A Family’s Perspective
At 4 months of age, we suspected something was abnormal in our son, Hudson. His eyes were crossed, his head was lagging, and other physical issues were present. In an effort to seek answers, we contacted the Children’s Therapy Center and through our Service Coordinator chose Pathways of SW PA Early Intervention Program. We started with physical, vision, and occupational therapies to help Hudson in his journey to overcome such issues. At 6 months of age, Hudson had eye surgery and at 9 months had his first MRI and bout of genetic testing. The results showed delayed myelination, as was also confirmed by Cleveland Clinic.
You go through many stages and you ask yourself “Why? What did I do? What can I do?” When nothing comes to mind, you get angry and ask even more questions and seek more answers. At one-year-old, there was still no definite diagnosis. At 18 months, Hudson experienced his first seizure in which doctors attributed to reflux and then infantile spasms. As a result, steroid treatments were added to his daily regimen. Instead of helping prevent the seizures, Hudson’s seizures increased. He became withdrawn, agitated, and simply was not our loving Hudson. We traveled to Detroit twice meeting with Dr. Harry T. Chugani, MD, Chief – Children’s Hospital of Michigan, an expert in the field of infantile spasms. He was finally able to provide us with a diagnosis of Intractable Global Epilepsy and delayed myelination. We finally had some answers and a better idea of what was going on with our son.
Currently, Hudson has four types of seizures consisting of drop, tonic, complex partial, and absent seizures. He has the best therapists to aid in overcoming residual effects of his health conditions as well as to promote adequate growth and development specific to Hudson. We have seen slow and steady progress throughout his therapy sessions nearly everyday. We are fortunate to have his therapists work with him in our home; the natural environment is important for Hudson and our family. The therapists not only work closely with Hudson, but also with our family. They educate us on the exercises taught and that such exercises do not require a special machine, but rather household items such as pillows, over-stuffed chairs, and carpeted steps.
“We will never stop seeking help, looking for answers, or hoping for improvements in our son’s health. In the meantime, the therapists through Pathways of SW PA Early Intervention Program are helping Hudson in many ways as well as educating and encouraging our family”. –Rebecca, Hudson’s Mom