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Guest Post by Lianne Mandelbaum
My family was scheduled to be on a flight from Denver to Newark on August 31, 2013. In the waiting area before we boarded, there was a family of five eating peanuts. I informed them that my child had an anaphylactic peanut allergy and we then moved to different seats in the waiting area. I also asked them if they were on our flight. Unfortunately, the kids weren’t just eating peanuts, but throwing them up in the air and missing their mouths as well as crushing them on the carpet. As my eight year old looks on with horrified eyes after I had already spoken to the parents, I started taking steps that I always do to try and keep him safe when we travel. I asked United to make an announcement on the plane that there is a child with a life threatening peanut allergy in seat 8A and to refrain from opening peanuts around him. This has been done as a courtesy on every United flight that I have taken. They refused to do this again and again as I spoke to multiple people on the chain of command. They stated that the flight crew was not going to make such an announcement and that this was their final decision. My son, at that point, is crying as they have been less than tactful in front of him and he is saying that "I don't want to die on a plane". Of course, we refused to board. The plane took off and then they took over two hours to get our luggage to us. They could not have been less helpful.
To bring an eight year old to tears and to terrorize him is unacceptable and needs to be published. United Airlines should be ashamed of themselves. I have since done some research and found out that, after a flight crew on United made the same refusal to a woman in May, she subsequently went into anaphylaxis on the plane and the plane had to make an emergency landing. The person who opened the peanuts, when interviewed, said if an announcement was made, they never would have opened them. All we wanted was basic awareness and decency. I have since filed a complaint with the Department of Transportation. My goal, however, is to bring awareness to the public of the perils of traveling with a child with life threatening allergies. Losing a child to a food is just so senseless. The public needs to be aware of the seriousness of food allergies. Please see Natalie Giorgio's story here. What a sad story. Food allergies can kill. The inconvenience a person might feel who really wants to eat that Reese's Peanut butter cup pales in comparison to the fear of what it must feel like to have an allergic reaction to those foods.
There are people who say that individuals, like my son, simply have to take great risks when using public transportation. I have to say that I strongly disagree. We can minimize these risks so easily. So why should we be castigated by the airlines for trying to do so.
I have since been reading online and speaking to other parents with allergic children and am shocked to hear so many similar stories. It seems like parents of children with food allergies are being "bullied" by the airlines. I have been told about families that have been refused entry on a plane just for informing the crew their child has an allergy. So if you inform the crew you
run the risk of being thrown off. There are also many parents I have talked to that just feel completely terrified every time they fly (especially on United). Funnily, United has just started a campaign using the old slogan "fly the friendly skies". I think its time that they were exposed for the "unfriendly skies" that families with allergic children and adults with food allergies face. Not only is the environment unfriendly but the staff is rude, unsympathetic and downright mean spirited. Jet blue and possibly Delta by contrast will make an announcement and will create a buffer zone to keep your child safe. They are empathetic and have always taken my son's allergy seriously. So there is a kind and safer way to behave and create safer flying policies. United would do well to emulate them.
A change needs to happen. Children and adults with life threatening allergies need protection. We are being "bullied".
The Perrin Post also published a story about this incident. Read the story here.
Sign this Petition Requiring Airlines to Institute a
Customers Bill of Rights for Children and Adults Flying with Food.
We talked about the social impact of food allergies at the Mylan Blogger Summit in New York City. I enjoyed hearing Dr. Ruchi Gupta's presentation on this subject as well as seeing her slides that she presented. She has been so kind to share these with our group.
The social impact is huge on your child when it comes to their safety and well-being. It is so critical to have friends in their lives that care about them and understand their food allergies. Having peer support keeps your child from feeling different and this means less risk taking and less bullying by others.
The social impact also affects the entire family. This can be when dealing with anyone you and your family interacts with on a daily basis. It can be family, neighbors, friends, schools and anything involving social activities. It can be hard getting others to really understand and accept your daily challenges. So it is so important to have people in your life that want to understand and be there for you and your family.
I came across a good article called "Social Consequences of Food Allergy" written by Catharine Alvarez. It is a good read and she references an article about a study that was published in Pediatrics called "Child and Parental Reports of Bullying in a Consecutive Sample of Children With Food Allergy." If you get a chance then I would check out both articles.
