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

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Going Nuts

Last month was Penny’s latest challenge: almonds. What can I say? Since the day her food allergies were diagnosed, her allergist had said that she would be O.K. if she consumed almonds. To be honest, the thought of introducing her to a tree nut, and potentially having a reaction to it, kept me from introducing her to this food. Her very first allergist had recommended introducing her to almond milk at the hospital (not in her office, but in the parking lot) in case she reacted, which confused me because if she was O.K. to eat almonds, why did she had to be close to the hospital? Long story short, we had been waiting to introduce this food until she was older and was able to vocalize if a reaction was happening.

Last year, she started seeing a new allergist, who is amazing. In the beginning, he told us that she might not be allergic to almonds, but that due to her past reactions to other foods that she shouldn’t have had reacted to, he wanted to introduce it in his office.

We got to the doctor’s office early in the morning…We, yes, the whole family. We have this tradition in which we support each other when big things happen, and for us, a Food Allergen Challenge is a very BIG deal. When it was time, Penny and I walked in, Paulo & my husband stayed in the waiting area. Why? In case she reacted, we would all be there, but not crowding the room, that way nurses and the doctor could do their job. The nurse checked her vitals, weight & height and informed me that she had tested slightly allergic to almonds. I took a deep breath and trusted Penny’s allergist’s decision. After all, she’s allergic to dairy and has been able to tolerate it in baked goods. Hooray for Oral Immunotherapy (OIT)!

A few minutes later another nurse came in with almond butter. It was time to get started. For the first time, I saw Penny be the one anxious about food. Usually, Paulo, being the awesome protective brother that he is, is the one that gets a bit anxious when there are allergens around. This time, I had to consider that not too long ago, Penny had experienced anaphylaxis due to a yogurt challenge. I had talked to her about this new challenge a few days ago, and after a little bit of talking and hugging, Penny was ready.

The first dose of the allergen was very little. I could see Penny tensing up, the white in her knuckles as she clenched her fists. She started scratching her arms and coughed every once in a while. I had remembered to bring books and toys to distract her, and it worked. She kept herself busy coloring and reading, she did great! She first tried the almond butter and pondered about its taste for a while, and told me that it tastes like chips. She loved it! ☺

Then a second dose was administered 10 minutes after, then a third dose, and so on until she tolerated 2 tablespoons (8 grams) of almond butter. Everything went well, but I wanted to be extra cautious because, on her last failed challenge, it wasn’t until an hour after the challenge had started that she reacted. I talked to the doctor about it and asked him if we could stay a little bit longer in his office. He acknowledged my feelings and told us that we could stay there as long as we wanted or 6 p.m. when his shift was over. 😂 After a full hour had passed by, we decided we were ready to go. From this day on, Penny has been able to eat foods containing almond daily, without a problem. Paulo is ecstatic as well, for he is now also able to eat new foods. ☺

I am so grateful that Penny is able to do these food challenges, and having her participate in OIT gives me hope that maybe one day she’ll be able to eat anything, anywhere without having to be worried about a life threatening allergic reaction.

 

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.

Challenges

It was the day before Penny’s 1st Dairy Challenge. A dairy challenge, in Penny’s case, meant that I would bring a homemade baked good that contained dairy to the Dr.’s office and she would eat this baked good under proper medical supervision- this to ensure that if a severe reaction occurred, the medical staff will have control of the situation. Also, per the allergist’s instruction, Penny had to stop any antihistamines and/or asthma medication 5 days prior to the test.

I got ready: went to the supermarket, got some gluten-free flour, enjoy life chocolate chips, eggs, coconut oil, and the most important ingredients for the challenge: cow’s milk. After everyone went to bed, I stayed up looking for dairy-full cupcake recipes and baked. I’m not going to lie-I was nervous, but positive.

We had decided that the four of us were going to be at the Dr.’s office on this BIG day. Not only to celebrate if Penny passed the challenge but also to give each other support. After all, isn’t that what family is all about?

