Monday, October 6, 2014

Reining in my fears

The rain pelting my windshield, water splashing with each set of tires trudging through the puddles and wet leaves blowing across the roadways reflected the turmoil I was feeling. I was freaking out about the task ahead as I drove to my sister-in-law’s house with a bag of peanut butter cups in my car. Eleven years after my son’s diagnosis with a life-threatening allergy to peanut, it was time for me to face a food that could take my child’s life.

I was finally ready to feed peanut to my 6-year-old daughter for the first time in an effort to prevent the potential for her to develop a peanut allergy. Pamela, who has no food allergies, safely eats all kinds of foods when we eat out that contain wheat, milk, egg, soy, sesame, mustard, strawberries and watermelon, the other foods to which Joseph is allergic. That’s not to say Joseph’s allergies to these foods are any less serious than his allergy to peanuts and tree nuts. He has been hospitalized from anaphylactic reactions to milk. But I feel like it is easier to remove milk and the other allergens from Pamela after she eats rather than sticky peanut butter or nut dust. Joseph has broken out in hives just from being near someone eating peanuts and had an asthma attack from walking near an eatery where peanut was being cooked in a food court.

Pamela was tested for food allergies as an infant due to her higher risk of developing food allergies as the sibling of someone with food allergies. Everything came back negative. But I was concerned, especially in light of current thinking about when to introduce highly allergenic foods, that her avoidance of peanuts would sensitize her to the allergen, possibly setting her up for an allergy. Despite my trepidation, I knew I needed to give Pamela nuts. I was worried that my 11-year avoidance could also sensitize me to peanuts.

I certainly don’t want my daughter to find out that she is allergic to peanut by accidentally eating it and having an anaphylactic reaction. So after a recent negative allergy test, our allergist advised us that Pamela should consume peanut in some form a couple of times a month.

We decided to keep the peanut butter cups, along with a washcloth and toothbrushes, at my sister-in-law’s house so that we could clean off any peanut residue before returning home, keeping my house a safe zone for Joseph.  

I looked at the tiny peanut butter cup with disdain as I cut it in half for Pamela’s first taste. I put the other half in my mouth while I kept my eyes on my daughter, ensuring that she was OK. After lunch, we ate another peanut butter cup. Physically, we were both fine. Pamela said she liked the candy but that she felt so weird eating something that she has always known she is not even allowed to touch.

The turmoil in me subsided a bit. I was relieved that, as expected, my daughter did not have an allergic reaction, and I knew that we took the necessary steps to ensure we did not put my son in danger. We chose great company for our peanut consumption, too. I really appreciated having family there to calm my nerves while distracting Pamela and me.

When we got home, Pamela was full of glee as she jumped up and down in huge puddles, using her pink rain boots to splash as far and high as possible. Her carefree spirit lifted the cloud I was letting hover as we faced another allergy-driven challenge. 

Friday, September 12, 2014

Dishing up comfort during relocation

Comfort food has been the star of my home menus lately. It’s no coincidence that dishes including chicken noodle soup with turkey meatballs, roast chicken with mashed potatoes, turkey meatloaf, beef stew and apple cobbler have graced our table during the month following our recent move out of state. Don’t worry, vegetables such as corn on the cob, roast cauliflower and tomato panzanella salad, made it into my family’s bellies, too. But let’s face it, the vegetables are not the part of the meals that offers the most emotional support.

After more than 18 years in North Carolina, we returned to New York for my husband’s job. The move capped a crazy year during which my husband lived with his sister in New York, while I was still in North Carolina with our children. So reuniting on a full-time basis was the best and happiest part of the move. We also are excited to be closer to our family members and friends in the area, along with being able to share with our children many of the wonderful parts of New York, a state in which we both grew up and met. But a move is always a big transition. Of course we are missing our family and friends in North Carolina, and we are missing the familiarity of an area we loved. While the kids are adapting to their new surroundings, it’s not easy to be the new kid, whether entering a new dance class or taking a swing on a new tennis court with all new kids.

So allergy friendly comfort food has been in order. But there was a method to one particular week’s lineup. I wanted to make a family favorite, chicken piccata, but I had no chicken broth. So I started the week making a roast chicken, then I used the chicken carcass to make broth, which also turned into the chicken noodle soup for that night. After a few days I was able to use the broth to make chicken piccata, much to my family’s delight.

