RE: New to the group and disease

April 22, 2008

Hi ,

Welcome to the group. As Chaim says PSC works differently in every one, but this group is a good resource, a lot of mother's and other relatives, some with young children, a lot of people that have had it a long time (I've had it for 19 years, but I'm not the longest), a lot who have suffered or are suffering just about every synptom (usaully not all at the same time) (you can ask questions and some somebody has had the same experienced it), and a lot of people that will care for you and cover you in prayer and God's Grace.

Ian (52) PSC 89

4/22/08, Lori wrote:

Hi ,

I am so sorry to hear about your little boy having PSC. My Dad has PSC (age 60) and has had it for about 13 years or so with less symtoms than others I hear about. He takes a lot of vitamins & herbs perhaps that is why. I sent him that Tumeric article just sent around and I am sure he will start that regimen. I think most of why he is doing well is due to lots of prayer.

Have a good day.

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

New to the group and disease

Hi, My name is and I have a 5 year old son with UC and PSC. He was diagnosed with UC at age 3 and with PSC last year at age 4. I was wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the internet and it seems to think that around 10 year is the life expectancy for a good bit of the people. I was was wondering if anyone on here has had it longer. Thanks for any help you can give.

-- Ian Cribb former P.Eng. (resigned in good standing)

April 22, 2008

Hi ,

Welcome to the group. As Chaim says PSC works differently in every one, but this group is a good resource, a lot of mother's and other relatives, some with young children, a lot of people that have had it a long time (I've had it for 19 years, but I'm not the longest), a lot who have suffered or are suffering just about every synptom (usaully not all at the same time) (you can ask questions and some somebody has had the same experienced it), and a lot of people that will care for you and cover you in prayer and God's Grace.

Ian (52) PSC 89

4/22/08, Lori wrote:

Hi ,

I am so sorry to hear about your little boy having PSC. My Dad has PSC (age 60) and has had it for about 13 years or so with less symtoms than others I hear about. He takes a lot of vitamins & herbs perhaps that is why. I sent him that Tumeric article just sent around and I am sure he will start that regimen. I think most of why he is doing well is due to lots of prayer.

Have a good day.

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

New to the group and disease

Hi, My name is and I have a 5 year old son with UC and PSC. He was diagnosed with UC at age 3 and with PSC last year at age 4. I was wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the internet and it seems to think that around 10 year is the life expectancy for a good bit of the people. I was was wondering if anyone on here has had it longer. Thanks for any help you can give.

-- Ian Cribb former P.Eng. (resigned in good standing)

April 22, 2008

Hi ,

Welcome to the group. As Chaim says PSC works differently in every one, but this group is a good resource, a lot of mother's and other relatives, some with young children, a lot of people that have had it a long time (I've had it for 19 years, but I'm not the longest), a lot who have suffered or are suffering just about every synptom (usaully not all at the same time) (you can ask questions and some somebody has had the same experienced it), and a lot of people that will care for you and cover you in prayer and God's Grace.

Ian (52) PSC 89

4/22/08, Lori wrote:

Hi ,

I am so sorry to hear about your little boy having PSC. My Dad has PSC (age 60) and has had it for about 13 years or so with less symtoms than others I hear about. He takes a lot of vitamins & herbs perhaps that is why. I sent him that Tumeric article just sent around and I am sure he will start that regimen. I think most of why he is doing well is due to lots of prayer.

Have a good day.

Lori A.

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

New to the group and disease

Hi, My name is and I have a 5 year old son with UC and PSC. He was diagnosed with UC at age 3 and with PSC last year at age 4. I was wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the internet and it seems to think that around 10 year is the life expectancy for a good bit of the people. I was was wondering if anyone on here has had it longer. Thanks for any help you can give.

-- Ian Cribb former P.Eng. (resigned in good standing)

April 22, 2008

I thought I read someplace that turmeric is not good for people with bile duct problems.. Anyone have any other information on it. My 4 yr old has UC/PSC and am looking into any types of foods that are good for her condition. She currently takes milk thistle also. Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

April 22, 2008

I thought I read someplace that turmeric is not good for people with bile duct problems.. Anyone have any other information on it. My 4 yr old has UC/PSC and am looking into any types of foods that are good for her condition. She currently takes milk thistle also. Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

April 22, 2008

From my understanding of the article taking regular

Tumeric or some type of Turmeric extract is not going

to give you any benefit. What the research has shown

is that Turmeric broken into nano-particles (which I

don't think you can get at your regular health food

store) is what helps reverse liver damage.

