Thursday, April 23, 2009

All about Ben

I wasn't sure what I wanted to write about tonight. But I think it's time to tell you more about Ben's diagnosis. Ben has Spastic Diplegia Cerebral Palsy. He was diagnosed by a Pediatric Neurologist in September 2008...just a week after his first birthday. We really had no idea. We knew he had developmental delays but we really had no idea that it was any more than that. So, let me try to explain what this diagnosis means.

Cerebral Palsy ("CP") in the most basic terms means that there has been an injury to the brain (cerebral) that has caused the person to not be able to use their muscles in the normal way (palsy). CP is not progressive. It is not communicable. It is not curable. It is (somewhat) treatable.
There are 3 main types of CP:
1. Spastic
2. Athetoid
3. Ataxic
A person can also have a mix of these 3 types.
Spastic CP is the most common type (about 80% of CP cases are spastic). It basically means that the person has one or more tight muscles groups that limit their movements.
Diplegia is a type of CP that affects mostly the legs, but can affect the trunk and arms to a lesser extent.

Ben's case is on the milder side of the spectrum. There is a classification system that classifies children affected by CP based on their gross motor skills (sitting, walking, and wheeled-mobility). You can see it here. Currently, both of Ben's PTs consider Ben to be a Level 2. This would indicate that Ben will someday be able to walk indoors unaided and walk outdoors with the use of a walker. This however is some time away but hopefully before he starts school.

Some more specifics about Ben:

1. We're not sure if the CP has affected his speech. He is somewhat delayed but not enough to cause any real concern at this point. He babbles constantly and can say some words (about 4) in the right context.
2. We don't think that the CP has affected his cognitive abilities. I am not sure but have heard that this will be assessed when he's around 3 years of age. Currently, his PT's think he's very bright.
3. His fine motor skills are really great at this stage. He saw an OT once a week for about 6 months. We only see her once a month now.
4. The spasticity in his legs seems to mostly affect his hamstrings and calves. His adductors are not as affected (the muscles on the inside of the thighs). Usually with Spastic Diplegia the adductors are affected which causes scissoring of the legs when walking or crawling. Ben had a bit of tightness in his adductors during a recent growth spurt but lately that tightness has lessened.

When Ben was diagnosed in September (7 months ago), he could roll from his tummy to back and back to tummy. He could roll both left and right. He was not comfortable hanging out on his tummy. He could not crawl in any form. He could not sit unassisted. He could not pull up. Just 7 months later, Ben can sit unassisted (although he still has some balance problems so we don't leave him unattended when sitting). He can army-crawl. He can get up on all fours. He can pull to a kneel. He can hang out on his knees. He loves to be on his tummy. He can use a walker with help. He can go up and down the 2 steps into our family room. HE IS AWESOME! What progress he has made! He is a very hard worker and gets such pleasure out of doing things himself! He amazes me every single day.


  1. Drake sounds so much like Ben, it's almost scary. Although, Drake definitely has some involvement in his right arm / hand and therefore his fine motor isn't so great on that side. He can sit unassisted, too, but still props with an arm while he plays with the other arm. And he crawls beautifully on all fours, but scissors his legs a bit when he tries to walk. Maybe he is in a growth spurt, too, and the abductors are tight? I hadn't heard that as a reason before, his therapists have said it's crossed signals from the brain. Urgh, there is so much to learn and know, it's overwhelming at times! Love hearing everything about Ben, he sounds like he's doing great. So glad you started blogging!

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