Pancreantitis

M

MaksNana

New member
Hi everyone,

My daughter Katie620 has alot of learning about CF, which as I also. I have just been at it a little longer than my daughter.

Makailyn did get sent home today but is far from being out of danger. They wanted to keep her at least one more day to see how she will tolerate food.She has barely had anything to eat and the 2 days that they let her eat something her lipase and amylase has started to rise, (which is not good).

They have schedule her at the CF Clinic for next friday with the GI doctors to discuss the surgery she may need . And if before then ,if she feels any pain what so ever in her stomach of nauseated she is to return to the hospital right away.

One CF doc did come in and say she could be PI and PS, to Katie. I had stepped out of the room for a moment and missed that conversation. But, DR. B, the most knowlegeable Doctor at that Clinic said that he felt she was for sure PI. And that was done by the stimulous test of the pancreas with the scope.

It has been a crazy rollercoaster , they were hoping to find gallstones etc. that would had caused the fever and made the pancreas so infected. And this is why she is not out of the woods by a long shot. Because they could not find a cause, and now this is why she will need the surgery which is suppose to be not so great! If they had found gallstones or something , they could had fixed it and the pancreas could heal. So right now it hasn't , and we could end up back in there at any min.

They know it is a CF thing but they have said it is very'uncommon'for her age.
As of today she has barely eaten anything and very tired.

We are praying that she will do okay untill the CF and GI team can put their heads together and see what needs to be done to stop this. It's very scary knowing her lipase and amylase test are still way out of range and that most likely she will be back in the hospital before next friday, and they are going to have to do the surgery.

We have been in the hospital since Xmas , we were sent home after being there for about 24 hours , and returned within a few hours . You sorda loose time and days when you havn't had any sleep for 7days.........<img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks to everyone , we do really appreciate it . I think again the big question would be, has anyone experienced Pancreatitis at such an young age without it being caused by diabeties or gallstones etc. and if they have had surgery done on their pancreas???
God Bless to all, Karla
 
M

MaksNana

New member
Hi everyone,

My daughter Katie620 has alot of learning about CF, which as I also. I have just been at it a little longer than my daughter.

Makailyn did get sent home today but is far from being out of danger. They wanted to keep her at least one more day to see how she will tolerate food.She has barely had anything to eat and the 2 days that they let her eat something her lipase and amylase has started to rise, (which is not good).

They have schedule her at the CF Clinic for next friday with the GI doctors to discuss the surgery she may need . And if before then ,if she feels any pain what so ever in her stomach of nauseated she is to return to the hospital right away.

One CF doc did come in and say she could be PI and PS, to Katie. I had stepped out of the room for a moment and missed that conversation. But, DR. B, the most knowlegeable Doctor at that Clinic said that he felt she was for sure PI. And that was done by the stimulous test of the pancreas with the scope.

It has been a crazy rollercoaster , they were hoping to find gallstones etc. that would had caused the fever and made the pancreas so infected. And this is why she is not out of the woods by a long shot. Because they could not find a cause, and now this is why she will need the surgery which is suppose to be not so great! If they had found gallstones or something , they could had fixed it and the pancreas could heal. So right now it hasn't , and we could end up back in there at any min.

They know it is a CF thing but they have said it is very'uncommon'for her age.
As of today she has barely eaten anything and very tired.

We are praying that she will do okay untill the CF and GI team can put their heads together and see what needs to be done to stop this. It's very scary knowing her lipase and amylase test are still way out of range and that most likely she will be back in the hospital before next friday, and they are going to have to do the surgery.

We have been in the hospital since Xmas , we were sent home after being there for about 24 hours , and returned within a few hours . You sorda loose time and days when you havn't had any sleep for 7days.........<img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks to everyone , we do really appreciate it . I think again the big question would be, has anyone experienced Pancreatitis at such an young age without it being caused by diabeties or gallstones etc. and if they have had surgery done on their pancreas???
God Bless to all, Karla
 
M

MaksNana

New member
Hi everyone,

My daughter Katie620 has alot of learning about CF, which as I also. I have just been at it a little longer than my daughter.

