Re: To Amy re: encephalopathy

[Guest guest]

Actually, I'm not sure encephalopathy is a dx in and of itself,

though it may be evolving to that use. My understanding is that

encephalopathy simply denotes a defect in brain structure or function, so

any number of people could have " encephalopathy " in their medical records

but have problems that manifest as various other diagnoses or as no

definite diagnosis. It also is my understanding that the term

encephalopathy in and of itself doesn't necessarily denote the severity

(or lack thereof) of the disability. My daughter, now aged 22, doesn't

have one definite diagnosis and has very severe developmental

disabilities, yet in the records of the psychiatrist who evaluated her a

couple of years ago, the term " encephalopathy " is given. I'm certainly

not a medical professional and my understanding may be completely wrong,

but if you find this frustrating as a diagnosis, it may be because it is a

very broad descriptor and really says nothing about the resulting

disabilities of a particular person.

Cheryl

[Guest guest]

.... When we went

> to the ped neuro the first time, he told me from looking at my

son's history

> that he thought he would have to call this PDD. But after the ped

neuro

> talked with my son, the ped neuro said it's not PDD or Asperger's

because he

> enjoys having a conversation.

> I understand your frustration at this dx....

There is huge confusion among the " experts " about the categories to

use for the rising number of not-neurotypical kids. Doctors simply

haven't seen this number and variety of children with ASD before. It

took 6 years for my son to get a diagnosis, and the psych sort of

invented one (Aspergers-NLD) because no (then) current diagnositic

criteria described him. The degree of ASD impact on him varied

dramatically with illnesses, stress, and (now I realize) diet, so

one's opinion of his condition varied greatly depending upon when a

diagnositician saw him.

Lots of aspie kids love having a conversation - especially amongst

themselves.

The important thing is to get a diagnosis that leads to services.

JMO.

N

[Guest guest]

At 10:17 pm 6/24/01 +0000, you wrote:

>There is huge confusion among the " experts " about the categories to

>use for the rising number of not-neurotypical kids.

You know, with the dx's my son got (first cerebral palsy at 15 mo's, then

pdd-autism at 39 mo's) and now no less than 3 doctors telling my wife or me

that doesn't seem autistic over the last half year or so I have to say

that his pediatrician over a year ago gave us the answer I most respect.

We always liked our kid's pediatrician. He retired, and the new one is a

good doctor I think. But the previous one really appealed to us. He was

down to earth; preferred to avoid unnecessary prescriptions if possible,

and by and large I'd guess a whole lot different then doctors are taught to

be nowadays.

I'm not an old fogey, y'know. I'm a professional web programmer, and

started working as a computer programmer in 1980. I've used lots of high

tech thingies in my career. But overkill, and too many darn doo-dads will

invariably mess things up. That's how I look at it when a doctor prescribes

drug A, then when drug A causes an unwanted effect they go ahead and

prescribe drug B on top of it. Bad news for all of us in my opinion.

So over a year ago, before we got the autism dx we made an appointment with

the pediatrician. We asked him one question " Doctor, what do you think is

going on with our son? "

You know what he said? He said

" When you don't know what's wrong, you can call it anything you want. "

I think this was one honest doctor, and I think he said as much as he

could as a professional. Reading between the lines, I think he was trying

to tell us that listening to the professionals was important but that in

the end we'd have to make up our own minds. Something I think every one of

us on this list has come to realize.

>The important thing is to get a diagnosis that leads to services.

Amen to that. This is why I'm torn as to the one year projection we got at

's EIP meeting with the school board. I mean it's a dream come true to

hear the pro's tell us they think our son will be suitable for a regular

school in another year. Even if it's special ed, it's better than being

where the entire school is special ed.

Or is it? If he's ready, then you know my wife and I will be the first to

want it. But if they're being swayed by cost rather than suitability? So

unfair, that parents should have to double check the experts to be sure

their motives are appropriate.

Marty