Itchy Eyes and Trouble Breathing: looking for answers  

The purpose of this particular blog, is to show the importance of being your own health advocate and being the voice of your child when something doesn’t seem right. I respect our doctors and their medical knowledge, however, they can’t be right 100% of the time. They are human. Here is our most recent experience: 

It’s that time of year, where it starts to warm up, and the trees start to fill in, flowers are blooming and budding: Spring. Take a deep breath… and then sneeze and cough. For me, this time of year means that my eyes are a constant red, puffy, my congestion is so bad, it feels like a brick is sitting under my eyes.  That feeling like you have a sore throat, but it’s just so itchy. I have had allergy skin testing done before, at an allergist office. If you are unfamiliar with it, I will explain what happens:

First, the doctor will decide what items to test for. Then it will either be one of two things, the first option is a block, where they have these little plastic probes with the solution they will be testing on them. They will mark the back and push the block into the skin. If they are just testing for a couple items, they may just put the oil/solution on the skin, and then use an individual probe to poke the skin. The second method is a small syringe with the solution and the doctor or nurse will inject it just below the skin where it kind of sits like a bubble. I have had both of these methods done. I find the block to be least painful.

My sister warned me that she has started to notice some allergy related issues with foods. Our youngest brother is also allergic to peanuts. After eating hazelnuts around Christmas time, I noticed my mouth was itchy. I went to the allergist and had them test me for nuts. In addition to the nut extracts, they put a histamine drop on my arm as the control. After 15 minutes, nothing reacted. Not even the histamine. At first, they accused me of taking antihistamine before my appointment. I hadn’t taken my Zyrtec in over a week. The doctor repoked the histamine and it became a large hive. He concluded that there was no nut allergy. Why did you just repoke that histamine spot though? Why not repoke everything? I felt silly for questioning the doctor and just decided to not eat hazelnuts. My seasonal allergies have progressively gotten worse as I have aged, but I never expected my kids to have such different allergies from me or Bobby, who also has seasonal allergies.

For Ben, it started just after he turned one. I think he was about 16 months old, and we noticed after we visited my parents, that he had a few hives. We were unsure what caused it, possibly a new food, or perhaps he touched one of the cats? A couple months passed, he was now 18 months old, and we were back for a visit while my sister and brother in law were in town. We had to cut our visit short by a day, because the second day we were there, Ben began wheezing. I brought him home, and the next day, he had not improved. I called our pediatrician and they had us come in. Two nebulizer treatments later, and multiple oxygen level checks, they sent us home. I attempted to give him some Benadryl, which he spit back in my face and down himself. I put him in the bathtub to get cleaned up, and noticed how much he was laboring to take a breath. I called the pediatrician back and she told me to take him to the emergency room. After a few hours, some breathing treatments, and medication, they discharged us. Blood tests and skin tests both confirmed, Ben has a severe cat allergy.  At the allergist office that we were referred to, the skin test for Ben was negative for everything, including cats. I told the doctor that was impossible because he was in he emergency room due to his cat allergy. The doctor took a probe and repoked the cat allergen. Sure enough, it reacted, in a big way. Now, whenever we visit my parents, or plan a play date with friends who have cats, we have to give Ben a breathing treatment prior to going to that house, and while we are there. When he was little, I had to sit him on my lap, with my one leg wrapped over his body, holding his head between my shoulder while holding the breathing mask in a hand just to get him to sit long enough for the treatment. It was awful. Since he is older now, he understands and does it on its own and his cat allergy is under control.

Ryan on the other hand, has shown no signs of seasonal allergies, or cat allergies. I was still nervous, but pretty confident that he was going to be ok with foods. Right after he turned one, I gave him a Strawberry Nutrigrain Bar and put him down for a nap.  He was asleep immediately, but about 40 minutes after, he was screaming. I went in his room and found his right cheek was cherry red and swollen. I looked down the back of his pajamas, and he had very flat spread out hives. I was terrified. Bobby was at work. I drew a luke warm bath for him, and called Bobby home, then called the pediatrician. I gave him some Benadryl. The hives lasted two and a half days while maintaining Benadryl.

I was convinced it was a strawberry allergy, since he had eaten blueberry Nutrigrain bars before with no issues.  The second day of hives, I contacted my allergist’s office. They brought us in two weeks later to test Ryan for allergies. Let’s just say, it was a fiasco. They didn’t have strawberry in the office to test, which made me so frustrated as I had told the nurse what I wanted tested when I had called two weeks prior. They tested him for the 8 common food allergies, all were negative. The doctor suggested that we give Ryan some peanut butter in the office, he had not had any until that day. Immediately after we put a tiny amount on his gum line, he began to break out in hives on his arm. The doctor seemed perplexed. He explained it is very uncommon that the skin test would be negative, but the food challenge would be positive. But, my younger brother seems to react similarly: not much of a skin reaction, but it can be fatal if he consumes any peanuts or peanut butter. The nurse gave Ryan some Benadryl and we were given a prescription for EpiPen JR.