Makailyn did get sent home today but is far from being out of danger. They wanted to keep her at least one more day to see how she will tolerate food.She has barely had anything to eat and the 2 days that they let her eat something her lipase and amylase has started to rise, (which is not good).

They have schedule her at the CF Clinic for next friday with the GI doctors to discuss the surgery she may need . And if before then ,if she feels any pain what so ever in her stomach of nauseated she is to return to the hospital right away.

One CF doc did come in and say she could be PI and PS, to Katie. I had stepped out of the room for a moment and missed that conversation. But, DR. B, the most knowlegeable Doctor at that Clinic said that he felt she was for sure PI. And that was done by the stimulous test of the pancreas with the scope.

It has been a crazy rollercoaster , they were hoping to find gallstones etc. that would had caused the fever and made the pancreas so infected. And this is why she is not out of the woods by a long shot. Because they could not find a cause, and now this is why she will need the surgery which is suppose to be not so great! If they had found gallstones or something , they could had fixed it and the pancreas could heal. So right now it hasn't , and we could end up back in there at any min.

They know it is a CF thing but they have said it is very'uncommon'for her age.
As of today she has barely eaten anything and very tired.

We are praying that she will do okay untill the CF and GI team can put their heads together and see what needs to be done to stop this. It's very scary knowing her lipase and amylase test are still way out of range and that most likely she will be back in the hospital before next friday, and they are going to have to do the surgery.

We have been in the hospital since Xmas , we were sent home after being there for about 24 hours , and returned within a few hours . You sorda loose time and days when you havn't had any sleep for 7days.........<img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks to everyone , we do really appreciate it . I think again the big question would be, has anyone experienced Pancreatitis at such an young age without it being caused by diabeties or gallstones etc. and if they have had surgery done on their pancreas???
God Bless to all, Karla
 
M

MaksNana

New member
Hi everyone,

My daughter Katie620 has alot of learning about CF, which as I also. I have just been at it a little longer than my daughter.

Makailyn did get sent home today but is far from being out of danger. They wanted to keep her at least one more day to see how she will tolerate food.She has barely had anything to eat and the 2 days that they let her eat something her lipase and amylase has started to rise, (which is not good).

They have schedule her at the CF Clinic for next friday with the GI doctors to discuss the surgery she may need . And if before then ,if she feels any pain what so ever in her stomach of nauseated she is to return to the hospital right away.

One CF doc did come in and say she could be PI and PS, to Katie. I had stepped out of the room for a moment and missed that conversation. But, DR. B, the most knowlegeable Doctor at that Clinic said that he felt she was for sure PI. And that was done by the stimulous test of the pancreas with the scope.

It has been a crazy rollercoaster , they were hoping to find gallstones etc. that would had caused the fever and made the pancreas so infected. And this is why she is not out of the woods by a long shot. Because they could not find a cause, and now this is why she will need the surgery which is suppose to be not so great! If they had found gallstones or something , they could had fixed it and the pancreas could heal. So right now it hasn't , and we could end up back in there at any min.

They know it is a CF thing but they have said it is very'uncommon'for her age.
As of today she has barely eaten anything and very tired.

We are praying that she will do okay untill the CF and GI team can put their heads together and see what needs to be done to stop this. It's very scary knowing her lipase and amylase test are still way out of range and that most likely she will be back in the hospital before next friday, and they are going to have to do the surgery.

We have been in the hospital since Xmas , we were sent home after being there for about 24 hours , and returned within a few hours . You sorda loose time and days when you havn't had any sleep for 7days.........<img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks to everyone , we do really appreciate it . I think again the big question would be, has anyone experienced Pancreatitis at such an young age without it being caused by diabeties or gallstones etc. and if they have had surgery done on their pancreas???
God Bless to all, Karla
 
