Re: Liver problems

[Guest guest]

Hi ,

If I remember correctly, Jillie was a preemie, right? My son,

, age 11, was born at 28 weeks gestation (birthweight 440

grams), and was in the NICU for 7.5 months. Much of that time he was

on TPN. Fast forward to when he was between 3 & 4 years old... His

GI doctor noticed that he continued to have abnormally high liver

enzymes. A sonogram showed that he had a sludge in his gallbladder,

which could have been contributing to high liver enzymes. He was

treated with Actigall for this, which lowered his levels some of the

time, but other times, they were still high. He then had a liver

biopsy, which wasn't exactly normal, but wasn't a cause for concern.

He hasn't been on medication for several years, and his liver enzymes

are still high at times. After ruling out all kinds of liver-related

problems, his doctor attributed his high liver enzymes to being on

TPN for so long. He has labwork done periodically to watch the liver

enzymes, but he hasn't had any tests or invasive procedures for this

in awhile.

Kim C.

> Hi Guys,

>

> Has any of your wonderful RSS kids had any liver issues? I have

read

> most of the articles out there on RSS (courtesy of Magic) and have

> not noted liver involvement within the syndrome.

>

> Last April, Dr Harbison ordered blood tests which showed Jillie had

> abnormal liver function tests. She had a multitude of non invasive

> tests and had her prilosec switched to zantac (ocassional side

> effect of prilosec is liver inflammation which goes away when

> discontinued). Her LFT's remained the same. Last month she had a

> liver biopsy and today her GI doc called to tell me the results are

> clearly abnormal but very confusing. He is meeting with a

> pathologist and a liver expert on Monday to discuss her biopsy.

>

> Of course being a NICU nurse, I'm fast forwarding to a possible

> liver transplant! I thought I was stressed with sending her to

> school in 2 months (even though she will be going with a nurse) but

> this is freaking me out. Has anyone out there had a similar

> experience??

>

> (Mom to Ethan age 6 and Jillie age 2.75+, RSS)

[Guest guest]

Hi Kim,

Thanks for the reply. Jillie was NOT preemie - just spent most of

her first year in and out of the NICU with pneumonias and the like.

I did think of the TPN briefly as a cause for her liver issues but

she actually only spent between 2 and 3 weeks in her total life on

TPN. Even when on the ventilator, she was fed via the GT - kind of

on my insistance. I have seen the pros and cons of TPN as I take

care of many infants who need bizarre surgeries and are on TPN for

ever - a few end up with very damaged livers. I didn't want another

problem adding to her list of issues.

How often are 's LFT's done now? Is his liver enlarged? Does

he still take the actigal? Is his liver causing him any problems

that you have to pay attention to, for example does he have a

prolonged bleeding time (does he bleed longer than average after

blood draws or if he falls and scrapes his knee)? Is he generally

healthy?

I'll be letting you all know what the liver expert and pathologist

has to say next week. In the meantime, I will continue to quietly

panic!

Thanks Kim!

>

> Hi ,

>

> If I remember correctly, Jillie was a preemie, right? My son,

> , age 11, was born at 28 weeks gestation (birthweight 440

> grams), and was in the NICU for 7.5 months. Much of that time he

was

> on TPN. Fast forward to when he was between 3 & 4 years old...

His

> GI doctor noticed that he continued to have abnormally high liver

> enzymes. A sonogram showed that he had a sludge in his

gallbladder,

> which could have been contributing to high liver enzymes. He was

> treated with Actigall for this, which lowered his levels some of

the

> time, but other times, they were still high. He then had a liver

> biopsy, which wasn't exactly normal, but wasn't a cause for

concern.

> He hasn't been on medication for several years, and his liver

enzymes

> are still high at times. After ruling out all kinds of liver-

related

> problems, his doctor attributed his high liver enzymes to being on

> TPN for so long. He has labwork done periodically to watch the

liver

> enzymes, but he hasn't had any tests or invasive procedures for

this

> in awhile.

>

> Kim C.

>

> > Hi Guys,

> >

> > Has any of your wonderful RSS kids had any liver issues? I have

> read

> > most of the articles out there on RSS (courtesy of Magic) and

have

> > not noted liver involvement within the syndrome.

> >

> > Last April, Dr Harbison ordered blood tests which showed Jillie

had

> > abnormal liver function tests. She had a multitude of non

invasive

> > tests and had her prilosec switched to zantac (ocassional side

> > effect of prilosec is liver inflammation which goes away when

> > discontinued). Her LFT's remained the same. Last month she had a

> > liver biopsy and today her GI doc called to tell me the results

are

> > clearly abnormal but very confusing. He is meeting with a

> > pathologist and a liver expert on Monday to discuss her biopsy.

