of bullying when it happens is incredibly important, stopping bullying before it starts is equally important. With the rapid increase in food allergy prevalence, our school communities may not have had time to adapt to new and necessary accommodations to protect the safety and self esteems of students with food allergies. Students pick up on the messages of their teachers, parents, and others in the school community. Also, their own perception of an unexplained difference in a peer with food allergies can foster bullying, teasing and isolation. Replacing negative misperceptions with education and awareness can create an environment of support and understanding. A child’s perceptions of food allergies may come from picking up on the attitudes of teachers and parents, but direct education may be very effective. Children without food allergies also can play an important role in teaching each other, their parents, and play a critical role in establishing a supportive school community. Kids are key players in creating communities of support. Here's Allergyhome.org Kids Awareness Module.

AG: AllergyHome.org is now hosting a new exciting product that was just launched, a free, downloadable PDF handbook called: Living Confidently with Food Allergy. It was created in conjunction with Anaphylaxis Canada and co-written by you and Jennifer LeBovidge, PhD, Pediatric Psychologist. Tell us more!

MP: For over two years, I’ve had the privilege to work with an amazing team to develop a handbook for families and children with food allergies. Our goal has been to create a resource that can help guide parents and caregivers in food allergy management and give them the tools to educate their children and the surrounding community. A major goal of this handbook is to guide families to find the middle ground between risk taking and anxiousness as early as possible. Ultimately most families do find it, but for some it can be a struggle where safety, happiness or both can be at risk. If early on families know where the risks are and where they are not, they can learn to incorporate this into their routines, then they can accommodate without undue social and emotional strain. We wanted to make sure that this handbook was free and available in a variety of formats to help get this to as many families as possible.  Although many in our community, especially those that are reading this have access to a computer and multiple resources, a vast amount of the families dealing with food allergies do not.  We wanted to also offer in chapters in PDF version to allow doctors offices to print out relevant sections for families.  Our hope is that anyone that cares for a child with food allergies will have access to this and all of the information in it. This handbook can be found in webased and PDF versions at both Allergyhome.org/handbook and Allergysupportcentre.ca.

Biography:
Michael Pistiner, MD, MMSc is the content provider for AllergyHome a free, food allergy education website. He works as a pediatric allergist for Harvard Vanguard Medical Associates. He volunteers at Children’s Hospital and is a food allergy educator and advocate. Dr. Pistiner is a fellow in the American Academy of Pediatrics where he is a member of the Council of School Health and Section of Allergy & Immunology, and a member of the American Academy of Allergy Asthma & Immunology where he is a member of the Adverse Reaction to Food Committee and co-chair of the Food Allergy Awareness in Eating Establishments sub-committee. He serves as a voluntary consultant for the Massachusetts Department of Public Health, School Health Services. He is chair of the Medical Advisory Team for Kids with Food Allergies Foundation, serves on the board of the Asthma and Allergy Foundation of America, New England Chapter, and member of FAME's National board. He is the recipient of awards from the Food Allergy & Anaphylaxis Network in 2009 and 2010, as well as the American Medical Association Young Physician Section Community Service Award (2010) for his work on the Food Allergy Awareness in Restaurants Act. Additionally, he is the author of Everyday Cool With Food Allergies, a children’s book designed to teach basic food allergy management skills to preschool and early school age children and co-author of Living Confidently with Food Allergy, a free food allergy handbook.

Food Allergy Counseling: Kyle Dine, No Reactions Tour 2013

Me & Kyle Dine at a KFA Event September 2012

  • Looking for positive "Allergy Dude" role model energy for your child with food allergies? 
  • Looking for a fun afternoon of songs for your child with food allergies?
  • Looking for the empowering message your child with food allergies that they can manage their lives with food allergies? 
Then look no further than Kyle Dine. In Kyle’s words: “The most important thing to me is raising awareness and education about food allergies.”  A food allergic lifer (like me!), Kyle travels the United States and the world teaching little ones about severe food allergies, anaphylaxis and empowerment through catchy tunes.

Some of his vital food allergy risk management messages are songs called: “Never Keep A Reaction A Secret”, or “Cool Bracelet” (Medic Alert) or “My Epineph-Friend” about epinephrine auto injectors. You can a listen here. Here’s more about his school assembly work and his brochure. Kyle’s tour starts tomorrow April 30, 2013 and here are his dates of now.

