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.

 

 

Anaphylaxis

Penny started preschool. What can I say? I think it has been one of my biggest and nerve-wracking decisions, and as much as I would like her to, she can’t live inside a “safe” bubble.  We are so happy to have found a school where her food allergies are taken seriously. The staff is always conscious about what’s going on, and the school even banned peanuts, tree nuts and dairy from her classroom.  In the beginning, I think it was a big shock for a lot of people. They felt, I think, like they didn’t know what else they could bring for snack, but eventually, everybody found ways to feed their kids avoiding those allergens.

 

I am lucky enough to be a teacher in the school where Penny attends. This is a blessing, for I can always make sure that the food that’s served around her is safe and I can detect if anything is causing any reaction. In the beginning months of the school year, she had a mild reaction. Apparently, one of her classmates had dairy as part of their lunch and had not washed their hands properly causing Penny to get redness in her eyes. As soon as I noticed the reaction, I gave Penny her allergy medication (antihistamine), and watched for any other symptoms. Thankfully, she started improving, and the situation didn’t turn into anything big.

 

Well, two months ago, the story was a bit different. While Penny was in music class, I noticed that she was coughing a lot and was breathing with difficulty. I thought it was her asthma acting up to the winter season, so I immediately gave her the inhaler and allergy medication. There were no skin symptoms or any other sign that she was having an allergic reaction, so she went back to her class. I kept observing her breathing and didn’t notice major improvements, so I talked to one of my co-workers. As it turns out, that same person was earlier eating something with dairy and forgot to wash their hands properly.  Then, held Penny’s classmate’s hand, who later, held Penny’s hand. As I’ve stated before, Penny can react to allergens by skin contact and this time the reaction started getting out of hand.

As soon as I understood what was going on, I immediately called her allergist. He suggested observing her closely because the inhaler and the allergy medication can mask symptoms of anaphylaxis. He also told me that if at any moment Penny’s breathing started to deteriorate again, I had to use the EpiPen and head to the hospital. I hung up the phone and went on with our day, as Penny’s symptoms seemed to be improving. I got off work, picked up my son from daycare, and on our way home, Penny got redness in her eyes, she started coughing again and looked like she was having trouble breathing. Thankfully the hospital was on our way, and at that time, less than a minute from where we were. I parked the car as soon as I could, got the EpiPen, told Penny that I had to give her a medicine to make her feel better, and injected her with the EpiPen. Within a minute or less all of her symptoms went away. The redness of her eyes started clearing up, and her breathing went back to normal. We rushed into the ER and explained to them the reaction. She was rushed in to check on her vitals, and fortunately, everything was getting back to normal.

After that, she was kept in the ER for several hours to make sure there were no biphasic reactions, and was later sent home with cortisone, and some other medication.

 

I think this has been the scariest experience in my life. I was frightened seeing that my child was having trouble breathing and I was scared about how she was going to react to the EpiPen. Thoughts kept running in my mind: Was one EpiPen injection going to be enough for her? Is she going to have a biphasic reaction? What if she starts getting sick again when we get home? Was she going to be O.K.? Gratefully, she was fine.

 

I think that every experience teaches us something, and in this case, I learned a few things, one of them being that I am stronger than I think. Also, that I knew exactly what to do and I used the EpiPen correctly. I learned that it doesn’t matter if people know about your child’s allergies, they can forget, so it is O.K. for me to keep reminding them to use safety measures.  Most importantly, this experience reminded me that there is no better advocate for my children than myself.