On the day of the challenge we were there at 7:45 am. Penny was called in at 8:00 am. After having been examined for her asthma and everything else (height, weight, changes in health, etc), the Dr. ordered her to start eating the cupcake. First, they gave Penny ¼  of a teaspoon of the cupcake, slowly increasing the quantity every 15-20 minutes until she had eaten about ¼ of that cupcake. There was a high level of supervision throughout the whole challenge. The nurse would come in the room every 3-5 minutes to check on her, and to ensure that everything was alright. This gave me a sense of security- that if anything happened she was going to be ok. An hour and a half later the challenge was completed, and Penelope had successfully passed. In the weeks to follow, I had to slowly increase the portions (of a cupcake) that Penny ate by ½ every week until she tolerated 1 whole cupcake. This was a breeze; she loved the taste of the cupcake and never had a reaction. I came to understand, at this point, that the treatment that the allergist chose for Penny is called Oral Immunotherapy (OIT). Oral immunotherapy is a treatment that induces the immune system to tolerate a food that a person is currently reacting to. It involves introducing the food that causes the reaction to the person’s system in gradually increasing amounts, with the goal of allowing the person to eventually consume the food without experiencing a reaction.

From now on, Penny had to eat a dairy-full baked good daily. I got creative and baked bread, cakes, brownies, cookies, etc. Eating these baked goods for a month and a half was preparing Penny for the next step: a Yogurt Challenge. Seeing Penny eat things with dairy made me so happy. For 3 years her diet had been restricted, and thinking that she was going to be able to add more things to her diet and potentially eat anything with dairy altogether is pretty exciting.

Her yogurt challenge was scheduled two days after Christmas. A few days before, Penny, Paulo & I went to the grocery store in search of a good vanilla yogurt. Fast-forward 2 days and it was Challenge Day.

Just like the 1st time, we were there early in the morning. This time, I brought her breakfast to eat after the challenge was over. Around 8:30 am, the yogurt challenge began. She had ½ a teaspoon of yogurt. No reactions. Then, about 10-15 minutes later, she had 1 teaspoon of yogurt. Still, no reactions; however, Penny started complaining saying that her stomach hurt because she was hungry. Twenty minutes later, she had a tablespoon of yogurt. This time, a few hives appeared on her face, but after washing her hands and face, the hives went away. Again, according to Penny, the only thing bothering her was that she was hungry. The allergist walked in about 20 minutes after she had the tablespoon of yogurt and since she was cruising through the whole thing, he said that Penny could eat as much as she wanted. She was so happy and she kept saying: “Mommy, this yogurt is so YUMMY!”

Another 20 minutes had gone by. The allergist came back into the office, checked on her and was ready to discharge her with a successful challenge. Then all of a sudden, Penelope developed a cough. The allergist and I kept talking about the next steps to take, and I told him that she wasn’t coughing before, so he said that he was going to keep her in the office for 10 more minutes to see what was going on. I was fine with it: “better safe than sorry”. He also said that Penny could have the breakfast I had brought since she kept complaining about being hungry. She had one bite of her pancake, and then said she didn’t want any more. This was strange. As time passed by, her cough was more frequent, and her energy levels were dropping. She started telling me that she wanted to go home and that she wanted daddy. My husband and son wanted to be there for the challenge, but were both sick with a cold, and decided to wait for us outside.

The nurse came in and stayed with us, checking on Penelope constantly. I asked her to, please, check her lungs for wheezing. She said Penny wasn’t wheezing. At this point, Penny was curled up in a little ball in my lap. Then, as the nurse was going to step out of the room for a second, Penny coughed, but this time at the end of her cough, you could hear the wheezing. The nurse looked at me and asked me if I heard a wheeze. I certainly did. From that moment on, everything felt like it was going downhill: she was in anaphylactic shock. Her wheezing was very loud, and she was struggling to breathe. The nurse called other nurses for help and got the allergist to walk into the office. Penelope was connected to a blood oxygen saturation monitor. My head felt like it was spinning; I kept looking at the monitor: her heart rate kept going up and her oxygen levels kept dropping. I was desperate and felt helpless at the same time.

