Re: New: intro, questions, greetings

[Guest guest]

Meghan-Welcome!There are several "mom's" on the list with children w/PSC. They will chime in before too long.Welcome to the group, my brother suffers from PSC, he is 30-and I am his primary care taker. I hope you enjoy all the kindness and vast knowledge this group can bring. There is also a PSC moms yahoo group, I am sure one of the moms with chime in with that group info as well.Welcome and be sure to ask lots of questions, everyone is very good about getting back with answers or at the very least words of comfort!-Brother, , 30, UC & PSC

[Guest guest]

Hi Meghan,

We are also a family of three. I am Taru-Mari (44) from Finland and I

am the mother of Eemeli (10 next month) who was diagnosed with PSC at

the age of 6 about 3,5 years ago. He does not have an IBD, 'just' PSC

so far, although right at the beginning we were told that it is very

likely that an IBD of some kind will be diagnosed later on.

Eemeli has been doing fine most of this time. Since the beginning he

has been on various doses of medicine such as metronidazole,

prednisolon, azathioprine, budesonide, calcium, vitamin D,

hydrocortisone and (I think) most importantly urso (ursodeoxyholic

acid). He has not had all the medicines at the same time but now he is

taking five different medicines. His liver enzymes are mostly fine but

they may rise when he gets bad cold. He has had two liver biopsies but

they did not confirm his diagnisis. Therefore his liver condition has

mainly been monitored by ultrasound and MRI so far. Additionally he

has bone density scans every two years. He was very sick at the

beginning so it has not been very difficult to get him to take the

medicine. He still remembers what the pain was like. Most times we are

rather used to having him take the pills. Sometimes he even prefers

going to the hospital or lab for bloodwork for going to school! Since

our situation is pretty stable at the moment, he can take part in

more or less any excercise or hobby he feels up to. Sometimes he tires

easily and the changes of the medicines sometimes make him feel a bit

strange.

Eemeli has been told as much of his liver disease as he has wanted to

know: the name, the part it affects, the reason why it is being

monitored and what the various medications are for. He tends to give

the pills his own names like a torpedo or something like it, and he

says this pill kills the disease inside him. I do not know if we are

doing the right thing but so far this seems to work for us. I think

everyone's and every child's disease is different and every person is

unique. I am sure you will feel what is the correct way to deal with

this with your son. Yes, it is hard for the parents, too. However,

many people manage to lead (relatively) normal lives with this and

other diseases. I think in our family I have coped the worst with the

fact of having a child diagnosed by a chronic condition. However, I

was very happy to find this list and I am sure you will get a lot of

good advice from the good and caring people here. Did you notice there

is also a yahoo list called pscmoms?

I wish Wyatt and your whole family strength in this new situation. I

hope that the doctors will soon find the medication that works for him

too, and that he can go on doing the things any 12-year olds enjoy

(maybe some extra fun to compensate for some the unpleasant medical

stuff - that, too, works for us). If there is anything you would like

to ask, please feel free to do so.

Taru-Mari

[Guest guest]

Hi Meghan,

We are also a family of three. I am Taru-Mari (44) from Finland and I

am the mother of Eemeli (10 next month) who was diagnosed with PSC at

the age of 6 about 3,5 years ago. He does not have an IBD, 'just' PSC

so far, although right at the beginning we were told that it is very

likely that an IBD of some kind will be diagnosed later on.

Eemeli has been doing fine most of this time. Since the beginning he

has been on various doses of medicine such as metronidazole,

prednisolon, azathioprine, budesonide, calcium, vitamin D,

hydrocortisone and (I think) most importantly urso (ursodeoxyholic

acid). He has not had all the medicines at the same time but now he is

taking five different medicines. His liver enzymes are mostly fine but

they may rise when he gets bad cold. He has had two liver biopsies but

they did not confirm his diagnisis. Therefore his liver condition has

mainly been monitored by ultrasound and MRI so far. Additionally he

has bone density scans every two years. He was very sick at the

beginning so it has not been very difficult to get him to take the

medicine. He still remembers what the pain was like. Most times we are

rather used to having him take the pills. Sometimes he even prefers

going to the hospital or lab for bloodwork for going to school! Since

our situation is pretty stable at the moment, he can take part in

more or less any excercise or hobby he feels up to. Sometimes he tires

easily and the changes of the medicines sometimes make him feel a bit

strange.

