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Yardbird
January 30th, 2008, 11:32 PM
Where is the best place in the country to be treated for viral encephalitis that has resulted in severe disability?
Disabilities include:
Inablity to eat, talk, walk
Incontinence
Very limited movement
Cognitive skills uncertain, but showing

Any insights would be appreciated. Thanks.

geochuck
January 30th, 2008, 11:50 PM
I read this article several years ago about treatment with Vitamin C it may not be true http://www.orthomed.com/polio.htm

It says in the article - (The response of virus encephalitis to ascorbic acid therapy was dramatic. Six cases of virus encephalitis were treated and cured with vitamin C injections. )

fanstone
January 31st, 2008, 07:18 AM
What you have is a result of the encephalitis. So basically you aren't going to cure anything. You can go to a neuro guy to get the all saving (not true) shots of steroids, get the medication to treat collateral symptoms of the encephalitis and get instructions on what kind of rehab will help with the consequences of the disease. billy fanstone

Yardbird
February 1st, 2008, 11:11 PM
Thank you for the replies.

What I wondered is if anyone knows of a facility that has an expertise in treating severe brain damage caused by encephalitis. The facility we are in specializes in brain injury, but they have had very little experience with encephalitis. Most of their patients have traumatic brain injury or non-traumatic types like stroke.

It just always seemed like there was a swimmer for everything, so I thought I would ask.

ALM
February 1st, 2008, 11:37 PM
Maybe I'm naive, but once the injury is there, does it really make that much difference what caused it?

A broken leg, for example, is a broken leg, whether it was caused by a fall or a car accident or a blow with a baseball bat.

Anna Lea

ViveBene
February 2nd, 2008, 09:26 AM
Yardbird,

I would guess that viral encephalitis severe enough to cause the kinds of deficits you mention would not be particularly common, and it might be difficult to find a facility that specializes in treating the effects of only this disease (I assume the diagnosis has already been made and treatment of the cause has been undertaken). However, the effects may be the same as or similar to the effects of other traumatic or atraumatic causes of brain/nervous system disorders, and treatments may be the same. For a down-home example, lots of ppl are prescribed swimming as therapy, but their problems are all different. (A fell in a ditch with a backpack, B was hit by a car, C developed diabetes.)

It looks like you want therapy to improve remaining function, is that correct? Texas has reputable hospitals and therapy centers. I would follow Billy Fanstone's suggestion and talk to a neurologist about the next step; also, read as much as you can. Express your concerns to the docs on the case. Good luck!

VB

Yardbird
February 2nd, 2008, 11:13 AM
Dear Anna Lea,
Thank you for the reply. To continue your analogy, the question is: what kind of break is it... spiral fracture, compound fracture, stress fracture? Each will have a different plan of treatment.

I am no expert, but in my recent education I have come to learn that there is a difference in the damage created by different causes. Brains, unfortunately, are not as simple to diagnose as bones.

Dear VB,
I'm afraid that I may already be doing everything that can be done, and it does not seem to be enough to have a good outcome. Thank you, too, for your thoughts on this.

Kim

ViveBene
February 2nd, 2008, 12:40 PM
Hi, Yardbird,

I am sorry you are going through this. It sounds like you are the primary caretaker. I'll just mention a couple of government orgs that might be a starting place (or continuing place) for you in your search. One is the National Institute of Nerological Disorders and Stroke (www.ninds.nih.gov (http://www.ninds.nih.gov)), which is part of the National Institutes of Health; the other is the Centers for Disease Control. Some time ago I called the CDC about an administrative matter and the phone was picked up by the duty officer of the day, i.e., a doctor, not a secretary. The CDC is part of the uniformed services, which see different patterns of diseases and injuries than civilian hospitals. The Mayo Clinic is exceptional at diagnosing and cheap because they provide no indigent care; however, the patient is likely beyond that stage.

You might also try cold calling a few neurology centers around the United States and see if any two agree on the best rehab center.

If it is a child, St. Jude's Children's Hospital in Memphis (?), Tennessee, has an outstanding reputation.

Hope this helps a bit,

VB

Kurt Dickson
February 2nd, 2008, 04:52 PM
I agree with much of above. See neurologist or maybe a few and possible neuro-rehab. The problem is that encephalitis is rare and even rarer is people having long term sequela. I doubt anybody specializes in it. Since long term problems are so rare, there would probably be no good studies on treatment. At best you might find somebody with some success with empiric ("I had a few patients get better on ____") treatments.

gull
February 2nd, 2008, 05:09 PM
Have you checked out TIRR (Texas Institute for Rehabilitation and Research) in Houston? Great facility with decades of experience and a multidisciplinary approach.