M

MaksNana

New member
Hi everyone,
<br />
<br /> My daughter Katie620 has alot of learning about CF, which as I also. I have just been at it a little longer than my daughter.
<br />
<br />Makailyn did get sent home today but is far from being out of danger. They wanted to keep her at least one more day to see how she will tolerate food.She has barely had anything to eat and the 2 days that they let her eat something her lipase and amylase has started to rise, (which is not good).
<br />
<br />They have schedule her at the CF Clinic for next friday with the GI doctors to discuss the surgery she may need . And if before then ,if she feels any pain what so ever in her stomach of nauseated she is to return to the hospital right away.
<br />
<br />One CF doc did come in and say she could be PI and PS, to Katie. I had stepped out of the room for a moment and missed that conversation. But, DR. B, the most knowlegeable Doctor at that Clinic said that he felt she was for sure PI. And that was done by the stimulous test of the pancreas with the scope.
<br />
<br />It has been a crazy rollercoaster , they were hoping to find gallstones etc. that would had caused the fever and made the pancreas so infected. And this is why she is not out of the woods by a long shot. Because they could not find a cause, and now this is why she will need the surgery which is suppose to be not so great! If they had found gallstones or something , they could had fixed it and the pancreas could heal. So right now it hasn't , and we could end up back in there at any min.
<br />
<br />They know it is a CF thing but they have said it is very'uncommon'for her age.
<br />As of today she has barely eaten anything and very tired.
<br />
<br />We are praying that she will do okay untill the CF and GI team can put their heads together and see what needs to be done to stop this. It's very scary knowing her lipase and amylase test are still way out of range and that most likely she will be back in the hospital before next friday, and they are going to have to do the surgery.
<br />
<br />We have been in the hospital since Xmas , we were sent home after being there for about 24 hours , and returned within a few hours . You sorda loose time and days when you havn't had any sleep for 7days.........<img src="i/expressions/face-icon-small-frown.gif" border="0">
<br />
<br />Thanks to everyone , we do really appreciate it . I think again the big question would be, has anyone experienced Pancreatitis at such an young age without it being caused by diabeties or gallstones etc. and if they have had surgery done on their pancreas???
<br />God Bless to all, Karla
 
S

Shelbyville

New member
Some Sunlight ahead

Kate:

I have the same battle going on @ 53. My first pank 4 nights @ 52 stay in the hospital was miss leading because I'm older and was diagnosed from alcohol and yea I had just came back from florida four days of you know what. However bout #2 came New Years Eve no alcohol 3 day stay. All the doc's where perplexed and said same as last 8 months apart I said no. Finally after genetic testing I carry DF508/ R117H which is predisposed for causing pank (R117H. Ii have had some near misses so I know when to just drink water nothing else. I told my Doc (Had) my pank turns on w/o cause. I have a great Doc however he raised his eye brows at that statement I believe this will be sorted out as the data base matures before your 53. My Doc said it's good the the enzyme producing part slowly remediates itself then you will just have to rely on your enzymes. BTW thats the worst pain I have ever experienced hang in there.
 
S

Shelbyville

New member
Some Sunlight ahead

Kate:

I have the same battle going on @ 53. My first pank 4 nights @ 52 stay in the hospital was miss leading because I'm older and was diagnosed from alcohol and yea I had just came back from florida four days of you know what. However bout #2 came New Years Eve no alcohol 3 day stay. All the doc's where perplexed and said same as last 8 months apart I said no. Finally after genetic testing I carry DF508/ R117H which is predisposed for causing pank (R117H. Ii have had some near misses so I know when to just drink water nothing else. I told my Doc (Had) my pank turns on w/o cause. I have a great Doc however he raised his eye brows at that statement I believe this will be sorted out as the data base matures before your 53. My Doc said it's good the the enzyme producing part slowly remediates itself then you will just have to rely on your enzymes. BTW thats the worst pain I have ever experienced hang in there.
 
S

Shelbyville

New member
Some Sunlight ahead

Kate:

I have the same battle going on @ 53. My first pank 4 nights @ 52 stay in the hospital was miss leading because I'm older and was diagnosed from alcohol and yea I had just came back from florida four days of you know what. However bout #2 came New Years Eve no alcohol 3 day stay. All the doc's where perplexed and said same as last 8 months apart I said no. Finally after genetic testing I carry DF508/ R117H which is predisposed for causing pank (R117H. Ii have had some near misses so I know when to just drink water nothing else. I told my Doc (Had) my pank turns on w/o cause. I have a great Doc however he raised his eye brows at that statement I believe this will be sorted out as the data base matures before your 53. My Doc said it's good the the enzyme producing part slowly remediates itself then you will just have to rely on your enzymes. BTW thats the worst pain I have ever experienced hang in there.
 
