DON'T KNOW IF IT IS CF OR NOT. PLEASE SEND ME YOUR THOUGHTS.

N

NAVCHAPDOC

New member
Hello and thank all of you in advance. I am the father of a 2 year ols little girl that has had 2 cases of pancreatitis in the last 3 months. The first bout ended her in the hospital for 5 days with enzymes of Amylase = 4100 and Lipase of 3000. She was very sick but it all came on within a few hours. Every scan and MRICP came back negative. They never had an exact answer other than they suspected it was viral. The second time her enzymes were Amylase = 1300 and Lipase= 702. She did not end up in the hospital this time. She was not as sick as the first time but sick none the less. We have seen 2 different ped GI specialists and they have no answers. The second specialist has ordered several stool studies including a 72 hour fecal fat and some ova and parasite studies as well. He has also ordered the CF DNA blood draw because they could not collect enough sweat to complete the "sweat test" Those results won't be back for a week. Here is the thing, for as far back as we can remember, her stools have never really been "formed" for the most part they are runny and very foul smelling with traces of what looks like mucus. This bit of info is what got the Doctors attention in investigating CF..However, she has NEVER has any pulmonary issue that required hospitalization. She has only had 3 or 4 upper respiratory infections which her 5 year old brother shared with her. They were quickly resolved with antibiotics. Her energy level is very high, she is gaining weight, and very bright. My wife and I are scared to death of what this could mean but want to face it head on. Having said that, is there any of you out there who have had similar issues with your kids that have gone on to be diagnosed with CF or are we way off based on the symptoms she has? I am going to post this in a few boards so please excuse the re-posts. Thanks for all the input you can provide us with. Anything is appreciated and WELCO
 
N

NAVCHAPDOC

New member
Hello and thank all of you in advance. I am the father of a 2 year ols little girl that has had 2 cases of pancreatitis in the last 3 months. The first bout ended her in the hospital for 5 days with enzymes of Amylase = 4100 and Lipase of 3000. She was very sick but it all came on within a few hours. Every scan and MRICP came back negative. They never had an exact answer other than they suspected it was viral. The second time her enzymes were Amylase = 1300 and Lipase= 702. She did not end up in the hospital this time. She was not as sick as the first time but sick none the less. We have seen 2 different ped GI specialists and they have no answers. The second specialist has ordered several stool studies including a 72 hour fecal fat and some ova and parasite studies as well. He has also ordered the CF DNA blood draw because they could not collect enough sweat to complete the "sweat test" Those results won't be back for a week. Here is the thing, for as far back as we can remember, her stools have never really been "formed" for the most part they are runny and very foul smelling with traces of what looks like mucus. This bit of info is what got the Doctors attention in investigating CF..However, she has NEVER has any pulmonary issue that required hospitalization. She has only had 3 or 4 upper respiratory infections which her 5 year old brother shared with her. They were quickly resolved with antibiotics. Her energy level is very high, she is gaining weight, and very bright. My wife and I are scared to death of what this could mean but want to face it head on. Having said that, is there any of you out there who have had similar issues with your kids that have gone on to be diagnosed with CF or are we way off based on the symptoms she has? I am going to post this in a few boards so please excuse the re-posts. Thanks for all the input you can provide us with. Anything is appreciated and WELCO
 
N

NAVCHAPDOC

New member
Hello and thank all of you in advance. I am the father of a 2 year ols little girl that has had 2 cases of pancreatitis in the last 3 months. The first bout ended her in the hospital for 5 days with enzymes of Amylase = 4100 and Lipase of 3000. She was very sick but it all came on within a few hours. Every scan and MRICP came back negative. They never had an exact answer other than they suspected it was viral. The second time her enzymes were Amylase = 1300 and Lipase= 702. She did not end up in the hospital this time. She was not as sick as the first time but sick none the less. We have seen 2 different ped GI specialists and they have no answers. The second specialist has ordered several stool studies including a 72 hour fecal fat and some ova and parasite studies as well. He has also ordered the CF DNA blood draw because they could not collect enough sweat to complete the "sweat test" Those results won't be back for a week. Here is the thing, for as far back as we can remember, her stools have never really been "formed" for the most part they are runny and very foul smelling with traces of what looks like mucus. This bit of info is what got the Doctors attention in investigating CF..However, she has NEVER has any pulmonary issue that required hospitalization. She has only had 3 or 4 upper respiratory infections which her 5 year old brother shared with her. They were quickly resolved with antibiotics. Her energy level is very high, she is gaining weight, and very bright. My wife and I are scared to death of what this could mean but want to face it head on. Having said that, is there any of you out there who have had similar issues with your kids that have gone on to be diagnosed with CF or are we way off based on the symptoms she has? I am going to post this in a few boards so please excuse the re-posts. Thanks for all the input you can provide us with. Anything is appreciated and WELCO
 
R

Ratatosk

Administrator
Staff member
Based on the gi symptoms, it very well could be CF. Our child mainly has digestive issues. Needs to take digestive enzymes as he's pancreatic insufficient. His sweat test results were normal, but a basic genetic blood panel from mayo indicated CF.