Eemeli has been told as much of his liver disease as he has wanted to

know: the name, the part it affects, the reason why it is being

monitored and what the various medications are for. He tends to give

the pills his own names like a torpedo or something like it, and he

says this pill kills the disease inside him. I do not know if we are

doing the right thing but so far this seems to work for us. I think

everyone's and every child's disease is different and every person is

unique. I am sure you will feel what is the correct way to deal with

this with your son. Yes, it is hard for the parents, too. However,

many people manage to lead (relatively) normal lives with this and

other diseases. I think in our family I have coped the worst with the

fact of having a child diagnosed by a chronic condition. However, I

was very happy to find this list and I am sure you will get a lot of

good advice from the good and caring people here. Did you notice there

is also a yahoo list called pscmoms?

I wish Wyatt and your whole family strength in this new situation. I

hope that the doctors will soon find the medication that works for him

too, and that he can go on doing the things any 12-year olds enjoy

(maybe some extra fun to compensate for some the unpleasant medical

stuff - that, too, works for us). If there is anything you would like

to ask, please feel free to do so.

Taru-Mari

[Guest guest]

Hi Meghan,

We are also a family of three. I am Taru-Mari (44) from Finland and I

am the mother of Eemeli (10 next month) who was diagnosed with PSC at

the age of 6 about 3,5 years ago. He does not have an IBD, 'just' PSC

so far, although right at the beginning we were told that it is very

likely that an IBD of some kind will be diagnosed later on.

Eemeli has been doing fine most of this time. Since the beginning he

has been on various doses of medicine such as metronidazole,

prednisolon, azathioprine, budesonide, calcium, vitamin D,

hydrocortisone and (I think) most importantly urso (ursodeoxyholic

acid). He has not had all the medicines at the same time but now he is

taking five different medicines. His liver enzymes are mostly fine but

they may rise when he gets bad cold. He has had two liver biopsies but

they did not confirm his diagnisis. Therefore his liver condition has

mainly been monitored by ultrasound and MRI so far. Additionally he

has bone density scans every two years. He was very sick at the

beginning so it has not been very difficult to get him to take the

medicine. He still remembers what the pain was like. Most times we are

rather used to having him take the pills. Sometimes he even prefers

going to the hospital or lab for bloodwork for going to school! Since

our situation is pretty stable at the moment, he can take part in

more or less any excercise or hobby he feels up to. Sometimes he tires

easily and the changes of the medicines sometimes make him feel a bit

strange.

Eemeli has been told as much of his liver disease as he has wanted to

know: the name, the part it affects, the reason why it is being

monitored and what the various medications are for. He tends to give

the pills his own names like a torpedo or something like it, and he

says this pill kills the disease inside him. I do not know if we are

doing the right thing but so far this seems to work for us. I think

everyone's and every child's disease is different and every person is

unique. I am sure you will feel what is the correct way to deal with

this with your son. Yes, it is hard for the parents, too. However,

many people manage to lead (relatively) normal lives with this and

other diseases. I think in our family I have coped the worst with the

fact of having a child diagnosed by a chronic condition. However, I

was very happy to find this list and I am sure you will get a lot of

good advice from the good and caring people here. Did you notice there

is also a yahoo list called pscmoms?

I wish Wyatt and your whole family strength in this new situation. I

hope that the doctors will soon find the medication that works for him

too, and that he can go on doing the things any 12-year olds enjoy

(maybe some extra fun to compensate for some the unpleasant medical

stuff - that, too, works for us). If there is anything you would like

to ask, please feel free to do so.