The allergist looked at Penny and ordered epinephrine be given to her. One of the nurses raced off to another room and came back with a syringe containing the epinephrine. Even though it had only been minutes since she started having the reaction, it felt like hours. Not even a minute after the epinephrine was given to Penny, everything started to change. Her breathing slowly normalized, wheezing subsided and Penny started looking better. Once she started feeling better, she also started having nausea, and eventually threw up the yogurt. At least she didn’t have what was making her sick in her stomach anymore. To be exact, 6 minutes after epinephrine was given her oxygen levels were back to 100%. The doctor ordered the nurse to give her oral steroids to avoid a biphasic reaction. A biphasic reaction occurs anytime from 1 hour to 72 hours after the initial reaction and can happen without any allergen exposure. He also ordered antihistamines because her throat was itching.

By the time my husband was able to make it to the room where we were, Penelope was stable. Everything happened so fast. We left the allergist’s office 4 hours after with instructions to keep giving Penny dairy in baked goods. I’m not going to lie, I was afraid that she was going to have a reaction to baked goods after the severe reaction, but she was fine.  The next step: a Cheese Challenge next month. How do I feel? Scared, but this is the only way we are going to know if her dairy allergy will ever be cured.

This has been one of the most difficult experiences I have ever lived. It left me heartbroken, and it has been difficult even to talk about. I know Penny’s all right and that everything is O.K., but I am still healing. I am grateful to know that epinephrine can save her life if used as the first line of treatment for anaphylaxis, and most importantly, I am hopeful that Penny will be able to surpass this.

 

 

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.

 

 

 

 

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

Traveling with Food Allergies

Last month, I planned a trip back home for the summer. This trip translates to 9 hours of flying with 1 stop and a 3 hour layover in between. I know: Exhausting!

A week before the trip, I started feeling extremely anxious about flying because my children have food allergies. I have traveled with my kids before, but this time it was different. Since last time, Paulo has developed a dairy allergy and Penny’s allergies have become more severe. At this point, I know exactly what I have to do before flying in order to prevent an allergic reaction: check airline allergy policies, call the airline, bring extra medication and epinephrine auto-injectors, pack allergy-friendly snacks, pack wipes and bring allergy allert wristbands. We have traveled with Delta before and they have been very accomodating with food allergies, so I decided to book our flight with them. To see their peanut allergy policy click here.

Once at the gate, I informed the airline staff  about Penny’s peanut allergy. To my surprise, they had it on the passenger’s list and had already informed the flight crew. We were able to pre-board and wipe down our seats, eating tray tables and window. When it was time for the crew to serve snacks, an announcement was made- they said that they were not going to serve any peanut products due to a passenger’s peanut allergy. However, they didn’t ask other passengers to refrain from eating peanuts. According to a flight attendant it was because they ” couldn’t stop anyone from eating any peanut products on-board”. Luckily, our first flight was smooth: no allergic reactions! 🙂

We got to our first destination and layover: N.Y. At the airport, Penny started coughing and sneezing. Later on, her eyes turned red and became very itchy. I was 100% sure that she hadn’t ingested any allergens, so I proceeded to give her benadryl. About an hour later she looked like she was feeling better: coughing had subsided and she was barely scratching her eyes.

When the layover was almost over and it was time to board the plane, I proceeded to tell the airline staff about the allergy and went on to pre-board and wipe down our area. Again, the airline refrained from serving any peanut products. However, this time there was no announcement made. Two hours into this flight, Penny’s allergy started to get worse. She had nasal congestion, started sneezing again, her eyes became itchy and started to swell up. To my knowledge, Penny has never experienced an anaphylactic reaction, so everytime she starts showing any sign of an allergic reaction, I get anxious. I kept observing her closely- I had given her benadryl a few hours before and it wasn’t time to giver her a second dose.

