Tuesday, August 18, 2015

Empathy and enjoyment at our local library

The big smile on my son’s face as he bounded out of the library said it all: The Minecraft Teen Lock-in was a success. Like many other kids, Joseph loves playing Minecraft, so it’s no surprise that he would enjoy a two-hour event focused on the game. After all, he had been attending the Minecraft club and Minecraft directors club at our local library at least a couple of times a month throughout the year. But when he first heard about this event, he considered not attending.

Joseph assumed the event would include food. There have been times at other locations when food has made Joseph feel unsafe or excluded at an event because of his multiple food allergies to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon, strawberry and cantaloupe. That anxious feeling when other kids are eating unsafe food around him undermines the fun. This time, he didn’t have to worry.

In addition to planning amazing programs for teens throughout the year, Nicole, the youth services programming coordinator at the Pawling Free Library, has been wonderful about ensuring that any event Joseph attends is safe for him in light of his food allergies. Food is not part of most of the programs Joseph attends anyway because they mostly revolve around computers. But when food has come into play, Nicole has taken Joseph's needs into account, for example making sure to only bring the brand of chips that Joseph could have when she was having snacks at the end of one session.

The Minecraft event was no different. Nicole assured Joseph that there would only be snacks that are safe for him. She even offered to get all safe ingredients and make cupcakes that would be fine for Joseph. My comfort level is to make the cupcakes for the event myself, but I thanked her for being so willing to go the extra mile to accommodate Joseph. When I explained to her that her empathy for my 12-year-old and her efforts to ensure that he could safely enjoy an event is so appreciated because that is not what we often experienced, she was incredulous. She wondered, how could people think that the type of food at an event is more important than a kid’s enjoyment and well being?

I am so happy to have found such support for Joseph at one of my favorite places. The library has always been an integral part of my life and it continues to be for my family. The library was one of the first places we visited as we got acquainted with our new town after moving here a year ago. The books lining the library shelves were a comfort to us, wrapping us in a familiarity when everything was so different. Both of my children are voracious readers, so they would have loved the library just because it held so many experiences and worlds for them to explore safely between the covers of both well-worn and brand-new books. But the friendly faces that greet us each day when we enter, the help we know we can count on to find just the book, and the amazing programs that both of my children continue to enjoy make the Pawling Free Library extra special. In addition to Minecraft club, Joseph has taken classes in computer programming and 3D printing, worked on the library teen newsroom, and created a blog, "Pancake Domination". Pamela, 7, has enjoyed book clubs, craft activities and learning to sew, in addition to finding her wonderful Girl Scouts troop through one of the programs.

I felt so blessed as I decorated the Minecraft cupcakes for the teen lock-in. I have probably made thousands of allergy-friendly cupcakes during the past 12 years and it is especially gratifying to make them for an event that involves someone like Nicole, who has been so supportive. Joseph said that he had a blast at the Minecraft event, noting that he could enjoy his favorite part — playing Minecraft — because he didn’t have to worry about the food.

Tuesday, August 4, 2015

Some summer fruits not so super anymore

I put out bowls of cut-up cantaloupe with warm, homemade chocolate chip cookies just as my husband and son were pulling up. My son was having a rough day, so I thought it would be nice to surprise him with his favorite cookies and fresh cantaloupe to cheer him up a little when he got home from an appointment. Well, that was a major fail.

As soon as Joseph started eating the cantaloupe, he looked at me in fear. He said his mouth was feeling extra itchy and his lips felt funny. Then he realized it was the same way he felt when his mouth and throat got itchy after eating strawberries a year ago. He has also reacted in the same way to watermelon.

The reaction to these fruits is different than the more serious, life-threatening anaphylaxis that Joseph, 12, has experienced with other foods to which he is allergic. Instead the fruits on his list of allergies are part of his Oral Allergy Syndrome (OAS), common in pollen allergy sufferers, especially those allergic to birch, ragweed and grass pollens. A reaction occurs when “the immune system treats proteins similar to those in pollen that are sometimes found in fruits or vegetables the same way. This ‘cross-reactivity’ is a result of the immune system recognizing that the proteins in these foods are similar (although not exact) and an allergic reaction is the result,” according to the Asthma and Allergy Foundation of America (AAFA).

Each allergic reaction is unique, even for the same person to the same food. There’s no guarantee that the next reaction won’t be more serious, even with OAS. While most OAS patients suffer itchy mouth, scratchy throat or hives, there are patients for whom an anaphylactic reaction to those foods is possible, according AAFA.

Although OAS is usually considered less severe, it does not take away the fear when he bites into a food that previously was safe for him to eat and his body starts to react. At the moment he starts feeling the tingling in his mouth and throat, he doesn’t know whether this food will send his body into an anaphylactic reaction. All he knows is it doesn’t feel right.

Once the fear of a larger reaction passed, the disappointment set in. Cantaloupe is yet another food that Joseph now must avoid, in addition to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, watermelon and strawberries. His list of food allergies seems to keep growing and the fruits that have been added in the past few years as part of OAS are in some ways tougher for him to accept. He has enjoyed those fruits before so he knows what he’s missing, unlike the other allergens that he never had. He’s never tasted a hot slice of pizza from the local pizzeria, a peanut butter and jelly sandwich or a treat from the ice cream truck. But homemade strawberry shortcake? Yes, that he will miss.
As I looked at all of the fabulous ways people are using watermelon on National Watermelon Day yesterday, I was reminded of a blog post I wrote five years ago titled “Watermelon Smiles” . In that post I heralded the joys of the juicy, sweet fruit as a wonderful, natural allergy-friendly food. Well, the salad I mentioned making so often back then had three fruits that Joseph can no longer eat.