S

Shelbyville

New member
Some Sunlight ahead

Kate:

I have the same battle going on @ 53. My first pank 4 nights @ 52 stay in the hospital was miss leading because I'm older and was diagnosed from alcohol and yea I had just came back from florida four days of you know what. However bout #2 came New Years Eve no alcohol 3 day stay. All the doc's where perplexed and said same as last 8 months apart I said no. Finally after genetic testing I carry DF508/ R117H which is predisposed for causing pank (R117H. Ii have had some near misses so I know when to just drink water nothing else. I told my Doc (Had) my pank turns on w/o cause. I have a great Doc however he raised his eye brows at that statement I believe this will be sorted out as the data base matures before your 53. My Doc said it's good the the enzyme producing part slowly remediates itself then you will just have to rely on your enzymes. BTW thats the worst pain I have ever experienced hang in there.
 
S

Shelbyville

New member
Some Sunlight ahead

Kate:
<br />
<br />I have the same battle going on @ 53. My first pank 4 nights @ 52 stay in the hospital was miss leading because I'm older and was diagnosed from alcohol and yea I had just came back from florida four days of you know what. However bout #2 came New Years Eve no alcohol 3 day stay. All the doc's where perplexed and said same as last 8 months apart I said no. Finally after genetic testing I carry DF508/ R117H which is predisposed for causing pank (R117H. Ii have had some near misses so I know when to just drink water nothing else. I told my Doc (Had) my pank turns on w/o cause. I have a great Doc however he raised his eye brows at that statement I believe this will be sorted out as the data base matures before your 53. My Doc said it's good the the enzyme producing part slowly remediates itself then you will just have to rely on your enzymes. BTW thats the worst pain I have ever experienced hang in there.
 
M

MaksNana

New member
Hi Harriett, This is Karla.

I read your highlighted imfo re: The stimulus test and the Lipase test. Both are very scary. On her stimulus test they did it with a scope and she was put to sleep, they were looking for other things as well. Which showed her stomach and esophagus very inflamed, along with her PI numbers being way abnormal.

What scares me the most I have always said they are missing something with Makailyn, which certainly proves to be right. I feel this is not the first time she has had problems with her pancreas but they would not listen to us!
Last year alot of problems started with severe pain in her stomach, and this pass summer she had a bad bout of vomiting that looked the same as this and ran 104 temp and the doctor said it was probly a stomach bug don't worry about bringing her in. I felt like she was going to die in my arms that day. So this time I was persistent , because I knew there was something majorly wrong with her !

Thankyou so much for the articles,,,,,,, now we need to do alot of praying.......
I always look forward for your imfo when someone has a problem, so I really am thankfull to you.

I am wondering , actually going crazy to know if a child has had these problems, because all you hear is about adults, and this is something that the doctors are baffled with also..

As of now she is very tired , not eating much at all .

God Bless Everyone, and may he please give us all wisdom,,,,,,,,,,,,,,,Karla
 
M

MaksNana

New member
Hi Harriett, This is Karla.

I read your highlighted imfo re: The stimulus test and the Lipase test. Both are very scary. On her stimulus test they did it with a scope and she was put to sleep, they were looking for other things as well. Which showed her stomach and esophagus very inflamed, along with her PI numbers being way abnormal.

What scares me the most I have always said they are missing something with Makailyn, which certainly proves to be right. I feel this is not the first time she has had problems with her pancreas but they would not listen to us!
Last year alot of problems started with severe pain in her stomach, and this pass summer she had a bad bout of vomiting that looked the same as this and ran 104 temp and the doctor said it was probly a stomach bug don't worry about bringing her in. I felt like she was going to die in my arms that day. So this time I was persistent , because I knew there was something majorly wrong with her !