She hadn’t eaten any dairy or peanut products, which lead me to belive that her allergy was, in this case, a cause of “environment pollution”. Meaning that there were enough peanut particles in the air to cause an allergic reation. At one point, one of her eyes was almost swollen shut, so I talked to the flight attendant, explained what was going on and told her that if things didn’t take a turn for the better anytime soon, I was going to use the EpiPen. What worried me the most was not knowing if her breathing was affected. The flight attendant asked for a Doctor on board, there was none. Lucky for us, there was a medical student sitting right in front of us and was able to listen to Penny’s lungs with a stethoscope. She was able to confirm that Penny’s lungs were not wheezing. This helped me calm down a bit.
We still had about an hour and a half of flight left and we were in the middle of the ocean, which meant that there was no way that the pilot could’ve made an emergency landing if it was necessary. Instead, they contacted a hospital, where a Doctor instructed me to give her a second dose of benadryl. Those were the longest hours that I’ve ever lived. I felt so scared, helpless, lonely and desperate. Thankfully, the airline crew was wonderful: they kept checking on us constantly and offered a great amount of support.

The second dose of benadryl “hit the spot”. Consequently the swelling started to slowly go down and you could tell that Penny was starting to feel better. As soon as the airplaine landed, I called Penny’s allergist and explained the situation. He told me that since she had not eaten the allergen, I should just keep observing her and if she showed any signs of breathing distress, then I should use the EpiPen and take her to the nearest ER. When we got off the airplane, the airline had arranged for EMTs to check on Penny. Later that day, she was seen by a pediatrician in my hometown who started her on cortizone and by next day you couldn’t see any allergy signs.

Up to this day, I still ask myself what went wrong. I wonder if there were enough peanut particles in the air from the previous flight or if someone in our flight was eating any peanut products. Did I wipe our seats and table trays correctly? Was this an inevitable incident? These questions and a lot of other ones remain unanswered. However, I have the satisfaction that I did everything that could’ve been done and that at the end Penny was fine.

On the other hand, I ask myself: What are certain airlines waiting to completely eliminate peanuts on all of their flights? I wonder how important is an “inconvenience” over a persons life. My children don’t have a choice- their lives depend on it. It’s not fair to put someone’s life at risk over a bag of peanuts. Let’s have some empathy and support people with food allergies. Help me create awareness in order to achieve a change. It’s time to make a change and help people stay safe!

Another Food Allergy Diagnosis

When Winter Break was over, we all went back to our routines. Juan got back to work, Paulo to school, Penny & I to our everyday activities. As I’ve said before, we avoid having allergens in our house, which means no dairy and no nuts. So, school was the only place that Paulo was able to have his cup of milk without me worrying about cross-contact and consequently an allergic reaction. However, when Paulo tried having his usual cup of milk at school, he threw up. That day he said he was too full from the lunch he ate and maybe that was why he threw up. Next day, same thing happened. This time, I was sure that it had nothing to do with being too full because it was accompanied by a week of stomach pain, bloating, gas, etc. Maybe it was a virus or maybe he was starting to develop either an allergy to milk or lactose intolerance.

We decided he was going to avoid milk until we could find out what was going on. He was tolerating cheese, and then one day, after having pizza for lunch, same thing happened. This was the day when he ended up admitted to the hospital (see Hospital Stay). Doctors discharged him with a gastroenteritis diagnosis. I knew something was not right, I felt that it was not gastroenteritis. So, I scheduled a follow up with his pediatrician. After a few visits to different doctors and some tests, it turns out that Paulo has a food allergy: he is allergic to cow’s milk.

