Good News

Ever since Penny switched allergists our whole experience has been different. Obviously, different doctor, different experience. Yes, but it has changed our perspective from what seemed like a situation into a journey. A journey which has been beneficial not only for Penny but for the whole family. We have all grown with more understanding, empathy, precaution, and a completely different point of view about food allergies.

Reading through the blog, the experiences we’ve been through as a family and how I have reacted to Penny’s diagnosis and allergic reactions, I’ve felt a shift in perspective. My initial reaction to Penny’s diagnosis was negative, one of complete fear and isolation. As I state in Our Story: “Penny’s diagnosis changed our world. At first, it was overwhelming because we had no idea what having food allergies really meant and we didn’t know how to handle them. What can she eat now? Dairy, peanuts and tree nuts seemed to be ingredients found in almost every food that we eat. Reading labels became everything […]” Not to say that I do not experience fear every time we go to the doctor’s office for a food challenge, or get anxious every time we have a test coming up, but now we see Food Allergies in a new, refreshing way. I know that we can be resilient, but I also have to acknowledge that Penny’s doctor has been a key component of this new attitude towards Food Allergies. He’s been very good with educating us more on the subject and giving us reassurance about safety.

A few weeks ago, it was time for allergy testing. Oooh! What an exciting and scary time! You know, it is either good news- she’s outgrowing her allergies or not so good news- her allergies are the same or worse. We got to the doctor’s office, and after having been examined for her asthma and everything else (height, weight, changes in health, etc), it was “test time”. She was tested for the current allergies and a few more that we were worried about because of family allergy history. This time it was great news. It seems like she has outgrown most of the nut allergies and she is no longer allergic to dog or cat dander. Also, the dairy allergy has improved. Hooray for Oral Immunotherapy! Unbelievable: Her multiple allergies have been reduced to only 2 foods: peanuts and dairy!

I have to say that it is a pretty neat feeling. Knowing that your child is safe around foods that were previously like poison to her. It has also been very exciting for Penny. She has been letting everyone know that she possibly might not be allergic to nuts! So, what’s next you might ask? A cashew challenge. The doctor wants to introduce tree nuts in the office, just to be safe.  Like I said, I always get nervous when it comes to food challenges, but I trust my daughter’s allergist. Penny? She’s very excited about the challenge- she’s even counting the days.

Sometimes these curveballs that life throws at you end up being such a gem. You learn, you grow, and you find peace within yourself. There’s nothing harder than swimming against the current. After accepting the reality of being a Food-Allergic Family, I can acknowledge that whole experience has been an incredible, enriching and learning one.  

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Little People Big Hearts

Being an “allergy mom” and a teacher, there is something that never ceases to surprise me: children have a more compassionate and empathetic heart when it comes to Food Allergies.

It’s been 3 years since Penny started going to school. Some people don’t understand why the school she goes to is nut free, and dairy free for her class. On the other hand, since day one, children at Penny’s school have listened and understood that some food items can make Penny sick. I’ve heard them talk amongst each other about their food trying to make sure that the meal they brought won’t give her a reaction. Of course, the teachers always make sure that the environment is safe, but if the children, by any chance,  have any doubts about their food, they are very vocal about it and look for alternatives. All of this to keep their friend safe. Her best friend is always trying to make sure she brings “safe food” to school. According to her sitter, every day, before going to school, she brushes her teeth really well and washes her hands because “I don’t want to make Penny sick”. Last year, for her birthday celebration, Penny’s BFF was bringing a chocolate fondue to share with her friends. Well, guess what? She told her mom that she needed to make Penny a dairy & nut free chocolate fondue. It was only fair, in her eyes. This made me tear up. Penny was not only able to happily celebrate her BFF’s birthday but was also able to enjoy the delicious treat. See? Is it that hard? Yes, sometimes we have to go out of our way to make these accommodations, but isn’t it worth it? Don’t we accommodate other people’s disabilities without a problem? When is it that empathy escapes our lives? When is it that we stop caring about the well-being of others?

Like I’ve said before, empathy plays a big role in our lives, not only because Penny has Food Allergies, but also because her brother has Sensory Differences, which means that his brain has a difficult time processing everyday sensory information. Sometimes my life feels like a rollercoaster, but there are so many positive things that this rollercoaster has taught us: we embrace and accept the differences, we try to understand others, we try to leave judgement out of our lives, and we are more conscious of the frailty of our existence, and the beauty of life’s imperfections.

 

Kintsugi

When Penny was diagnosed with Food Allergies, our lives were turned upside down; life became kind of chaotic. We had to change our diet and also our whole lifestyle. In the beginning, Food Allergies felt like a huge rock, an impediment, in our journey.

I made sure I educated myself on the subject in order to be able to accommodate Penny’s allergies, and in order to be able to be the best advocate for my child. I read medical articles, joined online Food Allergy Communities, and asked the doctors all the questions I could think of. With all those adjustments that came with Food Allergies, it was so hard to see this diagnosis as something positive. All of a sudden, I was aware of how much dairy, peanuts and tree nuts were part of our diet, and how difficult it is for people to understand that the consumptions of these food items can be fatal to my daughter. Even people who were close to us and who loved Penny didn’t quite understand the gravity of the situation. Outings were anxiety triggers as some common snacks for children are foods that contain Penny’s allergens.

As time has passed and experiences have helped us grow, so has my perception of Food Allergies. I believe that because of Food Allergies our diet is a healthier one, we are now more aware of the ingredients in our food and how what we consume affects our lives. I believe that because of Food Allergies our whole family has more empathy towards other people. I believe that because of Food Allergies, I have learned to enjoy and value the present moment. I believe that Food Allergies have brought our little family a bit closer; it is hard for me to trust anyone to babysit Penny, so our outings always include our children. I believe that Food Allergies have helped us value life a lot more, and have made our lives richer.

In the beginning, Food Allergies were tough, not only for Penny but also for me. It was a very emotional transition; I would get, and still remain, very anxious because I felt an inescapable sense of dread, always waiting for the next allergic reaction. By the end of the day, I would be mentally and emotionally exhausted. However, the experiences that have come with it have helped me embrace the imperfections in our lives, and transform the way I perceive the whole situation and everything that comes with it.  Kintsugi: Just like the Japanese have made beautiful art out of imperfect things, I feel that these unique experiences have made me more conscious of the frailty of our existence and the beauty of life’s imperfections.

Even though these lessons were learned the hard way- because let’s face it: Food Allergies are not a walk in the park, I feel that it has made us a better, more united family and if this is so, for these experiences I am Thankful.

 

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.

 

 

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

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