The story of Melissa
Madelyn was born on 1-11-13. Shortly after birth, she appeard to have seizure like activity. Her muscle tone was described as “low” by the providers that treated her. She never cried until she was 6 days old. After a 14 day NICU stay, she was sent home with an unclear diagnosis. These seizure like episodes continued. The episodes would sometimes last for hours and extend into days until she would be back at her normal baseline . During these times, her extremities become limp, she has no head control and has difficulty swallowing. She was very late hitting developmental milestones, weekly OT and PT began when she was 5 months old. In October of 2013, after reviewing videos of Madelyn that I had shown to the neurologist, he made the diagnosis of Alternating Hemiplegia of Childhood, a one in a million disease, a lifelong condition without a cure. While it is a relief to have a diagnosis, the future will be challenging. Her muscle weakness not only affects her arms and legs, but her internal muscles too. Especially her GI tract and her lungs. She aspirates thin and thick liquids and has sleep apnea, which is still being evaluated, however, may require sleeping at night with BiPap. She now also sees a speech therapist once a week. We are fortunate to be cared for at a wonderful childrens hospital, however, her Alternating Hemiplegia specialist is a 5 hour drive away. Between her episodes she makes tremendous developmental strides. She is a happy baby who loves pulling hair, eating anything she can get her hands on, and laughing at her big sister.