With DS, you wouldn't really know he has cf -- he's active, fairly smart, doesn't cough or look "sickly". He's just a normal 7 year old who was diagnosed as a baby wcf.
 
R

Ratatosk

Administrator
Staff member
Based on the gi symptoms, it very well could be CF. Our child mainly has digestive issues. Needs to take digestive enzymes as he's pancreatic insufficient. His sweat test results were normal, but a basic genetic blood panel from mayo indicated CF.

With DS, you wouldn't really know he has cf -- he's active, fairly smart, doesn't cough or look "sickly". He's just a normal 7 year old who was diagnosed as a baby wcf.
 
R

Ratatosk

Administrator
Staff member
Based on the gi symptoms, it very well could be CF. Our child mainly has digestive issues. Needs to take digestive enzymes as he's pancreatic insufficient. His sweat test results were normal, but a basic genetic blood panel from mayo indicated CF.
<br />
<br />With DS, you wouldn't really know he has cf -- he's active, fairly smart, doesn't cough or look "sickly". He's just a normal 7 year old who was diagnosed as a baby wcf.
 
J

JORDYSMOM

New member
I replied in the Diagnosis section. I'm glad you posted here, because this forum gets more traffic.
<br />
<br />Stacey
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NAVCHAPDOC</b></i>

However, she has NEVER has any pulmonary issue that required hospitalization. She has only had 3 or 4 upper respiratory infections which her 5 year old brother shared with her. They were quickly resolved with antibiotics. Her energy level is very high, she is gaining weight, and very bright. </end quote></div>

Our daughter was age 3 upon diagnosis. No hospitalizations and no trouble with URI's. Pediatrician finally consulted a Ped GI about her constant stomach pain and malabsorption symptoms and that's when she was finally tested. They wouldn't ever classify her as failure to thrive because she "looked too healthy". Although she gained weight, her growth "curve" clearly stalled out. By the time the poor kid was diagnosed her energy level was non-existent. She and her sister are the brighest kids ever (what else would I say!!). Seriously though, I wish you well and hope you get some answers. <img src="i/expressions/sun.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NAVCHAPDOC</b></i>

However, she has NEVER has any pulmonary issue that required hospitalization. She has only had 3 or 4 upper respiratory infections which her 5 year old brother shared with her. They were quickly resolved with antibiotics. Her energy level is very high, she is gaining weight, and very bright. </end quote>

Our daughter was age 3 upon diagnosis. No hospitalizations and no trouble with URI's. Pediatrician finally consulted a Ped GI about her constant stomach pain and malabsorption symptoms and that's when she was finally tested. They wouldn't ever classify her as failure to thrive because she "looked too healthy". Although she gained weight, her growth "curve" clearly stalled out. By the time the poor kid was diagnosed her energy level was non-existent. She and her sister are the brighest kids ever (what else would I say!!). Seriously though, I wish you well and hope you get some answers. <img src="i/expressions/sun.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NAVCHAPDOC</b></i>
<br />
<br />However, she has NEVER has any pulmonary issue that required hospitalization. She has only had 3 or 4 upper respiratory infections which her 5 year old brother shared with her. They were quickly resolved with antibiotics. Her energy level is very high, she is gaining weight, and very bright. </end quote>
<br />
<br />Our daughter was age 3 upon diagnosis. No hospitalizations and no trouble with URI's. Pediatrician finally consulted a Ped GI about her constant stomach pain and malabsorption symptoms and that's when she was finally tested. They wouldn't ever classify her as failure to thrive because she "looked too healthy". Although she gained weight, her growth "curve" clearly stalled out. By the time the poor kid was diagnosed her energy level was non-existent. She and her sister are the brighest kids ever (what else would I say!!). Seriously though, I wish you well and hope you get some answers. <img src="i/expressions/sun.gif" border="0">
 
J

jmom

New member
In case this helps...my daughter has had a positive test for fat malabsorption, yet she looks like the poster child for healthy weight (trim, but not too skinny). The thing is, she eats a ton of food. She too, like your daughter, has never had any respiratory problems. We do not have a CF diagnosis as of this point, but she has had foamy, floating, suspicious stools since she was 2 (7 years old now) as well as other complicated GI issues such as bleeding. Years ago the doctors suggested ova parasite tests for her foamy stool problems, but after about 5-6 of them (no joke!) we decided parasites was probably out of question. We were pursuing genetic testing but insurance turned down authorization. I guess I need to file an appeal. Since our daughter's cases sound somewhat similar, I thought our scenario might be of help to you. Sounds like you've been through some scary experiences! I feel for you!!!
 
