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.

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.

 

Playdates

Penny is almost 3yrs old. Now she has friends, and of course this means that we get to participate in playdates. Exciting, huh? Well, although it’s great that my lil’ one is socializing more, for us moms of children with food allergies, the whole thing can turn out to be a little bit frightening.

When the word playdate comes up, I can’t help but get a little anxious. Have the children that are going to be present eaten or touched anything with [insert allergen]? If the playdate is at someone else’s house, what are the snacks that are going to be offered? What if Penny get’s a hold of a toy that is contaminated with [insert allergens]? These are some of the questions that run through my mind. So, what do I do?

  • I try to host the playdate. I ask the people coming over to refrain from bringing anything with allergens, in our case, milk-based products, peanuts & tree nuts. I’ve learned to ask my guests to wash their hands right when they get to our home- that way if they have allergens in their hands, I make sure they wash them off.
  • I alert the people that are going to be around Penny about her food allergies. Sometimes I might get carried away talking about this topic, but you need to understand that it is only because I want to keep my child safe and it simply takes a small amount of the allergen for my child to get an allergic reaction, and potentially an anaphylactic shock.
  • If hosting the playdate isn’t a possibility. I bring all of Penny’s snacks. Usually, I bring more than what she eats so we can share them. Usually, on the go, I carry Enjoy Life products, which are safe for almost everybody, since they are free of the top 8 allergens. Also, this is the reason we refuse to accept homemade treats, we don’t know what ingredients are in them.
  • I carry wipes everywhere. Wipes have been proven to be a good way to eliminate allergens from surfaces, so if we are going to eat I wipe down Penny’s area. Don’t feel offended if I go to your house and wipe down tables or chairs- I’m not insinuating that your house isn’t clean, I’m just keeping my child safe by making sure there are no allergens in the surfaces she will be in contact with.
  • Last but not least, I carry her medication (a bottle of Benadryl and 2 EpiPens) and emergency plan everywhere. Sometimes, even when you take precautions, reactions occur.

 

I was once told that I was making myself more nervous by reading so much about food allergies and posting so much information on social media. My intention is the exact opposite, I am trying to learn and inform myself on the subject in order to be able to create awareness and advocate for my child and for other people with food allergies. Food allergies are real!

 

 

Ugh… Cross-Contact

A few months ago I had to go to the supermarket and took Paulo with me. Penny stayed with Juan at home. Close to the cash register, Paulo saw a small fridge where they keep refreshments and asked me to buy him a small bottle of (cow’s) milk. He barely asks for stuff that we don’t keep at home because of allergies, but the look he gave me convinced me.

We paid and went home. I cooked and Paulo had the milk with his dinner. At one point, he was distracted and accidentally spilled the milk. Cautiously, I wiped the table, we washed our hands and we went back to eating. Moments later, Penny was breaking out in hives. What had happened? Either I didn’t wipe down the table correctly and contact with milk gave her an allergic reaction or maybe either one of us didn’t wash our hands correctly. I gave Penny her medication, and the reaction went away.
I should have known better… Needless to say, I am not bringing home any more allergens!

Allergens in Non-Food Items

When you think about Food Allergies you obviously think about allergens in food. However, there could be allergens in non-food items, in products that you use on a daily basis.

As soon as Penny was diagnosed with food allergies, I remember going through all of our food and getting rid of anything containing the allergens she would react to, but I forgot to check the non-food items. Then, one day, I kept asking myself why her eczema wouldn’t go away. I started to notice that the eczema would get worse after bath-time. It occurred to me to check the body wash she was using. There it was! One of the ingredients was macadamia nut oil. Needless to say, I discarded that body wash and her eczema started to improve. From that day on, I read the labels, not only of food products, but also of everything that I buy.

 

After doing some research online I found information on non-food items that can contain allergens, these include: soap/body wash, shampoo & conditioner, cosmetics, lotions, sunscreen, ointments, household cleaning products, play dough, bird feeders, pet food, medication and so on.

 

I’m sure that this list could go on, so always remember to read the labels of the items that a person with food allergy will be in contact with. I know that with my daughter, all it takes is skin contact with the allergen for a reaction to happen.

Be Safe!

 

For more information about allergens in non-food items, visit:

 

http://blog.foodallergy.org/2014/07/11/questions-from-fares-mailbag-allergens-in-non-food-items/

http://www.kidswithfoodallergies.org/resourcespre.php?id=1

http://www.kidswithfoodallergies.org/resourcespre.php?id=14

Spreading Awareness

My friend Karla, who writes a column about parenting every Sunday for a local newspaper in Puerto Rico (Índice), wanted to write about Food Allergies. Since it is something that she hasn’t experienced with her daughter, she came to me with some questions and shared my story in her column yesterday. I am happy to be able to help create more awareness through my story.

