Re: New: intro, questions, greetings

[Guest guest]

> I'm glad you found us but sorry that Wyatt is now diagnosed with

PSC..I'm an older member, having received a liver transplant when I

was 51 yo in 1998. My diagnosis took a long time from when I first

experience high liver enzymes in 1980 to identifying PSC in

1989.Knowledge about PSC has come a long way in that time, but there

is still no treatment that halts PSC progression, although we all

hopethat one will be found.

Hi, Tim. My son's dr told us that the antibiotic in trial at Stanfor

has worked to halt progression for the 4-5yrs they've been using it.

He said they don't know how long it will work (they're still in

trial), but that it works for at least 5yrs. I haven't found out more

than what he told us in the initial visit when he gave us our son's

diagnosis, though. We only found out last Wednesday and it's been

kind of a whirlwind since then. Has anyone here heard about this

trial at Stanford, the antibiotic they're using, and what results

they've had with it so far?

Oh, and when I asked the dr if a transplant (down the road) would

work like a 'cure' for our son, he told us that the new liver would

take on the same problems eventually. Is that how it works? On info

sites, I've only read about liver failure leading up to the

transplant, but not much at all about life after the translpant and

nothing about the new liver 'taking on' PSC. I did read that

childhood PSC can be " insidious " and that recent studies have shown

that transplant in children can make no difference. That was

upsetting, of course, to read, but it can't be how it always is,

right? I know I have a lot of research to do, but was my son's dr

correct?

> I think you need to include Wyatt in your discussions of PSC and

UC. At 12 he is old enough to understand what is going on and to

take responsibility for some part of his health care.

I think I was unclear in my OP. He does know some, just not all. He

doesn't know 'every'thing, but knows a great deal. I was just unsure

about when and how to share the most difficult parts, the parts I

know will frighten him. He was with us at his dr's office, but some

things were discussed (briefly) while he was walking back out to the

waiting room. He's a very science-oriented and science-loving kid,

intends to be a scientist when he grows up. Also, b/c of his genetic

medical condition, he has a fairly solid base in medical science for

his age. He's a very 'young' 12, but he's definitely a science boy.

Right now, he's accepting everything he does know fairly well and

discussing his thoughts & feelings about a little. We didn't tell

him what his dr said about a transplant and we didn't tell him that

we have no idea how long that antibiotic will work for. That's

pretty much all he doesn't know from the dr appt --and we haven't

discusses the websites with him (yet). But, I hear what you're

saying, especially about him taking on some responsibility for his

care. It's hard for us to believe sometimes that he's not far from

18, and we do need to teach him how to manage his health conditions

more and more as he gets older. He was part of catching this,

actually b/c he knew what signs to watch for with his genetic

condition (only it turned out to be UC instead, which led to finding

PSC as well --and slight advancement with his genetic condition to

boot, actually). I just don't know when to share the hardest parts.

[Guest guest]

> I'm glad you found us but sorry that Wyatt is now diagnosed with

PSC..I'm an older member, having received a liver transplant when I

was 51 yo in 1998. My diagnosis took a long time from when I first

experience high liver enzymes in 1980 to identifying PSC in

1989.Knowledge about PSC has come a long way in that time, but there

is still no treatment that halts PSC progression, although we all

hopethat one will be found.

Hi, Tim. My son's dr told us that the antibiotic in trial at Stanfor

has worked to halt progression for the 4-5yrs they've been using it.

He said they don't know how long it will work (they're still in

trial), but that it works for at least 5yrs. I haven't found out more

than what he told us in the initial visit when he gave us our son's

diagnosis, though. We only found out last Wednesday and it's been

kind of a whirlwind since then. Has anyone here heard about this

trial at Stanford, the antibiotic they're using, and what results

they've had with it so far?

Oh, and when I asked the dr if a transplant (down the road) would

work like a 'cure' for our son, he told us that the new liver would

take on the same problems eventually. Is that how it works? On info

sites, I've only read about liver failure leading up to the

transplant, but not much at all about life after the translpant and

nothing about the new liver 'taking on' PSC. I did read that

childhood PSC can be " insidious " and that recent studies have shown

that transplant in children can make no difference. That was

upsetting, of course, to read, but it can't be how it always is,

right? I know I have a lot of research to do, but was my son's dr

correct?

> I think you need to include Wyatt in your discussions of PSC and

UC. At 12 he is old enough to understand what is going on and to

take responsibility for some part of his health care.

I think I was unclear in my OP. He does know some, just not all. He

doesn't know 'every'thing, but knows a great deal. I was just unsure

about when and how to share the most difficult parts, the parts I

know will frighten him. He was with us at his dr's office, but some

things were discussed (briefly) while he was walking back out to the

waiting room. He's a very science-oriented and science-loving kid,

intends to be a scientist when he grows up. Also, b/c of his genetic

medical condition, he has a fairly solid base in medical science for

his age. He's a very 'young' 12, but he's definitely a science boy.

Right now, he's accepting everything he does know fairly well and

discussing his thoughts & feelings about a little. We didn't tell

him what his dr said about a transplant and we didn't tell him that

we have no idea how long that antibiotic will work for. That's

pretty much all he doesn't know from the dr appt --and we haven't

discusses the websites with him (yet). But, I hear what you're

saying, especially about him taking on some responsibility for his

care. It's hard for us to believe sometimes that he's not far from

18, and we do need to teach him how to manage his health conditions

more and more as he gets older. He was part of catching this,

actually b/c he knew what signs to watch for with his genetic

condition (only it turned out to be UC instead, which led to finding

PSC as well --and slight advancement with his genetic condition to

boot, actually). I just don't know when to share the hardest parts.

