0 Food Allergy Counseling: Your Middle School Aged Child and Talking to the Allergist

If you’re child was diagnosed with severe life threatening food allergies as an infant, most likely they’ve been going to allergist appointments for years. Also most likely, they haven’t been that involved with the appointment beyond saying yes or no when the allergist asks them a question. And that’s fairly regular.  How often do you proactively ask questions of doctors, e.g. what will these test tell us, what are the next steps, what do my symptoms mean, how can I proactively protect myself, etc.? And more to the point, how often do your children ask questions of their allergist or their medical professional? I’d hazard a guess that it’s not often.

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 adults with full, fun lives. An important part of that process is having them be involved in and take ownership over their food allergy diagnosis. Children need the medical facts to begin that process.

I cover the doctor patient relationship in a chapter in my book, Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011) and how to create a TEAM YOU with your medical team, as an adult. I’m suggesting you go a step further and encourage your middle school aged child* to engage their medical health professional team directly. 

It’s a game changer for you, your child, your family’s understanding food allergy and mainly, your understanding of how your child understands food allergy. 

An anxious child, one that is fearful of food allergy monsters, needs clarification of their food allergy diagnosis; how to identify food allergy symptoms and what they mean; to explore their anaphylaxis action plan and how and when to enact it; and to go deeper into risk management strategies. All with an eye to help them understand the real risks and the irrational fears and to learn how to separate those thoughts in their minds and in their behaviors.

Some ways to start this process will be encouraging your middle school aged child to ask questions of their board certified medical healthcare provider to get the real facts about food allergy as it relates to their diagnosis. My suggestions for how this process might look are: 

1. Make an appointment with your trusted board certified medical provider. Ask for a “consultation”. Tell them that your child has some questions about their food allergy diagnosis. Ask them if they would like these questions emailed ahead of the appointment. If they say yes, send them.

2. Ideally, the whole family would attend this consultation so everyone can hear the same messaging at the same time and underscore a consistent message to your child after the appointment.

3. Prepare for this appointment by having a conversation, or series of conversations, at home before your appointment. Ask your child about their food allergy fears. Write down a list together. While creating this list do your best to *just listen*. Many of your child’s fears will be implausible, irrational and make no logical sense and that’s why they’re fears, not truths. Do your best just listen. Without judgment. And be their scribe. These are their fears and they need to be heard.

4. My hope is they feel empowered to ask the scary questions, the ones that may be keeping them up at night, stopping them from engaging with friends or in sports or trusting your cooking. If they feel shy or uncertain, make sure those get questions asked in some form.

5. Help your child organize their fear list as many questions will be repeats. Refine the list to the must ask questions, the ones that are really troubling them. Bring this list with you to your allergist appointment. 

6. Encourage your child to ask the questions directly. Pediatric allergists (and pediatricians, in general) usually love when kids get involved and ask questions. 

7. Either have your child write down the answers or you record the answers. Ask the allergist how you may follow up with additional concerns or questions (via phone, email or appointment).

8. When you get home, make a copy of the Q&A. Keep one for your records. Keep a copy for your child’s special use. Ask them where you should put it so they can read it when they feel nervous or forget the answers. Many times I’ll suggest that food allergy counseling clients paste a copy in their child’s room, a reminder of the answers to their questions. It can become a fear versus reality cheat sheet. 

9. Let the information sink in. It will sink in over hours, days, weeks. Let it. 

The point of this whole process is to empower your child with real food allergy information so they can begin to separate their fears from reality. 

And that’s my next blog topic, the final in this series: helping your child separate food allergy worry from healthy food allergy vigilance.

***

Here are parts one and two 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.

Detail: Food Allergy Counseling: Your Middle School Aged Child and Talking to the Allergist

0 Food Allergy Counseling: Food Allergy Resources in Spanish

Here are two excellent, reliable resources in Spanish. Please spread them far and wide!

Food Allergy Research & Education has their anaphylaxis action plans in Spanish and English. You can download these free here.