J

jmom

New member
In case this helps...my daughter has had a positive test for fat malabsorption, yet she looks like the poster child for healthy weight (trim, but not too skinny). The thing is, she eats a ton of food. She too, like your daughter, has never had any respiratory problems. We do not have a CF diagnosis as of this point, but she has had foamy, floating, suspicious stools since she was 2 (7 years old now) as well as other complicated GI issues such as bleeding. Years ago the doctors suggested ova parasite tests for her foamy stool problems, but after about 5-6 of them (no joke!) we decided parasites was probably out of question. We were pursuing genetic testing but insurance turned down authorization. I guess I need to file an appeal. Since our daughter's cases sound somewhat similar, I thought our scenario might be of help to you. Sounds like you've been through some scary experiences! I feel for you!!!
 
J

jmom

New member
In case this helps...my daughter has had a positive test for fat malabsorption, yet she looks like the poster child for healthy weight (trim, but not too skinny). The thing is, she eats a ton of food. She too, like your daughter, has never had any respiratory problems. We do not have a CF diagnosis as of this point, but she has had foamy, floating, suspicious stools since she was 2 (7 years old now) as well as other complicated GI issues such as bleeding. Years ago the doctors suggested ova parasite tests for her foamy stool problems, but after about 5-6 of them (no joke!) we decided parasites was probably out of question. We were pursuing genetic testing but insurance turned down authorization. I guess I need to file an appeal. Since our daughter's cases sound somewhat similar, I thought our scenario might be of help to you. Sounds like you've been through some scary experiences! I feel for you!!!
 
S

SarahProcter

Guest
It is completely plausible to have CF and have not had any pulmonary symptoms by the age of 2. My almost-2-year-old daughter has a confirmed genetic diagnosis of CF (DF508 + S1159P mutations) and has had no symptoms at all ever. No problems with her stools, she's pancreatic sufficient, no lung disease, no coughing/wheezing, she's growing well, she's thriving, she's active and healthy. CF is a spectrum sort of disease - not everyone presents the same symptoms, or presents them the same way. And, it's a progressive disease - so most kids with CF are born healthy and then one or more systems in the body go downhill from there, but which systems when and how varies widely. There are people with CF who are not diagnosed until adulthood because they are not sick as children.

I hope they figure out what's up with your daughter and can help her get better ASAP!
 
S

SarahProcter

Guest
It is completely plausible to have CF and have not had any pulmonary symptoms by the age of 2. My almost-2-year-old daughter has a confirmed genetic diagnosis of CF (DF508 + S1159P mutations) and has had no symptoms at all ever. No problems with her stools, she's pancreatic sufficient, no lung disease, no coughing/wheezing, she's growing well, she's thriving, she's active and healthy. CF is a spectrum sort of disease - not everyone presents the same symptoms, or presents them the same way. And, it's a progressive disease - so most kids with CF are born healthy and then one or more systems in the body go downhill from there, but which systems when and how varies widely. There are people with CF who are not diagnosed until adulthood because they are not sick as children.

I hope they figure out what's up with your daughter and can help her get better ASAP!
 
S

SarahProcter

Guest
It is completely plausible to have CF and have not had any pulmonary symptoms by the age of 2. My almost-2-year-old daughter has a confirmed genetic diagnosis of CF (DF508 + S1159P mutations) and has had no symptoms at all ever. No problems with her stools, she's pancreatic sufficient, no lung disease, no coughing/wheezing, she's growing well, she's thriving, she's active and healthy. CF is a spectrum sort of disease - not everyone presents the same symptoms, or presents them the same way. And, it's a progressive disease - so most kids with CF are born healthy and then one or more systems in the body go downhill from there, but which systems when and how varies widely. There are people with CF who are not diagnosed until adulthood because they are not sick as children.
<br />
<br />I hope they figure out what's up with your daughter and can help her get better ASAP!
 
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