[Guest guest]

> So sorry to hear about Wyatt's PSC/UC diagnosis, and that your

sister is also suspected to have it. This must be quite a blow. But

you have found the right place for support and information, and we'll

do our best to answer your questions. There are many parents here

with children who have PSC ... our son was diagnosed at age 18, and

so far has had very few problems, and for this we are very thankful.

I'm so glad to hear that your son has had few problems. How did he

handle receiving the diagnosis and learning the full spectrum of what

PSC is (if it's okay to ask)?

>Our son was diagnosed as stage 2 PSC. The disease can progress at

different rates in different people, and it's hard to predict how

rapidly or slowly it will progress. It's possible that with very

early medical intervention disease progression might be delayed,

although clinical trials to prove this are still in progress.

From skimming here and what I've seen on the websites I've looked at,

I do realize now that there's no predicting how it will go in each

individual (as it definitely seems to be a very individual course to

run). I was thinking/hoping that the first year or two would be an

indicator, though, of how it will go with our son --or is that an

erroneous assumption/hope on my part? Our son's genetic condition

also runs an individual course and it was the first 1-2 yrs of it

that helped us guess at how it would run in our son (at least until

he hits puberty -puberty is when that condition can run amok). We

thought this next yr+ starting meds and having 'recheck' procedures

and blood work would give us an indication of whether he'd move slow

or quick in his PSC similar to how it did with our son's genetic

disease. Of course, PSC (and UC) is/are a whole new mystery for us

to unravel. We're kind of overwhelmed.

> It's likely that the antibiotic that may be prescribed for your son

is vancomycin. Dr at Stanford seems to be the only one testing

this therapy: KL, KM 1998 Oral vancomycin: treatment of

primary sclerosing cholangitis in children with inflammatory bowel

disease. J. Pediatr. Gastroenterol. Nutr. 27: 580-583.

Do you know how it works to take this (or any) antibiotic WITH a

probiotic for the UC? Our son's dr (Philp Mac, Ped GI) started

our son on the probiotic for his UC symptoms the day he gave us the

diagnosis and intends to start the antibiotic after our son's been on

the probiotic for a month. The probiotic says 'don't take with

antibiotics' right on it, though. Does anyone else take VSL for UC

and an antibiotic?

>Our son is taking high=dose ursodiol, rifampin and asacol, with

supplements of vitamins, folic acid and fish oils. We hope that this

combination will help delay disease progression. There is a vast

amount of information on PSC and inflammatory bowel disease on the

internet, and you can find much of it here:

Thanks for the link! I've saved it to my favorites and will share it

with my husband tonight when he gets home. I've read " urso " many

times while skimming the board and in some sites I've looked at,

too. Last night I read up on it in the bookstore, too. It seems to

be helpful to many with PSC. I haven't heard of the other 2 meds your

son takes (other than the vitamins, of course).

> I might recommend browsing through the FAQ and www Resources

sections before delving into the scientific literature. It is easy to

get overwhelmed with information. Take it slowly and keep asking

questions. You might consider taking a look at the brochure " Living

with PSC " , and newsletters prepared by members of this group who are

also members of PSC Partners Seeking a Cure:

Thank you again. I want as much information from as many sources as

I can get. I want to soak everything into my brain until I know it

without having to check 'what's that mean again'. I want to have a

thorough comprehension.

> If you want to meet others with PSC and caregivers, then please

also think about attending the third PSC Partners Seeking a Cure

conference in Denver. There will be a special session on Pediatric

PSC on Saturday April 14, 2007.

Do you happen to know the cost for attending?

Um, and speaking of 'cost' --we're a PPO and are wondering what to do

to prepare for the financial side of having PSC. Is it expensive, is

it easy to get things covered by insurance, etc? We want to plan for

this aspect for ourselves now and to assist our son to prepare for

taking over the financial aspect of his health care someday. One

thing we've considered is where we intended to have him start a

retirment fun in his teens (yes, we're that weird -or that planful,

depending on how you look at it), we're now thinking it may be more

prudent to start him on a private investment plan so that he can tap

into the money when needed rather than having access denied (without

penalty) if it were in a retirement fund. What have you done or what

would you suggest in regards to preparing for the finances and

helping our son to prepare for when he takes that over? (

>The emotional stress on those diagnosed with PSC and their

caregivers is very, very real but is hard to quantify, and there may

not be any one solution to it that is right for everyone. People deal

with it in different ways. I find some consolation in keeping up with

all the research that is being done on PSC, IBD and other

inflammatory or autoimmune diseases. I can see that there is rapid

progress taking place, and I take hope in the thought that this may

lead to new therapies in the near future. I also take pride in the

fact that PSC Partners Seeking a Cure is making good progress in

raising funds to support PSC research. Without research there is

unlikely to be much progress.

We already had a high level of stress in our lives; this has just

sent us over the edge of the abyss. My husband, I think, is having

an even harder time than I am. We both are hoping and praying for

research and medical advancements to come through. The most

difficult part of our son's diagnosis (of course) has been finding

out that there is no cure and, as of yet, no way to permanently halt

progression.

> I don't have a good answer on how to explain PSC to a 12-year old.

You might try explaining how the medications may help slow down his

illness, and that doctors are working towards finding even better

medications?

That's pretty much what we've told him; we left out that we don't

know how long the meds will help and what his dr told us about a

transplant not being a 'cure'. He's so unbelievably content with the

amount he knows at this point, we're reticent to say

anything 'bigger' yet --but didn't know if that was best or not. We

aren't sure how to tell him about the 'big question mark' attached to

this.

You've been very helpful and kind, Dave. Thank you.

--Meghan (mom to Wyatt -psc 1/07, uc 1/07 & fap 8/01)