AllergyHome.org has their Living Confidently With Food Allergy handbook in Spanish as well. Here’s the link and here more information about their guide from the AllergyHome.org website:

"Living Confidently With Food Allergy is a handbook created to get needed information to all that are managing a food allergy. It was designed to give parents the tools they need to keep kids safe while addressing their emotional needs. The handbook was the result of a two year North American collaboration lead by Anaphylaxis Canada. This free, easy to understand resource was written by Dr. Michael Pistiner, Dr. Jennifer LeBovidge and the Anaphylaxis Canada team (Laura Bantock RN, Lauren James, Laurie Harada).  It was reviewed by over two dozen American and Canadian experts."

Detail: Food Allergy Counseling: Food Allergy Resources in Spanish

0 Food Allergy Counseling: Your Middle School Child and Writing Down their Food Allergy Fears

As I discussed in this earlier post, the Middle School* years are a pivotal age range for kids. It’s the time that they start becoming more independent in many aspects of their lives. It’s a great phase – full of exploration, fun, special skills, deeper friendships and an understanding of their place in the larger world. 

For parents of kids with severe, life threatening food allergies, helping your child become more independent and responsible can have some added challenges. 

One of which is that your Middle School aged child frequently has new and deep concerns, fears and questions about food allergies and their medical diagnosis. A lot of them. These questions are different than a few years ago and they are different than they will be a few years from now; but these questions, if they go unanswered or are answered with half answers, can grow into massive, irrational fears. 

For example, *if* your Middle School aged child has:

--heard and processed half conversations (or even arguments) between you and your spouse about food allergies or their seriousness or their management; 

--picked up pieces from allergist and pediatrician visits but not the full story as they weren’t engaged in the conversation or even really a part of the office visit; 

--if they have been told misinformation by a well-meaning school teacher, who has no clue what they are talking about; 

--if they have read something online from an untrusted source (the definition of a Doctor Google); 

--or perhaps they have done what all kids do: heard one thing and then thought it meant something else because they didn’t have the knowledge or context to process it, they can end up with a lot of myths about food allergies and food allergy risk that they believe are true. And usually they really aren’t.

Your Middle School aged child needs answers to their food allergy fears and questions now in a new and different way. They are able to process complex information in a more dynamic way. So let’s let them get that new information so they can start to identify and separate real food allergy risk from food allergy fear.

Frequently with my Middle School aged food allergy counseling clients, I will ask them to tell me what their fears are and their questions about their food allergies and we write them down together. The general themes I’ve heard concern death, casual contact, how epinephrine works, needles and how to protect themselves. 

Let’s jump into the scariest one for everyone who manages food allergy risk: the possibility of death from an accidental exposure to one’s food allergen. 

A Middle School aged child understands death in a new and deeply profound way, perhaps even existential. The deaths they may have experienced like the death of a loved one, a beloved pet or even a friend or the parent of a friend has a different effect on their lives as a middle schooler than, say, a pre-schooler. Additionally, it is developmentally appropriate for Middle School aged children to start to ask and experience themselves as a human being in the world; even that there is even a larger world that they need to concern themselves with! 

This is an elemental question that Middle School aged children are grappling with and it’s our job to help them grapple.

Of course, as a parent (or a adult loved one), it can be deeply upsetting, difficult and heartbreaking to hear a child talk about their fears about death.

But parents, I urge you to first examine * your * thoughts, fears and understanding of food allergy risk. Children, as you know, are little sponges watching and listening to everything you do and they will mirror your feelings, whether you have expressed them directly or indirectly. If you believe deeply that your little one will grow into a self-sufficient adult with food allergies, they most likely will. If you have deep worries, fears about risk and allergens and managing them (and/or a history of anxiety), and believe there is danger and risk around every corner, your child cannot help but pick up this attitude, too, and mirror your worries and fears. 

Parents, maybe you still have questions about food allergy risk, diagnosis, definition or your anaphylaxis action plan? Get medical clarity, work with a therapist, talk to your partner about your concerns so you can help your child navigate this next developmental phase which is the beginning of how to be in the world and of the world (my favorite quote from the movie Sabrina.)

By the Middle School years, it is time for honest age-appropriate talk about real food allergy risk versus food allergy fear. And, as a family, this needs to happen together, ideally. 