Please see the below slides courtesy of Dr. Ruchi Gupta:
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.
My Food Allergy Friends is a series of books geared towards educating young children about food allergies. There are currently two books available to purchase online and a third coming soon. The books are bright and colorful and offer a lot of ways to interact with your child while reading to them. To learn more about the books, please visit this website.
About the Author:
Jackie Nevard is a mother of two boys, one is 10 and the other is 4 & 1/2 years old. Her youngest son, Thai, was first diagnosed with seven food allergies and he has out grown four of them. Thai is now allergic to egg, dairy and peanuts. No one else in their family has food allergies, but Jackie's husband and her oldest son have allergies to grass. Her husband is also allergic to the medication Amoxicillin and Jackie is allergic to anesthetic medications.
Jackie was born in England and had a passion for traveling. After traveling the world three times, Jackie settled in New Zealand, married and had her first child. A few years later, Jackie and her family moved to Australia, where Thai was born.
When Thai was nine months old, he was diagnosed with a milk allergy. After the diagnosis, Jackie started educating Thai and the family about his food allergies. When Thai was 18 months old, Jackie turned to books to help with this, but she had trouble finding books that she could use to hold Thai's attention. They all seemed to be a little too long for a young child. This is what motivated Jackie to write her first book and from there she decided to start a children's book series called "My Food Allergy Friends." Jackie wants to help other families and children learn about their food allergies through these educational and fun children's books. To purchase a book for your child, please visit Food Allergy Friends.
I attended the 2013 Mylan Blogger Summit in New York City. This is my second year being invited and I must say that it was just as exciting and informative as the first. My favorite part of being back was reuniting with some of my fellow food allergy bloggers and meeting new faces from some of the best food allergy foundations out there. I also really enjoyed seeing my friends from Mylan. I really consider those ladies my friends and they truly care about our families and us. Dr. Ruchi Gupta was also there. I have so much respect for this lady. She is a great physician as well as a food allergy mom. She not only gets it, she has mutual respect for all of us food allergy moms. Being surrounded by all of these amazing people is such a great feeling. I have a lifelong bond with these women.
I learned so much at the Summit and I look forward to sharing some of the information in many upcoming blog posts and facebook posts. I encourage you to follow some of the bloggers below. I will also share their blogs on our facebook community page.
Back row, from left: Keeley McGuire, Liana Burns of Asthma and Allergy Foundation of America, Jenny Sprague, Cybele Pascal, Lindsey Steffensen, Elizabeth DiBurro, Tracy Bush Middle row, from left: Libby Ilson, Siobhan Cavanaugh of Mylan Specialty L.P., Kelly Rudnicki, Judy Morgitan of National Association of School Nurses, Dr. Ruchi Gupta, Lynda Mitchell of Kids With Food Allergies Foundation, Tonya Winders of Allergy & Asthma Network Mothers of Asthmatics, George Dahlman of Food Allergy Research & Education Front row, from left: Joanne LaSpina, Ruth LovettSmith, Lauren Kashtan of Mylan Specialty L.P., Lisa Rutter, Sloane Miller, Heidi Bayer, Caroline Moassessi
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.
My parents told me there was a time when you could smoke inside hospitals, even in the maternity ward. This sounds crazy to most, but that is how it used to be. You could smoke at your desk, in restaurants, airplanes, schools, etc. Studies show that second hand smoke can cause cancer, which can lead to death. So why is it so absurd that I ask you to refrain from eating anything containing peanuts and tree nuts around my child? I am not asking to ban peanuts and tree nuts everywhere, but if there are bans in certain areas then why can't people accept it? How is this different from a smoking ban in public places? Some people may not like the smoking bans, but they have accepted it. I don't see people fighting and protesting for their so-called "smoking rights" in these places. Is it because we have all lost someone to cancer? Is this why it is ok to ask you not to blow smoke in my face? Do we really need more deaths to show how serious food allergies are?
