Over the past few years we’ve had some great guest bloggers share their personal experiences with food allergies. We wanted to highlight some of our favorites for you below. These food allergy parents and advocates have some great stories and advice to contribute!

Dealing with a New Diagnosis of Food Allergy

This entry was written by Lynda Mitchell, founder and president of Kids With Food Allergies, a national non-profit food allergy support group. She discusses the confusion some parents feel when their child is first diagnosed with a food allergy.

Silent Aspirations

Susan Weissman, author of the blog Peanutsineden.com and a writer for the Huffington Post, is currently working on a memoir about the challenges of parenting her allergic child. Her blog focuses on her son Eden and the difficulties associated with eating out and being different from other kids his age.
 
Never Let Food Allergies Stop You!

The founder of AllergyMoms.com and author of One of the Gang: Nurturing the Souls of Children with Food Allergies, Gina Clowes, shared this blog entry with us. In it she shares Washington Capitals player Tom Poti’s message for children with food allergies.

Nick’s Story

After Karen Wylie’s son Nick was born, he often refused to eat and when he did he would cry in pain afterwards. Karen Wylie shared her story and how they were finally able to diagnose Nick with a milk protein intolerance, reflux and eosinophilic esophagitis.

Sam’s Story

Jodie DiMisa, mother of 3, shared her family’s experience. Her son Sam was diagnosed with milk and soy allergies and severe reflux. Unfortunately, that was just the beginning of her trials, because their insurance company wouldn’t cover the Neocate he needed to survive.

Eva’s Story

Chris Kozimor wasn’t sure why her newborn daughter Eva would not stop crying. After months of worry, her pediatrician diagnosed Eva with a milk protein allergy and she found relief with an elemental formula.

Do any of you want to share your experiences having a child with food allergies? Let us know and you could be our next guest blogger!

-Sarah

Our post today is a Q&A Gina Clowes, founder of AllergyMoms.com, provided us about her children’s book One of the Gang: Nurturing the Souls of Children with Food Allergies. We would like to thank her for sharing information about her book with us. The book is available from Amazon and also Barnes and Noble.

One of the Gang: Question and Answer
 
Why did you write this book? My passion has always been to enlighten others about the emotional toll of food allergies. There is the obvious need to care for our allergic children’s health but their emotional well being is equally important and often overlooked.

Who are you targeting? My target audience is young children 3-8 years old but I have many moms who have told me that they’ve purchased this for teachers, school nurses or relatives who really had no idea how our kids see the world, which was really my secret agenda.

Do you really have a secret agenda? My hope is that in seeing the world though our children’s eyes, other adults will realize how hard it is to be excluded and how good it feels to kids when they’re included. We socialize so often with food. It’s how we connect; we break bread. That birthday cake is the focal point of the celebration. It’s hard to be the one left out of that.

What do you hope to accomplish? Several things really. I want to validate the feelings these children have. Some people tend to deny their children’s feelings of sadness or anger or fear yet these are the same moms who come to our local support group meetings to share their frustrations. Kids need help with their feelings too and finding ways to cope is healthy.

I also like to help kids to put their food allergies in perspective. It’s just one part of them and they need to know that food allergies won’t stop them from having a great life and being everything they were meant to be. I’m hoping the adults in the book will help to make this point.

What is special about the adults in the book? The adults at the end of the book all have food allergies yet they’re thriving and living terrific lives. Since food allergies are invisible, kids don’t get to see that there are people all around them with food allergies. So I included photographs of food allergic adults such as Superbowl champ Jermone Bettis, an NHL Hockey star Tom Poti, Television News Anchors Lori Stokes , Dr Robert Wood, Mrs Maine USA, and more.

Why did you decide to use photographs instead of having it illustrated? There are a lot of terrific children’s books on allergies but most of them feature a talking animal character playing the part of a child with food allergies. My kids are very literal and my son actually asked me “Do elephants really have peanut allergy?” So I knew early on that I’d want to use pictures to make it real for kids like mine.

Why was it important to you to use children who have food allergies? When we set up different scenes in the book, such as the birthday party where one girl is eating a safe cupcake while all of the other kids are eating the birthday cake, I wanted the expression on her face to be authentic. I’m not sure a typical kid would “get” what this is like for children who have food allergies. Often we (allergy parents) can’t even get adults to understand.

