How Can Physicians Best Help Families with Children with Brain Injury?

Especially with children with brain injury, health professionals need to think outside the "medical model."

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So, ideally, what a physician should be doing to help a family with a child with a brain injury is fairly complex. I think a lot of physicians are very much sort of thinking in what I call the medical model, and brain injury is so much more than a medical model. There's so many other factors that need to be considered and looked at. A child is not living in isolation. They live with a family, they live with an extended family, and they live with a community. And all those factors have to be looked into when you're developing a plan for a child with a brain injury. So from a physician's point of view, you're hoping the physician will be willing to listen to the child, listen to what the family is saying, going with the goals that they want and how to help that. You want the physician to be able to recognize if the child is having seizures, and knowing how to treat the seizures with the best medication to control the seizure, but at the same time not affect thinking skills. So using a medication like lamotrigine, rather than using Phenabarb, for example, which is known to make kids sleepy and not learn things, you want to have the physician be aware that there might be hormonal problems, that puberty may be delayed, that they know how to manage any kind of tone issues or spasticity issues if they are there, to look at balance issues, to monitor growth, to look at hearing, to look at vision, to look at the family history, and is there a family history of some kind of medical condition that is going to impact the outcome for this child and what that might have in terms of the child's development now that they have an injury. You want them to look at the environment that's around there and not just sort of an example. If you come from a family where you have a lot of people who are allergic, environmentally allergic to ragweed and pollens and grasses and molds and stuff, there's a really good chance that child is going to have allergies as well. And now they have a brain injury, and you don't recognize that they have allergies. So here's this child in the summertime, suffering with their allergies, can't really breath that well, not sleeping that well, partly because they have a brain injury and they're not sleeping well. But they're not sleeping well because they can't really breath because they have their allergies, and you don't treat their allergies, you're not going to be able be successful at treating other things. So they have to be aware that there's more to a person than just a brain injury. There's a person with all kinds of other problems that could be there. You want them to be alert for signs of whether the child is in a situation where they're being abused. Unfortunately, if you have a disability your risk of being abused goes up four times. And I don't know what the statistics are in the states, but in Canada when they looked at it, 22 children out of every 1000 are known to suffer some form of abuse, be it physical, sexual, neglect, mental, or emotional. And if you're disabled, it's four times higher at 88. Canada, we're not any different from the states, so I'm sure that it's very similar. So just to be aware that there might be other things going on. One of the reasons why their at greater risk is because they don't have the judgment to be able to think, "There's something not right here." And they're more easily led, so they can get led into issues. So to be aware of what's going on that way. To be aware of the community, and what the community can and cannot do. What are the resources in the community? Is there a way of getting the child to get the physical exercise they need in a community recreational facility, like the Y or something like that, which has much more of a natural way of doing it than having a physiotherapist coming and doing their therapy? So you're looking at the physician to be a member of the team, not necessarily running the team, but being a member of the team, working with a bunch of professionals and the family. The family should be the key member of the team, as to what needs to be done and how and why. Sometimes your team members will tell you that they think that Johnny is needing to see a psychiatrist because they are becoming more and more paranoid, and with what's happening he needs to see a psychiatrist. This happened to me, personally. And I'm saying, "Well, tell me what's happening." So they're telling me, and then when they came back to see Johnny he was even more paranoid and this happened. Then a couple of months later, all of a sudden he's even more paranoid, and I said, "Well, what months were these?" Well, it turns out that the reason why he was getting paranoid was because the medicine that I had him on to help with the pain that he was dealing with was causing the paranoia. And every time I increased his pain medicine, which was really helping his pain, he became more paranoid. It wasn't that he needed to see a psychiatrist; he needed that team to talk to each other and go, "Oh, I took him off his pain medicine and his paranoia went away." I then had to think of something else to help with pain, but that kind of interaction, I think, is really important, as well.
Posted on BrainLine June 8, 2010.

Produced by Victoria Tilney McDonough and Brian King, BrainLine.

About the author: Jane Gillett, MD

Dr. Jane Gillett was a neurologist certified by the Royal College of Physicians and Surgeons of Canada in both pediatric and adult neurology. She created and developed the Pediatric Acquired Brain Injury Community Outreach Program, Children’s Hospital of Western Ontario. She died in 2011.

Dr. Jane Gillett