Yes, I know my child's world will never be completely peanut and nut free or smoke free, but why is it so ridiculous to some that I do not want my son around his food allergens? Shouldn't we all want to protect our children from any harm whether it is severe or minor? Is it really necessary for me to prove to you that my son is allergic to peanuts and tree nuts? Do you really want to see him have an allergic reaction? Here, let me show you how my son's eyes swell shut when he comes into contact with peanut butter. Really? I am over people looking at me like I am the crazy one. How would you feel if I come to a children's play place smoking cigarettes and carrying a gun? Would you and your child feel uncomfortable? Just a tad bit? Hmmmmmmm. So stop looking at me like I am the crazy one. You are for not understanding.
Non-food allergic parents also need to stop telling me to home school my child. I have a better solution.... If nuts are not banned from your child's school then I think all of the kids that choose to pack peanut and nuts for lunch can sit at a designated table for them. After all, they have a choice as to whether or not they want to pack peanuts or nuts. My child doesn't have a choice because his food allergy is a serious medical condition. So instead of excluding and isolating my child at the peanut and nut free table, I think kids packing peanuts and nuts can sit at a table strictly for those choosing to pack that for lunch. And if you don't like it then maybe you should home school your child. How does this sound to you? Well, it doesn't go over well with me either. Guess what, my child has a right to attend school just like any other child with or without a disability. And in case you didn't know this food allergies are considered a disability under section 504 of the rehabilitation act. So your child not being able to pack a peanut butter and jelly sandwich is not considered a violation of your rights. In these situations, the only rights being violated here are the rights of the food allergic child.
If you are a food allergic parent, there are a few statements that come across as being really insensitive and just plain annoying. One being, "What is the big deal, your child has a couple hives." "When I was a kid I used to get hives from X, Y and Z." Hey, not the same thing! These hives can be a sign of a life threatening reaction called anaphylaxis, which can lead to death. But unlike cancer, anaphylaxis can move and spread rapidly and kill instantly.
If you are a non-food allergic parent and someone asks you to make a very minor sacrifice to keep his or her loved one safe, what would you do? I would hope that you could understand and be willing to help out. Wouldn't you want the same for your child if they were the one with the food allergy? I would hope so. I am not saying that a peanut and nut ban is the solution, but I do think people need to be more understanding and willing to protect any child with any kind of food allergy.
Friday, August 9th is Kids With Food Allergies Freeling Friday on Peanut Free Planet and Allerrific!
On Friday, August 9th, 5% of all sales on Peanut Free Planet and Allerrific will be donated to Kids With Food Allergies. All customers ordering will receive a free gift bag with a dozen of allergy friendly products inside.
Here are just some of the allergy friendly products that will be included in your gift bag:
To learn more about KWFA Freeling Friday, click here.
I recently hosted my first Wildtree Party with some friends from No Nuts Moms Group of Michigan. Prior to the party, I knew very little about Wildtree, other than the fact that they are peanut free and tree nut free. I was so excited to learn more about the products. There were several samples at the party and all were very good and so easy to prepare. Everything is so healthy and it tastes good too. It was a lot of fun and I also got some really good products for my family to eat.
What is Wildtree?
*All natural, certified organic processor and handler of great tasting food products
*All products are peanut- and tree nut-free
*Many gluten-free products available
*No preservatives, including MSG
*No additives, including high fructose corn syrup
*No hydrogenated oils
The first thing I had to order was the Pad Thai Sauce. Prior to my son being diagnosed with a peanut and tree nut allergy, my favorite dish was Chicken Pad Thai. I haven't had anything with peanuts and nuts since. So when I heard that Wildtree had it, I had to try it. I made it for dinner tonight and it was very good. I will be making this dish again.
The second thing on my list was the taco seasoning. I am sure most of us have the taco seasoning packs in our pantry. My Wildtree consultant brought a pack of seasoning mix so that we could compare the labels. It is amazing how much healthier the Wildtree Taco Seasoning is compared to the store bought packs. I also found out that the majority of taco seasoning packs have an ingredient called Silica Gel, which is the little packs that you find inside purses or other items and it says across the pack "Do Not Eat", mixed in with the seasoning. Yikes, no thank you! I made the tacos the other night with the Wildtree seasoning and they were very good and the jar will last me quite a while.