This diagnosis taught me that there are different types of food allergies. There are the IgE-Mediated Food-Related Disorders and the Non-IgE-Mediated Food Allergic Disorders. The initial blood test done measured the presence of IgE antibodies to a specific foods. However, Paulo has one of the Non-IgE-Mediated Food Allergic Disorders, reason why that first test came back negative. If you want to find more about Non-IgE-Mediated Food Allergic Disorders, click here… I guess we do learn something new every day.

Like I’ve said before, even though Food Allergies are, most of the time, overwhelming, in my case it has had its share of positive outcomes.  At this point, we are aware of what we eat, we eat a healthier diet, we grow our own organic vegetables and fruits and we know how to avoid diary. Also, Paulo’s reactions are not life threatening. Yes, it is an inconvenience if cross-contact occurs and yes, he gets sick, but his life is not at risk when a reaction occurs. Nevertheless, it is still serious.

We started Food Allergy Awareness Week with another Food Allergy diagnosis in our house. Now I have more than one reason to advocate and raise awareness about food allergies. This week I wear teal for both my kids.

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.

 

Everything Will be Fine

For the past few weeks I’ve been “disconnected” from the blog for two reason: 1) my husband’s grandmother came to town to visit and I wanted to spend quality time with the family (no interruptions!), and 2) I had one wisdom tooth extracted and recovery took my energy way. But now I’m back- fully recovered and back to our routine.

Like I’ve stated before, we avoid having Penny’s allergens at home, but two weeks ago I bought cow’s milk for my hubby’s grandmother (Mamá Maggie, as my kids lovingly call her). Her house is not allergy-friendly, and why should it be? We don’t visit because she lives cross-country and neither she nor anyone around her has food allergies. And even though she is very understanding and careful about Penny’s allergy, I wanted to have something in the house for her morning coffee…Penny will be going to preschool pretty soon and I need to accept the fact that she is not living in an allergy-friendly world. Sure, I make “our world” allergy-friendly and easier, but that’s not the reality once we go out of the house. We did manage to avoid peanuts and tree nuts, and because we were very careful, reactions were avoided as well. Also, Penny understood that she couldn’t touch the cow’s milk and wouldn’t even go near it. This gives me a lot of confidence, for now I know that she is learning what she can and cannot eat.

Mamá Maggie enjoyed our allergy-friendly homemade baked goods, and she even dared to try Sunbutter and Soy Nut butter. She told me that she enjoyed so much some of our allergy-friendly products, that she will be buying them for herself. Also, she altered some recipes while she was here so they were allergy-friendly and we could all eat the same thing.

I am eternally grateful for Mamá Maggie’s thoughtfulness about Food Allergies- she even thought about them when we were looking for restaurants. I understand that this is something that might not be easy for someone that hasn’t experienced food allergies closely and that is used to not avoiding any allergens… Again, THANK YOU! Things simple as these make me a happier person.

I recently read an article in the Food Allergy & Anaphylaxis Connection Team (FAACT) webpage about the “Psychological Impact for Families Living with Food Allergy” and it stated that, “Children with more than two food allergies and their parents report poor quality of life”. This is our case; Penny is allergic to dairy, peanuts and needs to avoid most tree nuts. Honestly, I can say that Food Allergies are overall overwhelming, and create a great deal of anxiety for me. I decided to stay home instead of working because of Food Allergies, and it is almost impossible for me to trust anyone to take care of my “food allergic” daughter. I even get anxious leaving her with her dad (I know!). After two years, I can say that I am slowly learning to take deep breaths and “let go”. So, two weeks ago, when I had a wisdom tooth extraction and had to rest a lot for 2-3 days, I was “forced” to let others watch Penny. In this case, Mamá Maggie and my husband took care of her. Guess what? Penny didn’t have a single reaction and the world didn’t come to an end. I am grateful for this experience, now I know that everything will be fine. For now, baby steps until I get there!

I still have a lot to learn in this journey, but with understanding, awareness, education and most importantly SUPPORT, we will be fine.