This year I’m thrilled to be on of Kyle’s corporate sponsors and to tell you more about Kyle Dine. And to let you know that he has Fall tour dates available. I’ve seen him perform and little kids are not only mesmerized but enchanted, engaged, learning and having a great time.

Kyle is a wonderful advocate for our anaplylactic food allergic community and I’m proud to call him colleague and friend.

Check out Kyle Dine's site, CD and join him on his tour or book him for your little one's school!

Food allergy Coaching Chronicles

The week of April 1, 2013, I’ll start a new series of blog posts called: The Food Allergy Coach Chronicles.

These blog posts will detail useful coaching tools, life strategies in action and food for thought about living your best food allergic life.

Stay tuned for more!

Adult Onset Food Allergies, New York Times

I know there are millions of you out there, adults who were never food allergic until boom, something changes your life, forever. Last week’s article in the New York Times called The Allergy Buster prompted Robert Tutton to write about his adult onset allergies to carrots for the New York Times blog, "6th Floor". Are you one of the millions of adults newly diagnosed with food allergies? If yes, I can help you get back into the swing of things. Contact me about a tailored-to-you coaching program today! (Here's more about me and food allergy coaching.)

The Allergy Buster, New York Times

I, like many of you read, this article called The Allergy Buster in this Sunday’s New York Times with great interest. I have mixed feelings about the article that I’m still sorting through. What I don’t have mixed feelings about is the relationship this doctor has with her young patients. She is definitely part of their Team You and I love how clear she is about that:

“If you feel sad or discouraged, you call me — you,” she tells the children, leaning in, entwining her pinkie in theirs and asking them to make her “a pinkie promise” that they will take their dose. She tells patients to call her by her first name, and her light, musical voice and lack of a white coat in the clinic all contribute to the magical different-from-other-doctors place she occupies in her young patients’ minds. She gives them presents on every possible occasion or lets them pick out books or puzzles or Play-Doh from a bucket in the office.”

Here’s more from the author (and food allergy mom) about the article:
Behind the article from the New York Times, 6th Floor Blog: Behind the Cover Story: Melanie Thernstrom on Untangling the Mystery of Food Allergies

Being An Allergy Hero, CNN

Elizabeth Landau of CNN.com wrote an excellent article for Valentines' Day this year. [Disclosure: I’m quoted in it]. The focus is about how you can be an “allergy hero” to your significant other if they have allergies, food allergies or dietary restrictions. As Landau says, "As the significant other, you have the opportunity to be an 'allergy hero.' Your job is to minimize risk and create a safe and supportive environment for your sweetie, on Valentine's Day and in general." What’s great about this article is that it’s applicable for any time of the year, not just Valentine’s Day. Read through for tips and strategies about how to support your food allergic loved one all year long.


Best Valentine’s Day Gift, 2013

Still looking for that perfect St. Valentine’s Day gift? One of the biggest, self-love gifts you can give is confidence and clarity about a medical diagnosis (as much as it's possible). And helping your child achieve clarity about their food allergy diagnosis now will help them learn how to self-advocate in all stages in life. (A huge, huge life-long gift.)

February 13, 2013, I was quoted in a story from the Canadian AP about dating and food allergies: "...I'm very clear about what I can and cannot do, and that kind of clarity definitely helps. And people tend to respond to that, I think, in a positive way." You can read more about dating with food allergies from the Canadian AP article: "Communication, planning can help ease dating anxiety for people with food allergies"

Want more? Here’s an excellent breakdown of how I help coaching clients create food allergy confidence and clarity by blogger Grateful Foodie who attended last month’s Blogger Summit hosted by Mylan Specialty (Makers of EpiPen and with whom I have a relationship).

Need more assistance? I’ve got your back. Contact me today about a food allergy coaching program today for expert guidance and support.

Cooking Allergy Free

Last week, I was honored to speak and be part of planning a Blogger Summit here in New York City with Mylan Specialty (makers of Epi-Pen). Part of the event was a dinner with everyone the night before and then breakfast and lunch the day of. We worked closely with the Chef of the Strand Bistro, Kelvin Fernandez, whom you may remember I did an Allergic Girl Dines Out Video with last year.



Chef Kelvin’s shellfish allergic so he really understands food allergies, issues of cross contamination and building a delicious menu. Over the course of two days, we collated every diner’s food restrictions, created a safe-for-everyone menu and vetted over every single ingredient and sub-ingredient of every dish.

