Hollows Eve

Halloween… one of the words I dread the most. Why? Think about it; Halloween means one thing: CANDY. What are the most common ingredients found in these treats? Top 8 allergens. When we go out on this day, all I see around is just a potential allergic reaction.

Before Penny was diagnosed with food allergies we used to go trick or treating, but after she got the diagnosis, we felt it was too much of a risk, and decided to avoid it the years that followed. Not wanting to exclude the kids from having fun we started a new Halloween tradition, painting our pumpkins teal, getting our costumes on, and offering non-food treats to people. This year things changed: Penny is older and now understands what Halloween is, she talks about it with her friends and we felt like she wanted to be more involved, so we thought we should give it another chance.

The day started pretty excitingly. Fairy Princess costume on, breakfast, and off to school for a small Halloween bash. Like most of you know, Penny’s school is pretty accommodating when it comes to her food allergies. For the event held at her school, people brought treats and party foods to share with everyone. Even though there weren’t any peanuts or tree nuts, there was plenty of dairy around. The day was going O.K., but at a certain point a rash started to appear in Penny’s hands and face, and before her reaction got worse, my husband picked her up from school. He cleaned her hands and face really well, and the rash eventually disappeared. In the evening, I took the children trick or treating to some neighbors houses whom I had already given non-food items to offer to them, and it was a happy end to our day.

Even though our day was a successful one, it was stressful. Are we going trick or treating next year? I am not sure; maybe we’ll go back to passing non-food treats and raising Food Allergy awareness. Am I overreacting? Perhaps. It might be that I am overwhelmed because one of our family members went into anaphylactic shock less than a week ago and is fighting for his life. Maybe I seem like I am being overly cautious, but there’s one thing I would like you to understand: my children’s allergies, intolerances, or disorders are not their choice; it’s something they have to live with. Let’s create awareness; let’s cultivate empathy in our family members. Judging only clouds our thinking, if we try to walk a mile in other’s people shoes we contribute to a better society.

 

 

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Of Friendship & Food Allergies: An Interview

When you or a family member is diagnosed with Food Allergies, it can be tough. It’s hard to figure out what to eat, you could feel alienated; it changes your whole life and your perspective on life. However, being a part of the Food Allergy Community is great. You make friends for life, you meet people that understand what you or your family member is going through, people care about you and your life because these people know and understand that it is no joke, these people understand that a little bit of an allergen can be fatal.

About a year ago, I reconnected with a childhood friend, Tania, and this reconnection happened because of Food Allergies. We have a friend in common that kept in touch with both of us, and this friend thought it would be a great idea that we both reconnect because Tania has food allergies and understands what my family goes through in our daily lives. You can never receive too much empathy, right? Thank you, Malena! Well, a few days ago I told Tania I wanted to know a little bit more about her allergies. Penny was diagnosed with food allergies when she was only a year old, so it was fairly easy for her to adjust to a new diet, and she will never miss some of her allergens because she has never even tried them, but Tania was diagnosed when she was a teenager, and things are different when you are older. I thought her story was interesting, and here I am sharing with you some of the questions I asked her and her response.

Let me give you a little bit of context. Tania is a 30-year-old hard-working mother of two, who currently lives in Puerto Rico.

Me: How old were you when you had your first allergic reaction, and, what did you react to?

Tania: “Ever since I was a little girl, I remember having eczema and unexplained hives, but no reactions to food. I remember that after being outside, playing in the sun, my skin would turn red and hives would appear- especially in my neck, armpits, elbows, and knees. My first allergic reaction: I was at the orthodontist, I was about 11-12 years old, and I reacted to the latex gloves that the doctor was wearing. They had to give me antihistamines, but everything turned out all right. The first reaction to food was about a year after that. I was at a fast food restaurant and I took a bite of my honey biscuit and immediately anaphylaxis set in. My throat was itchy, my face was itchy, and I was having trouble breathing. My dad had to rush me to the hospital, and this was my first experience with epinephrine. After getting a shot of epinephrine, and all the other medications they had given me, I was still showing symptoms of an allergic reaction, so I had to stay at the hospital for 3 days.

The culprit was honey. I know I had eaten honey before, when my grandma would make us tea, or when I ate honey biscuits, but had never reacted this way.