To read yesterday’s column, visit:

http://www.indicepr.com/noticias/2015/03/22/style/38867/cuando-tu-nin-es-alergic/

 

*It’s written in Spanish*

Walk a Mile in my Shoes

Imagine this: You have the power to see all the germs in the world. You’re with your children and you are going to take one of them to his karate class. All of a sudden you open the door to the waiting room and you see everything covered with germs, not only are they regular everyday germs, but potentially deadly ones. You scan up and down and side to side, and you see them everywhere: the seats, the tables, the floor and the corner where children play. You also see them on other people who are going about their day and waiting for their children to come out of their sports class, somehow, unaware of the dangerous germs all over the place. You think about leaving, but you are required to stay in the building while your child is in the class. So, you stay, and keep a close eye on your child so she doesn’t get infected. Now replace the germs with allergens and you’ll have an idea of what parents of children with food allergies have to deal with every time we step out of our home. However, unlike with germs, we cannot use hand sanitizer to remove allergens from our hands or even surfaces, so we go wipes in hand, and EpiPens ready for whatever life might throw at us: be it a child with allergen filled hands trying to share a toy with our child or our child sitting on an allergen-filled seat, basically a child just being a child. How would you feel in a situation like this?

 

Some people’s food allergies are not limited to the ingestion of the allergen; the simple action of having skin contact with a surface that has been contaminated by [insert allergen] can cause a chain of reactions. This is what happens in Penny’s case. So last Tuesday, when I went to drop Paulo off at his ballet class, that was exactly what happened to us.

 

I walked into one of the waiting areas and the first thing I saw was a child sitting in a chair with pizza-flavored chips. DAIRY!!! I kept scanning the room: there were crumbs of those chips spread all over the rug and who knows where else, and on the other corner a little girl eating goldfish crackers while playing with the toys that children share. More dairy! I took a deep breath, explained to Penny that we needed to move because there was too much dairy around us and it could make her itch (that’s her way of explaining that she’s starting to experience an allergic reaction) and decided to move away from that waiting area. I asked myself where to go; the other waiting area was not an option as it is designated for eating, that would have been more stressful. Also, it was a rainy day. Waiting outside meant waiting in the cold rain. So, I decided to move to the hallway, where we could sit and at the same time enjoy watching Paulo take his ballet class. Next thing I know, we had another child sitting by our side having chocolate milk. Anxiety started rising again. I tried to keep Penny by my side, but anybody who has a two-year-old knows what a challenge that can be. Then, the child with the chocolate milk decided to start walking back and forth in front of us, spilling her milk. At that point, not only was I frustrated and anxious, I was about to panic. Desperate, we put on our raincoats and waited outside for the rest of the class (about 30 minutes).

Why was I about to panic? Almost every time we visit this building we experience an allergic reaction, mostly hives that, in our case, luckily go away with antihistamine.  Do we take precautions? Of course we do. Every time we go out, I wipe down the area where Penny’s going to sit, I bring her own allergy-friendly snacks, I wash or wipe her hands before eating, and I carry her medication, but there’s so much you can do. Food Allergies overwhelm me because, on one side, I’m trying to protect my food-allergic child and on the other side, I don’t want to deprive my other child of everyday activities. In this scenario, things would have been easier if people would have followed the rules and eaten in the designated area. That way, I would’ve just kept Penny away from them.

 

By the time I got home, I was emotionally exhausted. A feeling of helplessness covered me. It is impossible to keep my child protected in a bubble. Instead, I have to find ways to make our lives easier. What would you do if you were in my shoes?

 

 

 

I am THAT mom

Before we knew that Penny had food allergies, I would say that I didn’t understand what the term meant. I used to wonder why some foods were being banned in schools, and quite frankly, I thought that some parents were overreacting when their children were close to an allergen. Of course, I had no awareness, and as a consequence, I couldn’t understand. Now, the story is very different.

Last month, while dropping Paulo at his ballet class, some mothers were talking with the teacher about Valentine’s Day. All of a sudden I overheard someone saying that they hate how now everything has to be store bought and how we can’t have a good old Valentine’s Day with homemade cupcakes and treats. I couldn’t help myself and had to say something. I told them that I completely understood where they were coming from, for I, once, thought the same way. But I also explained to them that I have a child with food allergies and I am THAT mom- the one that is restricting their children’s diet in school.

It was the first time I openly talked to strangers about my child’s food allergies out of the context of her immediate safety and more about the real-life consequences of ordinary things. It’s not that I want to restrict your child’s diet or make your life more difficult than it already is. It’s about caring for others, understanding that the simple act of eating something with an allergen can make my child have a reaction and potentially an anaphylactic shock. It’s about understanding that a craving or a minor inconvenience is not more important than a person’s life.

On a separate experience, two weeks ago, we took our children to a Wildlife Park. There, we got on a tram and took a tour. By my side was this young couple with a toddler. The toddler was tired and hungry, and as a consequence was having a tantrum. A nice lady sitting in front of them offered them a snack and Juan noticed that it contained a peanut butter cup. For the first time, I saw him freak out about Penny’s allergies. Scared, he looked at me and told me about the PB cup. I took a deep breath, it was time to be THAT mom again. I reached out to the lady explaining Penny’s allergies and asked her if it was possible not to open the treat. Another first- asking a total stranger not to eat something with an allergen close to us. Instead, they asked me if it would be OK if they moved away. Of course, it was OK! They understood that all I wanted was my daughter to be as far away from that PB cup as she could. I thanked them a million times, and with a smile on his face the young dad said, “Of course, food allergies are a serious thing!” Honestly, this wasn’t the reaction I was expecting. I was prepared to listen to someone tell me to move away, or to “suck it up”. Instead, I found kindhearted people. This made our day. 🙂

Help me advocate for people with food allergies so we can have more positive experiences like this one.