Taru-Mari

[Guest guest]

Hi Meghan, I'm glad you found us but sorry that Wyatt is now

diagnosed with PSC. There are quite a few other parents in the group

who have children with PSC, and a few teenagers too. I'm sure you'll

hear from them soon.

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 hope

that one will be found.

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. Within 6 years he

will be almost totally responsible for his meds and diet as he

leaves home to go on to college or other post high school activity.

He need to be aware of what signs to look for, what to avoid and how

not following recommendations will affect his immediate and long

term health. Trying to protect him by limiting his knowledge will

only put him at more risk in the long term.

Tim R

>

> Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

> board ('we' being my husband, Russ and our son, Wyatt)

[Guest guest]

Hi Meghan, I'm glad you found us but sorry that Wyatt is now

diagnosed with PSC. There are quite a few other parents in the group

who have children with PSC, and a few teenagers too. I'm sure you'll

hear from them soon.

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 hope

that one will be found.

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. Within 6 years he

will be almost totally responsible for his meds and diet as he

leaves home to go on to college or other post high school activity.

He need to be aware of what signs to look for, what to avoid and how

not following recommendations will affect his immediate and long

term health. Trying to protect him by limiting his knowledge will

only put him at more risk in the long term.

Tim R

>

> Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

> board ('we' being my husband, Russ and our son, Wyatt)

[Guest guest]

Hi Meghan, I'm glad you found us but sorry that Wyatt is now

diagnosed with PSC. There are quite a few other parents in the group

who have children with PSC, and a few teenagers too. I'm sure you'll

hear from them soon.

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 hope

that one will be found.

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. Within 6 years he

will be almost totally responsible for his meds and diet as he

leaves home to go on to college or other post high school activity.

He need to be aware of what signs to look for, what to avoid and how

not following recommendations will affect his immediate and long

term health. Trying to protect him by limiting his knowledge will

only put him at more risk in the long term.

Tim R

>

> Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

> board ('we' being my husband, Russ and our son, Wyatt)

[Guest guest]

Hi Meghan,

I'm sure that you'll hear from some of the other moms of PSCers, who will be

able to offer you lots of useful advice and support. I'm glad that you

found our group so quickly. The time of PSC diagnosis is a difficult time

for all of us-many conflicting emotions. One suggestion I have for you is

to consider coming to our yearly conference for PSCers and caregivers, which

will take place in Denver April 13-15, 2007. It's a wonderful opportunity to

hear hepatologists speak about the latest information about PSC and also a

fantastic chance to share your concerns, hopes, questions, etc. with other

PSCers and caregivers. We will also be having a breakout session on

Pediatric PSC with three pediatric hepatologists from Children's Hospital in

Denver. To learn more about the conference, go to

www.pscpartners.org/conf2007.htm . If you have more questions, please write

to me at pscpartners@... . Sorry you have reason to join our group,

but welcome!

Ricky

New: intro, questions, greetings

> Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

> board ('we' being my husband, Russ and our son, Wyatt) --even though

> I'm the one posting.

> Our son, Wyatt is

> 12 and was diagnosed this week after many weeks of symptoms and

> testing leading up to it. > Thank you for the board's existence as well

> as for taking the time to

> read my post.

>

>

>

>

>

>

[Guest guest]

Hi Meghan,

I'm sure that you'll hear from some of the other moms of PSCers, who will be

able to offer you lots of useful advice and support. I'm glad that you

found our group so quickly. The time of PSC diagnosis is a difficult time

for all of us-many conflicting emotions. One suggestion I have for you is

to consider coming to our yearly conference for PSCers and caregivers, which

will take place in Denver April 13-15, 2007. It's a wonderful opportunity to

hear hepatologists speak about the latest information about PSC and also a

fantastic chance to share your concerns, hopes, questions, etc. with other

PSCers and caregivers. We will also be having a breakout session on

Pediatric PSC with three pediatric hepatologists from Children's Hospital in

Denver. To learn more about the conference, go to

www.pscpartners.org/conf2007.htm . If you have more questions, please write

to me at pscpartners@... . Sorry you have reason to join our group,

but welcome!

