On September 26, 2011 more than $130,000 was raised at the Inaugural Charity Golf Tournament in support of Dr. Robert Wood’s food allergy research at Johns Hopkins Children’s Center.  The dollars raised are a reflection of how much the community values Dr. Wood’s leadership and cutting edge research.

For a sneak peak from the event last fall, go to http://www.youtube.com/watch?v=qRPCYZ_5LUs

Fortunately, the committee has decided to make this fundraiser an annual event!  The 2^nd Annual Charity Golf Tournament will be held at Bulle Rock Golf Course in Havre de Grace, MD on Friday May 11, 2012.

For more information on how you can help improve the lives of millions of people around the world with life threatening food allergies, go to http://foodallergyresearchgolf.com/ .

Thanks and be safe,

Donna

Hello,

Sorry I have not been writing many blog posts.  I have been trying to complete my food allergy book which I plan to launch early this summer.  I will keep you informed!

Thanks and be safe,

Donna

Thanks so much to those of you who have been voting for me! If you haven’t heard, I’ve entered the Top 25 Food Allergy Mom Blogs search. The voting process is very quick. The website is http://www.circleofmoms.com/blogger/food-allergy-mom-doc?blogroll_id=40 . No sign up, no sign in. Just click on “vote”. You can vote once each day until Wednesday, November 16th. To see the complete list of great food allergy and gluten blogs, go to http://www.circleofmoms.com/top25/top-food-allergy-blogs-2011#_  Thanks again for your support!

                                                                                                                                                                                                                                                        Be safe,

Donna

Does this resemble your face at the thought of Halloween?

For many families with food allergic children, the ghost, ghouls­­ and goblins aren’t the problem on October 31^st.  Instead, it’s the tiny little packages filled with peanuts, tree nuts, wheat, soy, egg and milk that can strike fear in our hearts and stop us in our tracks….but they don’t have to.

I’ve been trick-or-treating with my kids for over a decade and would like to share some of the ideas I have read about and used in the past that have been helpful to our family in order to take the fright out of Halloween.

            Tips

• Feed children first!  Full tummies may find candy less tempting
• Enforce a “No eating” policy while trick-or-treating
• Take along EpiPens (nothing different here), cell phone and flashlight
• Have fun!

We always follow the 4 tips listed above.  When the kids were very young, they would visit 5 or 10 houses and were pooped!  Some of our neighbors, who were aware of their allergies, would give them safe candy or non-food treats. 

Each year, we come home and dump out all of the candy on the family room floor and the kids make two piles.  One pile is for the “safe” candy and the other is for the “unsafe” candy, which is removed from the house.  After the sorting process, I double check the piles and every year I am so pleased to see that they make more and more correct choices.

Although this may not be safe if your child is sensitive to contact, I believe the process of allowing them to determine what is and isn’t safe, with your guidance as necessary, is important since they will not always be with you and must learn to make these types of decisions on their own. 

Still looking for more ideas?  How about these food allergy friendly suggestions…

• Give safe treats to neighbors to hand out to your children
• Institute a Halloween Fairy/Witch or other type of bartering system where the kids trade candy for safe candy, toys, books, gift certificates etc.
• Have a Halloween or Harvest party instead of trick or treating
• Trick or Treat for a charity
• Have a treasure hunt at your house or in your yard with safe treats
• Have the Great Pumpkin visit overnight and leave safe candy or exchange candy
• Attend a special theme park, sporting event, aquarium or the zoo around Halloween
• Watch a movie such as It’s the Great Pumpkin Charlie Brown

Halloween doesn’t have to be frightening.  Hopefully some of these food allergy tips will keep you from being the “middle guy” and allow you to have FUN with your kids! 

                                                                                  Wishing you and your family a safe and…

                                                                                                                          Donna

Carry at least two doses of injectable epinephrine (­­­EpiPen), store properly and know how to administer in case of emergency.­­

• Before leaving the doctor’s office, make sure that you are shown how to use the EpiPen.

