I'm freaking out! Someone help me, please....

[Guest guest]

My 7yo son Liam has Crohn's Disease, diagnosed 4/06. In 2007, Ped GI

diag PSC with blood work and he had MRCP. It always seemed to be

secondary to the CD. We came back from doc visit today and.....after

awhile I realized she is MUCH more concerned about the PSC. The way it

was all presented to me, I thought it was something that would " go

away " w/ the treatment we are currently doing for the CD (Imuran &

Flagyl). I'm reading more, educating myself, but, as can happen when

you look things up on the internet, I'm reading very bleak prognosis

information.

Someone please tell me.....should I be expecting my son to need a

transplant someday? Where can I go for more information?...especially

related to children. I will talk to the doc tomorrow, but right now

it's late, and I'm freaking out a little.

Ohio

[Guest guest]

,

Welcome to the group and sorry about your sons diagnosis. Yes your son probably will need a liver transplant some day, but it is not all bleak. I was diagnosed 19 years ago (when I was 33) and still have my own liver, but there are numerous mothers that are a part of this group. I kow of one mother of a three year old, several with 9 year olds, one whose son was diagnosed when he was 7 and is now 16, one whose son was diagnosed at 1 and I think is 7 now, and some others with colledge age kids. Some of the mothers have greatly improved their childrens health by making dietary changes. Don't dispair they are constantly making medical advances and will likely find a cure with in your sons lifetime. Some links to some websites where you can get some " good " info;

PSC Literature

PSC Partners

PSC Support (UK)

We are here and can relate, you have our prayers and God's grace.

Ian (52) PSC 89

My 7yo son Liam has Crohn's Disease, diagnosed 4/06. In 2007, Ped GI diag PSC with blood work and he had MRCP. It always seemed to be secondary to the CD. We came back from doc visit today and.....after

awhile I realized she is MUCH more concerned about the PSC. The way it was all presented to me, I thought it was something that would " go away " w/ the treatment we are currently doing for the CD (Imuran &

Flagyl). I'm reading more, educating myself, but, as can happen when you look things up on the internet, I'm reading very bleak prognosis information.Someone please tell me.....should I be expecting my son to need a

transplant someday? Where can I go for more information?...especially related to children. I will talk to the doc tomorrow, but right now it's late, and I'm freaking out a little.Ohio

-- Ian Cribb P.Eng.

[Guest guest]

,

I have had PSC for at least 14 years. I am an adult so I don't want

to address your concerns, but there are several mom's on this site

who can help you. What's important toknow is that everyone is

different and everyone's course is different. Please try to relax

and educate yourself. Find out what your son's lab test results are

and ask the other mom's on this sight questions. You are not a lone

here and the people here are very helpful. I am so sorry to here

that your son has received this diagnosis, but you have come to the

right place.

Dawn

>

> My 7yo son Liam has Crohn's Disease, diagnosed 4/06. In 2007, Ped

GI

> diag PSC with blood work and he had MRCP. It always seemed to be

> secondary to the CD. We came back from doc visit today

and.....after

> awhile I realized she is MUCH more concerned about the PSC. The

way it

> was all presented to me, I thought it was something that would " go

> away " w/ the treatment we are currently doing for the CD (Imuran &

> Flagyl). I'm reading more, educating myself, but, as can happen

when

> you look things up on the internet, I'm reading very bleak

prognosis

> information.

>

> Someone please tell me.....should I be expecting my son to need a

> transplant someday? Where can I go for more

information?...especially

> related to children. I will talk to the doc tomorrow, but right

now

> it's late, and I'm freaking out a little.

>

>

> Ohio

>

[Guest guest]

Hi ,

I was diagnoses with this disease about 7 years ago, i must say its

been quite a

journey, i also had UC before i was diagnosed with PSC. I feel this illness is

affected by

environmental conditions which can cause either progression or slow healing, It

is alot

easier for it to progress in this toxic world but with diligence and care you

can slowly heal

and reverse symptoms and regain health. excuse the run on sentence. In my

experiece

diet has played a key role in improving my quality of life, if i eat any heavily

processed

foods i will tend to get itchy and my blood feels toxic, i now follow a diet of

mostly raw

foods with some raw diary, this isnt the norm and is not endorsed by many

mainstream

medical doctors but it has served me better than anything from a hepitologist. I

feel that

many of the treatments for PSC are overall detrimental to your health and end up

progressing the illness. Since i was given my Transplant ultamatum about two

years ago i

changed my ways to what i am doing now. i also stoped taking the medications

URSO and

ASACOL, it is frustrating and unnerving to me that when i stopped these

medications i

started feeling better, this leads me to believe that PSC can also be aggravated

by chemical

toxicity in many prescription medicines, especially ASACOL. Anyways i guess im

just trying

to emphasize the point that western medicine doesn't fully understand all the

processes of

the human body and lots of times they are quick to put you into a category as

diagnosed

with a certain plan of action, its their job. But the world is full of

different methodologies

of medicine that have treated liver issues for a long time. please e-mail me if

you want

any tips in alternative medice.

Good Luck!

Happy new year!

Abraham Bettinger 22

UC/95 PSC01

> >

> > My 7yo son Liam has Crohn's Disease, diagnosed 4/06. In 2007, Ped GI

> > diag PSC with blood work and he had MRCP. It always seemed to be

> > secondary to the CD. We came back from doc visit today and.....after

> > awhile I realized she is MUCH more concerned about the PSC. The way it

> > was all presented to me, I thought it was something that would " go

> > away " w/ the treatment we are currently doing for the CD (Imuran &

> > Flagyl). I'm reading more, educating myself, but, as can happen when

> > you look things up on the internet, I'm reading very bleak prognosis

> > information.

> >

> > Someone please tell me.....should I be expecting my son to need a

> > transplant someday? Where can I go for more information?...especially

> > related to children. I will talk to the doc tomorrow, but right now

> > it's late, and I'm freaking out a little.

> >

> >

> > Ohio

> >

>