Ricky

New: intro, questions, greetings

> Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

> board ('we' being my husband, Russ and our son, Wyatt) --even though

> I'm the one posting.

> Our son, Wyatt is

> 12 and was diagnosed this week after many weeks of symptoms and

> testing leading up to it. > Thank you for the board's existence as well

> as for taking the time to

> read my post.

>

>

>

>

>

>

[Guest guest]

Hi Meghan,

I'm sure that you'll hear from some of the other moms of PSCers, who will be

able to offer you lots of useful advice and support. I'm glad that you

found our group so quickly. The time of PSC diagnosis is a difficult time

for all of us-many conflicting emotions. One suggestion I have for you is

to consider coming to our yearly conference for PSCers and caregivers, which

will take place in Denver April 13-15, 2007. It's a wonderful opportunity to

hear hepatologists speak about the latest information about PSC and also a

fantastic chance to share your concerns, hopes, questions, etc. with other

PSCers and caregivers. We will also be having a breakout session on

Pediatric PSC with three pediatric hepatologists from Children's Hospital in

Denver. To learn more about the conference, go to

www.pscpartners.org/conf2007.htm . If you have more questions, please write

to me at pscpartners@... . Sorry you have reason to join our group,

but welcome!

Ricky

New: intro, questions, greetings

> Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

> board ('we' being my husband, Russ and our son, Wyatt) --even though

> I'm the one posting.

> Our son, Wyatt is

> 12 and was diagnosed this week after many weeks of symptoms and

> testing leading up to it. > Thank you for the board's existence as well

> as for taking the time to

> read my post.

>

>

>

>

>

>

[Guest guest]

Hi Meghan;

Welcome to the group. 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. Hopefully other members of the group

who have children with PSC will also reply. 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.

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.

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:

http://www.psc-literature.org

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:

http://www.pscpartners.org

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.

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.

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?

Best regards,

Dave

(father of (21), PSC 07/03; UC 08/03)

[Guest guest]

Hi Meghan;

Welcome to the group. 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. Hopefully other members of the group

who have children with PSC will also reply. 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.

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.

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:

http://www.psc-literature.org

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:

http://www.pscpartners.org

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.

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.

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?

Best regards,

Dave

(father of (21), PSC 07/03; UC 08/03)

[Guest guest]

Hi Meghan;

Welcome to the group. 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. Hopefully other members of the group

who have children with PSC will also reply. 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.

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.

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:

http://www.psc-literature.org

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:

http://www.pscpartners.org

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.

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.

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?

Best regards,

Dave

(father of (21), PSC 07/03; UC 08/03)

[Guest guest]

Hi Meghan,

Welcome to the group. I am so sorry to hear that you and your family, and especially your son, Wyatt, have need of this group, but you have come to the right place.

Our son was diagnosed with UC at age 14 and PSC just a few months later. He is 32 now. His UC was very difficult to control, but finally medications (Azulfidine, Prednisone, 6-MP, Carafate, Reglan, etc.) kicked in and he had some periods of relative remission. He was often unable to attend school due to his UC and was home-schooled at various times throughout high school. We used to get a lot of flak from teachers (and friends, church members, etc.) because Joe always looked good and many were skeptical that he was not truly sick. Oh, well, different story...

Anyway, Joe's PSC happily, but mysteriously, went away for many, many years and only returned (quite suddenly) in 2006. We do not know why the PSC was quiet for so long, but maybe it had something to do with his medications for UC. No one really understands this.

When Joe was 14 it was my inclination to try to manage everything, being mom and a nurse. His doctors were quite adamant that Joe learn all he could about his own illness and manage his own medications, diet, etc with supervision. His doctors were amazed at how quickly he became knowledgeable and articulate regarding UC and medical terminology. It gave Joe the needed feeling of control over the disease process, his own body and painful procedures.

You are right to learn all you can about IBD and PSC. Keep your focus on Wyatt and ask any and all your questions of his medical team, and expect to get answers. This group can help tremendously whenever you need anything!

