Residual Deficits After Severe Brain Injury: Nancy Part Twelve
In part twelve I discussed with Nancy’s mom the residual deficits after severe brain injury Nancy was experiencing. Some of the ongoing issues that come with brain injury.
For Nancy’s parents, as with almost all of the caregivers we have interviewed, there is a sense of exhilaration that she not only survived, but that she came out of her coma as quickly as she did. Yet, after a few months at home, the awareness that this is more than a few month detour increases. Fortunately, Nancy gets referred to just the right pediatric neuropsychologist, a man I highly respected during his tenure at the Marshfield Clinic, an institution which has taken a leadership role in pediatric brain injury for a long time.
We were talking about where Nancy’s recovery was at as she was finishing fourth grade. Let’s pick up the conversation there. So when she’s getting the tutoring, what are the residual deficits after severe brain injury that she’s having?
I think the brain to hand issue; the writing is difficult. She can verbally express what her answers are quite well. Sitting still was very difficult for her, to sit in the kitchen with this nice tutor who has had a son who had a brain injury himself that actually passed away. She had a very difficult time just sitting still and staying put. It was frustrating for all of us and frustrating for herself too because – c’mon. We used to say “well you used to do this. You used to love to read. You used to like bananas” or, you know, whatever the situation was. I had to realize, you know, mourning the loss of the daughter I had. And it took me quite a long time because I wanted that daughter back.
Does she remember who she was? I mean, now it’s been nine years, but for – going back to May and June of, of her fourth-grade year, does she remember at that time how different her life was? What her life was like? What does she remember?
I don’t think that that was even on her mind. I don’t think she could put that into terms. Embracing – we went to – there are a couple of fourth-grade activities that we’re going on. One related to a sleepover at the school and it’s in the middle of winter when there’s not much going on anywhere else, and so the kids stay over. They make T‑shirts. They put on a play. They do all sorts of things.
Well, she’s invited there for the dinner and, , they also have, like I said, making T‑shirts and things but the – when she walked in the room the noise level was so high for her that that was disturbing; put her on edge, so that was a stressor. And they all ran up to her and hugged her and the emotion in her face wasn’t “oh I’m so happy to be here”, “oh this is too cool”. It was absolute terror.
She has her mouth open just like somebody is hurting her severely because that touch and hugging is – she doesn’t like that anymore. She doesn’t like to be touched a lot. It’s almost autistic kind of to me, that’s what I associate it like – unless if she wants it, you know, the hugs? It, it seems like it’s uncomfortable for her even touching her.
Did they describe her as being hyperactive as a residual deficits after severe brain injury?
So that can’t sit still, that need to pace as a residual deficits after severe brain injury – did they move into a formal diagnosis of ADHD?
When we down to, the neuropsych doctor who was extremely wonderful. He was actually in retirement and he came back on a grant.
What is his name?
Dr. Theye. He’s a wonderful man and until we actually sat down and talked to him, he explained it all. He says it’s nervous energy from this being reconnected and this is how she can expel it is by walking. The tapping stopped once she figured out about the walking piece; that pacing took that place. Some of the other things, liking to make noise, you know.
Even to this day she’ll sit – and if she’s in the kitchen and she’s doing something, if she’s hitting her spoon on the side of the dish to get whatever off of it, she’ll keep it up a couple, three, four times just because, and repetition, repetition, repetition; she’s very rep – repetitive with things. Writing – she’d perseverate with a “p” over and over until it was just pitch black. Everything was so hard on the paper. Everything was so hard just walking around on her feet even was a pounding, was a jolting. So, he opened our eyes to a lot of things that we didn’t understand.
When did you get to Marshfield?
I think it was July of that year so it was about five months after the accident?
Tell me about the neuropsych assessment he did?
He actually took her into a room with an associate do all the testing. And then Dr. Theye sat with us and he interviewed her first which was really cute because he likes riddles, and he asked her about some riddles. And she understood some of the jokes a little bit if they’re point-blank obvious and some of them she didn’t. She did get some of them, some of the riddles.
But once she was out in the room and he started explaining to us what was going on and it was just, like, duh. You know, you could’ve, we just couldn’t believe that we didn’t figure this out for yourself.
And my husband was instrumental in digging. He was the computer guy. He got into books. He got into everything trying to just investigate brain injury upside down and backwards. It was amazing and why? And he would tell me, you know, I just didn’t have the time for that unfortunately.