Re: Pain and nausea, causes unknown!!

February 20, 2009

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: "joseph.gwynn" Date: Fri, 20 Feb 2009 15:55:00 -0000To: < >Subject: Pain and nausea, causes unknown!! My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: "joseph.gwynn" Date: Fri, 20 Feb 2009 15:55:00 -0000To: < >Subject: Pain and nausea, causes unknown!! My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: "joseph.gwynn" Date: Fri, 20 Feb 2009 15:55:00 -0000To: < >Subject: Pain and nausea, causes unknown!! My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Gwynn,

Have they considered the vasculitis as playing a part in the pain? There are so

many different types of vasculitis and it can affect so many areas as well as

organs. Abdomenal pain is a nightmare. Wish I had more advice.

Pain and nausea, causes unknown!!

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird).

> >

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Gwynn,

Have they considered the vasculitis as playing a part in the pain? There are so

many different types of vasculitis and it can affect so many areas as well as

organs. Abdomenal pain is a nightmare. Wish I had more advice.

Pain and nausea, causes unknown!!

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird).

> >

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening...

At Your Service,

Stevie Lynn Gedgaudas-OStos

Customer Care Senior Supervisor

sgedgaud@...

amifox73@...

Sent by:

02/20/2009 10:13 AM

Please respond to

To

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Subject

Re: Pain and nausea, causes unknown!!

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the time

Sent from my BlackBerry Smartphone provided by Alltel

From: " joseph.gwynn "

Date: Fri, 20 Feb 2009 15:55:00 -0000

To: < >

Subject: Pain and nausea, causes unknown!!

My daughter had been experiencing a lot of pain and nausea especially

after eating (even though she eats like a bird). Then one day last

week she woke up in pain and it never subsided even after taking a

whole lot of pain killers (which usually take the edge off). After

about 7 hours it subsided.

To cut a long story short, a few days later she had the same thing,

and it would not go away. We took her to hospital where they did a CT

scan and ultra sound, her TIPS was fine, and they could see nothing

that should be causing all the pain???

They did an ERCP and thought there may be some sort of blockage, but

they just removed some sludge and a small stone not enough to be

causing it???? So, where do we go from here???? They will release her

from hospital with no diagnosis, and no idea how to treat this pain???

Has any one else out there experienced this, and if so what was

causing it and how did you treat it They put a patch on her arm

yesterday to try and help with the nausea?? Any advice, suggestions

will be welcome.

Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening...

At Your Service,

Stevie Lynn Gedgaudas-OStos

Customer Care Senior Supervisor

sgedgaud@...

amifox73@...

Sent by:

02/20/2009 10:13 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the time

Sent from my BlackBerry Smartphone provided by Alltel

From: " joseph.gwynn "

Date: Fri, 20 Feb 2009 15:55:00 -0000

To: < >

Subject: Pain and nausea, causes unknown!!

My daughter had been experiencing a lot of pain and nausea especially

after eating (even though she eats like a bird). Then one day last

week she woke up in pain and it never subsided even after taking a

whole lot of pain killers (which usually take the edge off). After

about 7 hours it subsided.

To cut a long story short, a few days later she had the same thing,

and it would not go away. We took her to hospital where they did a CT

scan and ultra sound, her TIPS was fine, and they could see nothing

that should be causing all the pain???

They did an ERCP and thought there may be some sort of blockage, but

they just removed some sludge and a small stone not enough to be

causing it???? So, where do we go from here???? They will release her

from hospital with no diagnosis, and no idea how to treat this pain???

Has any one else out there experienced this, and if so what was

causing it and how did you treat it They put a patch on her arm

yesterday to try and help with the nausea?? Any advice, suggestions

will be welcome.

Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening...

At Your Service,

Stevie Lynn Gedgaudas-OStos

Customer Care Senior Supervisor

sgedgaud@...

amifox73@...

Sent by:

02/20/2009 10:13 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the time

Sent from my BlackBerry Smartphone provided by Alltel

From: " joseph.gwynn "

Date: Fri, 20 Feb 2009 15:55:00 -0000

To: < >

Subject: Pain and nausea, causes unknown!!

My daughter had been experiencing a lot of pain and nausea especially

after eating (even though she eats like a bird). Then one day last

week she woke up in pain and it never subsided even after taking a

whole lot of pain killers (which usually take the edge off). After

about 7 hours it subsided.

To cut a long story short, a few days later she had the same thing,

and it would not go away. We took her to hospital where they did a CT

scan and ultra sound, her TIPS was fine, and they could see nothing

that should be causing all the pain???