Best wishes to Wyatt, You and your husband (as well as the rest of your family).

Sincerely,

Chris

mother of Joe (32), UC '87, J-pouch '99, PSC '06, ...

[Guest guest]

Hi Meghan,

Welcome to the group. I am so sorry to hear that you and your family, and especially your son, Wyatt, have need of this group, but you have come to the right place.

Our son was diagnosed with UC at age 14 and PSC just a few months later. He is 32 now. His UC was very difficult to control, but finally medications (Azulfidine, Prednisone, 6-MP, Carafate, Reglan, etc.) kicked in and he had some periods of relative remission. He was often unable to attend school due to his UC and was home-schooled at various times throughout high school. We used to get a lot of flak from teachers (and friends, church members, etc.) because Joe always looked good and many were skeptical that he was not truly sick. Oh, well, different story...

Anyway, Joe's PSC happily, but mysteriously, went away for many, many years and only returned (quite suddenly) in 2006. We do not know why the PSC was quiet for so long, but maybe it had something to do with his medications for UC. No one really understands this.

When Joe was 14 it was my inclination to try to manage everything, being mom and a nurse. His doctors were quite adamant that Joe learn all he could about his own illness and manage his own medications, diet, etc with supervision. His doctors were amazed at how quickly he became knowledgeable and articulate regarding UC and medical terminology. It gave Joe the needed feeling of control over the disease process, his own body and painful procedures.

You are right to learn all you can about IBD and PSC. Keep your focus on Wyatt and ask any and all your questions of his medical team, and expect to get answers. This group can help tremendously whenever you need anything!

Best wishes to Wyatt, You and your husband (as well as the rest of your family).

Sincerely,

Chris

mother of Joe (32), UC '87, J-pouch '99, PSC '06, ...

[Guest guest]

Hi Meghan,

Welcome to the group. I am so sorry to hear that you and your family, and especially your son, Wyatt, have need of this group, but you have come to the right place.

Our son was diagnosed with UC at age 14 and PSC just a few months later. He is 32 now. His UC was very difficult to control, but finally medications (Azulfidine, Prednisone, 6-MP, Carafate, Reglan, etc.) kicked in and he had some periods of relative remission. He was often unable to attend school due to his UC and was home-schooled at various times throughout high school. We used to get a lot of flak from teachers (and friends, church members, etc.) because Joe always looked good and many were skeptical that he was not truly sick. Oh, well, different story...

Anyway, Joe's PSC happily, but mysteriously, went away for many, many years and only returned (quite suddenly) in 2006. We do not know why the PSC was quiet for so long, but maybe it had something to do with his medications for UC. No one really understands this.

When Joe was 14 it was my inclination to try to manage everything, being mom and a nurse. His doctors were quite adamant that Joe learn all he could about his own illness and manage his own medications, diet, etc with supervision. His doctors were amazed at how quickly he became knowledgeable and articulate regarding UC and medical terminology. It gave Joe the needed feeling of control over the disease process, his own body and painful procedures.

You are right to learn all you can about IBD and PSC. Keep your focus on Wyatt and ask any and all your questions of his medical team, and expect to get answers. This group can help tremendously whenever you need anything!

Best wishes to Wyatt, You and your husband (as well as the rest of your family).

Sincerely,

Chris

mother of Joe (32), UC '87, J-pouch '99, PSC '06, ...

[Guest guest]

> Our son was diagnosed with UC at age 14 and PSC just a few months

later. He is 32 now.

Hi thanks for responding, and I, too am sorry that your son

has PSC.

What was that first year or two like for you/your son/your family?

>His UC was very difficult to control, but finally medications

(Azulfidine, Prednisone, 6-MP, Carafate, Reglan, etc.) kicked in and

he had some periods of relative remission. He was often unable to

attend school due to his UC and was home-schooled at various times

throughout high school. We used to get a lot of flak from teachers

(and friends, church members, etc.) because Joe always looked good

and many were skeptical that he was not truly sick. Oh, well,

different story...

