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]

Hi ,

I am so sorry about your situation but you have come to the right place. This group has a lot of valuable info. Everyone hear either has PSC or has a family member with it. For me it is my Dad. I cannot help you as much as many others can in this group. You will get lots of responses come morning. Everyone is different, some needing transplants and some having PSC for many years, some 20. Some having lots of symptoms and some with very little. I will pray for your dear son, for his health and for wisdom in making the right decisions concerning his health. Please keep us informed.

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

To: Sent: Wednesday, January 21, 2009 9:19:11 PMSubject: I'm freaking out! Someone help me, please....

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 am so sorry about your situation but you have come to the right place. This group has a lot of valuable info. Everyone hear either has PSC or has a family member with it. For me it is my Dad. I cannot help you as much as many others can in this group. You will get lots of responses come morning. Everyone is different, some needing transplants and some having PSC for many years, some 20. Some having lots of symptoms and some with very little. I will pray for your dear son, for his health and for wisdom in making the right decisions concerning his health. Please keep us informed.

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

To: Sent: Wednesday, January 21, 2009 9:19:11 PMSubject: I'm freaking out! Someone help me, please....

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 am so sorry about your situation but you have come to the right place. This group has a lot of valuable info. Everyone hear either has PSC or has a family member with it. For me it is my Dad. I cannot help you as much as many others can in this group. You will get lots of responses come morning. Everyone is different, some needing transplants and some having PSC for many years, some 20. Some having lots of symptoms and some with very little. I will pray for your dear son, for his health and for wisdom in making the right decisions concerning his health. Please keep us informed.

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

To: Sent: Wednesday, January 21, 2009 9:19:11 PMSubject: I'm freaking out! Someone help me, please....

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 -

There are many knowledgeable, wonderful people in this group and there

is also a PSCmoms group on yahoo

http://health.groups.yahoo.com/group/pscmoms/?yguid=174826286

The founder of the PSCmoms group is an amazing woman with a wealth of

knowledge and the biggest heart imaginable. There are quite a few moms

on the board with a lot to share.

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

>

> 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 -

There are many knowledgeable, wonderful people in this group and there

is also a PSCmoms group on yahoo

http://health.groups.yahoo.com/group/pscmoms/?yguid=174826286

The founder of the PSCmoms group is an amazing woman with a wealth of

knowledge and the biggest heart imaginable. There are quite a few moms

on the board with a lot to share.

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

>

> 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 -

There are many knowledgeable, wonderful people in this group and there

is also a PSCmoms group on yahoo

http://health.groups.yahoo.com/group/pscmoms/?yguid=174826286

The founder of the PSCmoms group is an amazing woman with a wealth of

knowledge and the biggest heart imaginable. There are quite a few moms

on the board with a lot to share.

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

>

> 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

> >

>