Bryson's Blog

Living with Trisomy 13

Monday, October 19, 2009

On Being Bryson

I apologize for not writing too much to this blog as of late, but it is extremely difficult. It is difficult to find the words to express the profound sadness in my heart about Bryson and his venture into what is now referred to as Persistent Vegetative State. I've tried to read as much as possible about PVS and there is so much that is hypothesized. Why? Because the likelihood of someone returning to a state of conscientiousness from PVS is rare or even if it did happen, then it was likely that the person was not truly PVS. In a recent study of 40 individuals thought to be in PVS, they were misdiagnosed 43% of the time.

Q: What is PVS?

A: The vegetative state is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have variably preserved cranial-nerve and spinal reflexes. We define persistent vegetative state as a vegetative state present one month after acute traumatic or nontraumatic brain injury or lasting for at least one month in patients with degenerative or metabolic disorders or developmental malformations.

The clinical course and outcome of a persistent vegetative state depend on its cause. Three categories of disorder can cause such a state: acute traumatic and nontraumatic brain injuries, degenerative and metabolic brain disorders, and severe congenital malformations of the nervous system.

Q: What is the prognosis?

A: We don't know...no one can really know. Here are some findings from the New England Journal of Medicine.

Outcome for Patients in a Persistent Vegetative State (PVS) after a Traumatic or Nontraumatic Injury.

Fifty-two percent of adults and 62 percent of children who are in a PVS one month after a traumatic injury recover consciousness within one year. The majority recover within the first six months; recovery after six months is unusual. In contrast, for patients in a PVS one month after a nontraumatic injury, recovery of consciousness is much less frequent (15 percent of adults and 13 percent of children) and is extremely unlikely after three months. Approximately 5 percent of patients in a PVS 1 month after injury were lost to follow-up at 12 months.

Q: What is the incidence of recovery in Children with PVS after 12 months?

A: Traumatic Injury ( n = 106 )
Death 9%
PVS 29%
Recovery of Consciousness 62%
Severe disability 35%
Moderate disability 16%
Good recovery 11%

Non-Traumatic Injury ( n = 45 )
Death 22%
PVS 65%
Recovery of Consciousness 13%
Severe disability 7%
Moderate disability 0%
Good recovery 6%

Data were collected from a series of patients in PVS one month after injury and do not include individual case reports. Some patients who recovered consciousness died within 12 months after injury or were lost to follow-up. The data for non-traumatic injuries reflect all causes, not just postanoxic injury; for this catagory alone, the prognosis is poorer than that suggested by the data

Data for functional recovery are for patients who had recovered consciousness within 12 months after injury.

6 Comments:

Anonymous Anonymous said...

All things are possible with God. His eye is on the sparrow, and I know he watches over Bryson.

9:46 AM  
Blogger Nicole said...

How long has he been in a PVS?

9:57 AM  
Blogger Dori said...

Nicole,
He suffered Cerebral Hypoxia possibly due to aspiration and his heart rate slowed way down starving his brain of oxygen back on August 14th. The next day he seemed fine...typical for Bryson. Over the next couple of days though, the swelling of the Cerebral Cortex from the brain insult occurred. The excess pressure causes damage and brain cells to die. Whether he was in a state of coma first then progressed to PVS, we don't know.

5:53 PM  
Blogger sherry said...

this is Sherry,from N.Y. Iam still praying for Bryson and his family. I hadnt known the family for very long but they sure made an impression on me, and are always in my thoughts and prayers

6:04 PM  
Anonymous Denise said...

Dont give up hope, lots of people are thinking of and praying for Bryson.

3:48 PM  
Anonymous Anonymous said...

i am so sorry. my family and i will be praying for Bryson's recovery and strength for his parents.

with Love,
Vianca, mommy of Elijah Thomas Wilson
www.livingwithtrisomy13.org/memoriesofElijah.htm

9:38 AM  

Post a Comment

Links to this post:

Create a Link

<< Home