I also made the Robust Tortilla Soup and it was a hit with my husband. The pack came with a seasoning pack and the recipe. I mixed the seasoning with water and then added chicken, tomatoes and corn. I then let it simmer for two hours and dinner was done. You can serve it with tortilla chips, sour cream and Monterey Jack cheese.
I haven't made everything yet, but you can see what I got in the picture below. Each of the items comes with a suggested recipe. I can't wait to make the Kids Cheez Blend. I am told by others that it is very yummy and kids love it as a substitute for Kraft Macaroni and Cheese.
If you are interested in hosting a Wildtree party, visit their website and locate a consultant near you.
Wildtree's Mission Statement:
Wildtree offers the highest quality herbs, spices and culinary blends that are free of preservatives, additives, fillers and promote a healthier lifestyle. We believe in the value of making cooking a quicker, easier, more healthful project for those who are short on time. Wildtree also offers a fun adventure for those who wish to be more creative in the kitchen. We offer our representatives the opportunity to earn unlimited income and have a home based business that allows them to live the American Dream.
I'm told that I over react and that I'm crazy...no child can react to just touching peanut residue. They weren't there when her eye was swelling up; her cries of fear became chokes from gagging. Hives were showing up on her face, neck and arms. She rubbed her face in panic because I'm told it feels like a million fire ants crawling all over your face as the swelling spreads and her lips tingle. She didn't eat anything with her allergens, I checked and rechecked everything. But she did touch peanut. How was I to know? Needing the Epipen told me so...
I’m told my child isn’t disabled. I’m told a dog isn’t necessary to save my daughter’s life. I have people snicker and point when we have the cashier wash off the register mat in case there is peanut residue on it. I do not want my child to be disabled, but the fact is that she is.
I’m told my child can live a NORMAL child’s life, but the fact is that she can’t. I’m told avoidance of her food allergens is enough to keep her healthy and live a normal life. I have to laugh at that.
So I guess when we pull up at a stop sign beside a playground and I have to tell my daughter she can’t go play in a playground with other kids because we have to avoid her allergen, and she cries with such a hurtful look on her face, that’s her living a NORMAL healthy life.
I go to the grocery store, this time alone. I see a sign for Hershey Amusement Park. I see other kids pointing to it…screaming with excitement to their parents. I think to myself, I can’t take my kids there, or any amusement park for that matter. But then again, avoidance is living a healthy NORMAL childhood life.
I see kids in the car carts at a grocery store being handed a cookie from a bakery worker. My daughter and son can’t take the chance of eating or touching peanut residue from the cookie, so I have to tell them no and listen to them cry because they can’t understand. But I guess that’s living a NORMAL healthy childhood life.
Oh look, “Toy Story 3” is out in theatres. Oh wait, I can’t take her to that either. They sell peanut product snacks and the seats are cloth seats that hold oils and peanut dust. But, again, that’s living a healthy NORMAL childhood life.
I see kids outside my house playing…I see some walking around with their parents, picking up rocks and just being kids in the dirt. Last time I took my children for a walk, Amylee almost stepped on a piece of a Reese’s peanut butter cup, and we came across 4 other wrappers for snickers, peanut butter crackers, butterfingers… So we don’t go walking all around the place, enjoying a stroll like other people can. I can’t always watch her 110% while watching my son who’s autistic. But then again, avoidance is living a healthy NORMAL childhood life.
A guy drives down our street every day with an ice cream truck and usually stops right in front of my house. My kids run over to the fence and stand there and watch all the other kids getting ice cream cones, and yes they have PB ice cream too. My daughter points and turns to me saying…”I want some mommy.” I have to tell her no. The scooper is dipped in water to be “cleaned” between scoops. She cries and sits on the ground while I try to get her to come inside for one of her icy, peanut free frozen treats. She just cries with a pitiful look. But then
again, avoidance is living a healthy NORMAL childhood life. But then again, avoidance is living a healthy NORMAL childhood life.
My daughter watches me wipe down everything so much, she is starting to not want to sit at the table at home until I clean it first. She actually points out where her brother might have gotten a drop of milk on the table, and she gets upset because it’s not clean. When she
accidently spills something, she completely stops eating and insists on cleaning it up before she continues. What child is so concerned with things being cleaned they actually get upset.
