3 in 1...Gallstones, pen pals and telling your child the outcome

M

mnmthomson

New member
Hey all. I am pretty new here so bare with me. My son is 10 and has CF. I have several issues I would like to ask about. First and most important...we just got out of the hospital for a "tune up". He has been having a lot of stomach pain. They found out that he has gallstones and said this is common with CF. Anyone else have this? If so what are you doing? They dont want to remove them at this point. However it causes a lot of pain at times and it interferes with his vest treatments.

The other is that being he has CF he doesnt have a lot of kids with his condition that he can talk to and relate to. He has plenty of friends but they dont understand what he goes through. I am looking to start up something for "CF Pen Pals" for kids. Or if anyone knows about anything already please let me know. We all have face book and that is our means of communication really.

And last but least to parents and older children with CF how did you tell or where told what CF really meant for you? Our son is getting older and starting to realize that its terminal. We havent talked a lot about it but he is very bright and asking more questions. How were you told and what could have be different. How did you deal with it. He also has kids his age who dont have CF asking a lot of questions. So we are now to the point he needs to know more.
Thanks
Mechelle
 
M

mnmthomson

New member
Hey all. I am pretty new here so bare with me. My son is 10 and has CF. I have several issues I would like to ask about. First and most important...we just got out of the hospital for a "tune up". He has been having a lot of stomach pain. They found out that he has gallstones and said this is common with CF. Anyone else have this? If so what are you doing? They dont want to remove them at this point. However it causes a lot of pain at times and it interferes with his vest treatments.

The other is that being he has CF he doesnt have a lot of kids with his condition that he can talk to and relate to. He has plenty of friends but they dont understand what he goes through. I am looking to start up something for "CF Pen Pals" for kids. Or if anyone knows about anything already please let me know. We all have face book and that is our means of communication really.

And last but least to parents and older children with CF how did you tell or where told what CF really meant for you? Our son is getting older and starting to realize that its terminal. We havent talked a lot about it but he is very bright and asking more questions. How were you told and what could have be different. How did you deal with it. He also has kids his age who dont have CF asking a lot of questions. So we are now to the point he needs to know more.
Thanks
Mechelle
 
M

mnmthomson

New member
Hey all. I am pretty new here so bare with me. My son is 10 and has CF. I have several issues I would like to ask about. First and most important...we just got out of the hospital for a "tune up". He has been having a lot of stomach pain. They found out that he has gallstones and said this is common with CF. Anyone else have this? If so what are you doing? They dont want to remove them at this point. However it causes a lot of pain at times and it interferes with his vest treatments.

The other is that being he has CF he doesnt have a lot of kids with his condition that he can talk to and relate to. He has plenty of friends but they dont understand what he goes through. I am looking to start up something for "CF Pen Pals" for kids. Or if anyone knows about anything already please let me know. We all have face book and that is our means of communication really.

And last but least to parents and older children with CF how did you tell or where told what CF really meant for you? Our son is getting older and starting to realize that its terminal. We havent talked a lot about it but he is very bright and asking more questions. How were you told and what could have be different. How did you deal with it. He also has kids his age who dont have CF asking a lot of questions. So we are now to the point he needs to know more.
Thanks
Mechelle
 
M

mnmthomson

New member
Hey all. I am pretty new here so bare with me. My son is 10 and has CF. I have several issues I would like to ask about. First and most important...we just got out of the hospital for a "tune up". He has been having a lot of stomach pain. They found out that he has gallstones and said this is common with CF. Anyone else have this? If so what are you doing? They dont want to remove them at this point. However it causes a lot of pain at times and it interferes with his vest treatments.

The other is that being he has CF he doesnt have a lot of kids with his condition that he can talk to and relate to. He has plenty of friends but they dont understand what he goes through. I am looking to start up something for "CF Pen Pals" for kids. Or if anyone knows about anything already please let me know. We all have face book and that is our means of communication really.