After several tests, I found out I was allergic to honey, soy, and latex (which I already knew). From that day on, we avoided honey and soy in our house. Curiously, the doctor didn’t prescribe an epinephrine auto-injector.”

Me: I know these are not the only allergies that you have. How did you find out about the other ones?

Tania: “I was about 17 years old, and it was new years. You know that there’s a tradition in which you eat 12 grapes after midnight for good luck? Well, I was in grape number eight when anaphylaxis started to set in. Again, my neck, head, and face started itching, and I started having trouble breathing. My mom gave me antihistamines and drove me to the nearest hospital.Now, after getting some more testing, I turned out to also be allergic grapes, prunes, and white chocolate. Again, no epinephrine auto-injector prescribed to me at this point.
My next reaction happened about six months after the grape reaction. I was sick; I had an infection and was at the hospital. They were going to give me antibiotics through an IV. The nurse started the antibiotic, and I started feeling an intense burning sensation through my veins. Soon enough, my whole body was covered in hives. The nurse ran to get the doctor, and in a matter of seconds, the nurse had taken the IV out of my arm. Due to the reaction to the antibiotic and the infection, I was hospitalized for four days. At this point, a shift occurred inside of me. I understood that I had severe allergies that could happen anytime, anywhere, and that these allergies could take my life. So, I made an appointment with my allergist and asked for an epinephrine auto-injector.

Later on, I also reacted to a vaccine, which turned out to be an egg allergy. After this, I had an anaphylactic reaction while doing an English internship at the University of Vanderbilt in Tennessee. I ate something that I didn’t know had honey, so my roommate- who, by the way, didn’t know I had food allergies- had to basically drag me to the Student Health Services, where I self-administered the EpiPen.

Two years ago, one of my children was eating popcorn and it had peanuts. He gave me a kiss on the cheek and handed me some popcorn. As soon as I put the popcorn in my mouth I noticed my cheeks and mouth swelling. Yes, I am also allergic to peanuts.

Last but not least, every time I eat gluten, I get hives throughout all of my body. It was then that I discovered that I’m also allergic to gluten.”

Me: How do you feel that food allergies affect your lifestyle?

Tania: “In the beginning, it felt like I was restricted when it came to food. I also lost weight, and I felt isolated. I guess that because I felt isolated, and as a teenager, I didn’t want to feel different, I didn’t take my allergies too seriously in the beginning. I would take risks eating these foods (which is a very bad idea), and thought that antihistamines were going to take care of it. I guess I was lucky that I didn’t have an anaphylactic reaction that took my life when I was young. But with age comes maturity, and after I had that reaction to the antibiotics at the hospital, I saw how fragile life could be, and I started taking my allergies seriously.

Socially, I try to stay away from the allergens and it isn’t that bad, but I have been in situations where I’ve had to leave gatherings because there is one of my allergens, and I start reacting to it by “airborne contamination”.

Emotionally, it’s hard because I have kids, and I don’t want anything to happen to me. I want to be able to see them grow up.”

Me: How do people react when you tell them that you have food allergies?

Tania: “Some people take it seriously, but most people are in disbelief. They comment things like: ‘What? You’re allergic to grapes and honey? I’ve never heard of anyone with those allergies!’ I feel like there is a lot of ignorance because of misinformation.”

Me: How do you create awareness?

Tania: “When I go to places, and I feel like I have to tell people, I let them know. I try to educate them on the subject. I also try not to scare people with my allergies, because sometimes they feel like it’s a weight on their shoulders and feel responsible and scare to eat close to me. I try to help spread the word, and help Food Allergy charities whenever I can.”

Me: Finally, how do you feel about having Food Allergies? 

Tania: “At the end of the day, it is my body and I have to work with it in order to continue my life and in order to be part of my children’s life. I have allergies, but allergies will never bring down my spirit and my life!”

 

I have to say that having Tania as one of my friends has been a blessing. She, not only understands what we go through but also offers us her continuous support. Even though we are thousands of miles apart, it feels like we are in a parallel walk through this journey.