What is the reaction to the book? Adults love that the pictures can express what words cannot say. Kids love the pictures of the adults and are thrilled to know that Super bowl champs, hockey stars, television news anchors and even beauty queens can all have food allergies and still be out there having fun. I had one teacher say that when she read it in class, it sparked a long conversation about differences and all of the kids were yelling out things that are different about them. It was as though they recognized that everybody is dealing with something and that is okay. That was music to my ears!

Neocate is now on Facebook!

Our post today is a special guest blog entry from Gina Clowes, founder of AllergyMoms.com and author of One of the Gang: Nurturing the Souls of Children with Food Allergies. We would like to thank her for guest blogging for us.

As Tom Poti skates by you at lightening speed, you might never imagine that a trace of peanut butter would be the one thing that could slow him down. Tom’s food allergies are so severe that even trace contact with it has caused serious reactions in the past. Yet, these allergies didn’t stop him from pursuing his dreams. Tom Poti is a National Hockey League defenseman for the Washington Capitals, and was part of the USA hockey team that won the silver metal in the 2002 Winter Olympic Games. Being a role model, Tom wants to share some important message with our kids: “Never let food allergies stop you!”

This is the most important message in my book “One of the Gang: Nurturing the Souls of Children with Food Allergies” and Tom Poti is the perfect person to deliver it. So I was delighted when Tom agreed to be part of my book and also grateful that he revealed more with me about his perspective on growing up with food allergies.

Tom Poti grew up in Worcester, Massachusetts and recalls that from early on everything he ate made him sick until extensive allergy testing revealed seasonal, environmental and multiple food allergies including: peanuts, tree nuts, chocolate, msg and fish.

Doctors recommended he participate in sports to keep his lungs healthy but playing outdoors often triggered asthma or seasonal allergies. Instead, he took up ice skating and soon after learned to play ice hockey. He quickly excelled at skating and within a few years, he gave up other sports in favor of playing ice hockey exclusively.

Over the years, he learned to manage his food allergies and asthma with the support of his parents and the watchful eyes of his friends. His parents knew it was hard for him at times, but they let him know that others were worse off than he. They focused on the positive and did not allow Tom to feel sorry for himself.

Early on, his parents started by teaching him foods that he could and could not eat. One key point was a rule that many allergy parents try to teach their kids: When in doubt, go without. Tom said his parents told him that “You can never go wrong by avoiding a food when you are unsure about the ingredients.” And “They would always either send me to the party with my own (safe) foods or feed me before I left for the event.”

Later, Tom got by with a little help from his friends. He says that friends were “always my second set of eyes –always watching out for any of the things that I needed to avoid.” He said that good friends should also know “exactly what to do if you have a reaction.” Even today, teammates will look out for Tom and let him know if someone is eating something that could be dangerous for him.

In the past, Tom acknowledged that there are “those people who are going to criticize you or make fun of you” but that many others are “willing to help you and be concerned about it and help you along the way.” Again, the lesson here is to focus on the positive.

I asked Tom about past “contact reactions” because many people dismiss them. Tom explained that several of his serious reactions were contact reactions including his last one a few years ago when he used a lotion that, unknown to him, contained nut oil. He also recalls a contact reaction that came on very quickly, while he was away at college. Tom touched a doorknob that his roommate had accidently contaminated with traces of peanut butter after eating a sandwich.

Tom said that contact reactions “are very serious because you never know when they can occur no matter how careful you are.”

Those of us with food allergic children know that it is hard for them when they are excluded from celebrations. Not surprisingly, Tom said that the hardest part of growing up as a child with food allergies was “not being able to eat some of the goodies at parties and things and not getting to eat my Halloween candy.”

Although Tom acknowledges that it can be challenging at times he has put it into perspective in his own life. I asked him what he would like children with severe food allergies to know and he said: “Although its very hard and tough on you sometimes, don’t let it hold you back from doing anything because there are safe ways around everything!”

Tom volunteers as a spokesperson for FAAN to let kids know that having food allergies need not stop you from living the life of your dreams. It certainly hasn’t slowed Tom down!

And someday, if Tom has a child with food allergies, he said he would simply “educate him as much as possible and teach him to be ready for anything.” Maybe even the Olympics!

 
 
Neocate is now on Facebook!

Gina Clowes is the founder of AllergyMoms.com. We would like to thank her for guest blogging for us and sharing her family’s allergy story.

