Empathy

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

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

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

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

Support is Key

Two years have gone by since we learned that Penny has life-threatening food allergies. It has been all about learning and although difficult, because we’ve had to change our lifestyle, it has resulted in an enriching experience.

 

In the beginning, I made sure I had read all the information pamphlets that the allergist had provided. I searched online and visited food allergy online organizations that provide helpful resources and made sure that the people around me understood that Penny couldn’t eat dairy, peanuts or tree nuts.

 

When Penny had her 1st food allergy blood test, the results were not too high. Interestingly, the result for the dairy allergy was in the “safe zone”, meaning that she could’ve participated in an oral food challenge because it showed that the allergy was not severe. However, she had only experienced allergic reactions to dairy, and they were not pretty. On the other hand, the peanut allergy results indicated that an ingestion of peanut would mean a severe reaction; luckily she had never eaten peanuts.

 

A few months after Penny’s diagnosis, I decided that I was going back to work. I was blessed with a friend who offered to watch Penny while I worked. My friend, Yeshica, understood the severity of her allergies and was always cautious. I am happy to say that while Penny was in her care she didn’t experience a single reaction. In my opinion, it is people like her that make the world a better place. ☺ I was lucky to have found someone with great empathy and understanding that also gave me great support.

 

A year went by, it was time for Penny’s yearly check-up with her allergist. The blood work revealed that now both of her allergies were severe. The allergist told me that it was unnecessary to do a skin prick test- the blood work results were so high that it was obvious that the skin test was going to be positive. Also, it could cause her a severe reaction. This made me more anxious. I felt desperate, helpless, lost… At this point, Yeshica was not going to be able to watch Penny anymore while I worked and I looked for daycares with good food allergy policies without success. I wondered if I was being too picky, but I went with what my gut told me. I always put my kids before anything, so I decided to stay home in order to teach Penny what she can and cannot eat.

 

A couple months after, I had a doctor’s appointment. I enrolled Penny in an hourly care center for a couple hours. The center is a peanut free facility and knows about her allergies. After my appointment, Penny still had one more hour left before I had to pick her up, but I decided to pick her up early. When I got to the daycare center, she was scratching her eyes. I thought she was tired. Then all of a sudden she started sneezing. How strange! By the time we got to the car, she was covered in hives…When we got home, one of her eyes was swollen. I panicked! I thought: “In the daycare center they couldn’t have given her any of her allergens because she has a special diet and she even wears an allergy bracelet.” So, I proceeded to give her Benadryl and called the allergy clinic. Their staff instructed me to take her to the ER. I live literally 5 minutes from the hospital, which seemed like an hour. We got there, and thankfully the antihistamine had done its work. We were kept there for about 4 hours to make sure that no biphasic reaction ocurred and were later sent home. A biphasic anaphylactic reaction is when symptoms recur without the exposure to the allergen. It can happen within 1-72 hours. Thankfully, everything was fine! This experience confirmed that I had taken the right choice by staying home with Penny. Also, now I think back and ask myself if I made the right choice by giving her the antihistamine instead of the epinephrine… If this happens now, I would use the auto-injector- “when in doubt, use the Epi” is my new motto.

 

After this incident, it has become extremely difficult for me to leave Penny under the care of anybody else. Just the thought of leaving her at a daycare center or with anyone else gives me a lot of anxiety… This is when my husband suggested that I find a local Food Allergy Support Group. I searched everywhere without success. The closest one is, at least, an hour away. So, instead, I started this blog in hopes of creating awareness about food allergies. That same month, after a lot of reading and writing, it occurred to me to start a Support Group. Ahhhh, “necessity is the mother of invention”, isn’t it? So, I started asking organizations, clinics, patient advocacy, and pretty much everybody for help. Everyone seemed so excited about the idea, but nobody seemed to know in which direction to point or guide me. Finally, I thought to myself: “if there’s anyone that might want to help, it has to be someone from the allergy clinic.” I was right! The whole staff was very excited and started moving towards helping me create a support group.

 

Last week was our first Support Group meeting! An allergist and the head of the allergy clinic guided it. They talked about food allergies in general, explained what anaphylaxis is, what are the symptoms and what to do in case someone experiences anaphylaxis. They taught us how to use the EpiPen and the Auvi-Q auto-injectors, and answered questions. The next meetings are going to be guided by us, the patients, with the support of the allergist and his team. I am so happy to have finally found the right group of people to help us go through this process and to support each other in every step of the way. Like I’ve said before, in my opinion, Support is the Key when it comes to Food Allergies.

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.

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.