Let’s create awareness, and for this, we have to remember that: “To achieve change, we must speak up. Every voice is Important.”
-Barbra Streisand

Four Years Ago

It’s almost the four-year anniversary of Penny’s food allergy diagnosis. We’ve come a long way ever since, and there’s so much more that we need to learn. At that time, when her doctor said the words, “Penny is allergic to dairy, peanuts and tree nuts”, I was filled with mixed emotions. Happy because we finally had a name for those unexplainable hives that would appear on and off during the past 5-6 months, but at the same time it felt like a “life sentence”. It felt like our lives were turned upside down.

Choosing things to eat without her allergens was hard, going to gatherings, birthday parties and play dates seemed impossible, and to be honest it is still hard sometimes. Even choosing a school for Penny to attend, where her allergies are taken seriously, was a struggle. Things got harder last year when my husband had to do an unaccompanied Army one-year, overseas tour. Penny was sick a lot that year. From the moment my husband left, she started getting ear infections. Of course, her allergies to antibiotics made things harder. Then after recurrent ear infections (one each month for 6 months), she was referred to an ENT, and the Dr. decided that she had to undergo surgery to place tubes in her ears and also remove her adenoids and tonsils.

I am so lucky to have friends that go above and beyond for my children and me. So, when the decision was made that Penny was to have the surgery, my best friend (Sonia) offered to fly into town and be here with us through Penny’s recovery. The day of the surgery, I was a nervous wreck. Since Penny has not only food allergies, but also allergy to medications, I was so scared how her body was going to react to anesthesia. Thankfully, surgery was a success, and Penny didn’t have to stay at the hospital that night. Although Penny recovered pretty fast from surgery, she did have some complications. A week after surgery, her lungs started accumulating liquid, but eventually (with treatment), she pulled through. Sonia stayed with us for 3 weeks, making it possible for me to go to work while helping to take care of Penny & Paulo. I am forever grateful for Sonia’s help.

These past four years have taught us to read labels, eat healthier, cook and bake at home, create awareness, educate people, deal with uncertainty and more, but overall we’ve learned to see life differently, to live with empathy, and to think about the everyday struggles of others. We’ve received so much love and consideration from family, friends, and even strangers. Food Allergies are hard, but the hidden gems it brings are far more valuable. We’ve met great people, and we’re part of a beautiful community that looks out for each other. Can’t wait to see what else this incredible journey has for us.

All I am Saying is Give EMPATHY a Chance

“When you start to develop your powers of empathy and imagination, the whole world opens up to you.”

-Susan Sarandon

         Anyone who knows me knows that I am an advocate for empathy. I don’t believe in judging by first impressions because you never know what kind of day a person is having, or even what kind of life they live. My life is a constant worry about allergies and reactions: What if that child, that Penny is playing with, had peanuts before and didn’t wash his/her hands, and now will touch her and cause a reaction? What if that flour I bought has been tainted with peanut or any other allergen? What if that medication causes an allergic reaction? Should we go to that birthday party or would it be too dangerous to go?  As stated above, things that might be mundane for other people, involve more planning and effort on our part, which makes our day-to-day life a little bit more complicated.

The past 10 months have been challenging in our house. Penny got sick a lot. She developed asthma, and later, she had recurrent ear infections, which lead to surgery. Needless to say, I was scared. Scared not only because all surgeries have risks, but also, since she is so “atopic”, as her pediatrician says, and is not only allergic to some foods, but also to some medication, I was scared of her reaction to the anesthesia. Thankfully, the surgery was successful: ear tubes are in place, and tonsils and adenoids removed.

Ever since that surgery, things started to look a lot better. Then, a few months later, she started to develop some gastrointestinal issues. Penny was having tummy aches, diarrhea, and gagging when eating. We visited a Gastroenterologist, and an endoscopy was performed. Thankfully, she was negative to Celiac Disease, but “borderline” to Eosinophilic Esophagitis (EoE)-the Dr. said they look for a number 16 in the biopsy, and her result was 15, so he couldn’t diagnose her. I had this hunch in the back of my head that the problem was gluten, so after the endoscopy was performed, we started eating gluten free. A few weeks later, all the symptoms disappeared.