Note: This article was originally written for Health Central: My AllergyNetwork.com. To view the article there, click here.

When my husband and I decided to have kids, I knew I would go back to work. I was one of those women who sneered at stay-home moms because “Motherhood is a relationship, not a career!”

I did end up going back after my first son was born, albeit part-time. I had a terrific job, an adorable son, excellent childcare (Grandma) and a meticulously clean house. After a few years, my husband and I felt another child would complete our family. Since moms are often more relaxed and experience the second time around, I looked forward to an easy time where I’d do an even better job as a parent now that I knew the ropes. I’m sure that somebody up there somewhere got a chuckle out of our assumption that we could improve on the perfection of the first.

After my second son was born, the option of returning to work immediately evaporated, and so did the option of sleeping more than three consecutive hours. My newborn son – who was supposed to be the “easy” one — was covered with head-to-toe hives on his second day of life and those hives stayed with him for years. The pediatrician joked that he had a “face that only a mother could love.” When we brought him home from the hospital, he also had terrible acid reflux and we could not lay him down for fear that he would choke on his vomit. It was frightening, and there was no parenting book or motherly advice that was going to make it go away. We changed his diaper for 2 ½ years with his head propped up on pillows.

His first year of life was a whirlwind of acid reflux, eczema, hives, ear infections and lack of sleep. The pediatrician said he’d grow out of the acid reflux. She told me to count how many times he spit up in a day. I stopped counting after eight times in 30 minutes. For his first 15 months, I slept sitting against the headboard of my bed with my son lying face down on my chest.

Confirming a Food Allergy Diagnosis
Every chance I got, I’d jump online to earn a few more credits toward my Google MD. I learned words like atopic dermatitis and urticaria and immunoglobulin E (IgE). After discussing this with my real doctor, she suggested I avoid dairy, then soy, then egg, then wheat, but still things were not better. Of course I was eating peanut butter rice cakes and munching on pistachios for protein. We did allergy skin testing and it was negative. (I later learned that infant skin sometimes does not contain enough mast cells to show a reaction.)

After numerous doctor appointments and conflicting diagnoses, we packed up our family and drove nine hours to New York City to the Jaffe Food Allergy Clinic at Mount Sinai School of Medicine. There, we were able to see one of the leading pediatric allergists in the country. I was hoping he would tell me I was just an anxious mom. But instead he confirmed that our son had over a dozen food allergies, some life threatening. He told us our son should never be without epinephrine.

That was the beginning.

The doctor explained that since I was breastfeeding, I had to avoid all the foods to which he was allergic, including milk, wheat, egg, peanuts, tree nuts, sesame, garlic, banana and more. It wasn’t easy, but unlike any reducing diet I’d ever gone on (and gone right back off), this one was for my son. Cheating on the diet was not an option.

The good news is that I fit into my jeans from college. The bad news is that I was so cranky, tired and miserable that no one wanted to be around me.

It was very difficult to go to parties or bunko or even out to dinner. I avoided so many foods that I’d really long for what others were eating. I knew that I was only on the diet for a limited time (six months), while my son would be on this diet indefinitely. It was only the first glimpse at how challenging his life would become.

Support From Friends and Family
As we shared the news of my son’s food allergies with friends and family, we naively assumed that they would rush to learn as much as possible and do whatever they could to accommodate him. Many pleasantly surprised us, but others never really learned enough to gain our confidence.

The pressure and stress that this invisible condition creates can affect everyone in the family. It is so important to get support from family and friends but also from other allergy moms and dads. There is a comradery there and an understanding that those outside the “allergy world” will never get. The exclusion and isolation that can occur is often just as difficult as managing the special foods and the potential for anaphylaxis.

Any mom can tell you that there is no greater pain in life than seeing your child hurt, physically or emotionally. Yet sometimes getting roughed up a little in life brings out the best in us and our kids too. We empathize with our son, but we teach him that food allergies won’t stop him from being every thing he was meant to be.

So this story ends with me back at work, but this time I don’t need to leave the house. I now facilitate a local support group and am active in food allergy advocacy. I have an online support group with thousands of members worldwide, and I have a children’s book due out this summer. This is not the life I would have ever imagined, but it’s a terrific one. We don’t get to choose our cards in life. All we can do is the best job we can with the cards that we’re dealt.

- Gina Clowes