• EpiPen 2-Pak comes with 2 EpiPens and a training device.  Recognize which one is the training device (trainer is marked).  If possible, get several 2-Paks so that you can keep them at home, school and on your person.

• Teach family and friends how to use the EpiPen. If you or they need a refresher, there is a great video at EpiPen.com and a MyEpiPenApp.

• Practice periodically using expired EpiPens on an apple or grapefruit, just make sure that you dispose of the used EpiPens properly at doctor’s office or fire station.

• EpiPens can be carried in a purse, backpack, fanny pack, athletic bag etc.  There are also companies that sell packs specifically for carrying EpiPens and inhalers.  Just remember to avoid refrigeration and exposure to extreme heat or light. Do not keep in a hot car!  Replace if liquid is no longer clear.

• Effectiveness may decrease once expired (usually after 1 year) so remember to refill your prescription prior to expiration date.  Dey Pharma has an email refill reminder program.

Why at least 2 doses?

• It is estimated that approximately 20% of people with an anaphylactic reaction may require a second dose of epinephrine.

• Epinephrine doses may be needed to be repeated every 5-15 minutes, according to the National Institute of Allergy and Infectious Disease.

• If you are in a remote location, emergency crew is delayed, or symptoms persist you may need a second EpiPen.

• In some states, the basic life support ambulances may not carry epinephrine (only advanced life support ambulances).  Additionally, depending on the type of EMT on the ambulance, (basic, intermediate or paramedic) they may not be able to administer epinephrine, only assist you with your own medication.  For more information, see www.foodallergy.org.

• In the midst of an emergency, the EpiPen may be used incorrectly.  I have spoken with many people who have held the EpiPen upside down and injected their thumb. With the new design that states “needle end” in orange, this will hopefully occur less frequently.  Again practice when in a calm, relaxed state.

Be safe,

Donna

Waterparks, pools, mini golf and the beach.  What could be better?

Every year the kids look forward to vacationing at the beach and this year was no exception.  After a “strenuous” morning at the pool, it was lunchtime.  Instead of eating the BBQ that I had purchased,  they wanted to eat at the pool grill (which always seems more appealing!).

Until now, we had never had a problem eating at the grill.  I always went directly to the short order cook, said “hello”, and proceeded to tell him that my kids have severe food allergies.  Next I would ask my usual food allergy questions such as:

• What type of oil do you use?

• What other food is fried in the fryer?

• Do you have the ingredient list for the buns and chicken nuggets?

• What else do you cook on the grill beside the hot dogs?

• May I see the ingredient list for the chips?

This time, the cook had me at “hello” and not in a good way!  I asked what kind of oil they use to which he answered “Got me!”.  The staff had always been very friendly so I was a little taken back by his attitude.  Remaining calm, I asked if there was a label on the oil container to which he replied, “No!”.

That pretty much sealed the deal for me.  At that point I was wary of anything he prepared.  When I broke the news to the kids that we were not eating at the pool, I got the long face from my little one accompanied by,  “Why do I have food allergies? …I don’t like having food allergies!”

On to plan B.

The waitress recommended that we order from the main restaurant and bring the food to the pool.  I gave it a try but let’s just say …that didn’t go so well either!

Plan C?

BBQ sandwiches in the room!!  Thank goodness for microwaves!

Yum.  Great taste without the risk and drama! Ahh….

Be safe,

Donna

P.S.  That night we went to one of our favorite restaurants for dinner and the kids ate Alaskan King Crab legs to their hearts’ content and slept very, very well…

Tip #1  Confirm food allergy with a diagnosis from a qualified  healthcare  professional.

The diagnosis of food allergies can be very straight forward, as in Our Story in a Nutshell when my son had almost immediate hives and vomiting following ingestion, or can be very complex and challenging.  A thorough medical/food history is extremely important, which may be accompanied by physical exam, skin prick and blood tests.  The results of these tests must be interpreted correctly in order to make an accurate food allergy diagnosis.