They did an ERCP and thought there may be some sort of blockage, but

they just removed some sludge and a small stone not enough to be

causing it???? So, where do we go from here???? They will release her

from hospital with no diagnosis, and no idea how to treat this pain???

Has any one else out there experienced this, and if so what was

causing it and how did you treat it They put a patch on her arm

yesterday to try and help with the nausea?? Any advice, suggestions

will be welcome.

Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son.Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 10:54:25 -0600To: < >Subject: Re: Pain and nausea, causes unknown!! I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Supervisor sgedgaud (AT) applevac (DOT) comamifox73 (AT) yahoo (DOT) com amifox73 (AT) yahoo (DOT) com Sent by: 02/20/2009 10:13 AMPlease respond to To cc SubjectRe: Pain and nausea, causes unknown!! How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: " joseph.gwynn " Date: Fri, 20 Feb 2009 15:55:00 -0000 To: < > Subject: Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son.Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 10:54:25 -0600To: < >Subject: Re: Pain and nausea, causes unknown!! I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Supervisor sgedgaud (AT) applevac (DOT) comamifox73 (AT) yahoo (DOT) com amifox73 (AT) yahoo (DOT) com Sent by: 02/20/2009 10:13 AMPlease respond to To cc SubjectRe: Pain and nausea, causes unknown!! How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: " joseph.gwynn " Date: Fri, 20 Feb 2009 15:55:00 -0000 To: < > Subject: Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son.Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 10:54:25 -0600To: < >Subject: Re: Pain and nausea, causes unknown!! I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Supervisor sgedgaud (AT) applevac (DOT) comamifox73 (AT) yahoo (DOT) com amifox73 (AT) yahoo (DOT) com Sent by: 02/20/2009 10:13 AMPlease respond to To cc SubjectRe: Pain and nausea, causes unknown!! How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: " joseph.gwynn " Date: Fri, 20 Feb 2009 15:55:00 -0000 To: < > Subject: Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Probiotics? Dr. never mentioned those> Does it help? What does it do? No one could insult me as I will take any advise to help my son feel better.

As far as nutrition, we are talking to our counselor on Monday and nutrition guidance is on the agenda for Tyler that day.

At Your Service,

Stevie Lynn Gedgaudas OStos

sgedgaud@...

dvardell2@...

Sent by:

02/20/2009 11:32 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son.

Best,

Sent from my Verizon Wireless BlackBerry

From: Stevie Gedgaudas

Date: Fri, 20 Feb 2009 10:54:25 -0600

To: < >

Subject: Re: Pain and nausea, causes unknown!!

I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening...

At Your Service,

Stevie Lynn Gedgaudas-OStos

Customer Care Senior Supervisor

sgedgaud@...

amifox73@...

Sent by:

02/20/2009 10:13 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the time

Sent from my BlackBerry Smartphone provided by Alltel

From: " joseph.gwynn "

Date: Fri, 20 Feb 2009 15:55:00 -0000

To: < >

Subject: Pain and nausea, causes unknown!!

My daughter had been experiencing a lot of pain and nausea especially

after eating (even though she eats like a bird). Then one day last

week she woke up in pain and it never subsided even after taking a

whole lot of pain killers (which usually take the edge off). After

about 7 hours it subsided.

To cut a long story short, a few days later she had the same thing,

and it would not go away. We took her to hospital where they did a CT

scan and ultra sound, her TIPS was fine, and they could see nothing

that should be causing all the pain???

They did an ERCP and thought there may be some sort of blockage, but

they just removed some sludge and a small stone not enough to be

causing it???? So, where do we go from here???? They will release her

from hospital with no diagnosis, and no idea how to treat this pain???

Has any one else out there experienced this, and if so what was

causing it and how did you treat it They put a patch on her arm

yesterday to try and help with the nausea?? Any advice, suggestions

will be welcome.

Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Probiotics? Dr. never mentioned those> Does it help? What does it do? No one could insult me as I will take any advise to help my son feel better.

As far as nutrition, we are talking to our counselor on Monday and nutrition guidance is on the agenda for Tyler that day.

At Your Service,

Stevie Lynn Gedgaudas OStos

sgedgaud@...

dvardell2@...

Sent by:

02/20/2009 11:32 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son.

Best,

Sent from my Verizon Wireless BlackBerry

From: Stevie Gedgaudas

Date: Fri, 20 Feb 2009 10:54:25 -0600

To: < >

Subject: Re: Pain and nausea, causes unknown!!

I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening...

At Your Service,

Stevie Lynn Gedgaudas-OStos

Customer Care Senior Supervisor

sgedgaud@...

amifox73@...

