Right after John was diagnosed, I did hours and hours of research and learned that the Children’s Hospital of Philadelphia has one of the only pediatric stroke programs in the whole country. After sending over all of John’s medical records, I finally heard from the scheduler and booked the earliest appointment we could get.
On November 20th, we were seen by the entire Pediatric Stroke team, which consisted of a neurologist, an occupational therapist, speech therapist, physical therapist and social worker. It was a three hour appointment and John did great! Everyone he saw fell in love with him. They couldn’t believe how social, vocal and happy he was.
The neurologist we saw was wonderful, she gave us a more in depth look into John’s condition and let us know that physical and occupational therapy can work wonders. She did, however, inform us that it’s impossible to know what John’s symptoms will look like as he gets older. She said there’s a 90% chance that he’ll walk, but whether he’ll need extensive bracing or just a simple ankle foot orthosis is impossible to know. She said he will definitely have some degree of spasticity in his left arm, but whether or not he’ll be able to use it functionally is impossible to know. It was definitely hard to accept the lack of concrete answers, but we were much more prepared this time.
One thing we were hoping to get out of this appointment was a more precise estimate on when John had the stroke. The neurologist who diagnosed John told us that it happened some time during the 2nd or 3rd trimester, but not during birth. The neurologist at CHOP, however, told us that she couldn’t age his stroke, but that it was most likely at or around the time of birth. I trust her opinion because she sees multiple stroke babies every day, whereas our original neurologist only saw one or two per year.
His speech evaluation went great – she had no concerns and thought his speech and eating skills were age appropriate and developing well. His PT and OT evaluations went well, too, he had just started to roll at this point, so the therapists were pleased with that. He also had good head, neck and trunk control and could sit with support very well. As expected, they let us know his left upper extremity motor skills were abnormal and asymmetrical (at this point he was barely using his left arm/hand at all and had very little to no awareness of his left arm/hand), but they talked to us about encouraging use of the left side using different techniques, most of which we were already aware of.
We left CHOP feeling very grateful that we have such wonderful doctors and resources just a short drive from where we live. We also got a more precised diagnosis for John – perinatal stroke, left sided hemiparesis and spasticity.
John's Journey 