Some pediatricians, family practitioners and internal medicine physicians are comfortable diagnosing and managing food allergies while others may refer you to an allergist.  If you are looking for an allergist, you may want to search on AAAAI or ACAAI.

If you have been diagnosed with a food allergy, you should avoid the allergenic food and obtain information on developing an emergency management plan.

For more information on diagnosing food allergies:

American Academy of Allergy, Asthma & Immunology (AAAAI)

American College of Allergy, Asthma and Immunology (ACAAI)

Guidelines for the Diagnosis and Management of Food Allergy in the United States: Summary for Patients, Families, and Caregivers (NIAID)

The Food Allergy and Anaphylaxis Network

Okay, okay. I may be dating myself, however I just saw a rolodex the other day which was a little neglected and dusty! It made me wonder which food allergy sites people are bookmarking or adding to the home screen of their smartphones.

I have listed websites, books and articles on my resources page which have been helpful to me however, there are many that I am not aware of. That’s where you come in!

* Do you have a food allergy business or website that you would like to share?
* Have you bookmarked a “go to” food allergy resource for the latest information?
* Do you have a favorite food allergy blog?
* Have you written a book on food allergies?
* Do you know of a great product that helps to navigate the world of food allergies?

We would love to hear from you! Please post any helpful links, books etc. by adding a comment so that we can grow the community! Thanks.

Be safe,
Donna

FOOD ALLERGY CARE PACKAGE

Have you ever received a care package while at away at school?   Remember the cookies, candy or personal notes?  Sorry, no food here since we are dealing with food allergies, however I hope that some of these resources will be helpful along your journey.  It may seem like a long time between your initial allergy appointment and your first follow up appointment (it seemed an eternity for me when my oldest son was diagnosed).  Even if you have been dealing with food allergies for years, you may find some of these resources helpful during transitions and different phases of your journey.

When your child has been diagnosed with food allergies, the diagnosis and management can be overwhelming. Please realize that you are not alone! According to FAAN, 12 million Americans have food allergies including 3 million children. While it can be frightening and frustrating, it is doable. With time and education, hopefully the management will become easier and stress levels will decrease.

Accurate diagnosis and education are key. Make sure that a qualified physician, often an allergist, has diagnosed your child. Carry at least 2 EpiPens (full strength or Jr.) and carefully read ALL food labels. Learn as much as you can about food allergies and allergic reactions including prevention, recognition and treatment.  Educate family, friends and anyone with whom your child interacts.

There are many resources to help you, your child and your family /friends deal with the daily challenges of living with food allergies. Here are a few that I have found helpful. I call it my “food allergy care package”.

Please realize that this is a partial list.  I have not read all of the food allergy books and each month new wonderful resources are being published and established online.  Feel free to add any resources you have written or found helpful.  Until next time…

Safety through education,

Donna

ORGANIZATIONS

FOOD ALLERGY AND ANAPHYLAXIS NETWORK (FAAN)
www.foodallergy.org
provides advocacy and education, free allergy alerts via email of food recalls
educational tools for children, parents, school system, annual conference

MEDICALERT
www.medicalert.org
Medic alert bracelets, necklaces etc. with your child’s identification number on the back which allows emergency personnel to contact you and obtain allergy information if you are not present

DEY PHARMA -EPIPEN

http://www.epipen.com/

video on how to use the EpiPen (can email to family and friends)

FOOD ALLERGY INITIATIVE
www.foodallergyinitiative.org|
excellent source of information concerning multiple food allergies, funds food allergy research

ONLINE SUPPORT

PEANUT ALLERGY.COM
www.peanutallergy.com
parent run website with many discussion boards

KIDS WITH FOOD ALLERGIES

http://www.kidswithfoodallergies.org/

online food allergy support group

ALLERGY MOMS

http://allergymoms.com/index.php

support for parents of kids with food allergies

LOCAL SUPPORT GROUP LOOKUP
(FAAN) http://www.foodallergy.org/page/support-groups-lookup

ADULT RESOURCES

DVD
(FAAN) DVD-One Bite Is All It Takes!
great to share with spouse, babysitters, daycare providers, teachers, grandparents etc.

