6 yo son just diagnosed with psc

[Guest guest]

My 6 yo son was dx with UC 2 years ago. After seeing elevated liver

enzymes over the last 8 mo. his ped gi did a liver biopsy on Feb 26th.

He is telling us his liver is showing signs of PSC.

We live in upstate NY approx 3 hr drive from NYC. Current Dr is at Mt

Sinai and he is recommending we talk to another dr there.

A few questions: can anyone recommend a ped liver dr or should we go

with this recommendation? If you do not want to name names on line you

can e-mail me at philion@.... Does anyone out there have

children with PSC> How do you possibly deal with telling a 6 yo about

the disease, or do you not? Any good resources to learn more about the

disease, (books?).

I have read quite a few of the posts in this group and I have to say

you all have amazing attitudes/stories. Thank you for sharing so that

people who are new do not feel quite so alone.

, mother of Miles, 6 yo, UC

[Guest guest]

Hi ,

I'm so sorry to hear about your son's recent PSC diagnosis, but you have

come to the right place for some answers for all your questions and

concerns. There is a group of moms with PSCers, and I'm sure that one of

them will write to you when they see your post. You will meet some

incredible PSCers and caregivers in this group.

In case you're interested, I wanted you to know that the weekend of April

13-15, PSC Partners Seeking a Cure is holding our annual conference for

PSCers and caregivers in Denver, Colorado. We have a terrific slate of

speakers, covering all aspects of life with PSC. Dr. Ron Sokol of The

Children's Hospital in Denver will be giving a presentation specifically on

PSC in Pediatrics, and we also have an hour question and answer session with

three pediatric hepatologists from The Children's Hospital. During the

weekend, we also schedule in plenty of time to talk to other PSCers and

caregivers to share experiences, concerns, questions, etc. It's a very

enlightening weekend for all of us. If you'd like to learn more about the

conference, write to me offline at pscpartners@... and go to

www.pscpartners.org/conf2007.htm to view the conference agenda.

I hope that Miles is feeling OK...

Ricky

PSC 2003

6 yo son just diagnosed with psc

> My 6 yo son was dx with UC 2 years ago. After seeing elevated liver

> enzymes over the last 8 mo. his ped gi did a liver biopsy on Feb 26th.

> He is telling us his liver is showing signs of PSC.

>

> >

> , mother of Miles, 6 yo, UC

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>

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>

>

>

[Guest guest]

Hi ,

I joined this support group about six months ago because I have a son

with PSC. He was diagnosed at the age of 6 years in July 2003. I

think there are also others with psc-kids in this support group but

you may find more of them in a yahoo-group called pscmoms. The members

in this group are great and I am sure you will learn a lot from them

about how to cope with the disease.

Our son did not have a history of any disease except rather frequent

ear infections. He got sick very suddenly, had severe stomach pains,

lost a lot of weight within three weeks, and was given the (probable)

diagnosis quite quickly. He had colonoscopy and a liver biopsy within

a month. He was found not to have IBD at the time but we were told it

may follow later on. PSC was confirmed as the diagnosis some time

later after changes typical to PSC were discovered in an MRI.

How to tell the kid about the disease? What we did was tell it

gradually. It was clear that he had to take medicine in order not to

have pain attacks and it was not too difficult to get him to do it

because he remembered and still remembers the pains he had. I guess we

tried to concentrate on what was going on at each moment and not to

talk about the prognosis or anything like that. We were very happy

that he was already able to take pills without problems. The bloodwork

was difficult in the beginning but we tried to give him some extra

treats (toys mostly) every time so he ended up looking forward to some

of the labs and doctor's appoinments (he is an only child so there are

no siblings who would get jealous). We have answered his questions

when he has them, and he does know the cure for the disease is liver

transplant if things get bad. I do not remember at what point we told

him that, it may have been on one of the occasions he saw a tv

programme about some disease which required an organ transplant - he

is very keen on watching science-related programmes and sometimes they

also have to do with medicine. Getting used to having a chronic

disease has not seemed as hard for our son as it has been for the

parents. This was possibly due to the fact that our son has a friend

with haemophilia, one school mate with epilepsy, and another one with

diabetes so he is not the only one who has a condition that has to

treated one way or another. I am sure there will be more difficult

periods at some point but we try to concentrate on the present moment.

Right now we should figure out a way to get our son to lose some of

the extra weight he has put on having had prednisolone for three years

and we are hoping to acchieve it partly by getting a puppy that he has

wanted for a long time (if it does not keep our son busy, it will keep

the parents busy and at least I need to lose as much weight as my son).

I cannot tell you anything about the Drs in your area because I am

from Finland but I assume someone in this support group must be from

the same area as you.

All the best to your son and the whole family. If you are interested

in exchanging emails about aspects of psc & kids, you are welcome to

contact me directly at my yahoo email tarumaritalaslahti@...