But then again, avoidance is living a healthy NORMAL childhood life.
Suddenly, you notice your daughter’s eye watering and starting to swell. Under both her eyes turns purple and her face starts to swell. She starts sneezing and coughing, mucus comes out of her nose, mouth and eyes and she is gagging. You lay her on the breakfast nook and
scream for your husband. You open a single dose of Benadryl and hope she can swallow it, and then get out her EpiPen. You pull her pants down and hold her hands back, count to her, one…two, three, and stick her in the leg with the EpiPen. Then you count to ten, like you’re
supposed to and pull it out, rub her leg while she starts wailing in pain. You pick her up and hold her to your shoulder while your husband calls 911. She starts shaking and sweating, her heart feels like it’s going to burst its beating so hard and fast.
“What happened?? What did I miss? What did she touch that I didn’t see?” You have a million questions running through your mind, including, “will she be ok?” The ambulance arrives and they take her to the back of the truck and load her in. She’s so cared laying there, strangers hanging over her. They hook her up to heart monitors and give her oxygen while they listen to her lungs and thankfully, they say, “Her lungs sound ok so far. You got the meds in quick enough. Good job mom. ”Did they just say good job mom? How is that a good job you think? You missed something somewhere…you weren’t careful enough. The only thing that comes to mind is she touched a deer on the mouth that everyone was looking at that YOU brought home after hunting. This would be a deer that eats tree nuts, including black walnuts. She also touched the neighbor guy’s grandsons hand before you could get her away. She touched him on the palm. He also was hunting and it’s common to have PB&J for kid’s lunches while hunting. Though, again, you’ll never know for sure what it was, since you couldn’t see it to begin with.
Five hours in a hospital, watching the doctors and nurses monitor your 2yr old daughter’s blood pressure go from unstable to normal and stabilize. Watching them undress her taking her clothes off of her because she was sweating and see the hives cover her tiny body. Watching her scratch until she almost scratched herself raw. Then she settled and passed out, she fell asleep from all her meds. You watched the nurses come in and try to wake her long enough to get steroid doses and stronger antihistamines into her. Hours later, you’re home. You’ve been told to monitor her throughout the night and next two days because anaphylaxis can return 24-48 hours without notice.
But then again, avoidance is living a healthy NORMAL childhood life. But again, there is no need for a service dog that can smell and alert you to peanut residue you can’t see so you can
avoid it. I'm crazy for thinking that. I wonder if those who chuckled at me would laugh after reading that true story that happened November 29, 2010.
As some people put it, I was crazy to put so much effort and money into a special service dog that smelled for peanuts. I was told it was a "waste of money." I was laughed at and told how many other people lived their whole lives with bad peanut allergies and never needed a service dog to live a "normal life". I even had doctors try to talk me out of it. So, what did I do? I didn't listen to them, I trusted my heart, and did what I felt was right for our daughter.
Our llives changed in the spring of 2011. We traveled to Colorado and spent two weeks being trained on how to be a service dog handler. This dog was one that changed our lives forever. Rex was trained by a professional K9 odor detection trainer to smell and alert to peanut odor. This allows us to clean it or avoid it and keep our daughter much safer. He's another tool in our tool box of prevention. He is a blessing with four paws, a wet nose and wagging tail.