BOOKS /PAMPHLETS
Food Allergies for Dummies by Dr. Robert Wood

The Parent’s Guide to Food Allergies: Clear and Complete Advice from the Experts on Raising Your Food Allergic Child by Marianne S. Barber, Maryanne Bartoszek Scott (Contributor), Elinor Greenberg, Hugh A. Sampson

The Peanut Allergy Answer Book by Michael C. Young MD

What’s to Eat? The Milk-Free, Egg-Free, Nut-Free Food Allergy Cookbook by Linda Marienhoff Coss

The Food Allergy Mama’s Baking Book

(FAAN ) Pamphlet – Getting Started With Food Allergies: A Guide for Parents

CHILDREN’S RESOURCES

YOUNG CHILDREN’S BOOKS

Allie the Allergic Elephant : A Children’s Story of Peanut Allergies by Nicole S. Smith

Chad the Allergic Chipmunk: A Children’s Story of Nut Allergies by Nicole Smith

No Nuts For Me by Aaron Zevy

The BugaBees Friends With Food Allergies by Amy Recob

The Peanut-Free Café by Gloria Koster

One of the Gang  by Gina Clowes

No Lobster, Please! by Robyn Rogers

Cody the Allergic Cow: A Children’s Story of Milk Allergies by Nicole Smith

Mommy, Is This Safe to Eat? For Kids Allergic to Peanuts and Tree Nuts, 2nd Edition by Christina Black

Taking Food Allergies to School (Special Kids in School) by Ellen Weiner

(FAAN) Alexander, the Elephant Who Couldn’t Eat Peanuts (series)

(FAAN) How Lenny Found Out About His Food Allergy

(FAAN) Anthony Goes to a Restaurant

YOUNG CHILDREN’S DVDs

(FAAN) DVD Alexander the Elephant

(FAAN) DVD Alexander the Elephant Goes to School

OLDER CHILDREN’S BOOKS

The Peanut Butter Jam by Elizabeth Sussman Nassau

(FAAN) Kim Goes to Camp

(FAAN) Andrew and Maya Learn About Food Allergies

OLDER CHILDREN’S DVDs

(FAAN) DVD Friends Helping Friends: Make It Your Goal!

CHILDREN’S WEBSITE

(FAAN) www.fankids.org

TEEN WEBSITE

(FAAN) http://www.faanteen.org

SCHOOL RELATED SITES

NATIONAL SCHOOL FOOD ALLERGY GUIDELINES -will be created

http://www.foodallergy.org/page/food-allergy-and-anaphylaxis-management-act-becomes-law

STATEWIDE GUIDELINES FOR SCHOOLS

(FAAN) http://www.foodallergy.org/page/statewide-guidelines-for-schools

FAAN

www.foodallergy.org

section on managing food allergies in school

reproducible Food Allergy Action Plans for your child’s classroom

Safe@School Program

School Food Allergy Program (SFAP)

Off to School With Food Allergies, Teacher’s Guide (booklet)

Off to School With Food Allergies, Parent/Teacher (booklet)

MASSACHUSETTS DEPARTMENT OF EDUCATION

http://www.doe.mass.edu/cnp/2002/news/allergy.pdf

PDF document on Managing Life Threatening Food Allergies in Schools

FOOD ALLERGY TASK FORCE – SPOKANE WASHINGTON

http://home.comcast.net/~ifast/FATF.pdf

PDF document on Managing Life Threatening Food Allergies in Schools

CALGARY ALLERGY NETWORK

http://www.calgaryallergy.ca/article.html

numerous school related articles including parents, students and teacher’s guides, sample letters etc.