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.

Thursday, April 4, 2013

Frozen pizza to the rescue

Last week, I was caught less prepared than I would have liked for an unexpected trip. In a blog for Living Without magazine, "Best-Laid Plans", I discuss my concern about my less-than-stellar backup food supply to feed my son, who is allergic to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, in unplanned situations. 

But tonight, I found one more tool to help in those situations — Daiya frozen pizza. I never thought I'd be able to buy frozen pizza for my 9-year-old son and was so excited to find Daiya's new product at Whole Foods yesterday. We already love using Daiya cheese shreds to make our own pizza, nachos, baked ziti, grilled cheese and more. But to be able to put a pizza in my cart that could be ready in less than 15 minutes for a safe, quick meal is a convenience for which I am grateful.

Joseph had a bit of trepidation about trying the cheesy slices. After all, he is used to eating only food I make — not a meal out of a box. But I assured him that I spoke to a very helpful Daiya Foods representative about the ingredients. And once I showed him the box that says the product is free of the top 8 allergens and my email from the Daiya Foods representative, who confirmed it also being free of sesame and mustard, he was ready to sink his teeth into a slice. The pizza was a hit with both of my kids, who were also excited about the novelty of eating a frozen pizza.

While frozen pizza won't replace the homemade pizza I already make for my children, I'm glad to have a new tasty option to keep in my freezer. I'm thankful that I can turn to Daiya to rescue dinner on a hectic day or on an unexpected trip.

Sunday, March 17, 2013

My Irish eyes are smiling


I'm not sure if it was the luck of the Irish, but I was certainly feeling blessed today. Shamrocks, leprechaun mischief and green-colored food mixed with Easter baskets and colorful eggs as we celebrated two holidays.

We had already spent some time during the week focusing on St. Patrick's Day in our homeschool with some writing assignments, learning games and crafts. Preschool math games, such as shamrock graphing activities by Inspiration Laboratories, are great because not only do they provide a fun way for my 4-year-old to learn, but also they give my 9-year-old a chance to help guide his sister with an activity that won't make him roll his eyes. Crafts, such as the "Roll a rainbow" by The Mailbox, also cross the age difference between my kids. They both enjoyed rolling toy cars in various shades of paint and using them to create a rainbow with a glitter-filled pot of gold at the end, of course.

It is such a treasure that there are so many ways to celebrate holidays with fun activities so that Joseph doesn't have to focus on his allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, along with having asthma. But we also enjoy baking yummy, safe treats to celebrate, and I'm thankful that there are plenty of allergy-friendly options celebrate the bit of Irish in our heritage.

My children started the day following a shamrock trail to a green pot with some leprechaun prizes before eating shamrock-shaped toast topped with green sugar sprinkles, along with fresh fruit. Then we started planning our treat-baking schedule for the day. We made allergen-friendly chocolate cupcakes topped with green frosting, then made rolled brown sugar cookies from Cybele Pascal's "The Allergen-Free Baker's Handbook" into the shape of shamrocks. Once those were covered in green frosting and purple sprinkles, it was time to prep the turkey shepherd's pie so it would be ready when we returned from the Easter egg hunt.

As I watched my son help hide eggs for our food allergy support group's annual food-free Easter egg hunt and my daughter so absolutely excited to be searching for those colorful, prize-filled plastic eggs, I was reminded of how lucky we are to be part of NC FACES (Food Allergic Children Excelling Safely), a group that has helped us navigate food allergies for most of Joseph's life.

When Joseph told me he felt too old for the egg hunt and would like to volunteer to help hide eggs instead, I wistfully reminisced about all of the years when he was one of the young kids gleefully running across the field to fill his basket. But once again, NC FACES came through and gave him a fun, safe experience. This time, he was proud to be one of the big kids helping an original NC FACES member, Marysa Gavankar, who ran the event at a local park today. She had creative crafts ready to keep the little hands busy while Joseph and a couple other kids found hiding places for the eggs. Marysa also organized a game that had kids laughing as they threw plastic eggs across a grassy spot into nets held by Joseph and three other boys. And when it was time for the hunt, Joseph helped hold the banner for Pamela and the other young kids to run through as they embarked on their quest to fill eggs.
 
Both Joseph and Pamela had a blast in their own way at today's food-free egg hunt. As my children sipped their green, dairy-free milk out of shamrock straws and dug into their shepherd's pie, they happily recounted the day's activities. Once again, I am so thankful to be part of such a dynamic, caring allergy support group and to be able to attend events like the egg hunt that offer our kids a safe, fun way to celebrate and make me feel pretty lucky. 

Tuesday, January 8, 2013

A positive batch of memories

Today, I turned to the mixer and a favorite recipe to soothe my sadness. Each year on Jan. 8, I like to do something that my mom and I enjoyed doing together. Most years, I turn to baking and for the past nine years it has been an even sweeter tradition because one or both of my children help me make a sweet treat. Of course, I can always count on both of them to help me eat our creation, and the smiles on my children's small faces make it that much easier to mark my least favorite day of the year.

It has been 17 years since the day my mom died after a brief battle with breast cancer. My tradition of doing an activity that brings happy memories of my mom stems from the value she instilled in me to always focus on the positive. Baking was one of the many ways she showed her love to me through the effort to create delicious desserts and the lessons she taught me about baking. But most importantly, the time we spent together mixing up various creations left me with special memories and insight to pass on to my own children.

Today while my 4-year-old daughter Pamela and I mixed up a batch of allergy-friendly blondies I thought about how blessed I was to have had such a wonderful, positive influence in my life. She taught me through her own example to always look for the positive. Sure, things will sometimes make me mad, frustrated and sad. But it doesn't help to dwell on those negative feelings. Rather, find a way to move forward, turn a situation around, use a not-so-great experience to help someone else, and focus on the positive ingredients in life. That is the mantra I have held onto since my son Joseph's diagnosis with life-threatening food allergies nine years ago.

Sometimes it is challenging to navigate a life with allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame and mustard, along with having asthma. And those challenges often make me wish I had a mom to lean on for support. But as the mom Joseph depends on, I have always made sure we focus on what he can have and find creative ways to give him plenty of safe, yummy options. For example, tonight I made homemade pizza for dinner thanks to King Arthur Flour gluten-free bread and pizza mix, Daiya mozzarella style shreds, homemade tomato sauce and bacon. Joseph was thrilled to hear he was having one of his favorite meals. There was no whining about not being able to pick up a pizza from the neighborhood pizza place. Joseph is well-aware that the wheat- and dairy-filled pizza delivered in a box could end his life, so not something he's upset about missing. He's much happier expending his energy breathing in the smells of fresh pizza coming from our oven and excitedly asking when it will be ready.

My mom and dad and me on my 3rd birthday.
On days like today, there are moments when a positive outlook simply can't withstand the sadness I feel   missing my mom and wishing that my two children could have met her. I know that they would have had so much fun spending time with her and benefitting from her nurturing spirit. I can't put a positive spin on that void, but I can be glad that I have so many happy stories about her that I share with my children. I am thankful that Joseph and Pamela, who is named after my mom, know her through my memories and photographs.

The blondies Pamela and I made today are from the original Toll House Blonde Brownies recipe my mom and I used so many years ago. Of course, I substitute most of the ingredients to make it allergy-friendly, using King Arthur Flour gluten-free multipurpose flour, an egg replacer, Earth Balance dairy-free, soy-free natural buttery spread and Enjoy Life mega chunks. But when those blondies come out of the oven, the delicious result evokes happy memories from my childhood and creates new memories with my own children, all while helping my least favorite day of the year become a bit more tolerable.