Sent by:

02/20/2009 10:13 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the time

Sent from my BlackBerry Smartphone provided by Alltel

From: " joseph.gwynn "

Date: Fri, 20 Feb 2009 15:55:00 -0000

To: < >

Subject: Pain and nausea, causes unknown!!

My daughter had been experiencing a lot of pain and nausea especially

after eating (even though she eats like a bird). Then one day last

week she woke up in pain and it never subsided even after taking a

whole lot of pain killers (which usually take the edge off). After

about 7 hours it subsided.

To cut a long story short, a few days later she had the same thing,

and it would not go away. We took her to hospital where they did a CT

scan and ultra sound, her TIPS was fine, and they could see nothing

that should be causing all the pain???

They did an ERCP and thought there may be some sort of blockage, but

they just removed some sludge and a small stone not enough to be

causing it???? So, where do we go from here???? They will release her

from hospital with no diagnosis, and no idea how to treat this pain???

Has any one else out there experienced this, and if so what was

causing it and how did you treat it They put a patch on her arm

yesterday to try and help with the nausea?? Any advice, suggestions

will be welcome.

Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Probiotics? Dr. never mentioned those> Does it help? What does it do? No one could insult me as I will take any advise to help my son feel better.

As far as nutrition, we are talking to our counselor on Monday and nutrition guidance is on the agenda for Tyler that day.

At Your Service,

Stevie Lynn Gedgaudas OStos

sgedgaud@...

dvardell2@...

Sent by:

02/20/2009 11:32 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son.

Best,

Sent from my Verizon Wireless BlackBerry

From: Stevie Gedgaudas

Date: Fri, 20 Feb 2009 10:54:25 -0600

To: < >

Subject: Re: Pain and nausea, causes unknown!!

I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening...

At Your Service,

Stevie Lynn Gedgaudas-OStos

Customer Care Senior Supervisor

sgedgaud@...

amifox73@...

Sent by:

02/20/2009 10:13 AM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the time

Sent from my BlackBerry Smartphone provided by Alltel

From: " joseph.gwynn "

Date: Fri, 20 Feb 2009 15:55:00 -0000

To: < >

Subject: Pain and nausea, causes unknown!!

My daughter had been experiencing a lot of pain and nausea especially

after eating (even though she eats like a bird). Then one day last

week she woke up in pain and it never subsided even after taking a

whole lot of pain killers (which usually take the edge off). After

about 7 hours it subsided.

To cut a long story short, a few days later she had the same thing,

and it would not go away. We took her to hospital where they did a CT

scan and ultra sound, her TIPS was fine, and they could see nothing

that should be causing all the pain???

They did an ERCP and thought there may be some sort of blockage, but

they just removed some sludge and a small stone not enough to be

causing it???? So, where do we go from here???? They will release her

from hospital with no diagnosis, and no idea how to treat this pain???

Has any one else out there experienced this, and if so what was

causing it and how did you treat it They put a patch on her arm

yesterday to try and help with the nausea?? Any advice, suggestions

will be welcome.

Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

February 20, 2009

Stevie,

I would see a pediatric rheumatologist. There are so many things that can cause

elevated GGT. Elevated sed rates could mean inflammation. I would want some more

blood work to look at the different sedimentations and maybe rheumatoid factor

(RF), ANA, there are so many things that could be causing the leg, foot, joints,

and weakness. Let us know what you find out. Does he take any meds? I am

nauseated all the time. Some people respond to Zofran. I sometimes throw up and

I actually feel better when I do. Take care, Cheryl ID, PSC, UC, 50 yrs

Pain and nausea, causes unknown!!

>

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird). Then one day last

> week she woke up in pain and it never subsided even after taking a

> whole lot of pain killers (which usually take the edge off). After

> about 7 hours it subsided.

>

> To cut a long story short, a few days later she had the same thing,

> and it would not go away. We took her to hospital where they did a CT

> scan and ultra sound, her TIPS was fine, and they could see nothing

> that should be causing all the pain???

>

> They did an ERCP and thought there may be some sort of blockage, but

> they just removed some sludge and a small stone not enough to be

> causing it???? So, where do we go from here???? They will release her

> from hospital with no diagnosis, and no idea how to treat this pain???

> Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Stevie,

I would see a pediatric rheumatologist. There are so many things that can cause

elevated GGT. Elevated sed rates could mean inflammation. I would want some more

blood work to look at the different sedimentations and maybe rheumatoid factor

(RF), ANA, there are so many things that could be causing the leg, foot, joints,

and weakness. Let us know what you find out. Does he take any meds? I am

nauseated all the time. Some people respond to Zofran. I sometimes throw up and

I actually feel better when I do. Take care, Cheryl ID, PSC, UC, 50 yrs

Pain and nausea, causes unknown!!

