Our son was a year old when we first heard about Eosinophilic disorders. At that point I had taken our son to mulitple doctors and to many doctors multiple times repeating over and over that our son still wasn't ok eventhough he had been diagnosed with milk and egg allergies.
At this point our son had been throwing up everyday from November of the year before and it was already April. In addition to that his weight was not improving, but rather still dropping lower down off the charts. He was so weak that although he knew how to crawl he rarely did. His finger nails hadn't grown in months, and for a child who got his first hair cut at 4 weeks old and one every month after he hadn't had one for 3 months at this point. We knew things were serious, but we weren't getting any answers. The allergist we saw then said that our son was just a puky kid and we would have to get used to it. I was livid!
When we went to the pediatrician for our son's first year appointment I mentioned the continued symptoms to the doctor as well as my frustrations with the treatment that our guy was getting. That was one our incredible pediatrician mentioned two words that have changed our lives forever: Eosinophilic Esophagitis (EE). My first response was "Eo what? Can you please write that down?"
In addition to writing the name down he also gave us a name for a new allergist...this name would too change the course of my sons treatment and brought us hope that something could be done.
When I got home that day I starte scouring the web, looking for anything and everything about the disease. Around this time I had also been searching for support for food allergies on the web. As part of my leaving no stone unturned I decided to go on to yahoo groups and search for food allergies. I found a few that were very small and then POFAK (Parents of Food Allergic Kids). It had a not stating that they had moved and were now part of Kids with Food Allergies. My life regarding my son's allergies changed greatly because I found that site. It has offered a wealth of information. Therefore, when I needed to figure out what EE was I went onto the forum and thank god I did. By asking question after question and speaking to one wonderful woman in particular I knew what I needed to ask the doctors and when I would have to push to help my child. I truly believe that being a member of Kids with Food Allergies brought my son's diagnostic period down to a mere three months and it also shortened the time it took to manage his symptoms.
If you are interested to find out the long journey we went down and are still following to help our son grow you can check out the links to the left. If you are interested in organizations that are an amazing wealth of support and are also an amazing inspiration click the links to your right.