Friday, August 30, 2013

Return of the Food Allergy Princess

I know that many people say that they get a once in a lifetime chance but I have truly been blessed with two. As you know, I had a super-secret away message on my Facebook page and it was killing me that I could not share with everyone right away. But, good things come to those who wait, right?


First, I would like to start this just like I did for the previous Mylan Blogger Summit- with a picture of the Empire State Building from the rooftop of The Strand Hotel on a balmy summer night. (Can you already feel the energy in the air?!) This trip was just as exciting but it was still full of mystery for me. I felt as if I was going to visit my extended family but I was unsure who would be there. I was nervous and excited but I knew this would provide so much information and I was ready for it.

I would also like to say that I am a big believer in the saying "Everything happens for a reason". I will say that I don't like to fly so when my flight was delayed due to weather conditions, I was silently panicking and arguing with myself in my head. Ok, so it will be fine but maybe I shouldn't go so maybe the flight will be canceled. No, wait, I HAVE to go- it's important. But my kids- what will happen if I crash?! Look at all of these people, are they thinking the same thing?? 

Just then, a woman started talking to me. She was a doctor form New Jersey (my home state). We caught a quick bite and it was comforting to me to relate on so many  topics. I have to say thanks Dr. Patty (I am waving but you can't see me). Oh, wait, here she is ----->  
Dr. Patty
Once on the flight, I started to tremble just a bit. We were delayed yet again. Stopped, on the plane, waiting...trapped. So, if I started to freak out now, I would pretty much be restrained, led off the plane in a nice cozy, white jacket and I would forever be labeled the food allergy blogger who went insane. This does not make for good business. It was then that I started to talk to the gentleman next to me (who, for the life of me, I cannot remember his name even though he told me several times. Sorry, it's a mom-thing). He asked what I did and I told him. And what does he do? He is working on a new food product and we wound up speaking the entire trip about ingredients and why some are better than others, etc. etc.... can you see how the universe works? Everything happens for a reason.

After a small snafu in unexpected flight departures, I got to dinner a little ruffled but this disappeared as the end of the table shouted "Tracy's here!" I was home. So I pulled up a chair next to George Dahlman of FARE (poor George, he had to put up with my loud, Jersey babbling), was spoiled with a delicious dinner and I had great conversations for the rest of the night with my fellow food allergy bloggers.

Judy & Lynda
The Gist of It (I would like to say that I actually Googled what "gist" means before I continued. I was curious, do you know what it means and why it's used? I didn't and I didn't want to sound silly.) What did Mylan bring us here for this trip? It was a collection of previous questions being answered as well as having some other great resources on hand to help put more pieces of the puzzle together. I was so thrilled to see Dr. Ruchi Gupta again as well as some new people such as Judy Morgitan (National Association of School Nurses), Lynda Mitchell (Kids with Food Allergies Foundation), Tonya Winders (Allergy & Asthma Network Mothers of Asthmatics) and Liana Burns (Asthma and Allergy Foundation). My fellow bloggers and I got to pick their brains about facts, laws, correct procedures and just about anything else that came up. Mylan knew what we needed and they provided. What will they ask? Here are the answers and here are the resources to give you even more answers. Awesome! If you have ever been in a room full of bloggers, especially food allergy bloggers, we mean business and we won't back down until we get an answer that will be anything short of the answer to help. It was not all business- we had plenty of chuckles in between to keep our blood flowing. Something about a cat sitter and a possible teaching video that was urged several times but not able to be discussed (you all know what I mean and I hope you are grinning like I am).

Tonya, Liana & George
The Facts and Nothing But the Facts Anyone and everyone who lives with food allergies touching their life in some form knows that this is a never-ending journey. Knowledge and research is always being updated and just as you think you know what to do, it changes again. But change is good- change gives us even more hope and lets us all know that there is a light at the end of the tunnel. Many of the ideas that have been ingrained in our heads is now changed. I was torn- so what I was doing and saying and advocating has been wrong? Yes but I was not the only one. Are we bad people for not knowing the correct way? No, never. That is why we learn more, dedicate our time and what keeps us continuing to fight for the answers.

Dr. Ruchi Gupta
The newest research indicates that the proper protocol for an allergic reaction and/or ingestion is NOT to wait and see. Many of you, including myself have been told to give an antihistamine and watch carefully then proceed with epinephrine if symptoms start to change. This is no longer correct. If there has been a known ingestion of an allergen, proceed with epinephrine and do not stop at go. Is your head spinning and questioning all of those scenarios and doctors just as mine did? The reason- there have been a lot of recent allergic tragedies in the news which shows how important it is to respond quickly. Allergic reactions can relapse, even after a dose of epinephrine. An allergic reaction can also worsen so quickly that the time you waited in between the antihistamine and actually administering epinephrine could literally be a life or death situation. Time is of the essence. Everyone reacts differently. Worried that you may be using epinephrine unnecessarily? Fact- epinephrine will not kill someone but a life-threatening allergic reaction will. Are you scared? I am too but like I said, change is good so embrace it and use it.

The other big topic was advocating for your child. Not only in school but with friends and family as well. Food allergies have some really interesting effects on other people in the families as well, not just the person who has the allergies. Did you know that 28% of families with food allergies have a strained marriage? There is often a primary caregiver in each family and unless this is shared and fully understood by both parents, the repetition of not working together as a family can cause friction. Be kind to each other, believe in each other and work together to keep everyone safe and happy. Caregivers often reported hostility from others as well as feeling socially limited because of food allergies. Learn to speak up and share. Many may never fully understand but giving them some insight of what you and your family are going through may be what helps them become a part of your family rather than exclude it. Many people fear the unknown so make it known.

Kelly, Cybele & Jenny
Lisa, Keeley & Lindsey
Now What? The last time I left the Blogger Summit, I had a list of things that I felt I needed to work on or achieve and I feel just as strongly this time around. I have new ideas, new projects and I feel as if the universe is confirming that what I am doing is what I should be doing, absolutely. I want to thank my hosts who I am ever grateful too- Lauren Kashtan (Mylan Specialty L.P.) and Suzanne Eisenberg, Christina Liotti &  Marissa  Magnetti (Chandler Chicco Agency) for continuing to empower me and to motivate me to do better, always. There is no greater gift than feeling you are on the right path except to be lucky enough to be joined by so many others that feel the same way. Much love to all of you~

All of Us

The list of food allergy bloggers (besides me) included Caroline Moassessi (Gratefulfoodie), Cybele Pascal (CybelePascal.com), Elizabeth DiBurro (Easy Breezy Life), Heidi Bayer (Brooklyn Allergy Mom), Jenny Sprague (Multiple Food Allergy Help), Joanne LaSpine (Food Allergy Assistant), Keeley McGuire (Keeley McGuire), Kelly Rudnicki (Food Allergy Mama), Libby Ilson (The Allergic Kid), Lindsey Steffensen (Frugal Food Allergies), Lisa Rutter (No Nuts Mom Group), Ruth LovettSmith (Best Allergy Sites) and Sloane Miller (Allergic Girl).

I disclose in any communication made by me about EpiPen (epinephrine) Auto-Injector and/or the Mylan Specialty Blogger SUmmit that such communication is at my own discretion and based on my own opinion. I also disclose that my travel expenses were compensated by Mylan Specialty in exchange for evaluation and feedback on information presented during the meeting.

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