> >

> > Of course being a NICU nurse, I'm fast forwarding to a possible

> > liver transplant! I thought I was stressed with sending her to

> > school in 2 months (even though she will be going with a nurse)

but

> > this is freaking me out. Has anyone out there had a similar

> > experience??

> >

> > (Mom to Ethan age 6 and Jillie age 2.75+, RSS)

[Guest guest]

,

I knew I remembered that not only did you work in the NICU, but that Jillie was

there. I

guess I just assumed it was because she was a preemie. doesn't get

LFT's done

too often anymore. Maybe 1 - 2 times/year? I don't think his liver is

enlarged. He doesn't

seem to bleed any differently than the average person. He hasn't taken the

Actigall in

years. In other words, although his LFT's are not always normal, it isn't a

huge area of

concern for us. I would not consider him to be " healthy " . He has a lot of

medical issues,

and is on the severe side for RSS. However, he has come a long way over the

years, & isn't

sick with respiratory & GI issues even a quarter as much as he was when he was a

baby. I

look forward to hearing what the liver expert says to you.

Kim C.

> Hi Kim,

>

> Thanks for the reply. Jillie was NOT preemie - just spent most of

> her first year in and out of the NICU with pneumonias and the like.

> I did think of the TPN briefly as a cause for her liver issues but

> she actually only spent between 2 and 3 weeks in her total life on

> TPN. Even when on the ventilator, she was fed via the GT - kind of

> on my insistance. I have seen the pros and cons of TPN as I take

> care of many infants who need bizarre surgeries and are on TPN for

> ever - a few end up with very damaged livers. I didn't want another

> problem adding to her list of issues.

>

> How often are 's LFT's done now? Is his liver enlarged? Does

> he still take the actigal? Is his liver causing him any problems

> that you have to pay attention to, for example does he have a

> prolonged bleeding time (does he bleed longer than average after

> blood draws or if he falls and scrapes his knee)? Is he generally

> healthy?

>

> I'll be letting you all know what the liver expert and pathologist

> has to say next week. In the meantime, I will continue to quietly

> panic!

>

> Thanks Kim!

>

>

>

>

>

> >

> > Hi ,

> >

> > If I remember correctly, Jillie was a preemie, right? My son,

> > , age 11, was born at 28 weeks gestation (birthweight 440

> > grams), and was in the NICU for 7.5 months. Much of that time he

> was

> > on TPN. Fast forward to when he was between 3 & 4 years old...

> His

> > GI doctor noticed that he continued to have abnormally high liver

> > enzymes. A sonogram showed that he had a sludge in his

> gallbladder,

> > which could have been contributing to high liver enzymes. He was

> > treated with Actigall for this, which lowered his levels some of

> the

> > time, but other times, they were still high. He then had a liver

> > biopsy, which wasn't exactly normal, but wasn't a cause for

> concern.

> > He hasn't been on medication for several years, and his liver

> enzymes

> > are still high at times. After ruling out all kinds of liver-

> related

> > problems, his doctor attributed his high liver enzymes to being on

> > TPN for so long. He has labwork done periodically to watch the

> liver

> > enzymes, but he hasn't had any tests or invasive procedures for

> this

> > in awhile.

> >

> > Kim C.

> >

> > > Hi Guys,

> > >

> > > Has any of your wonderful RSS kids had any liver issues? I have

> > read

> > > most of the articles out there on RSS (courtesy of Magic) and

> have

> > > not noted liver involvement within the syndrome.

> > >

> > > Last April, Dr Harbison ordered blood tests which showed Jillie

> had

> > > abnormal liver function tests. She had a multitude of non

> invasive

> > > tests and had her prilosec switched to zantac (ocassional side

> > > effect of prilosec is liver inflammation which goes away when

> > > discontinued). Her LFT's remained the same. Last month she had a

> > > liver biopsy and today her GI doc called to tell me the results

> are

> > > clearly abnormal but very confusing. He is meeting with a

> > > pathologist and a liver expert on Monday to discuss her biopsy.

> > >

> > > Of course being a NICU nurse, I'm fast forwarding to a possible

> > > liver transplant! I thought I was stressed with sending her to

> > > school in 2 months (even though she will be going with a nurse)

> but

> > > this is freaking me out. Has anyone out there had a similar

> > > experience??

> > >

> > > (Mom to Ethan age 6 and Jillie age 2.75+, RSS)