I think what needs to be made available is the

nano-particle that was used in the research study. I

am not sure what form it would be provided or how it

would be taken, but I know I am going to be harassing

my doc about this during my next appointment.

--- lilstef23@... wrote:

> I thought I read someplace that turmeric is not good

> for people with bile

> duct problems.. Anyone have any other information on

> it. My 4 yr old has

> UC/PSC and am looking into any types of foods that

> are good for her condition.

> She currently takes milk thistle also.

>

> **************Need a new ride? Check out the largest

> site for U.S. used car

> listings at AOL Autos.

>

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

April 22, 2008

From my understanding of the article taking regular

Tumeric or some type of Turmeric extract is not going

to give you any benefit. What the research has shown

is that Turmeric broken into nano-particles (which I

don't think you can get at your regular health food

store) is what helps reverse liver damage.

I think what needs to be made available is the

nano-particle that was used in the research study. I

am not sure what form it would be provided or how it

would be taken, but I know I am going to be harassing

my doc about this during my next appointment.

--- lilstef23@... wrote:

> I thought I read someplace that turmeric is not good

> for people with bile

> duct problems.. Anyone have any other information on

> it. My 4 yr old has

> UC/PSC and am looking into any types of foods that

> are good for her condition.

> She currently takes milk thistle also.

>

> **************Need a new ride? Check out the largest

> site for U.S. used car

> listings at AOL Autos.

>

(http://autos.aol.com/used?NCID=aolcmp00300000002851)

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

April 23, 2008

,

I am surprised that none of the other mothers in the group have replied to your post yet. There are other mothers of sons with PSC in this group. I am a father to four sons myself (22, 20, 16, & 13) but fortunately none of them have PSC. I see that you have three sons, what are their ages? One mother in the group has had triplets (one with PSC). Although I do not know the anguish a mother feels when a son is diagnosed with PSC there are others in the group that do.

Hang in there and ask any questions, if someone doesn't answer the first time ask again!!

Ian (52) PSC 89

Hi, My name is and I have a 5 year old son with UC and PSC. He was diagnosed with UC at age 3 and with PSC last year at age 4. I was wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the internet and it seems to think that around 10 year is the life expectancy for a good bit of the people. I was was wondering if anyone on here has had it longer. Thanks for any help you can give.

-- Ian Cribb former P.Eng. (resigned in good standing)

April 23, 2008

I must have missed this post the first time around…I am

moving and packing…so it isn’t surprising. My daughter became

sick in December 03 and was dx with PSC in August of 04 and dx with UC in Feb

06 even though she suffered with the symptoms of UC since 12/03

In May of 06 I radically changed our diet and started taking a

food product called Juice Plus…no you don’t drink it…it is 23

servings of raw fruits, veggies, berries, and grains (glutton free) in capsule,

chewable or gummy form.

No milk, no dairy, no refined sugar, no preservatives, no

processed food. Grinding wheat and making our own bread. Coconut oil for

cooking and virgin cold pressed olive oil for eating raw (like salad dressings

and such)

Her quality of life has greatly improved…she is an active

and normal child most days. But…her disease is still progressing…but

it has slowed way down. Her doc said that most people need a liver transplant within

10 years of dx… however that is just most people.

I trust Jesus to take care of those details that are so far down

the road for us that I can’t see them and it would be useless to worry

about now. I just live for today. We are never promised tomorrow. She could die

in a car accident before she ever needs a liver. (sorry to be so grim…but

that is the truth) Love your son, make sure he knows you love him. Do what you

can, let the doctors do what they can. But ultimately life is in the Creator’s

hands. J

To answer your question…my daughter’s doctor reminds

me all the time that PSC in children is different than PSC in adults…but

he has never told me what those differences are…and I have asked.