>

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird). Then one day last

> week she woke up in pain and it never subsided even after taking a

> whole lot of pain killers (which usually take the edge off). After

> about 7 hours it subsided.

>

> To cut a long story short, a few days later she had the same thing,

> and it would not go away. We took her to hospital where they did a CT

> scan and ultra sound, her TIPS was fine, and they could see nothing

> that should be causing all the pain???

>

> They did an ERCP and thought there may be some sort of blockage, but

> they just removed some sludge and a small stone not enough to be

> causing it???? So, where do we go from here???? They will release her

> from hospital with no diagnosis, and no idea how to treat this pain???

> Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Stevie,

I would see a pediatric rheumatologist. There are so many things that can cause

elevated GGT. Elevated sed rates could mean inflammation. I would want some more

blood work to look at the different sedimentations and maybe rheumatoid factor

(RF), ANA, there are so many things that could be causing the leg, foot, joints,

and weakness. Let us know what you find out. Does he take any meds? I am

nauseated all the time. Some people respond to Zofran. I sometimes throw up and

I actually feel better when I do. Take care, Cheryl ID, PSC, UC, 50 yrs

Pain and nausea, causes unknown!!

>

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird). Then one day last

> week she woke up in pain and it never subsided even after taking a

> whole lot of pain killers (which usually take the edge off). After

> about 7 hours it subsided.

>

> To cut a long story short, a few days later she had the same thing,

> and it would not go away. We took her to hospital where they did a CT

> scan and ultra sound, her TIPS was fine, and they could see nothing

> that should be causing all the pain???

>

> They did an ERCP and thought there may be some sort of blockage, but

> they just removed some sludge and a small stone not enough to be

> causing it???? So, where do we go from here???? They will release her

> from hospital with no diagnosis, and no idea how to treat this pain???

> Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Cheryl, thank you for this info. that is what I will do next is see a Rheumatologist. I would have not even thought of that. I know you are not a doctor, but are you saying it could be unrelated to the PSC or a possible sympton of it ?. Just need to get this child some relief... Zofran is on my list to inquiry about with our Hepatologist on Monday....

Thanks again to you all....

Stevie Ostos

sgedgaud@...

" Logan Berg "

Sent by:

02/20/2009 12:31 PM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

Stevie,

I would see a pediatric rheumatologist. There are so many things that can cause elevated GGT. Elevated sed rates could mean inflammation. I would want some more blood work to look at the different sedimentations and maybe rheumatoid factor (RF), ANA, there are so many things that could be causing the leg, foot, joints, and weakness. Let us know what you find out. Does he take any meds? I am nauseated all the time. Some people respond to Zofran. I sometimes throw up and I actually feel better when I do. Take care, Cheryl ID, PSC, UC, 50 yrs

Pain and nausea, causes unknown!!

>

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird). Then one day last

> week she woke up in pain and it never subsided even after taking a

> whole lot of pain killers (which usually take the edge off). After

> about 7 hours it subsided.

>

> To cut a long story short, a few days later she had the same thing,

> and it would not go away. We took her to hospital where they did a CT

> scan and ultra sound, her TIPS was fine, and they could see nothing

> that should be causing all the pain???

>

> They did an ERCP and thought there may be some sort of blockage, but

> they just removed some sludge and a small stone not enough to be

> causing it???? So, where do we go from here???? They will release her

> from hospital with no diagnosis, and no idea how to treat this pain???

> Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Cheryl, thank you for this info. that is what I will do next is see a Rheumatologist. I would have not even thought of that. I know you are not a doctor, but are you saying it could be unrelated to the PSC or a possible sympton of it ?. Just need to get this child some relief... Zofran is on my list to inquiry about with our Hepatologist on Monday....

Thanks again to you all....

Stevie Ostos

sgedgaud@...

" Logan Berg "

Sent by:

02/20/2009 12:31 PM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

Stevie,

I would see a pediatric rheumatologist. There are so many things that can cause elevated GGT. Elevated sed rates could mean inflammation. I would want some more blood work to look at the different sedimentations and maybe rheumatoid factor (RF), ANA, there are so many things that could be causing the leg, foot, joints, and weakness. Let us know what you find out. Does he take any meds? I am nauseated all the time. Some people respond to Zofran. I sometimes throw up and I actually feel better when I do. Take care, Cheryl ID, PSC, UC, 50 yrs

Pain and nausea, causes unknown!!

>

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird). Then one day last

> week she woke up in pain and it never subsided even after taking a

> whole lot of pain killers (which usually take the edge off). After

> about 7 hours it subsided.