Our son's apparent first bout of colitis, was/is moderate, I think

(although I don't know how mild or severe they can get, so I'm just

guessing). So far, he's only on the probiotic-VSL for it, nothing

else, so maybe it's mild instead of moderate?

When your son had painful attacks when he was younger, what were you

able to do to help him out? Did he ever take the VSL?

I would feel very frustrated to get flak like you mentioned. It

doesn't exactly help, does it?

> Anyway, Joe's PSC happily, but mysteriously, went away for many,

many years and only returned (quite suddenly) in 2006. We do not

know why the PSC was quiet for so long, but maybe it had something to

do with his medications for UC. No one really understands this.

Wow, though! I would love to have Wyatt's go away; it hasn't even

fully sunk in that it's permanent in our lives yet. I'm glad that

your son was able to have that for the time that he did.

> When Joe was 14 it was my inclination to try to manage everything,

being mom and a nurse. His doctors were quite adamant that Joe learn

all he could about his own illness and manage his own medications,

diet, etc with supervision. His doctors were amazed at how quickly

he became knowledgeable and articulate regarding UC and medical

terminology. It gave Joe the needed feeling of control over the

disease process, his own body and painful procedures.

Oh, the diet. Did/does your son follow a low-fiber diet or is it

more specialized than that? I've started reading labels for fiber

content with my son (and husband when he's home), and this week

Wyatt's charting his diet to focus on the fiber content (and I'm

incorporating it into a health/nutrition lesson while he's at it).

The dr wasn't clear about how much fiber is okay (just gave us a

worksheet listing the fiber contents of food and said 'go for low

ones'), so I've asked for a referral to a nutritionist (who has

patients with UC).

> You are right to learn all you can about IBD and PSC. Keep your

focus on Wyatt and ask any and all your questions of his medical

team, and expect to get answers. This group can help tremendously

whenever you need anything!

It's helped already to come here. I didn't get a lot of information

from my son's dr and even the websites I visited before this board

were brief and somewhat vague. This board, plus the bookstore has

helped the most so far. We'll talk more in-depth with our son's dr

when we go back, too.

Thank you for sharing so much information, Chris. It helps to learn,

to know.

[Guest guest]

> Our son was diagnosed with UC at age 14 and PSC just a few months

later. He is 32 now.

Hi thanks for responding, and I, too am sorry that your son

has PSC.

What was that first year or two like for you/your son/your family?

>His UC was very difficult to control, but finally medications

(Azulfidine, Prednisone, 6-MP, Carafate, Reglan, etc.) kicked in and

he had some periods of relative remission. He was often unable to

attend school due to his UC and was home-schooled at various times

throughout high school. We used to get a lot of flak from teachers

(and friends, church members, etc.) because Joe always looked good

and many were skeptical that he was not truly sick. Oh, well,

different story...

Our son's apparent first bout of colitis, was/is moderate, I think

(although I don't know how mild or severe they can get, so I'm just

guessing). So far, he's only on the probiotic-VSL for it, nothing

else, so maybe it's mild instead of moderate?

When your son had painful attacks when he was younger, what were you

able to do to help him out? Did he ever take the VSL?

I would feel very frustrated to get flak like you mentioned. It

doesn't exactly help, does it?

> Anyway, Joe's PSC happily, but mysteriously, went away for many,

many years and only returned (quite suddenly) in 2006. We do not

know why the PSC was quiet for so long, but maybe it had something to

do with his medications for UC. No one really understands this.

Wow, though! I would love to have Wyatt's go away; it hasn't even

fully sunk in that it's permanent in our lives yet. I'm glad that

your son was able to have that for the time that he did.

> When Joe was 14 it was my inclination to try to manage everything,

being mom and a nurse. His doctors were quite adamant that Joe learn

all he could about his own illness and manage his own medications,

diet, etc with supervision. His doctors were amazed at how quickly

he became knowledgeable and articulate regarding UC and medical

terminology. It gave Joe the needed feeling of control over the

disease process, his own body and painful procedures.

