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

[dasjsmum]

Hi Mechelle

I dont have any info on gallstones, but as far as the outcomes of cf and talking about them goes:

Firstly, I would never use the term 'terminal', but use the term 'chronic'. Cf is not terminal in the way cancer and such can be. You do not know the outcome for your child, and you will notice that there are many adult people with cf on this forum.

I told my son that there isnt a cure, and that it's a chronic disease that can get worse over time. I then encouraged him/them to be pro active with his treatments and eating etc. I also would add that there are many people who have full and active lives with cf (and to make it easier for me, he has two siblings with cf who are adults and getting on with their lives).

I just think that there is no need to load a child with the burden of the word 'terminal', and all that that means, it infers that there is no hope, and it doesnt matter what the person does they will die anyhow. That is not true with cf, it is a chronic disease that can be managed well with treatments etc (although, occassionally/rarely this is not the case and a child with cf will become very sick regardless of how hard everyone works to ensure they are well).

I hope this helps, I just like to focus on the positives rather then the negatives, encourage your child to be pro active and fight their cf, because with the word terminal, a young person may decide that life isnt worth living, and being pro active is a waste of time because they will die anyhow.

 

[dasjsmum]

Hi Mechelle

I dont have any info on gallstones, but as far as the outcomes of cf and talking about them goes:

Firstly, I would never use the term 'terminal', but use the term 'chronic'. Cf is not terminal in the way cancer and such can be. You do not know the outcome for your child, and you will notice that there are many adult people with cf on this forum.

I told my son that there isnt a cure, and that it's a chronic disease that can get worse over time. I then encouraged him/them to be pro active with his treatments and eating etc. I also would add that there are many people who have full and active lives with cf (and to make it easier for me, he has two siblings with cf who are adults and getting on with their lives).

I just think that there is no need to load a child with the burden of the word 'terminal', and all that that means, it infers that there is no hope, and it doesnt matter what the person does they will die anyhow. That is not true with cf, it is a chronic disease that can be managed well with treatments etc (although, occassionally/rarely this is not the case and a child with cf will become very sick regardless of how hard everyone works to ensure they are well).

I hope this helps, I just like to focus on the positives rather then the negatives, encourage your child to be pro active and fight their cf, because with the word terminal, a young person may decide that life isnt worth living, and being pro active is a waste of time because they will die anyhow.

 

[dasjsmum]

Hi Mechelle

I dont have any info on gallstones, but as far as the outcomes of cf and talking about them goes:

Firstly, I would never use the term 'terminal', but use the term 'chronic'. Cf is not terminal in the way cancer and such can be. You do not know the outcome for your child, and you will notice that there are many adult people with cf on this forum.

I told my son that there isnt a cure, and that it's a chronic disease that can get worse over time. I then encouraged him/them to be pro active with his treatments and eating etc. I also would add that there are many people who have full and active lives with cf (and to make it easier for me, he has two siblings with cf who are adults and getting on with their lives).

I just think that there is no need to load a child with the burden of the word 'terminal', and all that that means, it infers that there is no hope, and it doesnt matter what the person does they will die anyhow. That is not true with cf, it is a chronic disease that can be managed well with treatments etc (although, occassionally/rarely this is not the case and a child with cf will become very sick regardless of how hard everyone works to ensure they are well).

I hope this helps, I just like to focus on the positives rather then the negatives, encourage your child to be pro active and fight their cf, because with the word terminal, a young person may decide that life isnt worth living, and being pro active is a waste of time because they will die anyhow.

 

[dasjsmum]

Hi Mechelle

I dont have any info on gallstones, but as far as the outcomes of cf and talking about them goes:

Firstly, I would never use the term 'terminal', but use the term 'chronic'. Cf is not terminal in the way cancer and such can be. You do not know the outcome for your child, and you will notice that there are many adult people with cf on this forum.

I told my son that there isnt a cure, and that it's a chronic disease that can get worse over time. I then encouraged him/them to be pro active with his treatments and eating etc. I also would add that there are many people who have full and active lives with cf (and to make it easier for me, he has two siblings with cf who are adults and getting on with their lives).

I just think that there is no need to load a child with the burden of the word 'terminal', and all that that means, it infers that there is no hope, and it doesnt matter what the person does they will die anyhow. That is not true with cf, it is a chronic disease that can be managed well with treatments etc (although, occassionally/rarely this is not the case and a child with cf will become very sick regardless of how hard everyone works to ensure they are well).