Now, since last night, Penny developed a fever. Her symptoms are headache, tummy ache, and nausea. After spending the night monitoring her fever, I called a nurse hotline to figure out if I had to take her to the ER or not. The helpful nurse that talked to me on the phone and asked me about her symptoms suggested that I take her to the ER. So, I did. I took her to the same hospital I’ve always taken her in case of an emergency. Today, she was seen by a resident- I have no problems with residents taking care of us, for our experiences have always been positive. However, after he examined Penny, he told me: “She looks fine. I know you are a concerned mother, and since you have spare time on a Saturday, well, here you are”. It took me a while to realize what this person was telling me… What does he mean? Spare time? Does he really think that I have nothing else to do? I was there because my daughter needed medical attention, not because I had spare time. You would think that a medical professional would be a little bit more empathic towards his patients, especially when his profession entails helping others. And now that I think about it, this is a quality that every single one of us should work on- we should at least try to see the world through someone else’s eyes. Let’s try to keep this in mind. Let’s try to show more compassion before formulating any judgment or ideas.

 

 

 

 

Empathy

One thing that I truly appreciate is empathy. So far, I’ve been blessed with amazing family members, friends, and neighbors who are great at being understanding and considerate when it comes to my children’s allergies. Whenever they visit, they try to avoid allergens at least 4 hours before coming over and never bring any allergens to my home. Also, they wash their hands and mouths when they arrive. If we are the ones visiting, they wipe surfaces to make sure there is no allergen protein residue and put away any food product containing dairy, peanuts & tree nuts. If they happen to have had contact with any of the allergens while we are present, they make sure to wash their hand thoroughly to make sure there’s no allergic reaction. Finally, if we have been invited to their home and they feel like offering us anything to eat, they are kind enough to call me beforehand and ask if we can eat whatever it is that they are offering.

On the other hand, I am grateful when someone that’s not willing to give up those allergens when we are around tells me about it. This way, I make sure we’re extra careful when meeting up with him/her.  I am never trying to be an inconvenience; I am only trying to avoid allergic reactions. But the mere fact that you are honest enough and let me know helps to keep my children safe.

Now, when one of my friends or family members goes out of their way to bring me an allergy-friendly product, it makes me happy. This is exactly what happened when we were on our trip in Puerto Rico. My mom’s friend, Angie, knew about Penny’s allergy and while she was shopping in Marshalls stumbled upon Dr. Lucy’s Chocolate Chip Cookies. These cookies are peanut, tree nut, milk, egg and gluten free. Its box says that they test for milk, gluten, peanut, almond, hazelnut and walnut traces in their ingredients and never allow those items in their bakery or warehouse, which gave me a sense of security when offering these treats to my children.  Oh! They’re also Non-GMO. ☺ A physician, who’s also the mother of a child with food allergies created this brand. She states in the cookie box that she built her own bakery to make these treats because she  “know[s] how difficult it can be to find high-quality snacks that taste great”. I agree, at least the chocolate chip cookies, have a rich and delightful taste. What can I say? The cookies were gone that same day. I can’t wait to find more of these delicious treats.

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To all of you that have been kind enough to accommodate my children’s needs, you know who you are, thank you from the bottom of my heart. You have no idea how much easier and less stressful this makes my day.  For me, it is not about convenience, but about not risking my children’s health and lives.

Summer Camp and a Complicated Birthday Celebration

Last month, I traveled with both my kids to Puerto Rico. One of the reasons for our trip was for the kids to be able to go to an awesome summer camp. For Paulo, it meant an all day experience, whereas for Penny it was half day. I’m not going to lie, leaving my food allergic kiddos in school/summer camp is a bit nerve-wracking, especially since Paulo is newly diagnosed and Penny is still learning to identify which food products contain her allergens.

To my surprise, Paulo was really good at identifying what he could or couldn’t eat and understood that he was not able to share snacks or lunch with anybody else. Penny was a different story. In her case, teachers had to be vigilant and extremely careful at snack time. However, they were really good at keeping Penny safe. They told me that it was a learning experience for them. They found it easy to avoid and keep Penny away from peanuts and tree nuts but were surprised with all the food products that contain dairy. They made sure that everybody washed their hands before and after snack and would carefully clean the tables, chairs and materials to avoid an allergic reaction. Overall, both kids had an amazing time and I am happy to say that both children had an allergy-free summer camp experience.