Allow your child the space to express their fears about food allergies in words, drawing and in play.

Have them write down their questions about food allergies or help form their fears into actionable questions.

The next step is to take those questions to your trusted local allergist to get real answers which will help them learn how identify and separate real food allergy risk from food allergy fear.

My next post will cover this topic.

***
Here are parts one 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.

Detail: Food Allergy Counseling: Your Middle School Child and Writing Down their Food Allergy Fears

0 Food Allergy Counseling: Interview: Lily Roth of Food Allergy Survival Guide College Edition

During the 2014 FARE teen conference a few months back, I was following their twitter feed and discovered a new resource for teens entering into college: Food Allergy Survival Guide College Edition. Written by a teen Lily Roth, and her mom, Nancy Popkin, it offers excellent, first-person, real world advice about the whole college process, from choosing the right program for you through that first scary year on your own.  

*As with everything health and lifestyle related, please check with your medical health provider about your specific needs.*

I had a chance to ask Lily some questions about her excellent site. Read on!

***

Allergic Girl: What are your food allergies?

  

Lily Roth: I have anaphylactic allergies to milk, eggs, seafood, tree nuts, nightshade vegetables (potato, tomato, eggplant, pepper) and spices like cayenne and paprika, plus a few fruits and I don't eat wheat and soy because of another autoimmune condition. I also have asthma. 

AG: What was your motivation to create your Food Allergy Survival Guide College Edition website?

LR: I decided to make my Food Allergy Survival Guide College Edition website because I felt like teens with food allergies were kind of ignored. There is a lot of support for food allergy parents and young food allergic children, but after elementary school the support kind of ends.

For me, the whole college process was frustrating. During my sophomore and junior year of high school, my parents and I went and looked at six different schools within three hours of home. Some of the schools I did not like and the ones I liked, didn't seem to have the right program, were very competitive or were not in a desired location. The last school we visited was the University of Pittsburgh. I fell in love with it from the moment I toured; they had the academic program I wanted and they were in the perfect location. The only problem was that it was six hours from my house, and at the time my parents were a little nervous about me going far away.

At the beginning of my senior year of high school, I applied and accepted to the University of Pittsburgh before the end of September. I knew that I wanted to go to Pitt and my stubbornness was not going to let my food allergies stop me from going to my dream school.

After the frustration of getting accommodations for my food allergies and spending months trying to learn how to manage my food allergies and other medical conditions on my own, I realized I would have loved to have met someone who had done it before. I would have loved to have had a mentor who could tell me how they did it, and I know that my mom would have loved to have talked to a mom who had sent their child with food allergies off to college. And because of that Food Allergy Survival Guide College Edition (http://foodallergysurvivalguide.weebly.com) was born.

It covers college application to college graduation and everything in-between. It is also ever evolving and we are continuously adding to it so that we can keep it as up to date and as comprehensive as possible. 

  

AG: Who is the Food Allergy Survival Guide College Edition website for?

LR: While it is mostly geared toward food allergic high school and college students, there is also a parents only section and a section for college guidance counselors.

We also have a chapter of the guide that is geared towards newly diagnosed teens, and teens also managing other autoimmune conditions in addition to food allergies. 

AG: What tools and resources did you find most helpful in creating the Food Allergy Survival Guide College Edition website?

LR: I found my mom to be a very useful resource. She is an award-winning writer and she was very good at catching my spelling mistakes and writing content for the guide.

As I was writing this guide, I was simultaneously Co-Chairing a FARE committee of college students and parents that was writing a guide for FARE to put out for teens going to college with food allergies and their parents (the guide should be released soon).

The committee was helpful in coming up with tips for students going to college with food allergies, which I found useful. Most of the content though, has come from my own personal experience and things my family has found to be beneficial.

AG: What would you do differently now that you have been in college since the fall of 2014?

LR: I would worry less about what people thought about my allergies. I graduated from Abington Friends School in Jenkintown, PA. It is a small private Quaker school where everyone knows everyone and everyone is accepted for who they are. All the teachers and staff along with the students knew about my allergies, and it was just part of who I was--no one really cared ore judged me for them, but I was still the food allergy kid.