Oh, the diet. Did/does your son follow a low-fiber diet or is it

more specialized than that? I've started reading labels for fiber

content with my son (and husband when he's home), and this week

Wyatt's charting his diet to focus on the fiber content (and I'm

incorporating it into a health/nutrition lesson while he's at it).

The dr wasn't clear about how much fiber is okay (just gave us a

worksheet listing the fiber contents of food and said 'go for low

ones'), so I've asked for a referral to a nutritionist (who has

patients with UC).

> You are right to learn all you can about IBD and PSC. Keep your

focus on Wyatt and ask any and all your questions of his medical

team, and expect to get answers. This group can help tremendously

whenever you need anything!

It's helped already to come here. I didn't get a lot of information

from my son's dr and even the websites I visited before this board

were brief and somewhat vague. This board, plus the bookstore has

helped the most so far. We'll talk more in-depth with our son's dr

when we go back, too.

Thank you for sharing so much information, Chris. It helps to learn,

to know.

[Guest guest]

Hi Meghan;

I'll try to respond to some of your questions

>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)?

Diagnosis time was terrible; the doctors were very blunt ... it

didn't take him long to realize that the prognosis is poor. I think

it weighs heavily on him, but he takes his medications and

supplements faithfully, and avoids alcohol, and eats well, and this

has resulted in his blood work becoming near normal (he still has

slightly elevated alkaline phosphatase!) over the last 3.5 years. The

appearance of his colon has improved significantly since his initial

colonoscopy when UC was first diagnosed 3.5 years ago. He has seen

and these improvements himself, and this makes taking all the

medications seem worthwhile to him. I think that he realizes that he

has to live and enjoy his life now! He's done well at college, and is

now applying to medical school.

>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?

I honestly don't know the answer to this question. It is so hard to

predict. The experience has been with primary biliary cirrhosis (PBC)

that early treatment with urosdiol (in stages 1 and 2) is more

beneficial than treating late stages (stages 3 and 4). I like to

think that this may also apply to PSC ... but perhaps I am just

making an erroneous assumption? It seems to me that if intestinal

inflammation is allowed to persist for a long time, this could

promote cancer. So, calming the UC down with asacol (5-aminosalicylic

acid) and using ursodiol to reduce liver injury, and compete against

toxic bile acids being delivered to the intestines, might make a

difference in the long-run in terms of occurrence of colon cancer and

bile-duct cancer. Both 5-aminosalicylic acid and ursodiol have been

shown to reduce colon cancer, and preliminary results suggest that

ursodiol may also reduce the incidence of cholangiocarcinoma. I think

that in addition to keeping inflammation in check, it is important to

prevent vitamin deficiencies from developing.

>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.

I hope you don't mind me asking, but is Wyatt's genetic condition

familial adenomatous polyposis (FAP)?:

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=175100

If so, I can certainly appreciate how overwhlemed you must feel. The

only consolation must be that you are already familiar with annual

colonoscopies! Some consolation!!

>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?

As far as I know, VSL#3 contains 8 strains of bacteria:

Bifidobacterium breve

Bifidobacterium longum

Bifidobacterium infantis

Lactobacillus acidophilus

Lactobacillus plantarum

Lactobacillus casei

Lactobacillus bulgaricus

Streptococcus thermophilus

I've read that some Lactobacillus species (e.g. Lactobacillus

acidophilus) are sensitive to vancomycin, while the other

Lactobacillus species are resistant:

http://www.blackwell-synergy.com/doi/pdf/10.1046/j.1472-

765X.1998.00297.x

Sorry, but I don't know if Bifidobacterium species are vancomycin

resistant or sensitive. You'll have to talk this over with the GI to

see whether vancomycin would defeat the objective of the VSL?

>I haven't heard of the other 2 meds your

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

Asacol is a delayed release 5-aminosalicylic acid used as an anti-

inflammatory medication in ulcerative colitis. Rifampin (rifampicin)

is an antibiotic, but it is often used in cholestatic liver diseases

because it has a secondary effect of altering bile acid metabolism

and transport in the liver, and reduces itching (pruritus).

