At long last, we had a look in Patrick’s brain last week. His MRI was done in January but the waiting list for his neurologist was very, very long. But I got a call midweek last week asking if we had time on Friday morning and we finally had a chance to sit down with Dr. Lloyd.
The scans actually looked better than I had imagined from reading the MRI report… nothing like the bit glowing spots you see on medical shows on TV. (Made me realize that they probably exaggerate those images to make it easier for the viewer to interpret what they’re being shows.)
The front portions of Patrick’s brain appear totally healthy. That means that his ability to learn and understand his world is completely intact. So is his ability to control his emotions.
But, as we’d suspected, those back portions do show damage. It’s called a watershed injury. What that means is that just like in a drought the crops farthest from the water source are the first to die because there isn’t enough water to reach them.. when Patrick’s heart stopped and his blood was being circulated by CPR, the areas at the ends of the blood vessels were starved for oxygen, and so they died and there is scarring in those places.
The result is what looks on the scan like a fuzzy white ring around the back third of Patrick’s brain. Instead of one big injury, it’s a mild/moderate injury spread out at the end of the blood supply.
We asked Dr. Lloyd about how this injury would affect Patrick. We weren’t much surprised by what he said. He said that injury would definitely affect Patrick’s motor planning. (By motor planning, I mean the way his brain sends signals telling his body how to move.)
He said that Patrick definitely has cerebral palsy. Because the injury is on both sides of the brain, both of his legs are affected. But, the right one (the one we brace) is definitely the one that will have the most problems because the injury is most severe on the left side of Patrick’s brain. He recommended that we continue with physical therapy and bracing to help Patrick’s ability to walk improve.
We asked if the injury would account for Patrick’s problems with speech, and Dr. Lloyd wholeheartedly agreed with our working diagnosis of apraxia. Again, although Patrick’s intellect and ability to understand are there, his brain has a hard time telling his muscles how to move, and so organizing the movements of his mouth to speak or his hands to sign is difficult for Patrick.
Dr. Lloyd did say, though, that he is very encouraged with how much Patrick’s brain has already been able to build new pathways. The fact that his right hand doesn’t show any signs of problems, despite that being where we first noticed the injury… and the fact that he crawls normally, even though at first he dragged his right leg… Those are signs that Patrick’s brain is adapting and learning to work around the injury. And he said that with continued therapy and school and help at home, that he expects Patrick’s abilities to continue to improve.
He told us that it is very important that we get Patrick working with an occupational therapist, something we’ve been leaning towards, but now know we need to make a priority.
Finally, we talked about Patrick’s vision. Apparently, the greatest area of damage is in the part of the brain that processes sight. We’ve been watching Patrick’s vision for a while now. We’ve noticed that he tends to get very close to things he wants to study, that he gets frustrated trying to work on puzzles that are too complicated and just can’t quite seem to sort out how to fit the pieces in. Well, Dr. Lloyd said that he would consider it very likely that Patrick has some degree of cortical blindness.
This doesn’t mean Patrick is blind. In fact, like the rest, it is likely that his eyes function completely normally. However, the signal in the brain might be confused or cluttered, making it hard for him to interpret what he sees. Dr. Lloyd recommended that we take Patrick to an opthamologist to have his vision evaluated, and he recommended that we talk to the school district about vision therapy.
I didn’t know they even had such a thing, but when I talked to Patrick’s teacher, she confirmed that yes, they do have a vision therapist regularly in the classroom. She also said that Patrick does act in class like sometimes he has a hard time seeing. She said he often leaves his chair to get a closer look at a picture during circle time, then once he’s seen, goes back to his seat.
So, we’ve got an appointment, though very far in the future, with a pediatric eye doctor and hope to be able to sort things out soon. In the meantime, I’m trying to be more mindful about being patient with tasks that might require sorting out a more complicated set of visual input… and I’m being more diligent in the eye exercises Patrick’s early intervention physical therapist were so certain he needed.
And that was about it. Dr. Lloyd said that the damage isn’t progressive, just scarring from an injury. There isn’t a risk of seizures that would cause further damage, either. (Whew.) But, he said that he wants to follow Patrick regularly for the next several years to make sure that he continues to improve. We’re on the waiting list again for another appointment, hopefully in 4 months.
So – not a lot of new information.. But it is comforting to know that our suspicions have been correct and that we have been doing the right thing for all this time. If anything, these diagnoses will help us to get Patrick even more of the help he so greatly needs.
Patrick Hoopes 