I went into college with the mindset that I didn't want to be the food allergy kid because I didn't want people to think I was weird or weak. I spent a lot of time the summer before my first semester worrying that I wouldn't find friends as amazing as my Abington Friends School Friends and that people were going to think that my food allergies made me weak and that they wouldn't want to be my friend because of them.

In the first hour of college, I learned that I was highly mistaken. No one really cares about my allergies, and I have found amazing friends who I love and trust to take care of me if I have anaphylactic reaction. 

AG: What are your three top tips for college-bound high schoolers?

LR:

1. Don't be worried about living in a single. When we went to the disabilities services for my apartment accommodation (because my allergies are too hard to accommodate in the dining hall) they told me they could only give me a single because they didn't think it would be safe to be using in mixed-use. For a while I was disappointed I couldn't have a roommate, but honestly I love having a quiet place to study when I need it, and the authority to invite over friends whenever I want without having to worry about bothering my roommate. 

2. Don't choose your college because of your allergies. If you don't go to the school that you love, you are not going to want to be there and college isn't going to be a fun experience. Choose a college and then figure out what accommodations you need to live there and study there safely. At one point, my parents wanted me to go to Temple, which is close to home and while it is a good school, I know I would have spend my entire time wishing I was at Pitt instead.

3. Carry your epinephrine autoinjector. Sure Epi-Pens or Auvi-Qs don't always fit discretely in your little black dress or in your jean pocket, but they can be life saving and the reason that food allergies are often fatal is because epinephrine isn't used fast enough. Even if you haven't had an anaphylactic reaction before, you can never be too safe. A really quick way to loose your parent's trust in your ability to go to college and be independent is to not have your epinephrine on you.

AG: Where can we find you?

LR:  You can find me volunteering as an EMT, doing community service, playing tennis or studying (you have to do a lot of that in college.) As far as social media goes, you can find our guide, Food Allergy Survival Guide-College Edition on Facebook (https://www.facebook.com/foodallergysurvivalguide) and Twitter (https://twitter.com/fasurvivalguide). You can also find me on Facebook (https://www.facebook.com/lily.roth.37) and Twitter (https://twitter.com/lilzforthrilz)

Thank you, Lily!

Lily Roth, used with permission.

Detail: Food Allergy Counseling: Interview: Lily Roth of Food Allergy Survival Guide College Edition

0 Food Allergy Counseling: Food Allergy Chef Cards

Every chef I’ve spoken to, without exception, loves receiving a chef card (or restaurant card as they are sometimes called) from their restaurant patrons. It cuts out the game of telephone and gets the information in a clear way directly to where it needs to go: the chef. 

In the past few years, more companies have started to offer cards, many more than when I started this blog back in 2006. Here’s a list of a few options. If you know of more, put a link in the comments below

Chef cards in multiple languages:
Allergy Translation - http://allergytranslation.com/
Allergic Traveler - http://www.allergictraveler.net/
Select Wisely - http://www.selectwisely.com/

Free downloadable chef cards:
Allergy Free table - http://www.allergyfreetable.com/chef-card.php
Food Allergy Buddy –  http://www.supermarketguru.com/food-allergy-buddy.html
SafeFARE card - http://www.foodallergy.org/document.doc?id=219

My client made her own wonderful card on printed stationary: http://anallergicgirl.blogspot.com/2014/06/food-allergy-counseling-custom-chef.html

Detail: Food Allergy Counseling: Food Allergy Chef Cards

0 Udi’s Gluten-free December 2014 Contest, #EatDrinkBeMerry

Udi's Gluten Free #EatDrinkBeMerry sent me some of my favorite tree nut-free gluten-free bread - white French rolls,  cinnamon raisin bread and bagels and their white bread and bagels -  in support of their contest where *you* can win some of their goodies. 

Here's one of my favorite weekend morning recipes using Udi's white bread: 7 Essential Ingredients for French Toast. 