>

> To cut a long story short, a few days later she had the same thing,

> and it would not go away. We took her to hospital where they did a CT

> scan and ultra sound, her TIPS was fine, and they could see nothing

> that should be causing all the pain???

>

> They did an ERCP and thought there may be some sort of blockage, but

> they just removed some sludge and a small stone not enough to be

> causing it???? So, where do we go from here???? They will release her

> from hospital with no diagnosis, and no idea how to treat this pain???

> Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Cheryl, thank you for this info. that is what I will do next is see a Rheumatologist. I would have not even thought of that. I know you are not a doctor, but are you saying it could be unrelated to the PSC or a possible sympton of it ?. Just need to get this child some relief... Zofran is on my list to inquiry about with our Hepatologist on Monday....

Thanks again to you all....

Stevie Ostos

sgedgaud@...

" Logan Berg "

Sent by:

02/20/2009 12:31 PM

Please respond to

To

cc

Subject

Re: Pain and nausea, causes unknown!!

Stevie,

I would see a pediatric rheumatologist. There are so many things that can cause elevated GGT. Elevated sed rates could mean inflammation. I would want some more blood work to look at the different sedimentations and maybe rheumatoid factor (RF), ANA, there are so many things that could be causing the leg, foot, joints, and weakness. Let us know what you find out. Does he take any meds? I am nauseated all the time. Some people respond to Zofran. I sometimes throw up and I actually feel better when I do. Take care, Cheryl ID, PSC, UC, 50 yrs

Pain and nausea, causes unknown!!

>

> My daughter had been experiencing a lot of pain and nausea especially

> after eating (even though she eats like a bird). Then one day last

> week she woke up in pain and it never subsided even after taking a

> whole lot of pain killers (which usually take the edge off). After

> about 7 hours it subsided.

>

> To cut a long story short, a few days later she had the same thing,

> and it would not go away. We took her to hospital where they did a CT

> scan and ultra sound, her TIPS was fine, and they could see nothing

> that should be causing all the pain???

>

> They did an ERCP and thought there may be some sort of blockage, but

> they just removed some sludge and a small stone not enough to be

> causing it???? So, where do we go from here???? They will release her

> from hospital with no diagnosis, and no idea how to treat this pain???

> Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

February 20, 2009

Stevie,

No I am not a doctor, but I have many other health problems. Right now I am

seeking a new dx for some rheumatological problems. I have had joint, muscle,

foot, hand pain that is debilitating. I am almost non functioning. They want to

just label it Fibromyalgia, but it is kind of a garbage dx. I believe eventually

we will discover that muscle pain people suffer from will have many different

causes. Doctors want to either ignore something that isn't in their specialty or

assume everything is caused by liver disease. Normal people do not have pain all

over and have trouble walking. Before I shrugged it off, I would want tests done

to rule out rheumatoid arthritits, lupus, etc. A rheumatologist would be the

doctor that would know what to check. Vasculitis is not uncommon among our

numbers. I think they run p-anca and c-anca tests and then there's sjogren's.

I'm not trying to scare you or anything, I am just so tired of having my pain

shrugged off with the comments like " you do have a lot

of problems. " I have good insurance so I want them to check everything before

they just give up. I've been brushed off by so many doctors. It is very

difficult to be my own advocate when I am so sick. It is impossible for a ten

year old to be. It is very difficult to be the mom of a chronically sick child.

There is a fine line between being an aggressive advocate and being accused of

munchausen's by proxy (making your child ill for all the attention you get). I

hope all the best for you and your son. Take care, Cheryl

Pain and nausea, causes unknown!!

> >

> > My daughter had been experiencing a lot of pain and nausea especially

> > after eating (even though she eats like a bird). Then one day last

> > week she woke up in pain and it never subsided even after taking a

> > whole lot of pain killers (which usually take the edge off). After

> > about 7 hours it subsided.

> >

> > To cut a long story short, a few days later she had the same thing,

> > and it would not go away. We took her to hospital where they did a CT

> > scan and ultra sound, her TIPS was fine, and they could see nothing

> > that should be causing all the pain???

> >

> > They did an ERCP and thought there may be some sort of blockage, but

> > they just removed some sludge and a small stone not enough to be

> > causing it???? So, where do we go from here???? They will release her

> > from hospital with no diagnosis, and no idea how to treat this pain???

> > Has any one else out there experienced this, and if so what was

> > causing it and how did you treat it They put a patch on her arm

> > yesterday to try and help with the nausea?? Any advice, suggestions

> > will be welcome.

> >

> > Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

> >

>

February 20, 2009