Liver enzyme values was Re: (no subject)

[Guest guest]

Thanks for sharing that, Sue. What a lot Elliot has been through! I'm glad

he is doing well now.

's were a little high upon diagnosis, mostly borderline but one (the

one value related to the bile ducts, I can't remember the name of it) was

way out of whack...they thought it was just that he had a virus maybe, and

that the next time they tested they'd be fine...nope, still out of whack.

Our CF doc said that lots of kids with CF have elevated liver values and

that it usually isn't a big deal, but since his have stayed high they want

to do a sonogram and maybe some other testing to check it out. His vagueness

makes me nervous! doesn't have any of the other symptoms you

mentioned, though he was a little jaundiced a few days after birth. We saw a

Chinese medicine specialist just after his diagnosis who said that due to

his pale tongue and other signs, he felt his liver was stressed.

Interestingly, that was before his bloodwork was even back...so this doc

could tell!

Anyway...thanks for sharing your story! And welcome again!

mama to 1 yo w/CF and 3 yo woCF

> From: sueandjacques@...

>

> Hi ,

> When Elliot was born he had very high indirect bili rubin count. He tested

> positive for CF on 3 newborn screens but the doctors believed this was

> because he had liver problems. His liver enzymes were and still are pretty

> high.

> Elliot had two liver biopsies and an open surgery to look at his bile ducts

> and liver...all before 4 weeks of age.

> Elliot was finally diagnosed with CF after the GI said " if it was my son I

> would send him to this guy. " This " guy " is a pediatric liver doctor whose

> special interest and research is liver disease in kids with cf.

> He believes that Elliot had a blockage in his extrahepatic bile ducts. He

> believes this blockage was most likely the thick secretions caused by cf. He

> also believes that when they did surgery on Elliot and filled his gallbladder

> with fluid somehow this flushed out his bile ducts and opened them up. Prior

> to this Elliot did not have any color to his stools...was unable to release

> bile out of his liver.

> And now his liver is still enlarged and scarred but remarkably better. Our

> last visit showed the size of his liver to be reduced by about 2 cm.

>

> His symptoms were: pale stools, enlarged liver, hard liver, small

> gallbladder, green jaundice, yellow jaundice and high bili rubin. I have been

> told not to panic about his high liver enzymes. So much was going on that

> these were the last of our worries. But it seems to me the Doctor said

> something about his liver working harder than others to digest, etc., so that

> could be the reason for the liver enzymes staying high.

>

> Hope this helps.

>

> Mom to Elliot 10 mths wcf

>

>

>

[Guest guest]

Hi ,

I know what you mean by vagueness. Before this I always thought that medicine

was an absolute. I hope Jake's liver is ok. Elliot takes a medicine callled

ursodiol (actigall) to help his liver get rid of the bile and to also help

with the scarring in his liver. This is not proven to work but they say it

might. They also thought Elliot might have some virus or infection, like

Jake, before diagnosis. It is scary to not really know what is going on in

there.

Thanks for the welcome.

Mom to Elliot 10 mths wcf

[Guest guest]

Hi my 17 year old has been on actigall for 4to5 years. has had liver

involvement since surgery at birth(meconium illeus) at 5 his cf doc said he

will either get better or worse(horrible thing to tell a worried Mom) but

actigall wasn't available .It has made his liver clear out the mucous that

was clogging it up.Too bad they haven't found a way to clear the whole body

of it! BeckyB.

[Guest guest]

Hi ,

I am glad it worked really well for . Elliot has been on Ursodiol since

birth. That will be 10 mths next month. It took about 7 months to get fairly

normal liver function tests and about nine mths for his liver to reduce in

size. He still has an enlarged liver but his function is good.

He will stay on it indefinitely for now because it can possibly reduce

scarring that has occurred. Recently we went to a CF family night and the

guest speaker was a pediatric liver doctor specializing in kids with CF with

liver problems. He said that Ursodiol comes form the word ourse (which means

bear in French) and that in ancient Japan it was used for people with liver

disease by extracting something from bears. I thought that was interesting.

Take care,

[Guest guest]

Hi BeckyB,

Elliot's Doctor has always told us the same thing about his liver. He says it

can stay the same, it can get worse, or it can get better. We choose

better!!! Has 's liver gotten better over the years?

Mom to Elliot 10mths wcf

[Guest guest]

His liver has gotten better but every time he gets really run down and sick

his enzyme levels go up but at least they do come back down. Good luck!Becky

B.

[Guest guest]

,

How long has Elliot been on the Ursodiol? just finished a 6 month

stint on it. After 6 weeks, they did more bloodwork and it had drastically

improved. To play it safe, they wanted her to stay on it for a bit. I

will need to take her in a couple of weeks to be tested again. Her ped

pulm considers this a sort miracle drug - he says the results are

remarkable considering the minimal side effects (diarrhea - like we haven't

been thru that before).

Wishing the best.

, Momma to (3.5 yo w/cf)

sueandjacques@... on 11/29/2001 11:46:08 AM

Please respond to cfparents

To: cfparents

cc:

Subject: Re: Liver enzyme values was Re: (no subject)

Hi ,

I know what you mean by vagueness. Before this I always thought that

medicine

was an absolute. I hope Jake's liver is ok. Elliot takes a medicine callled

ursodiol (actigall) to help his liver get rid of the bile and to also help

with the scarring in his liver. This is not proven to work but they say it

might. They also thought Elliot might have some virus or infection, like

Jake, before diagnosis. It is scary to not really know what is going on in

there.

Thanks for the welcome.

Mom to Elliot 10 mths wcf

[Guest guest]

I appreciate all the experiences and perspectives. I had mentioned ursodiol

to the doc, and they said they don't use it with kids as young as (15

months). I thought that was odd as I know I'd heard on this list that very

little ones were on it, with no side effects, and good results!

Hm. I will talk to the GI doc about this in January.

mama to 1 yo w/CF and 3 yo woCF

[Guest guest]

; all I know is that I take Actigall, as does my youngest child (adult)

who also

has cf; we are doing better, enzymes down, less scarring, etc. May this be

so with

your child as well,

n wcf, mom of 3 adult " kids, " youngest wcf, too--with former crazt liver

enzymes

[Guest guest]

Becky; I, too, think that total-body Actigall would be just great! I loved

your post.

Thank you and Happy Holidays, as I will be computerless for a few weeks, but

will

be back on at the same E-mail address!

n Rojas