Even simpler, yet equally delicious: cinnamon sugar toast. My bubby would make this for me as a snack when I was little and it never disappoints as a snack, breakfast or after dinner treat:

White bread toasted
Generous gobs of butter (or butter substitute)
A mix of cinnamon and sugar, sprinkled on top, in generous amounts.

What’s your favorite treat of any kind? You can submit your recipe entry on http://shop.udisglutenfree.com/eatdrinkbemerry or share a recipe using  #EatDrinkBeMerry on social media and be entered to win. 

More details, rules and regulations on the Udi’s website: http://shop.udisglutenfree.com/eatdrinkbemerry 

Contest runs through December 31, 2014 so get those recipes in and be entered to win!

Detail: Udi’s Gluten-free December 2014 Contest, #EatDrinkBeMerry

0 Food Allergy Counseling: Study from Northwestern Medicine: Risk Taking Behavior Among Adolescents with Food Allergy

My colleague, Dr Ruchi Gupta sent me the following information about a study she is conducting for teens ages 14-22.  

"The goal of this study is to learn more about the risk taking behaviors of food allergic adolescents – both in regard to general risk taking and risk taking as it relates to food allergy."  

*Nota Bene: I am in no way involved in any aspect this study.*

More information is below from Dr Ruchi Gupta at Northwestern Feinberg School of Medicine, Northwestern University:

Study Overview: Researchers at Northwestern Medicine are conducting a research study entitled “Risk Taking Behavior among Adolescents with Food Allergy," which is currently enrolling participants.  The goal of this study is to learn more about the risk taking behaviors of food allergic adolescents – both in regard to general risk taking and risk taking as it relates to food allergy.  In order to participate in the study, adolescents between the ages of 14 and 22 years who currently have a food allergy are being asked to complete an entirely anonymous and confidential electronic survey. 

No protected health or identifying information is being collected.  No compensation is being offered in exchange for study participation. All aspects of this research study have been approved by the Northwestern Institutional Review Board, IRB STU00097291.

If you are between the ages of 18 and 22 and are interested in participating in this study, please click on this secure link to access the anonymous and confidential survey [https://redcap.nubic.northwestern.edu/redcap/surveys/?s=TcT8XLeZeA].

If you are a parent with a food allergic child between the ages of 14 and 17 and have no objections to your adolescent child participating in this study, please forward him/her this link [https://redcap.nubic.northwestern.edu/redcap/surveys/?s=TcT8XLeZeA].  The link will take him/her to the completely anonymous and confidential survey.

If you have any questions prior to making your decision, please feel free to contact Jacquie, jacqueline.pence@northwestern.edu, or Dr. Gupta, r-gupta@northwestern.edu.

Detail: Food Allergy Counseling: Study from Northwestern Medicine: Risk Taking Behavior Among Adolescents with Food Allergy

0 Food Allergy Counseling: Interview with Tarah Jakubiak, Allergic Traveler

I first met Tarah at a FARE walk years ago when I was promoting my lifestyle guide  Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011) (available online or at your local bookstore). Tarah is another adult with food allergies who has create a business that support people with food allergies living their best fullest lives- yay!

Tarah created Allergic Traveler, food allergy chef cards in multiple languages that can be used for dining out as well for your child’s backpacks for when they are away from you or home. From the Allergic Traveler website:

“…what happens when you are traveling, for pleasure or business, and you need to communicate with the waiter that you are allergic to nuts in French? That is the premise behind this Allergic Traveler, LLC… All translations are done by native speakers in order to ensure the accuracy of such an important translation.”

As Tarah says:  “My ‘Allergic Traveler’ card has given me the freedom to see the world and I hope it can do the same for you.”

  

Recently, I had a chance to ask Tarah a few questions about being an adult with food allergies and how she got the idea for her business, Allergic Traveler. Want to read what I said to Tarah? Read more on her blog. 

*** 

Sloane Miller: What’s your personal connection to the food allergy community?

Tarah Jakubiak: I have lived with food allergies my whole life. As a child I was diagnosed with multiple food allergies after being rushed to the hospital for the umpteenth time; I stopped breathing. Eventually I was blood tested and my parents discovered the root of my hospital visits was due to my allergy to eggs, tree nuts, mushrooms, and shellfish.Today my whole list of allergens comprises of eggs, nuts, mushrooms, celery, peanuts, soy, garlic, chicken, pork, corn, shellfish, sesame and I have oral allergy syndrome (OAS) to most fruits.

