The News We Were Waiting For

For those who don't know, Isaac was diagnosed with life threatening food allergies around one year of age. We have video of him eating ice cream cake on his very first birthday. Shortly after that, he had his first anaphylaxsis. It was frightening and not something we had expected.

Medical issues with our children have sadly not been new territory for us. At one week old, our oldest was back in the hospital with a massive infection. It turned out to be multiple issues going on, not the least of which required open heart surgery at 20 mos old. One of our dds ended up being hospitalized with RSV at one month old. One of the kids had a congenital hiatal hernia which we did not discover until 8 mos and then followed that up with delayed myelin growth. And last, but not nearly least, all but one of our kids had an apparently hereditary issue that we had no clue even existed in our families until it appeared in our children. This required monitoring and for two, 4 surgical procedures in total. When Iz was about 8mos old, he had the second of the two surgeries required for him for this matter. So...when his first birthday arrived, we thought that we were finished with specialists.

Then there was the trip to the zoo, the dinner where he was choking on nothing and turning blue, and a number of other occurrences which would have frightened any parent. It was the zoo trip that sent us finally to the allergist. I will never forget sitting on the tram with our boy wrapped in Ski's coat knowing that something was very wrong, but not really sure what.

I will also never forget the horrible advice I was given from the doctor which led us to find a pediatric allergist. At the time, there were only two and we chose the one in Durham. Not only did I seek out a new doctor, but I found a voice and decided I needed desperately to advocate for my son. At first, I was a bit apprehensive. People thought I was over protective or a bit daft. But I was determined and kept thinking about what those same uneducated people would if they had watched their child so close to death as I had. The one thing I knew is that my son needed someone to protect him and that God had placed me in his life to do that job.

At that young age, my son was very aware of the foods that were making him sick. The first thing I worked on was educating myself on how to read labels. This all happened before the new labeling laws were passed. I had to remember hundreds of different names of his allergens. I needed to call companies endlessly. I quickly learned which companies were helpful and which were not. At the time, I was dealing with milk, egg, soy, chicken, beef, pork, peanuts, tree nuts, and wheat. It was absolutely overwhelming!! Every time his allergies came up and I mentioned the long list, people could not believe it. They would look astonished and wonder what in the world he ate. Once I gained his trust, he was eating like a king. In fact, he was very low in his percentiles when he was first diagnosed. Once we pulled his allergens, he jumped two growth curves in one month!!

Not long after we began seeing the new allergist, we were able to add in pork and soy and much later chicken and wheat. For a long time, he was no longer allergic to wheat, but he seemed to do better gluten free. He was gluten free for four more years and last year, he began eating wheat once again.

I have had all kinds of people approach me with "cures" for Iz's allergies. They think I must be uneducated. Not so. I'd say within a month of Iz's diagnosis, I was approached by someone on the internet who told me about these unproven cures. I researched and came to the conclusion that it was neither safe nor the path that we should be taking with our son. But I will tell you, ever since then this topic has come up over and over again. I was very pleased when I came across an article written on the subject by Dr. Robert Wood, a well known and well respected allergist who also has life threatening food allergies himself. I was not surprised to see that he had come to the same conclusions that I had.

So that brings me to today. The last time my son had egg was at the age of about 2 1/2 - 3yo. I was having many doubts and questions. We had never truly seen a serious reaction to egg. He had refused to eat them which was very normal for him. He refused all allergens for the most part. His test results, both skin test and RAST were extremely high. So, one morning, I gave him a pea-sized bite of egg. My son, who had so many allergies, but only understood his milk allergy, broke out in tons of hives and grabbed at his throat. He looked at me and said, "Mama!! Why you give me milk?" I burst into tears and told him I was sorry over and over again. I never once doubted his allergies again. Never!!

For the past few years, we have watched his egg tests go up and down. They have hovered closer and closer to challenge range, but they never coincided until this past August. So on Wednesday, we went back to Duke and Iz had some eggs. Two to be exact. He sneezed a time or two. He rubbed his eyes now and then. We went through the challenge without any incident other than that, but we had to stay an hour after to be safe. At the hour mark, his ears turned bright red and from temple to temple his forehead turned bright red and his left cheek looked like he had been slapped. And finally, he had two tiny hives on his neck. Ski and I got a bit on edge, but Iz was playing Nintendo and answered negatively to my battery of questions like: "Do you feel sick? Does your belly hurt? Is your mouth itching? Do you feel funny?" When the PA saw him, we had to stay and extra 20 minutes. When she returned again, he was perfectly normal again. In the end, she declared it a pass and told us to get him a flu shot (he has asthma). If it were not for the massive amount of experience and knowledge that his allergist has, I would be scared to proceed. But, I feel confident that we will do well trialing the egg at home. There is still a chance that it could be problematic, but that would not be common.

And so while presently, we still have beef, milk, peanut and tree nuts, penicillin, and finally we also added sweet potatoes at about 3yo, he is free to eat eggs!! So daily, he is begging me for eggs. Mom wants to take it slow. That facial redness has me tentative. But he is thrilled with the prospects.