Taru-Mari, mother of Eemeli, now 10, dx with PSC 07/2003

[Guest guest]

Hi , my son who is six was diagnosed with psc and uc back in october after a liver biopsy showed scarring on the liver. We live in Philadelphia and have access to Childrens Hospital Of Philadelphia. We currently see pediatric GI Dr. named Dr. Sameo. We also got an appointment with his boss, Dr. Picolli who is charge of all Gi Drs. at CHOP. We thought he could enlighten us with more information but he seemed to repeat things we already knew. Anyway, if you have any questions, feel free to contact me since. I always tell Caleb my son hes not the only one with this disease. Its amazing how many kids are now being diagnosed with PSC.sarahphilion wrote: My 6 yo son was dx with UC 2 years ago. After seeing elevated liver enzymes over the last 8 mo. his ped gi did a liver biopsy on Feb 26th. He is telling us his liver is showing signs of PSC. We live in upstate NY approx 3 hr drive from NYC. Current Dr is at Mt Sinai and he is recommending we talk to another dr there. A few questions: can anyone recommend a ped liver dr or should we go with this recommendation? If you do not want to name names on line you can e-mail me at philion (AT) delhitel (DOT) net. Does anyone out there have children with PSC> How do you possibly deal with telling a 6 yo about the disease, or do you not? Any good resources to learn more about the disease, (books?). I have

read quite a few of the posts in this group and I have to say you all have amazing attitudes/stories. Thank you for sharing so that people who are new do not feel quite so alone., mother of Miles, 6 yo, UC

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[Guest guest]

, My son, , is now 9 years old. He was diagnosed with PSC at age 7, during a work-up for a double lung transplant. So far he does not have UC or Crohn's, which seems to put him in the minority among PSC'ers, but that's fine with me since he has so many other GI and Endocrine issues we're dealing with. With so much going on at the time, I don't recall how we brought up and discussed the information about his liver. does know that he will eventually have to have a liver transplant (he's listed now), and what can eventually happen without one. Having been through one transplant already, he's not too worried about it. He does get mad at me, though, when I watch ER on TNT in the mornings. He asks me, "How can you watch this when your own son could die?!" His way of expressing his fear of it to me, I suppose. I can't help with docs, as we're from Wisconsin and are in Minnesota at the Mc House in Minneapolis seeing docs there. There IS a book for children on Kidney and Liver tranplants. http://www.amazon.com/inside-story-guide-kidney-transplants/dp/0970244649/ref=sr_1_3/103-7618993-2893436?ie=UTF8 & s=books & qid=1174224204 & sr=1-3 We were given this book at the hospital. It's really nice because it discusses things related to these two types of transplants in language the kids can understand, along with explaining the jobs & importance of the liver and kidneys. There are also quotes from MANY children who had either a kidney or a liver transplant, telling how they felt emotionally and physically with diagnosis, during and

after transplant, and beforehand when they were first sick. They also talk about what things helped them handle it all. They show a photo of the child, along with their age and what transplant they had. Amisarahphilion wrote: My 6 yo son was dx with UC 2 years ago. After seeing elevated liver enzymes over the last 8 mo. his ped gi did a liver biopsy on Feb 26th. He is telling us his liver is showing signs of PSC. We live in upstate NY

approx 3 hr drive from NYC. Current Dr is at Mt Sinai and he is recommending we talk to another dr there. A few questions: can anyone recommend a ped liver dr or should we go with this recommendation? If you do not want to name names on line you can e-mail me at philion (AT) delhitel (DOT) net. Does anyone out there have children with PSC> How do you possibly deal with telling a 6 yo about the disease, or do you not? Any good resources to learn more about the disease, (books?). I have read quite a few of the posts in this group and I have to say you all have amazing attitudes/stories. Thank you for sharing so that people who are new do not feel quite so alone., mother of Miles, 6 yo, UC Ami mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, Hypothyroid, GERD, High BP, ADD, Anemia, Osteopenia, Gastroperesis, Varices mom to Emma - 13 yrs - Migraines stepmom to - 14 yrs - ADHD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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Where in upstate do you live? We live in Utica. Our son was diagnosied at age 11.and got his tx at 19. He was treated for years at Boston Children's They havw an amazing program there.Martisarahphilion wrote: My 6 yo son was dx with UC 2 years ago. After seeing elevated liver enzymes over the last 8 mo. his ped gi did a liver biopsy on Feb 26th. He is telling us his liver is showing signs of PSC. We live in upstate NY approx 3 hr drive from NYC. Current Dr is at Mt Sinai

and he is recommending we talk to another dr there. A few questions: can anyone recommend a ped liver dr or should we go with this recommendation? If you do not want to name names on line you can e-mail me at philion (AT) delhitel (DOT) net. Does anyone out there have children with PSC> How do you possibly deal with telling a 6 yo about the disease, or do you not? Any good resources to learn more about the disease, (books?). I have read quite a few of the posts in this group and I have to say you all have amazing attitudes/stories. Thank you for sharing so that people who are new do not feel quite so alone. , mother of Miles, 6 yo, UC

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