I hope this helps, I just like to focus on the positives rather then the negatives, encourage your child to be pro active and fight their cf, because with the word terminal, a young person may decide that life isnt worth living, and being pro active is a waste of time because they will die anyhow.

 

[dasjsmum]

Hi Mechelle
<br />
<br />I dont have any info on gallstones, but as far as the outcomes of cf and talking about them goes:
<br />
<br />Firstly, I would never use the term 'terminal', but use the term 'chronic'. Cf is not terminal in the way cancer and such can be. You do not know the outcome for your child, and you will notice that there are many adult people with cf on this forum.
<br />
<br />I told my son that there isnt a cure, and that it's a chronic disease that can get worse over time. I then encouraged him/them to be pro active with his treatments and eating etc. I also would add that there are many people who have full and active lives with cf (and to make it easier for me, he has two siblings with cf who are adults and getting on with their lives).
<br />
<br />I just think that there is no need to load a child with the burden of the word 'terminal', and all that that means, it infers that there is no hope, and it doesnt matter what the person does they will die anyhow. That is not true with cf, it is a chronic disease that can be managed well with treatments etc (although, occassionally/rarely this is not the case and a child with cf will become very sick regardless of how hard everyone works to ensure they are well).
<br />
<br />I hope this helps, I just like to focus on the positives rather then the negatives, encourage your child to be pro active and fight their cf, because with the word terminal, a young person may decide that life isnt worth living, and being pro active is a waste of time because they will die anyhow.

 

[mysticrose]

Sorry I have no experience with gallstones at all.

With our kids I don't refear to CF as "terminal". They have asked if it can kill them. I've been honest and said yes BUT death is the only one sure thing in life. They could die from CF, they could die in a car accident, or poof one day a blood clot shoots to the brain and game over. I honestly just try not to let them dwell. We have our sad moments but pills/vest/nebs/doctors just seems routine. We've made alot of special needs friends. One of their close friends has a brother who suffered from C/P thanks to his ignorant doctor. He couldn't talk,walk or play really. The kids counted themselves as very lucky. It can be a rough thing to talk about but very worth it in the end.

 

[mysticrose]

Sorry I have no experience with gallstones at all.

With our kids I don't refear to CF as "terminal". They have asked if it can kill them. I've been honest and said yes BUT death is the only one sure thing in life. They could die from CF, they could die in a car accident, or poof one day a blood clot shoots to the brain and game over. I honestly just try not to let them dwell. We have our sad moments but pills/vest/nebs/doctors just seems routine. We've made alot of special needs friends. One of their close friends has a brother who suffered from C/P thanks to his ignorant doctor. He couldn't talk,walk or play really. The kids counted themselves as very lucky. It can be a rough thing to talk about but very worth it in the end.

 

[mysticrose]

Sorry I have no experience with gallstones at all.

With our kids I don't refear to CF as "terminal". They have asked if it can kill them. I've been honest and said yes BUT death is the only one sure thing in life. They could die from CF, they could die in a car accident, or poof one day a blood clot shoots to the brain and game over. I honestly just try not to let them dwell. We have our sad moments but pills/vest/nebs/doctors just seems routine. We've made alot of special needs friends. One of their close friends has a brother who suffered from C/P thanks to his ignorant doctor. He couldn't talk,walk or play really. The kids counted themselves as very lucky. It can be a rough thing to talk about but very worth it in the end.

 

[mysticrose]

Sorry I have no experience with gallstones at all.

With our kids I don't refear to CF as "terminal". They have asked if it can kill them. I've been honest and said yes BUT death is the only one sure thing in life. They could die from CF, they could die in a car accident, or poof one day a blood clot shoots to the brain and game over. I honestly just try not to let them dwell. We have our sad moments but pills/vest/nebs/doctors just seems routine. We've made alot of special needs friends. One of their close friends has a brother who suffered from C/P thanks to his ignorant doctor. He couldn't talk,walk or play really. The kids counted themselves as very lucky. It can be a rough thing to talk about but very worth it in the end.

 

[mysticrose]

Sorry I have no experience with gallstones at all.
<br />
<br />With our kids I don't refear to CF as "terminal". They have asked if it can kill them. I've been honest and said yes BUT death is the only one sure thing in life. They could die from CF, they could die in a car accident, or poof one day a blood clot shoots to the brain and game over. I honestly just try not to let them dwell. We have our sad moments but pills/vest/nebs/doctors just seems routine. We've made alot of special needs friends. One of their close friends has a brother who suffered from C/P thanks to his ignorant doctor. He couldn't talk,walk or play really. The kids counted themselves as very lucky. It can be a rough thing to talk about but very worth it in the end.

