Re: Noah's day in Pitt w/ Pulmonology

[Guest guest]

>

> -----Original Message----- What does HE mean to you all who have

been

> through this? To me it means a treatment so that he can function?

Does

> it mean more? ESLD?

>

> To use your own words - don't shoot the messenger.

>

> I am limited by Ken's experience with HE and am not a doctor.

From what

> you have told us, Noah's LFT's, glucose, ammonia and albumin are

all

> within normal limits. His scopes looked good, his growth is very

near

> normal and he doesn't have cirrhosis. The doctors at Pitt say his

> problems are not liver related. Adding all that together, I would

say

> he couldn't have HE, but I'm not a doctor, so I guess my suggestion

> would be to trust what the doctors are telling you. HTH

>

> Barb in Texas

>

,

I grant all that Barb has said, but HE is a strange beast. It is

initially defined more by subtle personality changes than by any

overt physical symptoms. Noah has certainly had personality and

behavioral changes. Something must be responsible and the simplest

explanation is HE, since he does have a diagnosed liver disease. HE

treatments generally do have any serious side effects (other than

lactulose causing frequent trips to the bathroom), so should be safe

to administer. If HE treatments have no effect then a concerted

search for the cause of these changes in Noah is in order. If Noah's

liver team is so convinced that it is not HE, then they ought to be

suggesting other avenues of investigation and making referals. I

would still suggest to them that treating for HE has minimal risk

and should at least be tried while other causes are investigated.

Tim R

[Guest guest]

Tim,

This feels somewhat like the high-dose Urso battle. If it does not

hurt him why not give it a go?! Why make the poor guy suffer? He

knows he is losing it. He is so frustrated with himself...frustrated

to tears. Keep in mind that he was tested in 1st grade for the TAG

program (talented and gifted) which we chose to keep him out of to try

and keep him a happy-go-lucky type like he was. But he still has the

intellect in math and science, but extreme frustrations on some days

when he can't find words or forgets where he was going in a train of

thought. Other days are better. HE is a strange beast, I agree with

all on that!!! The pulm doc said that too. The one thing I will say

is...his last liver bx was almost 2 years ago. And it came out not in

the strings of " spaghetti " (for lack of a better description), but

broke in to bits. The Pitt path read found it to be near bridging

fibrosis. How much can happen in 2 years if that had happened before

we even knew he had it?! This is a serious question for you all. I

don't know.

I am curious.

Blessings,

> ,

> I grant all that Barb has said, but HE is a strange beast. It is

> initially defined more by subtle personality changes than by any

> overt physical symptoms. Noah has certainly had personality and

> behavioral changes. Something must be responsible and the simplest

> explanation is HE, since he does have a diagnosed liver disease. HE

> treatments generally do have any serious side effects (other than

> lactulose causing frequent trips to the bathroom), so should be safe

> to administer. If HE treatments have no effect then a concerted

> search for the cause of these changes in Noah is in order. If Noah's

> liver team is so convinced that it is not HE, then they ought to be

> suggesting other avenues of investigation and making referals. I

> would still suggest to them that treating for HE has minimal risk

> and should at least be tried while other causes are investigated.

>

> Tim R

>

[Guest guest]

Original Message----- What does HE mean to you all who have

> been through this?

-

Just another thought... I agree that maybe some additional evaluation

might be helpful. I have seen psychiatrists help with clarifying

mood, behavior, metabolic changes - and maybe could assist with an

independent evaluation of Noah's symptoms. (And please don't take

this wrong, that I'm implying a behavioral or psych issue, just that a

good psychiatrist may be able to help sort out complex issues like this)

Joanne

(, Ca., mom to , age 16, UC/PSC 2-06)