Because of Joseph’s multiple food allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, strawberries and watermelon, I make homemade broth and freeze it in proportions ready to use for cooking. Frozen broth did not make the move with us, as our cooler was filled with all of the foods Joseph would need to eat during the week we stayed in a hotel while we waited for the moving truck to deliver our belongings. I brought a few pans so I could cook a some things at our house before all of my kitchen items arrived and packed lots of meals that I had cooked and frozen before we left, such as pizza, baked ziti and turkey meatballs.

I prepared for the travel part of the move, much like I prepare for our annual weeklong trip to the beach, which I wrote about in Living Without’s Gluten Free & More magazine in the 2013 article, “Road Trip”. The difference was that this time, I also had to make preparations ahead so that I could start to make our new home a safe zone for Joseph and to find an allergist so he could have an appointment and receive his immunotherapy shots (for environmental allergies) on schedule. I felt like I was transporting a top-secret product as I packed up his serum in a cooler for the long drive North to bring it to the new allergist. Thankfully, the local food allergy support group offered recommendations for an allergist, leading us to allergist we already love.

As we navigate our new surroundings and the weather starts to get cooler, I will continue to feature comfort foods on our menu. We are planning to visit an apple orchard this week, so I’m sure pork chops with apples will go a little way toward comforting my family in our new home.

Tuesday, May 13, 2014

Allergy friendly birthday celebration in focus

My childhood was filled with fun birthday parties featuring my mom’s homemade touches. When my son was born 11 years ago, I envisioned the same type of special celebrations for him. I was sure I’d be whipping up a batch of pancakes to start his day, cook his favorite meal for dinner, then throw a party complete with friends, family, cake, and fun and games just like my mom did for me.

But when Joseph was diagnosed with multiple food allergies 9 months after coming into this world, my vision for his future celebrations blurred. Perhaps some of that blurry vision was from the tears that accompany the feelings of fear knowing that a tiny speck of food formerly a part of everyday life could take his life, and the sense of being overwhelmed after his initial diagnosis by the huge task of figuring out how to keep him safe while navigating life with food allergies. Tears aside, I had no idea how I was going to pull off these birthday celebrations I had envisioned because all of the food featured in the birthdays I had experienced before contained something to which Joseph is allergic.

Joseph’s allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, along with having asthma, have made me even more determined to make his birthdays special. The celebration should be a time when the challenges he faces while navigating a life with food allergies and asthma can melt away.

Dry would be the best way I could describe Joseph’s first birthday cake. Perhaps it wasn’t just feeling overwhelmed from all of the guests singing “Happy Birthday” that made him cry so much when I brought that cake out. Despite that lack of success in the baking department the first year, we started a tradition for our children’s birthdays that makes sure to celebrate the birthday boy or girl, making him or her feel special from the theme they pick out, the activities, family and friends in attendance, and food free of all the allergens to which Joseph is allergic. The birthday parties we host are the only ones that Joseph does not feel different being the kid who has to bring his own slice of pizza and piece of cake.

As we celebrate Food Allergy Awareness Week on the heels of Joseph’s 11th birthday, I am happy to say that we’ve come a long way since his first birthday. Last week, Joseph had a blast during our family outing to a fun park for mini golf, go-kart racing and arcade games. His birthday fun continued when he and his dad went to see “The Amazing Spider Man 2”. We celebrated with a video game party at our home complete with friends, family, a video game challenge and other activities. The food, all homemade and free of the allergens to which Joseph is allergic, included fruit kebabs, chocolate Wii remote candy bars, two Wii remote cakes and ice cream. On his actual birthday, I whipped up pancakes and bacon for his birthday breakfast, and we enjoyed a birthday dinner full of Joseph’s favorites: chicken piccata, roasted potatoes, corn on the cob and a homemade chocolate chip cookie cake.

While we were digging into our dessert I thought about the vision I had for Joseph’s birthday celebrations all those years ago. Even though the allergy friendly ingredients of all of the food I made to celebrate his 11th birthday were different than what I had in my original vision 11 years ago, the picture of my son feeling special and having a blast celebrating his birthday was completely in focus.