 

[tigerbait]

I am 39 year old male that has been on Ursodiol for 20 years now because of elevated liver enzyme. For those looking for information on what are the benfits of Ursodiol. I can tell it bile acid that changes the composition of bile and may dissolve gallstones. Some CF patent may develop biliary cirrhosis over time as a result of gallstones. Secondary biliary cirrhosis occurs when conditions cause the common bile duct or its major branches to become either partially or totally blocked with stones on a long-term basis. Which will cause an elevation in liver enzyme bloodwork, because of the blockage in the bile ducts which causes bile to backup into the liver and will cause jaundice if this happens(found these out from personal experence). Ursodiol has been showned to "help" dissolve gallstones in CF's. To treat the cause of the jaundice. The common bile duct obstruction must be unblocked and surgery may be recommended. If anyone has any questions on my experence with liver disease caused by CF, just PM me

 

[tigerbait]

I am 39 year old male that has been on Ursodiol for 20 years now because of elevated liver enzyme. For those looking for information on what are the benfits of Ursodiol. I can tell it bile acid that changes the composition of bile and may dissolve gallstones. Some CF patent may develop biliary cirrhosis over time as a result of gallstones. Secondary biliary cirrhosis occurs when conditions cause the common bile duct or its major branches to become either partially or totally blocked with stones on a long-term basis. Which will cause an elevation in liver enzyme bloodwork, because of the blockage in the bile ducts which causes bile to backup into the liver and will cause jaundice if this happens(found these out from personal experence). Ursodiol has been showned to "help" dissolve gallstones in CF's. To treat the cause of the jaundice. The common bile duct obstruction must be unblocked and surgery may be recommended. If anyone has any questions on my experence with liver disease caused by CF, just PM me

 

[tigerbait]

I am 39 year old male that has been on Ursodiol for 20 years now because of elevated liver enzyme. For those looking for information on what are the benfits of Ursodiol. I can tell it bile acid that changes the composition of bile and may dissolve gallstones. Some CF patent may develop biliary cirrhosis over time as a result of gallstones. Secondary biliary cirrhosis occurs when conditions cause the common bile duct or its major branches to become either partially or totally blocked with stones on a long-term basis. Which will cause an elevation in liver enzyme bloodwork, because of the blockage in the bile ducts which causes bile to backup into the liver and will cause jaundice if this happens(found these out from personal experence). Ursodiol has been showned to "help" dissolve gallstones in CF's. To treat the cause of the jaundice. The common bile duct obstruction must be unblocked and surgery may be recommended. If anyone has any questions on my experence with liver disease caused by CF, just PM me

 

[tigerbait]

I am 39 year old male that has been on Ursodiol for 20 years now because of elevated liver enzyme. For those looking for information on what are the benfits of Ursodiol. I can tell it bile acid that changes the composition of bile and may dissolve gallstones. Some CF patent may develop biliary cirrhosis over time as a result of gallstones. Secondary biliary cirrhosis occurs when conditions cause the common bile duct or its major branches to become either partially or totally blocked with stones on a long-term basis. Which will cause an elevation in liver enzyme bloodwork, because of the blockage in the bile ducts which causes bile to backup into the liver and will cause jaundice if this happens(found these out from personal experence). Ursodiol has been showned to "help" dissolve gallstones in CF's. To treat the cause of the jaundice. The common bile duct obstruction must be unblocked and surgery may be recommended. If anyone has any questions on my experence with liver disease caused by CF, just PM me

 

[tigerbait]

I am 39 year old male that has been on Ursodiol for 20 years now because of elevated liver enzyme. For those looking for information on what are the benfits of Ursodiol. I can tell it bile acid that changes the composition of bile and may dissolve gallstones. Some CF patent may develop biliary cirrhosis over time as a result of gallstones. Secondary biliary cirrhosis occurs when conditions cause the common bile duct or its major branches to become either partially or totally blocked with stones on a long-term basis. Which will cause an elevation in liver enzyme bloodwork, because of the blockage in the bile ducts which causes bile to backup into the liver and will cause jaundice if this happens(found these out from personal experence). Ursodiol has been showned to "help" dissolve gallstones in CF's. To treat the cause of the jaundice. The common bile duct obstruction must be unblocked and surgery may be recommended. If anyone has any questions on my experence with liver disease caused by CF, just PM me