And last but least to parents and older children with CF how did you tell or where told what CF really meant for you? Our son is getting older and starting to realize that its terminal. We havent talked a lot about it but he is very bright and asking more questions. How were you told and what could have be different. How did you deal with it. He also has kids his age who dont have CF asking a lot of questions. So we are now to the point he needs to know more.
Thanks
Mechelle
 
M

mnmthomson

New member
Hey all. I am pretty new here so bare with me. My son is 10 and has CF. I have several issues I would like to ask about. First and most important...we just got out of the hospital for a "tune up". He has been having a lot of stomach pain. They found out that he has gallstones and said this is common with CF. Anyone else have this? If so what are you doing? They dont want to remove them at this point. However it causes a lot of pain at times and it interferes with his vest treatments.
<br />
<br />The other is that being he has CF he doesnt have a lot of kids with his condition that he can talk to and relate to. He has plenty of friends but they dont understand what he goes through. I am looking to start up something for "CF Pen Pals" for kids. Or if anyone knows about anything already please let me know. We all have face book and that is our means of communication really.
<br />
<br />And last but least to parents and older children with CF how did you tell or where told what CF really meant for you? Our son is getting older and starting to realize that its terminal. We havent talked a lot about it but he is very bright and asking more questions. How were you told and what could have be different. How did you deal with it. He also has kids his age who dont have CF asking a lot of questions. So we are now to the point he needs to know more.
<br />Thanks
<br />Mechelle
 
K

ktsmom

New member
I can offer one thought about the gallstone issue - my daughter is on Ursodiol because she had high liver enzymes upon diagnosis. Research that I have done on Urso is that it's main use in the non-cf world is to dissolve cholesterol gallstones. "Ursodiol desaturates bile, solubilizing cholesterol from the stone surface."

Urso has worked to lower DD's liver enzymes, but I have often wondered if it is also keeping gallstones at bay.

I'm not a doc, just a parent, <img src="i/expressions/face-icon-small-smile.gif" border="0"> but I offer this as food for thought. I continue to research this Urso thing because not all cf'er's are on it, as I understand.

I know others will chime in regarding your other questions.
 
K

ktsmom

New member
I can offer one thought about the gallstone issue - my daughter is on Ursodiol because she had high liver enzymes upon diagnosis. Research that I have done on Urso is that it's main use in the non-cf world is to dissolve cholesterol gallstones. "Ursodiol desaturates bile, solubilizing cholesterol from the stone surface."

Urso has worked to lower DD's liver enzymes, but I have often wondered if it is also keeping gallstones at bay.

I'm not a doc, just a parent, <img src="i/expressions/face-icon-small-smile.gif" border="0"> but I offer this as food for thought. I continue to research this Urso thing because not all cf'er's are on it, as I understand.

I know others will chime in regarding your other questions.
 
K

ktsmom

New member
I can offer one thought about the gallstone issue - my daughter is on Ursodiol because she had high liver enzymes upon diagnosis. Research that I have done on Urso is that it's main use in the non-cf world is to dissolve cholesterol gallstones. "Ursodiol desaturates bile, solubilizing cholesterol from the stone surface."

Urso has worked to lower DD's liver enzymes, but I have often wondered if it is also keeping gallstones at bay.

I'm not a doc, just a parent, <img src="i/expressions/face-icon-small-smile.gif" border="0"> but I offer this as food for thought. I continue to research this Urso thing because not all cf'er's are on it, as I understand.

I know others will chime in regarding your other questions.
 
K

ktsmom

New member
I can offer one thought about the gallstone issue - my daughter is on Ursodiol because she had high liver enzymes upon diagnosis. Research that I have done on Urso is that it's main use in the non-cf world is to dissolve cholesterol gallstones. "Ursodiol desaturates bile, solubilizing cholesterol from the stone surface."

Urso has worked to lower DD's liver enzymes, but I have often wondered if it is also keeping gallstones at bay.

I'm not a doc, just a parent, <img src="i/expressions/face-icon-small-smile.gif" border="0"> but I offer this as food for thought. I continue to research this Urso thing because not all cf'er's are on it, as I understand.

I know others will chime in regarding your other questions.
 
K

ktsmom

New member
I can offer one thought about the gallstone issue - my daughter is on Ursodiol because she had high liver enzymes upon diagnosis. Research that I have done on Urso is that it's main use in the non-cf world is to dissolve cholesterol gallstones. "Ursodiol desaturates bile, solubilizing cholesterol from the stone surface."
<br />
<br />Urso has worked to lower DD's liver enzymes, but I have often wondered if it is also keeping gallstones at bay.
<br />
<br />I'm not a doc, just a parent, <img src="i/expressions/face-icon-small-smile.gif" border="0"> but I offer this as food for thought. I continue to research this Urso thing because not all cf'er's are on it, as I understand.
<br />
<br />I know others will chime in regarding your other questions.
 
J

JORDYSMOM

New member
Hi Mechelle. Did the doc say why they don't want to remove the stones? Have they tried medication to dissolve them? If they are causing pain, and interfering with airway clearance, I'd think they might need to be removed. I would definitely look at diet changes that might help to not irritate his gallbladder too.

