Assessment After Severe Pediatric Brain Injury: Nancy Part Nineteen
Inevitably, the medical community sees Nancy as old history, a great miracle of modern medicine, one of the success stories. Yet as she approaches adulthood, her need for further assessment after severe pediatric brain injury and care may in fact be greater. Now is the time to address all those issues that can receive targeted treatment and to fully understand what ongoing disability she may need long term accommodations for. Many issues continue to be left hanging. I asked her Mom about some of these areas:
Have they done a sleep assessment after severe pediatric brain injury on her?
Does she have problems with sleep?
Yes. This has been happening all of the sudden. It seems like for the, what, the last two weeks or so I’ll hear her walking around in the middle of the night.
You still have good medical coverage?
Have you had a sleep assessment after severe pediatric brain injury?
No, I was told that, uh, it wouldn’t do much good.
Who told you that?
Uh, the physician. It was the physician that I go to (family practice). He said that a sleep study would be for sleep apnea, other things but for a brain injury it wouldn’t tell us much of anything.
This highlights a major problem in the gatekeeping role that insurance companies have now placed on family practice doctors. They simply do not have the experience or expertise to be making these kind of decisions, particularly with an injury as serious or complicated as a severe pediatric brain injury. While sleep may not explain all of her fatigue issues, it needs to be evaluated. Fatigue after TBI can come as a result of how hard she has to concentrate to do anything, but there can be no doubt that a poor night’s sleep puts her behind from the beginning of any day. See http://www.subtlebraininjury.com/fatigue.php Sleep problems are a common denominator for survivors of brain injury. The great aspect about identifying sleep problems in the TBI survivor is that many of the causes of sleep disruption are easier to treat than most deficits. The first step is a formal sleep assessment after severe pediatric brain injury.
Nancy’s Mom had also wanted to make sure she got other follow-up assessment after severe pediatric brain injury:
With this neuropsych testing that I want her to have done in. I would like to have a MRI or a CT scan as well.
There’s no reason not to do an MRI, but if you’re going to get one done have it done in a place like Minneapolis at, at University of Minnesota Hospital or at University of Wisconsin Hospital where they have a 3 Tesla MRI, high quality MRI.
Remember it like 3‑D but it’s 3‑T. Stands for the strength of the magnets.
She had one of those when she was down there when they were doing the imagery for her brain and what the pieces were going to have to be like and the parts that would be back in.
But that wouldn’t have been 3 Tesla level. It would have been an MRI perhaps but they weren’t using 3 Tesla level MRI in Madison until maybe 2006.
Brain injury is too often thought of as a static injury, with the structural damage appearing almost immediately, with little need for complex assessment after severe pediatric brain injury even a year post injury. In Nancy’s case there are two primary problems with such a perspective. First, as she was nine when the injury occurred, much of the areas of her brain which might have been damaged, had not completely developed at the time of her injury. One reason that further assessment after severe pediatric brain injury is crucial.
Second, the technology for brain imaging has had a full generational leap forward since her injury in 2003. Not only has the resolution of the clinical MRI doubled from 1.5 Tesla to 3 Tesla in that time, remarkable new imaging tools such as SWI (“susceptibility weighted imaging”) and DTI (“diffusion weighted imaging”) have enabled us to see far more pathology than an MRI would have done in 2003. The insurers would undoubtedly argue that what intervention would a better picture of the pathology in Nancy’s brain mandate? The reality is we don’t know, but we should know all that we can, while she is still covered under her parents insurance policy.