However, like everything in life, nothing is perfect. On the last day of summer camp, we celebrated Paulo, Penny and another child’s birthday. At first, when the director told me about the celebration, I was hesitant for it involved food and as a food allergy mom, that makes me a bit anxious. But at the end, I accepted because the director assured me that she would talk to the mom of the other child celebrating the birthday and would make sure that the celebration would be allergy-friendly. It was my responsibility to bake allergy friendly cupcakes and the other mom would only bring fruits and veggies.

Last day of camp came and everything was looking great. Until, all of a sudden, the other mom comes with a cake on her hands. My heart started pounding with fear and disappointment, and I’m guessing that I did not control my emotions well because as soon as she looked at me, she assured me that the cake was brought only so she could take a picture. I was confused. The only reason I had accepted to have the birthday celebration was because it was going to be an allergy-free gathering and now, this mom knowingly brought an allergen-full cake… Anyway, I trusted that she was going to keep her word and continued with our day. The party was awesome: kids were enjoying the bouncy house, the water slides, and the allergy-friendly snacks.

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It was time to sing Happy Birthday, so we all gathered around the table where I had beautifully placed the 70 homemade allergy-friendly mini-cupcakes and we all sang the birthday song. We shared the cupcakes with everyone and were having an awesome time when all of a sudden the “picture cake” was out. They took the pictures, I looked away, and when I looked back there was a mess made out of the cake’s frosting. I started getting anxious, trying to keep Penelope away from the cake area when I noticed that the mom was cutting the cake and giving away some pieces to some children. This is when I went from anxious to upset. I couldn’t believe my eyes. This mom, who had been told about both my children’s allergies and their severity, and who had agreed on not bringing any allergens, not only brought them, but knowingly was also putting my child’s health and life at risk. I was too upset to talk to her without making a scene, so instead I took our stuff and my severe allergic child and left.

I know and understand that the world is not allergy-free and that not everybody understands the consequences that a little bit of an allergen can cause (in our case, anaphylaxis). In this case, what disappointed me was that this other mom knew beforehand about the allergies and still went on and brought allergens. It saddens me that people can’t see that where their child’s inconvenience starts is exactly where my children’s life is put at risk.

Both my children had an amazing summer; it was their mom who got scared and angry at other people’s lack of understanding. Help me out to spread awareness, so empathy can be achieved.

For more information about food allergies, visit:

Food Allergy Research & Education

Food Allergy & Anaphylaxis Connection Team

Kids with Food Allergies

American College of Allergy, Asthma & Immunology

American Academy of Allergy, Asthma & Immunology

Small Victories

You might remember a post I published a couple of months ago called “Walk a Mile in my Shoes”. In it I explained what I go through with Penny (and her food allergies!) when I drop Paulo off at his ballet class. After that “incident” I knew that something had to be done.  That day, I felt allergens were something unavoidable, they were pretty much everywhere. So, next time I went to drop Paulo off at ballet class, I asked to talk to the program manager. She explained that we were in a peanut-free facility and it has a designated eating area. However, I told her that there were no signs anywhere explaining that, so there was no way people knew about it. I told her how I have walked in some days finding myself seating next to someone eating a bag of peanuts and consequently panicking at the thought of Penny experiencing an anaphylactic shock. She completely understood since she also has food allergies. After a long talk, she agreed to put up signs on the walls that specify that people are not allowed to bring peanut/tree nut products in the building.

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A week after the signs were up on the walls someone took them down… It is still hard for me to understand how refraining from eating peanuts in a limited interval of time can be something so inconvenient. I can’t understand how people believe that they have the right to eat peanuts. Eating peanuts is a choice. My daughter’s allergies aren’t a choice. She can’t decide if she will have an allergic reaction. It just happens… Anyway, I went back to the administration office. Again, the signs were put up on the walls. Up to this day, they’re still there. People don’t always follow the rule of eating in the designated area, but, guess what? I can always remind them. Small victories like this one will help us create awareness.

I am going to continue advocating for my child’s food allergies, after all, I am protecting her life. If we let others know what we go through, we can, maybe, cultivate some empathy and awareness, one person at a time.