Talking to our kids about this disease can be a daunting task. Often though, our kids are tougher than we are, and they appreciate our honesty with them. As long as it is age appropriate, obviously. I highly recommend that you read "Love & Logic, Parenting Children With Health Issues". It's full of great ideas on this very subject. Also, you might want to check with the social worker at your clinic. I'm sure they have helpful resources as well.

Stacey
 
J

JORDYSMOM

New member
Hi Mechelle. Did the doc say why they don't want to remove the stones? Have they tried medication to dissolve them? If they are causing pain, and interfering with airway clearance, I'd think they might need to be removed. I would definitely look at diet changes that might help to not irritate his gallbladder too.

Talking to our kids about this disease can be a daunting task. Often though, our kids are tougher than we are, and they appreciate our honesty with them. As long as it is age appropriate, obviously. I highly recommend that you read "Love & Logic, Parenting Children With Health Issues". It's full of great ideas on this very subject. Also, you might want to check with the social worker at your clinic. I'm sure they have helpful resources as well.

Stacey
 
J

JORDYSMOM

New member
Hi Mechelle. Did the doc say why they don't want to remove the stones? Have they tried medication to dissolve them? If they are causing pain, and interfering with airway clearance, I'd think they might need to be removed. I would definitely look at diet changes that might help to not irritate his gallbladder too.

Talking to our kids about this disease can be a daunting task. Often though, our kids are tougher than we are, and they appreciate our honesty with them. As long as it is age appropriate, obviously. I highly recommend that you read "Love & Logic, Parenting Children With Health Issues". It's full of great ideas on this very subject. Also, you might want to check with the social worker at your clinic. I'm sure they have helpful resources as well.

Stacey
 
J

JORDYSMOM

New member
Hi Mechelle. Did the doc say why they don't want to remove the stones? Have they tried medication to dissolve them? If they are causing pain, and interfering with airway clearance, I'd think they might need to be removed. I would definitely look at diet changes that might help to not irritate his gallbladder too.

Talking to our kids about this disease can be a daunting task. Often though, our kids are tougher than we are, and they appreciate our honesty with them. As long as it is age appropriate, obviously. I highly recommend that you read "Love & Logic, Parenting Children With Health Issues". It's full of great ideas on this very subject. Also, you might want to check with the social worker at your clinic. I'm sure they have helpful resources as well.

Stacey
 
J

JORDYSMOM

New member
Hi Mechelle. Did the doc say why they don't want to remove the stones? Have they tried medication to dissolve them? If they are causing pain, and interfering with airway clearance, I'd think they might need to be removed. I would definitely look at diet changes that might help to not irritate his gallbladder too.
<br />
<br />Talking to our kids about this disease can be a daunting task. Often though, our kids are tougher than we are, and they appreciate our honesty with them. As long as it is age appropriate, obviously. I highly recommend that you read "Love & Logic, Parenting Children With Health Issues". It's full of great ideas on this very subject. Also, you might want to check with the social worker at your clinic. I'm sure they have helpful resources as well.
<br />
<br />Stacey
 
R

Ratatosk

Administrator
Staff member
DS has also been on Ursodiol since he was a couple weeks old to "keep his gallbladder happy" as well as to address elevated liver enzymes caused by being on TPN. I know his doctor did mention that around their teens due to gallbladder issues ultrasounds are usually ordered to check for stones, etc.
 
R

Ratatosk

Administrator
Staff member
DS has also been on Ursodiol since he was a couple weeks old to "keep his gallbladder happy" as well as to address elevated liver enzymes caused by being on TPN. I know his doctor did mention that around their teens due to gallbladder issues ultrasounds are usually ordered to check for stones, etc.
 
R

Ratatosk

Administrator
Staff member
DS has also been on Ursodiol since he was a couple weeks old to "keep his gallbladder happy" as well as to address elevated liver enzymes caused by being on TPN. I know his doctor did mention that around their teens due to gallbladder issues ultrasounds are usually ordered to check for stones, etc.
 
R

Ratatosk

Administrator
Staff member
DS has also been on Ursodiol since he was a couple weeks old to "keep his gallbladder happy" as well as to address elevated liver enzymes caused by being on TPN. I know his doctor did mention that around their teens due to gallbladder issues ultrasounds are usually ordered to check for stones, etc.
 
R

Ratatosk

Administrator
Staff member
DS has also been on Ursodiol since he was a couple weeks old to "keep his gallbladder happy" as well as to address elevated liver enzymes caused by being on TPN. I know his doctor did mention that around their teens due to gallbladder issues ultrasounds are usually ordered to check for stones, etc.
<br />
 
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