Monday, March 24, 2014

Kyle Dine's allergy tunes resonate


Favorite singer: Kyle Dine. My 5-year-old daughter, Pamela, didn't hesitate with her answer as she was filling in a fun questionnaire. We have been enjoying the infectious tunes by the Canadian singer and songwriter Pamela's entire life. Both of his albums, "You Must be Nuts!" (2007) and "Food Allergies Rock!" (2010), hit plenty of fun notes while teaching about food allergies. Whether he is crooning about cool medical identification bracelets or listing all of the foods that might contain eggs, (with the help of squawking chickens, of course) Pamela is singing along with a big smile.

Both Pamela and my 10-year-old son, Joseph, were excited to see him perform recently when he brought his "Let's Go Nuts!" tour to Apex, North Carolina, thanks to our local support group NC FACES (Food Allergic Children Excelling Safely) and FAACT (Food Allergy & Anaphylaxis Connection Team). My kids remembered having a blast three years ago when they saw him perform, and they certainly were not disappointed with his upbeat concert this time.

Pamela had fun dancing right up front and she was proud to hold a Stop sign during Kyle's performance of "Stop! Please Don't Feed Me!" Both kids loved it when puppets Epi-Man and Epi-Man Jr. took the stage to perform their own, funny version of "The Fox (What Does the Fox Say?)"! Joseph was content to clap and stomp his feet to the music from his seat behind the younger, dancing kids. When Kyle asked kids to raise their hands as he called out each of the top 8 allergies and more, it was empowering for Joseph and the other kids with food allergies to see those other hands go up at the same time. With allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, Joseph's hand was in the air a lot. His face brightened when Kyle's hand went up for many of the same allergies. Kyle is allergic to peanuts, nuts, eggs, seafood and mustard. In addition to the empathy the concert offered, it also reminded Joseph that someone like Kyle, who Joseph considers a cool guy, could travel all over the world and succeed at something he loves to do. Joseph walked out of that room a little taller after Kyle took the time to talk to him about his tennis playing, too.

Pamela does not have food allergies. But she is part of another important group of kids — siblings of children with food allergies. She wants to protect Joseph when he's exposed to an allergen, she understands why she can't eat certain foods near him, she is conscientious about following the rules we have put in place to keep Joseph safe, she gets sad when he is feeling anxious or down about his allergies, and she gets scared for her brother when his asthma acts up. Joseph lives with the knowledge that one bite of food has the potential to end his life. It's important to remember that his sister lives with that knowledge about her brother, too. Not only do her feelings need to be acknowledged, but also it is essential that she be an expert on food allergies just like him. Kyle Dine is helping her be just that. The education he provides through his music and during his performances is invaluable both for kids with food allergies and those close to them. His upbeat music enhances the knowledge Pamela has gained at home with positive lyrics and fun tunes.   

Monday, December 16, 2013

Sweet snowballs and snowy travel


My daughter and I enjoyed making (and eating) the delightfully, tasty chocolate snowball cookies featured in the latest issue of Living Without magazine as a new addition to our variety of holiday treats. Pamela loved rolling the chocolate balls of dough in powdered sugar to give them all a nice dusting of "snow." While she gave the cookies a sugary coating, I was reminded of the way real snow altered our travel plans during our recent trip to New York. The wintery weather put my preparation skills to the test while traveling with my son, who is allergic to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, along with having asthma.

My husband and I, both from New York, were excited to give our children a taste of Christmas in New York City. They had a blast taking the train to the city, riding in taxis, walking through the crowded streets in awe of the tall buildings and lavish window displays on Fifth Avenue, visiting the huge tree at Rockefeller Center, watching the skaters glide across the ice, and doing some shopping, taking a turn making music on the famous piano at FAO Schwarz. The Radio City Christmas Spectacular was a highlight for all of us. Both of my children were enchanted by the show that showcases the famous Rockettes dancing in perfect time, along with Santa and even a 3-D feature. I was thrilled to share an experience with my kids that had given me precious memories during my childhood.