I don’t think he understands a lot about PSC…because

it is such a rare disease…I have gained more useful info on this list

than anywhere else. The probiotics that was suggested on this list seem to be a

big help…The urso is a must. And the higher the dose the better.

I am sorry that your life has been touched by this disease…but

like everyone says when someone joins…I am glad you found us. J

In Christ's Love,

Beth Hunt

" And he

[Jesus] is the propitiation for our sins: and not for ours only, but also

for the sins of the whole world. " 1 2:2

From:

[mailto: ] On Behalf

Of Ian Cribb

Sent: Wednesday, April 23, 2008 2:15 AM

To:

Subject: Re: New to the group and disease

,

I am surprised that none of the other mothers in the group

have replied to your post yet. There are other mothers of sons with PSC

in this group. I am a father to four sons myself (22, 20, 16, & 13)

but fortunately none of them have PSC. I see that you have three

sons, what are their ages? One mother in the group has had triplets (one with

PSC). Although I do not know the anguish a mother feels when a son is diagnosed

with PSC there are others in the group that do.

Hang in there and ask any questions, if someone doesn't

answer the first time ask again!!

Ian (52) PSC 89

On 4/21/08,

wrote:

Hi, My name is and I

have a 5 year old son with UC and PSC. He

was diagnosed with UC at age 3 and with PSC last year at age 4. I was

wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the

internet and it seems to think that around 10 year is the life

expectancy for a good bit of the people. I was was wondering if anyone

on here has had it longer. Thanks for any help you can give.

--

Ian Cribb former P.Eng. (resigned in good standing)

April 23, 2008

,

Just to be sure, there is no proof that a

certain diet helps against PSC. Some people don't use gluten, others don't use

dairy, others are vegetarian and all those say that their quality of life

improved because of that. I am sure it is true for them, and I happy for it,

but there is no proof that any diet helps PSC. Omega 3 is supposed to help, but

even for that there is no clear scientific proof. Try the different suggestions

that are offered here, and see if anything works. It would be great if it

works, but don't expect too much, and don't blame yourself if it doesn't work. As

I said before, PSC is a very individual disease.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of Bethany Hunt

Sent: Wednesday, April 23, 2008

14:27

To:

Subject: RE: New to

the group and disease

I must have missed this post the first time around…I am

moving and packing…so it isn’t surprising. My daughter became

sick in December 03 and was dx with PSC in August of 04 and dx with UC in Feb

06 even though she suffered with the symptoms of UC since 12/03

In May of 06 I radically changed our diet and started taking a

food product called Juice Plus…no you don’t drink it…it is 23

servings of raw fruits, veggies, berries, and grains (glutton free) in capsule,

chewable or gummy form.

No milk, no dairy, no refined sugar, no preservatives, no

processed food. Grinding wheat and making our own bread. Coconut oil for

cooking and virgin cold pressed olive oil for eating raw (like salad dressings

and such)

Her quality of life has greatly improved…she is an active

and normal child most days. But…her disease is still

progressing…but it has slowed way down. Her doc said that most people

need a liver transplant within 10 years of dx… however that

is just most people.

I trust Jesus to take care of those details that are so far down

the road for us that I can’t see them and it would be useless to worry

about now. I just live for today. We are never promised tomorrow. She could die

in a car accident before she ever needs a liver. (sorry to be so grim…but

that is the truth) Love your son, make sure he knows you love him. Do what you

can, let the doctors do what they can. But ultimately life is in the

Creator’s hands. J

To answer your question…my daughter’s doctor reminds

me all the time that PSC in children is different than PSC in adults…but

he has never told me what those differences are…and I have asked.

I don’t think he understands a lot about PSC…because

it is such a rare disease…I have gained more useful info on this list

than anywhere else. The probiotics that was suggested on this list seem to be a

big help…The urso is a must. And the higher the dose the better.

