Re: Elevated liver enzymes - please help!

[Guest guest]

Karolina,

My kids have had elevated liver enzymes in the past, but they are back to

normal now. About the only thing you can do is to give them Actigall

(URSO). It helps keep things flowing and inturn helps keep the liver

working well. My kids were on this for a couple of years, but now that they

have had normal liver enzymes for a while now they have been taken off of

it. Some docs seem to be less agressive using this because they aren't sure

if it really works or not. BUT it's worth a try I think.

, mom to Abriana 4wcf and Bradyn 2.5wcf

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[Guest guest]

Hello all. Karolina, I have had the same questions my self for about two

weeks now. At Alyssa's last clinic appointment we found out her liver

enzymes were elevated as well. She is a year this Friday. Her enzymes were

slightly elevated at her diagnosis in July, but the doctors felt that once

her nutrition got better(she had failure to thrive due to malabsorption),

that these would improve. We asked the doctors to recheck her levels again

in August and they appeared to be improving. The following week she was

admitted into the hospital where they rechecked her levels again( we were

not aware of this) and we were told her liver enzymes were fine. Three

weeks later we are told differently when the nurse practitioner was looking

into xrays they had taken on her. They were more elevated than they had

been in July. As you may guess, I have been pretty upset for the fact that

these results were kind of stumbled upon... Well, we were then referred to

GI. We were seen there last week. The GI doc said it was a mild elevation.

She said they don't know why she has an elevation, that it could be from

her cf clogging her liver, from poor nutrition( she is still having some

malabsorption), or even from an infection. She said they wouldn't really

know what is causing it without doing a biopsy which we don't want to have

done unless really necessary. ( At this point it is not,her highest levels

were around 180, which the doc said is a mild elevation she has some

patients in the 1000's). Anyhow, she still wanted to start Alyssa on

Auctigall. Getting this medication has been a nightmare for me. I should

finally have this prescription filled today. I don't know if anything that

I have told you here will help you or not since I don't know that I

understand myself. I am still coping with the shock from her diagnosis. If

anyone has anymore insight into liver problems and how they treat them I

would greatly appreciate a post as well.

Love, mom of 4 ---3 boys(wocf) and Alyssa (wcf)

- ----Original Message-----

To: cfparentsegroups <cfparentsegroups>

Date: ÔåôÜñôç, 11 Ïêôùâñßïõ 2000 4:18 ðì

Subject: Elevated liver enzymes - please help!

>

>Hi all,

>

>I hope someone can shed some light on this. We got the results of 's

>bloodwork back from the lab today and they said that she had slightly

>elevated liver enzyme levels (normal is between 5-40) Hers was 58.

>

>What causes this? Surely at 13 months she's too young to have any liver

>involvement? The doc told us not to worry too much and they would re-do the

>test in 6 months time. If the levels were high/higher, they would start her

>on treatment.

>

>Has anyone had this experience before? I've been told its most common in

>children born with meconium ileus like was. I still can't believe that

>at 13 months she has liver invlovement?? What can we do to stop/halt this.

>Is it a continual thing?? What speeds it up.....questions questions!!!!!

>Please help!!!

>

>Any feedback would be really appreciated!!!!!

>

>Love

>Karolina Mum to 13mo with cf

>

>

>

>

>

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[Guest guest]

Hi Karolina,

Ursodeoxycholic acid or just Urso (brandnames are Ursofalk or

Actigall) is a natural acid of the liver, which thins the bile fluid. It is

prescribed for many patients with elevated liver enzymes and/or liver

enlargement. I don't know though, whether there is an lower age limit for it.

Bye-bye

Torsten, dad of Fiona 3.5wcf

e-mail: aberdeen95@...

[Guest guest]

Hi, there, this may not be much help in the liver enzyme department, but I

was born prematurely, with CF and have had intermittent elevated liver

enzymes (best to ask

the doctor exactly what that means), but 62 years later I am still here with

intermittent liver enzymes and no esophogeal varices, etc. That doesn't, of

course,

guarantee that this will be the course for your child, but I thought I would

let you know that liver complications to some degree are almost always part

of CF and its

treatment. This is only a patient's opinion, but I hope it helps, n

wcf, mom of three, one wcf--kids all grown and in their thirties!

[Guest guest]

Karoline,

Elevated liver enzymes don't necessarily mean liver involvement or

liver damage. In CF, it's usually a case of blocked bile ducts, and

treatment prevents or postpones liver involvement.

Matias has had elevated liver enzymes all his life (some of them in

the 1000s before he received treatment for this). He's been on

ursodeoxycholic acid since he was 7 weeks, and gets 450mg daily now.

It used to be reformulated into a syrup, and 30 mg/ml was about the

highest concentration he could tolerate without gagging (it's very

bitter). Now he's taking the Ursochol in capsules, I guess the

gastroenterologist will increase the dosage at the next appointment

(he tripled it six months ago).

Unless of course his liver tests are finally returning to normal (I

don't know up to what extent the blocked bile ducts can open up

again).

Best regards,

Nele, mamuchi of Matias, 2y wcf

[Guest guest]

My daughter has always had elevated liver enzymes,,,ever since her diagnosis

at 20 months.

She was never put on medication for it. The docs. said they would prescribe

meds.if they went over 100,,the closest her enzymes ever got were 92.

Amazingly the only time in her entire life that her enzymes were normal, were

the last time she had them checked (about a year ago). I don't know if it's

a coincidence, but she was also taking Olive Leaf Extract (East Park brand) &

Glutathione (orally). I couldn't believe it when after 7 years of elevated

liver enzymes they actually came back normal.

I guess we'll find out again because she is due for a liver check again soon.

Robin,

[Guest guest]

Karolina - I don't know if anyone has responded yet. has elevated

liver function also. She is 6 years old now. She has been taking Actigall

to decrease the building up of " sludgy " bile in the gallbladder. I was

really upset when they sent her in for a sonogram and I saw what looked just

like the gallstones I had three months after she was born. It may be from

the medications she has been taking. It can also be attributed to disease

already in the body reacting with the liver (i.e., CF - lung function). I

hope your has better luck than . She is still taking medication

and the levels are the same.

Hugs and Laughter - Kathy G. (Mom to 6 w/ CF & 3 no/CF)

Springville, New York

[Guest guest]

Elevated liver enzymes are part of CF. I take Actigall, have gallstones.

Hang in

there, n wcf (again)