I was especially glad that Joseph was able to navigate Manhattan without letting his food allergies dim the magic. Of course, a lot of planning and precautionary measures went into making that happen. I employed the preparation that is highlighted in the story I wrote for Living Without magazine about road trips with food allergies. For example, before we hit the road for our drive to New York, I cooked and froze more than enough meals for Joseph for the length of our trip. Safe snacks, homemade muffins, bread and crumb cake that I had sliced and placed in individual containers, along with plastic cutlery, paper place mats, our safe hand soap, and plenty of wipes were packed. I ensured that all of my son's prescriptions were full and made sure his nebulizer with battery and car charger made it into the bag.

Each day we took the train to the city, we packed my husband's laptop backpack with Joseph's lunchbox and nebulizer. He wears two Auvi-Q epinephrine auto-injectors and I carry two EpiPens, along with his inhaler, at all times. It was important that he felt confident that we had everything he needed so that he could just enjoy his first trip to Manhattan. And he did. Both of my kids were so excited with all of the new things they were experiencing and they loved the time they got to spend with family when we weren't in the city. We had some fun bowling outings with their cousin, aunt, uncle and grandpa. That quality time with family was just as special as the bright lights and big buildings of the city.

But the winter weather threw a slippery wrench into our travel plans when we saw the forecast for snow and ice blocking our path back to North Carolina. The smart choice was to stay a day or two longer so we were not driving while the snow and ice was making the highways treacherous. But did I have enough food and medicine to keep Joseph fed and safe for an extended stay? This was the first trip where the fact that I always pack full prescriptions came in handy, so he had plenty of his maintenance and emergency medication. The food was another story. Thankfully, I had packed extra meals so he had enough for two more days with full meals and he still had plenty of snacks. I figured if necessary, he could have chips and applesauce for lunch on the drive home and he'd be fine.

So we decided staying two more days was the best option, until another storm was forecast, again right in our path, again starting early in the morning preventing us from beating it. When we added yet another day to our stay to wait out the second wintery blast, I visited the local natural food store where I found the brand of gluten-free pasta Joseph eats. It was easy to boil water in the microwave in our hotel room to make pasta that he could eat mixed with his applesauce, giving me two more meals for Joseph. I don't think he would have complained with chips, applesauce and a few cookies for lunch, but I felt better that I could extend his meals until we got home.

My kids were full of glee while they stomped around, gathering and throwing handfuls of the little bit of snow that fell where we were staying north of Manhattan. The extra time we stayed gave my kids a fun, snowy experience to add to their memories of the trip. I'm glad they enjoyed the snow, but for now, I'm happy to enjoy snowballs of the chocolate, sugarcoated variety.

Saturday, October 12, 2013

Coughing choruses fade for food allergy walk


Coughing, sniffing, sneezing, nose blowing and the hum of the nebulizer have been working together to create the soundtrack in my germ-filled house since the end of August. Bronchitis, sinus infections and walking pneumonia have been the source of those cough-filled choruses. With at least one person sick in my house for the past month and a half, I was happy for a change in tune today when we participated in the FARE (Food Allergy Research & Education) Walk for Food Allergy.

We are proud to walk each year in this fun event that gives my son Joseph a chance to see lots of other kids like him who navigate food allergies each day, and know what it's like to sometimes feel scared, sad and excluded because of a medical condition that he can't control. The walk also raises money for research that could someday find a cure. Joseph also has asthma, which studies have shown increase his risk for a severe allergic reaction.

It is that asthma that has made me listening for one sound during the past several weeks that is music to my ears — steady breathing. Anytime Joseph gets a respiratory illness, whether it's just a cold with congestion or a deep cough, I am on high alert to make sure his asthma is not flaring beyond control.

I've spent more nights than I can count during his 10 years staying awake to check on his breathing. Many times he's needed a breathing treatment and there have been several trips to the emergency room or urgent care when the home nebulizer treatment wasn't enough. Thankfully, during his latest sinus infection and cough, followed by another cold, his asthma has been manageable. I still kept my vigil and he's needed some breathing treatments via the nebulizer, but so far his lungs are cooperating. That doesn't change the height of awareness, but it helps me breathe easier.

Unfortunately for him, all of this sickness started just when Joseph was getting back into the swing of things on the tennis court after being sidelined for more than a month with three broken fingers. Two months ago, my son was diving for a ball during a friendly tennis match and he landed on his hand with his fingers still wrapped around the racquet. His injured hand and then sickness took him away from his favorite place. The tennis court is where he feels happy and confident, unencumbered by any of the things that worry him.

