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Mylan Blogger Summit

1/31/2013

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I had the pleasure of attending the Mylan Blogger Summit in New York City.  The summit was a great opportunity for all of us to come together in one location.  It was very inspiring and empowering to be surrounded by the amazing ladies that attended.

The attendees included Dr. Ruchi Gupta, Sloane Miller - Allergic Girl, Caroline Moassessi - Grateful Foodie, Cybele Pascal - The Allergy Friendly Cook, Elizabeth DiBurro - Easy Breezy Life, Heidi Bayer - Brooklyn Allergy Mom, Irene Chu - Get Allergy Wise, Sarah Chuck - Get Allergy Wise, Jenny Sprague - Multiple Food Allergy Help, Joanne LaSpina - Food Allergy Assistant, Kelly Rudnicki - Food Allergy Mama, Kimberly Pellicore - The Food Allergy Mom, Libby Ilson - The Allergic Kid, Lindsey Steffensen - Frugal Food Allergies, Missy Berggren - The Marketing Mama, Ruth LovettSmith - Best Allergy Sites, Tracy Bush - Food Allergy Liaison and Lauren Kashtan - Mylan Specialty L.P.
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On our first night, with the help of Sloane Miller and the Chef from the Strand Hotel, Mylan arranged a wonderful dinner in a very intimate setting.  It was so nice to be in the same room with all of these wonderful women that I have been following since my son was diagnosed with life threatening food allergies.  Every single person at that dinner table had a very strong connection to food allergies.

The following morning was the Mylan Blogger Summit and it was a day full of knowledgeable speakers providing us with great information.  We also had the chance to interact with each other and share stories about our fears and concerns.  All of these women truly get how it feels to be a parent of a child affected by life threatening food allergies.  

Sloane Miller was one of the guest speakers and she is truly an inspiration.  She has been dealing with food allergies her entire life and she is very educated on the subject.  Like many of you, I have met others with food allergies and to hear them take their food allergies lightly is very concerning. It is especially concerning when you have a child with these same types of allergies and knowing that one day they will have to go out into this world and manage them on their own can be scary for a parent.  I know all of us will be very happy if our children grow up to be able to handle their allergies the same way as Sloane has. She knows the severity of her food allergies and she still lives her life to the fullest.  She owns them and she doesn't apologize for having them.  I learned a lot from her and I will share some of her tips and suggestions in a separate blog post.  Watch the video below about her book "Allergic Girl."
Dr. Ruchi Gupta was another guest speaker and it was great to have the opportunity to hear her speak about food allergies.  Dr. Gupta is an Associate Professor of Pediatrics at the Northwestern University Feinberg School of Medicine's Center for Healthcare Studies and the Ann and Robert H Lurie Children’s Hospital of Chicago.  She also wrote a book called "The Food Allergy Experience."  Here is a quote from the book, "Care was needed everywhere a child was-at home, school, camp, friends' homes, families' homes, vacations, restaurants....
everywhere.  Little did I know that I would also join the group of families having a child with food allergy."  Watch the below video featuring Dr. Ruchi Gupta discussing the prevalence, severity, and distribution of childhood food allergy in the United States.

Watch June 20, 2011 - Food Allergies on PBS. See more from Chicago Tonight.

Thank you Mylan for bringing us all together.  I know we all truly appreciate and valued the expereince. 
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Catrina and Asher's Story

1/27/2013

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Catrina Quintana is a stay at home mother and home schools her two boys.  Aadyn is her oldest and is eight years old with no known food allergies or intolerances.  Asher is six years old and has asthma, allergies to peanuts and tree nuts, and has many other food sensitivities.  There is no history of food allergies in their family.  However, Catrina’s grandmother has food intolerance to seafood, but she didn’t develop this until she was in her 70’s.

Prior to Asher being diagnosed with food allergies, he  experienced two severe reactions.  The first was at his grandparent’s house and the other was at the allergist during skin testing.  In February 2011, both boys tried a piece of Almond Roca.  Asher immediately spit it out and was crying and scraping at his tongue.  Catrina wasn’t sure what was happening.   Asher’s face began to swell and he started coughing.  Catrina grabbed her son and  hooked him up to his
nebulizer and quickly ran to a close store to get Benadryl.  Catrina held her son tightly and soon after, Asher was fine and off playing again.  She decided to call the doctor’s office.  They were able to see Asher right away and advised her set up an appointment to see an allergist. Looking back, Catrina would have handled this situation differently, but she said, “I had no idea the severity of the situation.”  
The second severe reaction occurred during his skin testing at the allergist’s office.  At the time, Asher was four years old.  Within 30 seconds of the skin testing, his back was really bad.  He was pale, crying, his voice was raspy and his stomach hurt.  The allergist didn’t administer an Epipen, but they closely monitored him for a long time. Catrina said, “It felt like forever.” The allergist then informed them of Asher’s food allergies
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In the car on the way to get treatment for an asthma attack. Possibly food induced.
Catrina knows she should have suspected food allergies several times, but it just never crossed her mind.  She now recalls times when Asher and his brother were eating peanut butter and Asher would complain that his tongue burned.  She just thought that he didn’t like it and decided to no longer give it to him. 

I asked Catrina to share some of the challenges she and her family have faced and she said that her biggest obstacle has been family members that just do not get how serious it is. There have been many times when she has tried to explain the severity of Asher’s food allergies, but at family functions they continue to serve desserts with peanuts and tree nuts.  Catrina has learned that no matter how hard you try, others are never going to understand how hard it is to have a child with life threatening food allergies.  
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Another challenge has been the constant fear of food.  Catrina herself doesn’t have food allergies, but being a mother of a child with life threatening food allergies, has made her scared of food.  Catrina said, “My husband and I just try our best to constantly encourage him and to not disregard his fear of food, but to show him that he owns his food allergies, food allergies don’t own him.”  Catrina said that she wants Asher to not let food allergies stand in his way.   She said, “I want him to know how to handle every
situation.  I want him to be whatever he wants to be.”

I know all of us can relate to Catrina and her family.  When I write and share these stories,
I feel like they are all very similar to mine. In the beginning, we didn’t know what signs to look for or what to do.  There needs to be more education about food allergies early on.  Parents need this information before it happens.  There needs to be some type of education given to new parents regarding signs of food allergies and anaphylaxis.  I wish this could start in the pediatricians’ office.  Why can’t it?  When I brought my son’s food allergic reactions to my pediatrician’s attention, they were dismissed.   I trusted what they told me and so I ignored the signs.  There needs to be more education not only with new parents, but with all doctors caring for our babies and our children. 

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    Lisa Rutter
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