The bounty of fruits available during the summer has lost a little bit of luster as Joseph looks at each fresh fruit as a possible OAS offender that might join his growing list of allergies. Still, there are still plenty of fresh vegetables and fruits that he enjoys, and Joseph always uses his wonderful sense of humor to put a witty spin on any disappointment. But the next time I want to give him a treat to lift his spirits, perhaps I’ll just stick to his favorite homemade chocolate chip cookies.

Wednesday, May 6, 2015

The taste of nostalgia

“This tastes like nostalgia.” A recent dinner featuring grilled chicken carried my son back to his younger days when his favorite meal was grilled chicken with applesauce. He ate that meal a lot, as in most of his meals for lunch and dinner were grilled chicken with applesauce plus a steamed vegetable like broccoli and perhaps a sweet potato with some brown sugar on it. Some other meals such as those featuring rice pasta, bacon or grilled steak, also made the cut for Joseph’s meals, but grilled chicken was the clear favorite. His multiple food allergies certainly limited his meal choices, but not that much.

I have spent a lot of time searching for and researching foods that would be safe for my son, who is allergic to peanuts, tree nuts, wheat, milk, egg, soy, sesame, mustard, strawberry and watermelon. Every new product means I have a chance to expand his diet just a little bit more. I’m happy that there are so many more options now than when I started this journey almost 12 years
ago, and some brands have been with me all along. For example, I still use the Whole Foods 365 Organic applesauce I started using when Joseph was a toddler because it has one ingredient — organic apples. Nothing is added, thus lowering the risk that it could contain an allergen.
My determination to make Joseph’s birthdays special has always been a big part of my efforts in the kitchen. His birthday is the only time that the dessert everyone is eating is safe for him and he does not have to feel the sting of exclusion. As he turns 12 this week, it is a time for me to be nostalgic, too. I looked back at the treats I made each year for his birthdays and also for my daughter Pamela’s birthdays because I serve only treats that are safe for Joseph at her parties, as well.

I give props to my family and friends for bravely tasting each year’s creations. Some were successes, while others — especially in the early years — were fails. For Joseph’s first birthday, I made delightfully dry cupcakes whose only saving grace were the Bob the Builder cupcake wrappers. I also tried to make his 1st birthday cake look like a book to go with the story time theme we had. It made him cry. After that, I realized that cupcake toppers were an easy, allergy-friendly way to coordinate the dessert with the theme, whether I used soccer balls, little Hot Wheels cars, beachy toppers or tennis rackets. I also often make cookies decorated with melted chocolate or a sugar glaze to accompany the main dessert. Chocolate candy made using melted Enjoy Life chocolate in various shapes, such as Wii remotes or ballet slippers, is always a hit, too. I like to provide options because it is fun to try out different flavors and designs, but also because I figure if one dessert fails at least there is another sweet option.

I started to exercise my decorating muscle by the time Joseph turned 5 and we had a mini golf party. The cakes were tastier by then, thankfully, as I learned how to better bake without gluten, dairy and egg. By the time Pamela turned 4 and had a princess party, I had so much fun making a doll shape cake. Joseph says his favorite was the snitch cake I made for his Harry Potter party when he turned 8. Last year for a video-game party I made Wii remote cakes that were a big hit. Joseph is eschewing the idea of a theme this year, so flavor might outshine design. He wants a Boston cream pie for his actual birthday and a red velvet cake for his party. Both yummy family favorites are Cybele Pascal recipes. I just hope they give him big birthday smiles.

I get a double dose of nostalgia this week, as Mother’s Day always conjures memories of my mom, who died 19 years ago. She loved to bake, so it is natural that certain desserts like brownies, blondies, cherry pie and chocolate chip cookies always remind me of her. The pancakes I am making for Joseph’s birthday breakfast are an allergy-friendly version of her recipe. I make those pancakes every week and think of her every single time I’m measuring out my ingredients, wishing she were here to enjoy them, too.

Chicken also plays a role in my nostalgia. The other day I was trying to figure out what chicken dish to cook for dinner when I looked at the homemade croutons I had just made to freeze for the tomato panzanella salad I’ll be making for Joseph’s party. Those croutons reminded me of the creamy baked chicken my mom used to make using a stuffing mix for the crusty top. Then I remembered my late Aunt Marguerite’s creamy chicken divan that I always loved and thought that leftover steamed broccoli in the fridge would work for that. Thanks to Cybele Pascal’s dairy-free Alfredo sauce recipe, and Daiya mozzarella and cheddar style shreds, I was able to combine two dishes that brought back fond memories to create a new chicken dinner option that my kids loved. Now I have to make a new batch of croutons, but making my kids happy with another take on chicken was totally worth it.
Joseph still enjoys grilled chicken, but he has come a long way from his days of that being his primary meal choice. For his birthday dinner I will be making his favorite meatball Stromboli, and for his party he has chosen another favorite, chicken piccata. As new dishes make their way into our meals, I can’t help but wonder if one day my kids will say they too taste like nostalgia.   

Saturday, February 14, 2015

Allergy-friendly wishes

My friend Sally, a registered dietician who shares her thoughts and experiences at Real Mom Nutrition, asked me to share my thoughts about what I wish others could understand about living with food allergies. Check out my post on her blog, "What This Food Allergy Mom Would Like You To Know". Be sure to take a look around Real Mom Nutrition while you're there. Sally shares real-life experiences and offers honest, helpful advice and recipes that are easily adaptable for families navigating food allergies. Lots of families with food allergies can especially benefit from her section on Snactivism.

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.