I am sorry that your life has been touched by this

disease…but like everyone says when someone joins…I am glad you

found us. J

In Christ's Love,

Beth Hunt

" And he

[Jesus] is the propitiation for our sins: and not for ours only, but also

for the sins of the whole world. " 1 2:2

From:

[mailto: ] On Behalf Of Ian Cribb

Sent: Wednesday, April 23, 2008

2:15 AM

To:

Subject: Re: New to

the group and disease

,

I am surprised

that none of the other mothers in the group have replied to your post

yet. There are other mothers of sons with PSC in this group. I am a

father to four sons myself (22, 20, 16, & 13) but fortunately none of

them have PSC. I see that you have three sons, what are their ages? One

mother in the group has had triplets (one with PSC). Although I do not know the

anguish a mother feels when a son is diagnosed with PSC there are others in the

group that do.

Hang in there and

ask any questions, if someone doesn't answer the first time ask again!!

Ian (52) PSC 89

On 4/21/08, <busymommieof3boys (AT) yahoo (DOT) com>

wrote:

Hi, My name is and I have a 5 year old son

with UC and PSC. He

was diagnosed with UC at age 3 and with PSC last year at age 4. I was

wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the

internet and it seems to think that around 10 year is the life

expectancy for a good bit of the people. I was was wondering if anyone

on here has had it longer. Thanks for any help you can give.

--

Ian Cribb former P.Eng. (resigned in good standing)

April 23, 2008

I have looked into different diets for my son. I even had him to a

dietician. They said because of his small size they didn't want any

foods taken away from him. At the moment they want him having as

many extra calories as he can get ahold of. It isn't easy though

because along with PSC and UC he has Von Willebrands, Gerd,

migraines, ADHD and ODD. He never stops moving or bouncing so

getting him to gain any weight at all is next to impossible. Also

for him he can't have low salt because of the bleeding disorder he

has it cause his sodium to be low. So for now I think well just let

him woof down as many fatty foods as he can since he can't eat the

sugary ones that are high in calories. Thanks for the advice from

all. It's the first I've really gotten from anyone since he was

diagnosed.

>

> Hi, My name is and I have a 5 year old son with UC and PSC.

He

> was diagnosed with UC at age 3 and with PSC last year at age 4. I

was

> wondering if anyone knew if PSC affects kids differently. If it

seemed

> to progress any quicker or any slower? I have found alot on the

> internet and it seems to think that around 10 year is the life

> expectancy for a good bit of the people. I was was wondering if

anyone

> on here has had it longer. Thanks for any help you can give.

>

> --

> Ian Cribb former P.Eng. (resigned in good standing)

>

April 23, 2008

-

Sorry we missed responding personally to your post. As one mom of a PSC'er, I saw your email, but was busy and KNEW someone else would get back to you. Thank you Ian - and as the father of 4 boys - you qualify as parent! - you will see posts on the general PSC site from everyone including those with children. The PSC mom's group also has child-focused posts. You can sign up for the PSC Mom's group below (I think sign up through the big PSC site also? Sorry, computer literacy is not my strength! Let us know if you can't find it.

health.groups.yahoo.com/group/pscmoms

In general, PSC is very variable in how it affects individuals. By now you have probably read that the life expectancy figure of 10 years is also very variable - many in this group have had PSC much longer. I'll let others give you more details - got to race this morning!

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998, He just left for work - at kennel which raises, boards, trains German Shepherds and Rottweilers - big dogs! But he is liking the job!)

,

I am surprised that none of the other mothers in the group have replied to your post yet. There are other mothers of sons with PSC in this group. I am a father to four sons myself (22, 20, 16, & 13) but fortunately none of them have PSC. Hang in there and ask any questions, if someone doesn't answer the first time ask again!!

Ian (52) PSC 89

On 4/21/08, <busymommieof3boys (AT) yahoo (DOT) com> wrote:

Hi, My name is and I have a 5 year old son with UC and PSC. He was diagnosed with UC at age 3 and with PSC last year at age 4. I was wondering if anyone knew if PSC affects kids differently.

..

April 23, 2008

Hi ;

Welcome to the group. Sorry to hear about your son's PSC and UC

diagnosis, but glad that you found us. To try to answer your question

does PSC affect kids differently, I think the answer is yes. Here's a

description of PSC in children from the following article:

LaRusso NF, Shneider BL, Black D, Gores GJ, SP, Doo E, Hoofnagle

JH 2006 Primary sclerosing cholangitis: summary of a workshop.