>Do you happen to know the cost for attending?

Costs of attending the PSC Partners Seeking a Cure Conference are

given at:

http://www.pscpartners.org/Conf2007.htm

>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?

I'll write to you off-line to explain what we have done financially.

>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.

Yes this really is a terrible shock for everyone. At least you are

not alone. Hopefully together we can all make a difference for those

who follow in our foot-steps?

>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.

I think that you are doing the right thing .... he doesn't need to

know some of the big questions right now. He'll ask you more when

he's ready.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

,

I was reading your response on the above and read that you will write

offline(?) how you are preparing financially for when your son takes

over. Can I beg for some sharing with me also if you don't mind? My

son turned 19 in June of 2006 and was diagnosed with PSC and UC about

June of 2005 so that about a year and a half since diagnosis although

he definitely had the UC for about a year before then looking at

symptoms he had. He is currently doing alright. He is a sophomore in

college. I worry about later. Perhaps worry too much sometimes and

want to do things now which i am able to do. Now he is on our

insurance. I worry about when he is on his own and how I can prepare

now financially. I will appreciate any advice you can give. If you

prefer to send the information off this site, you can send to me at

rntorto@.... Thank you.

Rita (Florida).

PS: I haven't gloated yet but any Buckeyes around?

[Guest guest]

Rita I am not but my son is 21 now and 2 years post tx. I knew in high school there would be huge medical financial concerns. I researched what NY considered disabled and got him on Medicaid. Here I could not get him on it because I work and own a house but if you get on Disability you are automaticly covered. I did it because I was afraid he would not be able to stay in college due to illness and would fall off my health insurance. Now that he is doing well it is frustrating for him because if he tries to work even a part time job it can affect him. Instead he is going to do some internships for his future career in media. That way he gets experience without loosing his health benefits. Once he graduates college I am praying he will get a job with good benefits. That will have to be a priority when he looks for a job. More than the salary. If you go this route you have to be persistent. I have a friend who's daughter had a stroke

at 12 and is paralyzyed from the waist down. The first time she applied for disability they said no that she was not disabled!! She got an attorney and they got it over turned. Good luck MartiRita wrote: , I was reading your response on the above and read that you will writeoffline(?) how you are preparing financially for when your son takesover. Can I beg for some sharing with me also if you don't mind? Myson turned 19 in June of 2006 and was diagnosed with PSC and UC

aboutJune of 2005 so that about a year and a half since diagnosis althoughhe definitely had the UC for about a year before then looking atsymptoms he had. He is currently doing alright. He is a sophomore incollege. I worry about later. Perhaps worry too much sometimes andwant to do things now which i am able to do. Now he is on ourinsurance. I worry about when he is on his own and how I can preparenow financially. I will appreciate any advice you can give. If youprefer to send the information off this site, you can send to me atrntorto (AT) phys (DOT) med.ufl.edu. Thank you.Rita (Florida).PS: I haven't gloated yet but any Buckeyes around?

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[Guest guest]

Thanks Marti,

I will search and see how one qualifies various things. If I don't

find things, nobody does and sometimes perhaps I take too serious a

view on this PSc and UC but I can't help it and I know without my

persistence and checking stuff, it may have taken a while before my

son would have been advised on need for supplements. He still doesn't

take his supplements well, claims he takes the fish oil religiously

but not the calcium, folic acid nor multivite but we are still working

on that.

Again thanks.

Rita

[Guest guest]

Thanks Marti,

I will search and see how one qualifies various things. If I don't

find things, nobody does and sometimes perhaps I take too serious a

view on this PSc and UC but I can't help it and I know without my

persistence and checking stuff, it may have taken a while before my

son would have been advised on need for supplements. He still doesn't

take his supplements well, claims he takes the fish oil religiously

but not the calcium, folic acid nor multivite but we are still working

on that.

Again thanks.

Rita