Here are some gorgeous shots of the chef and I in his kitchen during that vetting process. (Photographs courtesy of Noel Malcom):

For a food allergic group like ours, he opens a new salt to use!
For any dish that used a "processed" food, we looked at each and every label.
Chef always changes his gloves. He also has latex-free gloves for patrons and his latex-allergic sous chef.

The final result was a dinner everyone could enjoy as there were several allergic and intolerant girls at the table.

*Stay tuned for a blog post of the OMG delicious short ribs he made.*

Thank you Chef Kelvin and the Strand Bistro!

PS: Planning a trip to NYC? The Strand Bistro is one of my go-tos for my concierge clients. More about the Chef and the Strand on this blog post.

Food Allergies, V-Day

I wrote this status update on my Facebook Allergic Girl page last month: “One way in which new BF keeps me safe in my home: shakes contents of containers, bags or boxes (like raisins) into his hands, thus eliminating any possible cross contamination. What is one way your loved one keeps you safe?”

As Valentines Day’s looms, I’d love to hear more about:
1.    The ways you keep yourself safe?
2.    How you keep your food allergic loved ones safe?
3.    How a loved one keeps you safe?


Epi-Pen, My 21-Year Anniversary

I’ve had food allergies since birth, asthma since I was a child as well as environmental allergies and eczema. I still manage all of these conditions and carry emergency medications with me at all time.
Carrying emergency medication as a child inculcated me in the myriad ways one can be self-reliant and also the pitfalls of what happens when one isn’t i.e. nurse’s office visits, out of control asthma and allergies and even emergency room visits. I would be called upon often to use my rescue inhaler and take antihistamines, but there was no Epi-Pen in my childhood, my middle school years, high school years not even most of college.

Epi-Pen celebrates its 25th year of being commercially available in 2013. As a child of the 1970s and 1980s, it simply didn't exist. Even after it was introduced, it was not prescribed as readily it is now, nor was it considered the first line of defense. (Read more from the NIH about food allergy guidelines and best practices). I did receive epinephrine multiple times for anaphylaxis but only once I arrived in the local emergency room.

Then in the fall of 1992, about to embark on my year abroad at Wadham College (Oxon), I asked my then-allergist, a top New York City physician who taught and mentored many of the allergist working in the city currently, if I should get an Epi-Pen. His reply was, “Sure, I guess so.” It wasn’t medical negligence; it still wasn’t routine practice back then to prescribe an Epi-Pen.

Since then, I have dutifully carried Epi-Pens around the world. For 21 years, Epi-Pen, along with my other emergency medications (Prednisone, antihistamines and rescue inhalers and my anaphylaxis action plan, before it was called that) have been my constant companions: on dates, to the office, on trips, everywhere. Twenty-one years ago, Epi-Pen joined my arsenal of tools to help me continue to be self-reliant and live an unrestricted life.

So tell me, what is in your tool kit? How long have you, or your loved one, carried an epinephrine auto-injector?

**


[Disclosure: I have a relationship with Mylan Specialty, makers of the Epi-Pen.]


Traveling to Canada with Food Allergies, Hotel Chefs

What I recommend as an advocate, food allergy coach and someone who has traveled the world with active atopic disease: break down the traveling tasks into bite-sized manageable tasks and start ahead of when you leave. So, I’m headed to Toronto next week for the Toronto Jazz Fest. Very often, I find that hotel chefs are the most accommodating about food allergies. But like all chefs, they need some advance notice. So at least one week ahead of my trip, I contacted the chefs in both hotels where I’m staying to talk about food allergies and how they handle those needs.

***
Some tips about contacting hotel chefs:

-Call the concierge desk and as them to connect you to the chef – it’s way quicker than using the front desk.
 
-Have your needs and questions all ready.  Need a script of what to say – my book, Allergic Girl has plenty!
 
-I have a one page sheet of my allergies, intolerances and what I CAN eat on letterhead ready to go 
so they have it all clearly written out.
 
-Use your pleases and thank yous.

***
 
If you spoke to the chef on the phone, follow up via email spelling out your needs once again. Here’s an example of how the Chef at the Sheraton Toronto followed up with me after our phone call.

Hi there,

As discussed, if you could put as much information as possible on your allergies and preferences that would help us out a lot! We take allergies very seriously here at The Sheraton Center and look forward to looking after you!