Hepatology 44: 746-764

http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

" Dr. Eve (Hospital for Sick Children, Toronto, Canada)

described the clinical features of PSC in children. PSC is uncommon in

children and must be separated from secondary forms of sclerosing

cholangitis. 13-16 Neonatal sclerosing cholangitis is likely a separate

disease process.17,18 In children, PSC usually presents with

nonspecific symptoms and pruritus, and rarely with jaundice.11,13,18-22

An autoimmune hepatitis-like presentation is common.11,22 ERCP may

demonstrate bile duct abnormalities in these children,23 but their

course is typical of autoimmune hepatitis, although with time, features

of PSC become prominent. A rare mode of presentation is with advanced

disease as shown by marked splenomegaly or gastrointestinal hemorrhage.

Most case series of PSC in children show a male predominance with

an average age of onset in preteens (Table 1). Rarely, PSC presents

before the age of two. IBD (usually ulcerative colitis) is found in 33%

to 81% of children, but often not at initial presentation; up to 5% of

children with IBD will develop PSC.

The natural history of PSC in children is only partially defined.

Dominant strictures and recurrent cholangitis are uncommon. The

prognosis is only fair, survival being better than in adults, but

resulting in need for liver transplantation in up to one-third of

patients by early adulthood. The risk of cholangiocarcinoma is not well

defined, but appears to be rare. Thus, PSC is uncommon in children

but is clinically distinct and challenging. "

" Dr. Giorgina Mieli-Vergani (King's College Hospital, London, UK)

discussed the special challenges to diagnosis of PSC in children. The

diagnostic criteria for PSC are similar in children as adults, although

a different group of secondary causes need to be excluded, including

neonatal sclerosing cholangitis, Langerhans cell histiocytosis,

primary and secondary immunodeficiences, and cystic fibrosis.13,19,22 A

major differential diagnosis in children is between autoimmune

hepatitis and autoimmune cholangitis (Table 4). At issue is whether

these are different diseases; whether one evolves into the other;

whether the prognosis and natural history of each are different;

and whether different approaches to therapy should be used in these

different clinical patterns of disease. "

Best regards,

Dave

(father of (22), PSC 07/03; UC 08/03)

> I was wondering if anyone knew if PSC affects kids differently. If

it seemed to progress any quicker or any slower? >

April 23, 2008

,

In our case, Pearl's PSC(diagnosed along with IBD at age 3 last year)

was caught really early with just some inflammation in the small bile

ducts and as far as we know it has not progressed. I'm a bit confused

as to why the doctors are so sure that it isn't going to progress any

further since there isn't any drug that is able to control it. Her

LFTs have been great since after starting azathioprine, prednisone and

Remicade, although her platelets have remained above normal and have

never come down (my understanding is that this means there is

inflammation somewhere) I haven't gotten any clear answers about all

of this.

As far the time frame goes I have to agree with everyone else, it is

very individual and most people don't die from PSC. If it progresses

far enough most get a transplant.

There is another great support group at www.liverfamilies.net. Have a

look there - they are very welcoming and there are a few families

dealing with PSC (including us).

>

> Hi, My name is and I have a 5 year old son with UC and PSC. He

> was diagnosed with UC at age 3 and with PSC last year at age 4. I was

> wondering if anyone knew if PSC affects kids differently. If it seemed

> to progress any quicker or any slower? I have found alot on the

> internet and it seems to think that around 10 year is the life

> expectancy for a good bit of the people. I was was wondering if anyone

> on here has had it longer. Thanks for any help you can give.

>

July 13, 2008

My son was diagnosed at 11 but I am sure he was sick much earlier. He became much sicker over the years until at age 19 he had his tx. 3 years later he is doing great.MartiSubject: New to the group and diseaseTo: Date: Monday, April 21, 2008, 9:59 PM

Hi, My name is and I have a 5 year old son with UC and PSC. He

was diagnosed with UC at age 3 and with PSC last year at age 4. I was

wondering if anyone knew if PSC affects kids differently. If it seemed

to progress any quicker or any slower? I have found alot on the

internet and it seems to think that around 10 year is the life

expectancy for a good bit of the people. I was was wondering if anyone

on here has had it longer. Thanks for any help you can give.

July 13, 2008