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.

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.

 

 

 

 

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.

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.

 

 

Of Family & Food Allergies…

Throughout the years, I’ve learned that what seem to be obstacles in our journey, usually bring something good. Although having food allergies is, most of the time, overwhelming, in my case it has had its share of positive outcomes. We are aware of what we eat, we have a healthier diet, we grow some of our own organic vegetables and fruits, we connect with people around the world going through the same thing, we have developed more empathy towards people, and such.

I think that one of the hardest things about having children with food allergies is feeling that you are alone in this and have no support. Maybe it’s “a phase” that we all go through? I don’t know. I found myself with something completely new, life-threatening and misunderstood by a lot of people. Sometimes, I still feel this way. Also, I feel that some people, because of their lack of empathy, isolate us. I’ve heard all kinds of comments, ranging from “I can’t believe we can’t bring homemade cupcakes to school” to “come on, can’t you give her a little bit of the allergen to help her outgrow this?”  Ummm… NO! Then, you not only feel lonely in this, but also frustrated.

I had been looking for a support group without success, when I discovered that 2 of my cousin’s children have severe, life-threatening food allergies (one, 11 yrs old is allergic to peanuts and tree nuts; the other one, 17 yrs old is allergic peanuts, tree nuts, lentils and peas). Of course, I am not happy that my cousin’s children have food allergies, but in a way I am excited to have found someone that understands what I’m going through. Food allergies have connected us in a whole new and different way. It has improved our relationship, making it one “full of love, support and tremendous understanding.” as Maria (my cousin) puts it.  Ever since we learned about our children’s allergies we talk on a daily basis in order to share information that is valuable to either of us.  And even though we live far away from each other, we are there for each other to learn and help advocate for our children.

I’ve been blessed with someone that reassures me that even though it is a “rocky” journey, it’s a possible one. When I panic about sending Penny to preschool with her food allergies, seeing her children all grown up and healthy gives me a sense of hope because it reassures me that it is something we are going to be able to live with.

In this world where Food Allergies are misunderstood, I suggest you try finding someone who’s walking the same road as you are because it will make your journey a lot easier. I know it has helped me a lot. I am so lucky, that in my case, this person is also family.