For all of 2013, I was on the hunt for a medical diagnosis for my son, who has a global delay of 45% and is functioning at the level of a 2 year old when he is almost 4 years old. I first noticed his delays when he still didn’t walk at the age of 18 months. At that time, I sought out early intervention services for him and had him evaluated. His speech, cognitive, fine and gross motor skills were all delayed and he was still drooling a lot for his age. So the hunt for a medical diagnosis began as he received speech, occupational, physical therapies and coordination through early intervention. With the help of therapy, my son was 21 months old when he started walking. His vocabulary, speech, fine and gross motor skills all started to develop at a faster rate but all the therapists noticed muscle weakness on the left side and his first physical therapist noted that it could possibly be mild cerebral palsy (CP). After I did some research on CP, I agreed with her.
As I continued to search for a diagnosis for my son, and specifically CP, I ran into several walls. An Early Intervention coordinator who didn’t believe he had CP and would not support a search for this diagnosis, a developmental pediatrician who refused to give a CP diagnosis because she felt I was only seeking disability income for my son, friends who didn’t understand that CP has varying effects on individuals and only recognized severe CP as cerebral palsy, a MRI that came back inconclusive, a neurologist who moved out of state and an orthopedic surgeon who noted muscle weakness too but could not give a diagnosis due to lack of severity. Finally, in December 2013, after pressing on, going from doctor to doctor, receiving word of mouth referrals from friends and therapists, to finally meeting with the actual neurologist (as opposed to his assistant) and armed with every test result and evidence, my son received his medical diagnosis of mild cerebral palsy, with muscle weakness.
Some of the events that could have caused my son mild brain injury (which is what cerebral palsy means – brain injury) are a CT scan I had early on in my pregnancy with him (before I knew I was pregnant), the umbilical cord wrapped loosely around his neck at birth, severe jaundice at 6 days old and a heart murmur (which eventually went away). Any one of these events (and other events too) or all put together can cause brain injury ranging from mild to severe and developmental delays.
All I can say to any parent or individual looking for a medical diagnosis, especially if it is suspected cerebral palsy is to never give up! Now I am looking for a medical diagnosis for myself for pain on my right side, and going from doctor to doctor once again.