Thankyou so much for the articles,,,,,,, now we need to do alot of praying.......
I always look forward for your imfo when someone has a problem, so I really am thankfull to you.

I am wondering , actually going crazy to know if a child has had these problems, because all you hear is about adults, and this is something that the doctors are baffled with also..

As of now she is very tired , not eating much at all .

God Bless Everyone, and may he please give us all wisdom,,,,,,,,,,,,,,,Karla
 
M

MaksNana

New member
Hi Harriett, This is Karla.

I read your highlighted imfo re: The stimulus test and the Lipase test. Both are very scary. On her stimulus test they did it with a scope and she was put to sleep, they were looking for other things as well. Which showed her stomach and esophagus very inflamed, along with her PI numbers being way abnormal.

What scares me the most I have always said they are missing something with Makailyn, which certainly proves to be right. I feel this is not the first time she has had problems with her pancreas but they would not listen to us!
Last year alot of problems started with severe pain in her stomach, and this pass summer she had a bad bout of vomiting that looked the same as this and ran 104 temp and the doctor said it was probly a stomach bug don't worry about bringing her in. I felt like she was going to die in my arms that day. So this time I was persistent , because I knew there was something majorly wrong with her !

Thankyou so much for the articles,,,,,,, now we need to do alot of praying.......
I always look forward for your imfo when someone has a problem, so I really am thankfull to you.

I am wondering , actually going crazy to know if a child has had these problems, because all you hear is about adults, and this is something that the doctors are baffled with also..

As of now she is very tired , not eating much at all .

God Bless Everyone, and may he please give us all wisdom,,,,,,,,,,,,,,,Karla
 
M

MaksNana

New member
Hi Harriett, This is Karla.

I read your highlighted imfo re: The stimulus test and the Lipase test. Both are very scary. On her stimulus test they did it with a scope and she was put to sleep, they were looking for other things as well. Which showed her stomach and esophagus very inflamed, along with her PI numbers being way abnormal.

What scares me the most I have always said they are missing something with Makailyn, which certainly proves to be right. I feel this is not the first time she has had problems with her pancreas but they would not listen to us!
Last year alot of problems started with severe pain in her stomach, and this pass summer she had a bad bout of vomiting that looked the same as this and ran 104 temp and the doctor said it was probly a stomach bug don't worry about bringing her in. I felt like she was going to die in my arms that day. So this time I was persistent , because I knew there was something majorly wrong with her !

Thankyou so much for the articles,,,,,,, now we need to do alot of praying.......
I always look forward for your imfo when someone has a problem, so I really am thankfull to you.

I am wondering , actually going crazy to know if a child has had these problems, because all you hear is about adults, and this is something that the doctors are baffled with also..

As of now she is very tired , not eating much at all .

God Bless Everyone, and may he please give us all wisdom,,,,,,,,,,,,,,,Karla
 
M

MaksNana

New member
Hi Harriett, This is Karla.
<br />
<br />I read your highlighted imfo re: The stimulus test and the Lipase test. Both are very scary. On her stimulus test they did it with a scope and she was put to sleep, they were looking for other things as well. Which showed her stomach and esophagus very inflamed, along with her PI numbers being way abnormal.
<br />
<br />What scares me the most I have always said they are missing something with Makailyn, which certainly proves to be right. I feel this is not the first time she has had problems with her pancreas but they would not listen to us!
<br />Last year alot of problems started with severe pain in her stomach, and this pass summer she had a bad bout of vomiting that looked the same as this and ran 104 temp and the doctor said it was probly a stomach bug don't worry about bringing her in. I felt like she was going to die in my arms that day. So this time I was persistent , because I knew there was something majorly wrong with her !
<br />
<br />Thankyou so much for the articles,,,,,,, now we need to do alot of praying.......
<br />I always look forward for your imfo when someone has a problem, so I really am thankfull to you.
<br />
<br />I am wondering , actually going crazy to know if a child has had these problems, because all you hear is about adults, and this is something that the doctors are baffled with also..
<br />
<br />As of now she is very tired , not eating much at all .
<br />
<br />God Bless Everyone, and may he please give us all wisdom,,,,,,,,,,,,,,,Karla
 
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