Miller:  Tarah, tell us about your professional background:

Jakubiak: My background lies in marketing, advertising and sales management. I have spent more than 20 years working for companies to help their business grow. Having an extensive business background and multiple food allergies, I saw a need for our product, and I was completely aware of how to bring it to the market place.

Miller: What does Allergic Traveler do and what was the reason why you created it?

Jakubiak: I have traveled my entire life whether it is for business or pleasure. Around 2010, I went on a Mediterranean cruise. We would be stopping in multiple countries and I needed to be able to communicate my allergies in many languages. I started sketching out some cards. I realized there was a need for this so I created Allergic Traveler to use on my trip.

The reaction I received from testing out my product personally was overwhelming. Waiters actually thanked me for being so prepared. Shopkeepers were able to help me with my groceries. This reaction solidified the need to found Allergic Traveler and in 2011, we launched our online business.

Allergic Traveler produces dietary allergen cards for those in need of communicating their restrictions. Cards are available in English and 17 other languages. Each one is customized. They are available in wallet and luggage format. The luggage format is popular with young kids as they attach them to their back packs while on field trips or sleep overs.

Today people use our cards while eating out, while traveling, while away at college and in many other settings. 

Miller: What is the best piece of advice you have for people newly diagnosed with food allergies?

Jakubiak: To the parent of the food allergic child, I would say, “It will be OK. Trust yourself and your child will be well prepared. There are many obstacles that will be put in your way but take comfort in the fact that there are many more resources, including support, out there today.”

To the child or adult with food allergies, I would say, “Make the best of your situation. Become a great cook and spend some time learning new cuisines. Do not forget to give back to the food allergy community as only you can understand what we really need.”

Miller: What are your interests outside of work? What gives you joy?

Jakubiak:  I love to travel when I am not working. I like to experience a new culture, to get lost in new neighborhoods, to meet people with different customs, to learn about their cuisine, to absorb whatever they are prepared to teach me. And of course my loved ones bring me great happiness. No matter the situation to spend time with a loved one is always a gift and it never lasts long enough.

**

Thank you,Tarah, and Allergic Traveler for all that you do to support us getting out there safely!

Detail: Food Allergy Counseling: Interview with Tarah Jakubiak, Allergic Traveler

0 Speaking Event: Kids With Food Allergies, Sephora, Brooklyn, October 18, 2014

I'm thrilled to be speaking this SATURDAY, October 18 at 2pm EST Sephora Brooklyn at 210 Joralemon Street for Kids With Food Allergies about their new ACCESS KFA program.

“ACCESS KFA is one of our most important initiatives,” said Heidi Bayer, an AAFA Board Member and long-time supporter of KFA. “ACCESS KFA aims to create new educational resources to reach vulnerable populations who are at risk for anaphylaxis, a life-threatening allergic reaction. Through printed materials and local outreach, ACCESS KFA seeks educate families raising children with food allergies. The goal is to increase understanding of the serious nature of food allergies, how to avoid reactions, and the importance of treating anaphylaxis immediately treated with an injection of the life-saving medication, epinephrine.”

Other special guests and prizes and swag, all day long!

See some details below from Kids With Food AllergiesFoundation & Heidi Bayer, Brooklyn Allergy Mom:

Sephora Brooklyn

210 Joralemon Street

Brooklyn, NY 11201

Saturday, October 18

12pm - 6pm

Highlights: Meet Heidi Bayer, Brooklyn Allergy Mom and Sloane Miller, Allergic Girl and more!

Help us supply local food banks with allergy-friendly options by bringing shelf stable allergy-friendly foods. (I’m bringing some Enjoy Life Foods cookies.)

Sephora Brooklyn has special gifts for donors who give to the ACCESS KFA campaign.

Detail: Speaking Event: Kids With Food Allergies, Sephora, Brooklyn, October 18, 2014