Joseph has gained an extra appreciation for his time on the tennis court. He is glad that his asthma does not hamper his ability to play his favorite sport. Sure, he might miss a practice when the air quality is especially bad or if his asthma is already flaring. But exercising does not trigger his asthma, and for that I am grateful.

I was so glad to see him smiling on the tennis court again last weekend before his new cold arrived. In fact, I had almost thought we had conquered the germs except for a slight cough in my daughter, Pamela. We took advantage of a few somewhat healthy days to go to the pumpkin patch, play tennis and see a movie. However, after Pamela's cough worsened and a fever blossomed, we were back at the doctor. This time with a diagnosis of walking pneumonia, or as Pamela calls it, walking "puponia".

Today, with Pamela on the mend with her illness no longer contagious and Joseph healed from his cold, we were happy to exercise during a walk around a beautiful lake in our area.

I'm happy that the sound of feet walking with a purpose replaced the germy soundtrack of my house for a couple of hours as we walked to say "FAREwell to food allergies."

Wednesday, May 8, 2013

A decade of love on and off the court


It is not unusual for my son to beat me when we play tennis and for my score to remain at "love" the entire game. The word "love" often is used in a positive way, but unfortunately for me, not when it comes to tennis scoring. That's OK. The tennis court is a place that makes my son the happiest and for that, I'm fine with having the "love" score because of the feelings I have had for my son for a decade.

We just celebrated Joseph's 10th birthday. Ten years ago when my tiny baby came screaming into this world (right along with me), my husband and I had no idea that we would soon be entering life with food allergies. He had 10 tiny toes and 10 perfect little fingers. Our biggest debate was whether he would be a Penn State fan like his Mama or a West Virginia fan like his Dada. Well, even that turned out to be a surprise — my child is a Gators fan.

Within Joseph's first year of life he had his first anaphylactic reaction to dairy. One small teaspoon of yogurt and suddenly we were going down an unfamiliar, scary path. During the past 10 years, we have learned so much about Joseph's life-threatening allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, along with his asthma. As our son has grown, so has the world of food allergies.

During Joseph's life, the number of people with food allergies has increased to about 15 million Americans, including 1 in 13 kids, according to Food Allergy Research & Education (FARE). With that growth has come more allergy-friendly products, advances in research regarding food allergies, laws to require better labeling and to ensure that epinephrine is required in more schools across the country, and even more options in the type of epinephrine self-injector available to save lives. The amount of support and resources has increased too, especially thanks to social networking. There are several products geared toward food allergies, such as cookbooks, children's books and even music, especially the songs written and performed by food allergy musician Kyle Dine.

But there is still much work to be done. For example, more research is essential to find a cure for food allergies. There is a need for more education about food allergies so that our children are not bullied and so caretakers understand all of the foods and products in which allergens show up, and that even one tiny speck of that allergen can mean the end of a child's life.

We have had plenty of challenges (both medically and emotionally), scares, trips to the emergency room and doctor visits. My love for Joseph makes my heart break when he feels anxious about unsafe food being near him, isolated when he's left out because of his food allergies or scared when he has trouble breathing.

But those challenges are just a part of living with food allergies. We have navigated food allergies and asthma while nurturing our sweet, funny boy and fostering his positive attitude while teaching him how to safely enjoy his life. As I watched Joseph play in a recent tennis tournament, I was thrilled to see him healthy and happy as can be running around the court.


I am so proud of my 10-year-old boy, whose inquisitive mind makes him a joy to talk to, whether we are discussing a book he's reading, trivia he has learned about his favorite tennis player Novak Djokovic or the latest Lego creation he is dreaming up. Just like lots of kids his age, he likes when I make pizza for dinner, has fierce competitions with his Dad on the Wii, cheers for his favorite hockey team, plays with his little sister, rolls his eyes when I embarrass him and has fun with his friends.

The day before his tenth birthday Joseph wrote in his journal: "When I'm 10, I want to read more, make more Legos, play more tennis, have fun and be a kid."

So as Joseph stands across from me on the tennis court and serves, — 15-love, 30-love, 40-love, game — I'm just happy to be a part of a game he loves.