JERRELLRetrun to 22q Stories
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Jerell was born a little over 40wks. It was a struggle to stay pregnant that long. I had preterm contractions starting at 24wks and was in and out of the hospital and then on light duty until I delivered my little angel. When he came out, we first noticed that his right eye stated constantly turned all the way inward and he had feeding difficulties. I tried breast feeding, but he just could not latch on. So we switched to normal formula, which inturn turned to projectile vomiting so we had to switch over to soy formula which he tolerated a little better. By the time he was six months he had bilateral strabismus surgery to repair the muscles in his eyes. And I had to check ALL his baby foods for ANY milk products because he eventually developed an anaphylactic reaction to milk. He had to have another eye surgery at 3yrs old. He was very slow to develop and meet any of his milestones. At age three years, he regressed. I was concerned about his speech primarily since I was a young single mom. After some evaluations they concluded that he had autism and “something” else and sent us to a developmental/behavioral pediatrician who ran genetic tests due to his physical features and his severe behavioral challenges. When the results came back, they showed that he had 22q11.2 duplication and referred us to Duke Pediatric Genetics who was familiar with the duplication aspect of the disorder. It has been a very wild roller coaster ride since. He has been diagnosed with PDD-NOS, Sensory Integration Disorder, complex partial seizures, mod-severe receptive/expressive/pragmatic language disorder, precocious puberty, atypical ADHD, and brain damage from the duplication and the seizures. He sees a cardiologist due to chronic bradycardia. He has two geneticists, an autism doctor, a neurologist, and a endocrinologist.