After we came home with Rex and we started taking him places, he started showing us that the world was not covered in peanut. That summer, we packed up our Lysol wipes and Epipens and took our children to the amusement park for the first time in two years. Amylee got to pick the first ride, pink flying elephants. We took Rex over, he did his job, smelled the seat, the handle, the strap... no alert. I can still see Amylee's hands touching the ride while she climbed in...It was like in slow motion. My heart was in my throat. Both my kids were strapped in and the ride started. Seconds into it, Amylee exploded in laughter. She had the biggest smile I have ever seen on her face... She giggled and giggled.... I looked down at Rex and just started crying. There I was, in tears, hugging a dog and watching my kids on flying pink elephants. I must've been a sight! But it was right then that I realized that Rex wasn't just for my daughter, but he was for us too. Because of him showing us the world was not covered in peanut...Amylee realized it too and got her childhood back. That makes him absolutely priceless. That dog lifted a mountain off our shoulders. When we first got him, if Amylee walked out the door, Rex was with her. Now, after two years of having Rex, we only take him to places that cannot be controlled by using Lysol wipes. Like the playgrounds, doctors’ offices and places with cloth seats...etc. We do take him to places like grocery stores, etc to keep him in check with public places full of scents and people. All in all...it's an amazing life with Rex, but he wouldn't be the dog he is without the professionalism of his trainer and the trainers we worked with when we got him. I just can't say enough about how Rex has helped us and most importantly, helped our daughter. God has a reason for everything, and Rex was born to give our daughter her childhood back.
It's not easy being a parent of a child with multiple life threatening food allergies. That's the truth. Would I want Amylee any other way? Of course, I'd love for her to not have any health issues...what parent wouldn't? We're blessed she only has food allergies and eczema. There are much more terrible things she could have. But when she asks me why she has food allergies, this is what I tell her. "You...were made very special by God. He made you a bit different but he always has his reasons. We may not understand them, but we do have to accept them and trust Him. Because of you, I realized I wasn't the person I needed to be. I needed to have more patience, more understanding, take a little more time to know what's important in life...I needed to step outside of my comfort zone to try to make a tiny difference. Because of you, other people now know there are service dogs out there that can help them, like Rexy did for us. Because of you, we as a family now eats better than we ever did before...excluding a lot of prepackaged foods and turning to eating more fresh foods. Because of you, mommy stood in front of 1000's of people over the course of a year and talked with them about food allergies and service dogs, how they can help others with food allergies by
simply becoming educated about it. I mean, how many times did I not wash my hands after eating something with peanuts in it and just go into a store and touch clothing, or toys... I learned to be more aware of others because of you. Because of you, I looked more to God for understanding and learned I needed him more for not only my own emotions, but for my EVERYTHING. You and your food allergies changed my life for the better and now I am a better mommy to you and your brother. You slowed me down and helped me to take the time to enjoy every moment. You're not different in a bad way at all...you're a blessing in every way. Nothing in life is intended to bring you down...it's only intended to lift you up. ~ God bless
Food is such a huge part of our society and school these days. In school you have snack time, lunch and then all of the parties. You have 20 or more birthdays and then all of the holiday parties and after school activities. YIKES, that is a lot of food! Many schools still allow homemade baked goods into the classroom and the food allergic child is offered something else to eat or the mother of that child tries to emulate the other children’s cupcakes as best as she can. Hats off to you moms, but your child is being excluded. Not cool! And then you have the schools that require labels on any foods for celebrations. This is great, but only for the peanut and nut allergic children. And even then you have to trust that these people are checking the labels carefully before serving them to your highly allergic child.
I strongly believe that the best option for everyone is eliminating all food celebrations in the classroom. My son is allergic to peanuts and tree nuts so the label thing may work for him,
but what about the other kids in the classroom allergic to other food items, such as milk or eggs? My main concern is my son, but I feel as if I should also speak up on behalf of the
other food allergic children. I really hate the idea of any child being excluded because of their food allergies. I just feel this is unnecessary and there are so many other alternatives. I understand that food celebrations are a big part of our culture, but food allergies are on the rise and things need to change.
A lot of people do not realize that just because an item has a label on it without a peanut and/or nut warning that it is safe to eat. This isn't the case. The FDA requires manufacturers to label the top eight allergens if they are an actual ingredient in that product, but they do not require manufacturers to use labels such as "may contains" or "manufactured in the same facility". At this time, those statements are strictly voluntary and are not required. Fortunately, the majority of large manufacturers are using these statements on their labels. But it is always scary having a food allergic child try any new items whether they are prepackaged or not. For this reason, my family sticks to larger manufactures and we do not try a lot of new products.
The CDC has just announced that food allergies in children are on a rise and are a big problem. It has become an epidemic and we will continue to see more and more kids at school with potentially deadly allergies to milk, nuts, eggs, fish and the list goes on and on.