I have also cc’d Chef Leanne on this email as well as chances are, she will be looking into your meals on the evening’s of the 27th and 28th

If you have any other questions at all please do not hesitate to contact me on my cell: XX

Thank you
Chef Sean

Sean Ellis

Executive Chef, 

***

If you are contacting a hotel by email here’s an example:

Good afternoon Melanie,

I'm coming to Toronto for the Jazz fest and staying with your hotel June 29-30 and would love to dine with you!

I'm severely allergic to tree nuts and seafood and wonder if your chef feels comfortable accommodating food allergies?

Let me know.

Best wishes,

Sloane Miller
 

***
 
Both of these hotels so far have done great jobs of communicating to me that they are able and happy to handle my requests. I will check in once onsite.

And as always, I will triple check my needs, bring a chef card, have my emergency action plan and medications on me and bring my smile to the dinner table (never hurts to smile).

Food Allergy Workshops for the College Bound, July 2012

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Are you a parent with a freshman heading going off to college and want to ensure a safer and easier transition?

Are you the freshman (or college student) and want to talk to other students like you? (And with someone who’s gone through three higher degrees with food allergies, asthma and allergies?)

I’m thrilled to announce this pilot program with an introductory fee!

*Food Allergy Workshops for the College Bound*
For parents and teens in two [2] separate sessions

The sessions are:
    •    Run by experienced social worker, coach and consultant
    •    Solutions focused
    •    Include a clear plan of action


THE DETAILS

WHERE:
ONLINE VIA SKYPE

DATE:
Thursday, July 12, 2012 Parent workshop
Thursday, July 19, 2012 Student workshop

TIMES FOR WORKSHOPS:
7:00 PM – 9:00 PM Eastern Time

WHY:
Prepare before you go
Consult and connect on site
Plan for various social situations outcomes


Workshop is limited to 10 participants, so register early to reserve your spot!

Email me for more information and to sign up today.

Sisterhood, NYTimes


I talk about safe friends on this blog, in my book, in coaching sessions and in the talks that I gave during the FAAN conferences about building food allergy confidence. Generally speaking, a safe friend, in my definition is: non-judgmental, supportive, flexible, open, understanding that food allergies are a medical need ("safe" for you is whatever you make it).  

Recently, the New York Times agreed (more or less): “Researchers have lately gathered abundant evidence that female friendship is one of nature’s preferred narrative tools.”  From the New York Times, The Spirit of Sisterhood Is in the Air and on the Air

"You have to have somebody to hang onto,” Dr. Seyfarth said. “A friend gives you an element of predictability and certainty, and you can use that to buffer you against all the things you don’t have control over. There’s a biochemical component to this.” A familiar friend calms and equilibrates, mops up the cortisol spills that can weaken the immune system, and in so doing may help lengthen life — in baboons, humans and other group-minded kinds. “Yes, having coffee with friends is good for you,” Dr. Silk said, “and we should all do it often."

Can you equally point to the supporters in your life who truly get your dietary restrictions? I hope yes! Now take that knowledge and help your child to find those people in their lives. Whether two years old or 20, safe friendships abound. Find them, lean on them. Need some assistance finding a safe friend? I’m here -  ask me!

The Cooking Chanel, Allergic Girl


I love that the segment for Al Roker’s My Life in Food that I did last year for The Cooking Chanel is still running – it means more of you might feel like this woman who Facebooked me:

"Just watched an episode of "My Life in Food" on The Cooking Channel, which had you... My daughter has multiple food allergies & its been a total roller coaster. Glad to know there's others who really do understand."

Here's the show if you haven’t yet seen it. From "My Life in Food":

Brené Brown, TED


I talk a lot about food allergy confidence and how to create it. 

An important component of confidence is acceptance of a medical diagnosis; that food allergies are real and serious. I know that many of us feel that food allergies are a vulnerability or even something to feel shameful about. But it is through acceptance of this "vulnerability" (and knowing how to take care of yourself) that we become stronger, confident and able to move through the world with more ease.

When you have a moment, sit back and watch these two popular talks from TED about vulnerability by Brené Brown. Let me know what it stirred in you. Brené Brown: Listening to shame and Brené Brown: The power of vulnerability.


"TED is a nonprofit devoted to Ideas Worth Spreading. It started out (in 1984) as a conference bringing together people from three worlds: Technology, Entertainment, Design."
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