I brought Ryan back a different day with a fresh strawberry to test him for that. Somehow, this time they also had strawberry extract in the office. They made a serum and had him eat some strawberry in the office, and did a skin test with the extract. This time, I saw a different doctor in the practice, my doctor. He said there was no reaction, while the resident and nurses all thought there was.  I left feeling defeated and frustrated.  I happened to have an appointment at the pediatrician later that day for Ben. I called and the doctor was willing to see Ryan too. After I explained to her what my concerns were, she felt they were valid. We chose to do a blood test on Ryan. The issue with the blood test is that it is not 100% reliable for food allergies. I felt that it was still worth it to try. Poor Ryan had to be poked that day 4 different times to try and get enough blood for the test. He was only 13 months old, with tiny little veins. I was so glad that day was over! Then, while I was at Target the next morning, I received a phone call from the lab, saying they needed more blood to run the panel! Are you kidding me?! Do you know what my baby has been through the last 24 hours?! I cried a bit, then took Ryan back to the pediatrician for more blood work. There, they had to poke his veins another 4 times to try and find a vein good enough to get what they needed.

Then we waited a few days. EVERYTHING including peanuts, came back negative! I was floored!

But, I remembered that the food allergen blood tests were not 100% accurate but began wondering, “Maybe he doesn’t really have a peanut allergy then. The skin test was negative, and maybe the few hives on his arm weren’t actually hives?”

I told myself to stop it, and continue assuming that he was indeed allergic to peanuts. We also continued avoiding strawberries and strawberry flavored everything because I was still nervous.

This was all during the month of January 2017. Fast forward to now, May 2017.  I was waking up with swollen tonsils every day for a month, I thought it was maybe Hay Fever. At the suggestion of my Dad, I made appointments for myself, and both Ben and Ryan at his allergist’s office 150 miles from our home. I am so grateful that I did. Our new allergist is phenomenal, and worth the 2 hour car ride. He listened to me, tested me and both boys. We discovered that Ryan is not only allergic to peanuts, but to tree nuts even more so than peanuts. Ben has seasonal irritants (not technically allergies, but looks to be they will be one day) and is still highly allergic to cats. I am allergic to trees, grass, pollen, molds, cats, and the list goes on. He gave me some medications and tips to combat my allergies and Ben’s seasonal irritants. The picture below is what Ryan’s test looked like just a couple minutes after. (It was much more spread out by the time the doctor came back to check all of us, but my phone was out of storage for pictures after the 15 minute waiting period.) After being at the office for just about 3 hours, I left feeling relieved that we found answers, but also so angry that the other allergy office seemed to dismiss my concerns and it seems to me, now, that they did not test properly to show the true reactions of the potential allergens. 

I honestly cannot stress enough how important it is to be your own health advocate, and to advocate for your children when you feel like something doesn’t seem right. I am now carrying an EpiPen for Ryan, always have Benadryl on hand, and have contacted Kellogg’s to see if it is possible of cross contamination with that cereal bar from back in January. It is extremely scary to think about. We have to read every single label to make sure it is safe, and now I have the added anxiety about potentially leaving the boys with someone else, and what if they don’t read something, or just simply forget about their allergies. I have also learned about the Nutrition Labeling Laws. It is not mandatory to include the phrase “May Contain” on products processed in the same facility or equipment as the top 8 food allergens (Tree Nuts, Peanuts, Wheat, Milk, Eggs, Shellfish, Soy, or Fish).  It is also not mandatory to include oils derived from these sources in the Allergen Line at the end of the Ingredients list. I am so thankful that my degree is in Dietetics because it has helped me navigate through some of this. However, so much has changed in the last 8 years that I still had to do some research.

I ended up purchasing some 2T-Tshirts for Ryan, back when we thought it was just a peanut allergy, and also allergy alert wristbands, to alert others to his allergy. I think it will probably just take some time for us, extended family included, for all of the label checking to become just a normal routine.  My mom was diagnosed with Celiac Disease years ago (another instance where she had to advocate for herself), so reading labels with her is just second nature. Looking for the hidden ingredients for nuts, or asking about cross contamination ahead of time, is just something different to look for so we keep Ryan safe.