The story of Sherry-Lynn
My son was born in 1998 and, as a 30.5 weeker, spent the first 6 weeks of his life in the NIcu. After we brought him home at last he developed chronic diarrhea, and a rash in the groin area and, later, on his face. The rash turned into open sores and our pediatrician send us to numerous specialists in an effort to figure out what was causing the bizarre symptoms. My son was rapidly becoming sicker and sicker, and the open sores would not heal. He bled from them constantly..the blood would clot but as soon as his face touched anything, he would bleed again. I truly felt like I was watching him die and no one could figure out why.
One night, after several months of this, we took him into the ER for an unrelated issue (hernias). After an initial examination and determination of what needed to be done for that, the pediatrician on call turned to me and asked, “WHAT is this, on his face?” I explained about all the specialists we had seen and all the symptoms my son was experiencing and finished with, “I am watching him die, and no one can tell me why. ” 🙁 He looked my son over very carefully then finally said, “This reminds me of something I saw pictures of in medical school. I have never seen a case, as it is extremely rare (as we later learned, between 1 in 500,000 and 1 in 1,000,000). It is not likely he has it, but I would like to test him.” (Funny, I remember every word as if the conversation happened yesterday). I told him to test for everything and anything, my baby was dying and I just wanted an answer… Two days later I got a phone call telling me to go directly to the Children’s Hospital with my son…we finally had a diagnosis! The “fix” was so simple I could have cried (and probably did) … He required a large amount of zinc, which was given in a compound for better absorption, and within the first week, his skin began to heal and the diarrhea settled down. It took a while to figure out the exact dose he needed (copper and zinc compete, so we had some issues with that, and his iron levels went “wonky” for a while, necessitating iron injections for a while) but eventually it was all figured out. He had blood work every month for a while, then every three months, then about 7 years ago, it was bumped to every 6 months to ensure that his levels remained stable and within acceptable levels. His immune system wasn’t great for a the first 8 or 9 years of his life but you wouldn’t know it now. He will need zinc therapy for the rest of his life, but he is doing great and will graduate from high school this year!