Please help,scared to death...

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lorrielou25

New member
Hello my name is Lori, for 5 months I have been living a nightmare with my 14 month old son. At 10 months during a check-up for an ear infection we noticed his weight was the same as the previous month, so the doctor ran a basic blood panel, and told us to try and put some weight on him. We were just starting solids and he was a hater of baby food so we were not worried at first. We were able to put on a pound in about 6 weeks, but he kept getting colds and his weight fluxuated. He has had repeated ear infections, and one small bout with Bronchitis, but he is so skinny almost 15 months and 21 pounds. The doctor has seemed encouraged with the continued weight gain, I on the other hand see how much food he eats, and think he is still too thin. He continues to grow in height and slowly with weight but then there are his stools. We had constipation problems at first, the high fat diet the Dr said. Now he just has large bm's every evening to every other day. I have taken to floating them in the toilet, sometimes they float other times not. I sometimes think his forehead tastes salty, more so than my other children who are all adopted. Everyone thinks I am crazy, they keep telling me to calm down, I finally convinced my doctor to check for Cf and celiac disease. Am I crazy here? I know he is gaining weight, but he just does not look right to me. Do kids with pancreatic problems, stop gaining? What about the occasional salty taste on the forehead? Are the bowel mmovements usually frequent? I am sorry this is so long but I am miserable and need some answers... Thank You
Lori
 
L

lorrielou25

New member
Hello my name is Lori, for 5 months I have been living a nightmare with my 14 month old son. At 10 months during a check-up for an ear infection we noticed his weight was the same as the previous month, so the doctor ran a basic blood panel, and told us to try and put some weight on him. We were just starting solids and he was a hater of baby food so we were not worried at first. We were able to put on a pound in about 6 weeks, but he kept getting colds and his weight fluxuated. He has had repeated ear infections, and one small bout with Bronchitis, but he is so skinny almost 15 months and 21 pounds. The doctor has seemed encouraged with the continued weight gain, I on the other hand see how much food he eats, and think he is still too thin. He continues to grow in height and slowly with weight but then there are his stools. We had constipation problems at first, the high fat diet the Dr said. Now he just has large bm's every evening to every other day. I have taken to floating them in the toilet, sometimes they float other times not. I sometimes think his forehead tastes salty, more so than my other children who are all adopted. Everyone thinks I am crazy, they keep telling me to calm down, I finally convinced my doctor to check for Cf and celiac disease. Am I crazy here? I know he is gaining weight, but he just does not look right to me. Do kids with pancreatic problems, stop gaining? What about the occasional salty taste on the forehead? Are the bowel mmovements usually frequent? I am sorry this is so long but I am miserable and need some answers... Thank You
Lori
 
L

lorrielou25

New member
Hello my name is Lori, for 5 months I have been living a nightmare with my 14 month old son. At 10 months during a check-up for an ear infection we noticed his weight was the same as the previous month, so the doctor ran a basic blood panel, and told us to try and put some weight on him. We were just starting solids and he was a hater of baby food so we were not worried at first. We were able to put on a pound in about 6 weeks, but he kept getting colds and his weight fluxuated. He has had repeated ear infections, and one small bout with Bronchitis, but he is so skinny almost 15 months and 21 pounds. The doctor has seemed encouraged with the continued weight gain, I on the other hand see how much food he eats, and think he is still too thin. He continues to grow in height and slowly with weight but then there are his stools. We had constipation problems at first, the high fat diet the Dr said. Now he just has large bm's every evening to every other day. I have taken to floating them in the toilet, sometimes they float other times not. I sometimes think his forehead tastes salty, more so than my other children who are all adopted. Everyone thinks I am crazy, they keep telling me to calm down, I finally convinced my doctor to check for Cf and celiac disease. Am I crazy here? I know he is gaining weight, but he just does not look right to me. Do kids with pancreatic problems, stop gaining? What about the occasional salty taste on the forehead? Are the bowel mmovements usually frequent? I am sorry this is so long but I am miserable and need some answers... Thank You
Lori
 
S

Samsmom

New member
Hi Lori. First of all let me say that if you feel there is somthing wrong with your child then trust that feeling and try to find answers. In your post it said you had convinced the Dr. to test of cf and celiac. Did you get and results on those? What kind of cf test did the Dr. do? (sweat test, genetic test????) If you do get tested for cf I recommend an Ambry full panel genetic test as they test for all known gene mutations, not just the most common. If the Dr. orders a sweat test try to have it done at a cf accredited hospital for more accuracy. The salty taste on the skin is an indicator of cf and kids with pancretic insufficiency do not stop gaining all together, but they gain slowly and most of what they eat goes through them and comes out as a bulky, greasy stool. Some have bowl movements frequently and others not so often. The symptoms you have mentioned could be cf, but there is no way to know for sure without tests. All cf does not present the same way either. My daughter was dx at age 12 and has very few lung problems, but a lot of digestive issues. Every child is unique and so the symptoms will be too, but the genetics will tell the true story. I'm sorry that you are struggling right now for answers, but you are obvioulsy a good parent and a concerned mom. I wish you lots of luck in the search for answers and if it is cf you have found this forum and it is the best place to be for support. Come back and update if you get tests/results. I'll keep you in my thoughts and prayers.
 
S

Samsmom

New member
Hi Lori. First of all let me say that if you feel there is somthing wrong with your child then trust that feeling and try to find answers. In your post it said you had convinced the Dr. to test of cf and celiac. Did you get and results on those? What kind of cf test did the Dr. do? (sweat test, genetic test????) If you do get tested for cf I recommend an Ambry full panel genetic test as they test for all known gene mutations, not just the most common. If the Dr. orders a sweat test try to have it done at a cf accredited hospital for more accuracy. The salty taste on the skin is an indicator of cf and kids with pancretic insufficiency do not stop gaining all together, but they gain slowly and most of what they eat goes through them and comes out as a bulky, greasy stool. Some have bowl movements frequently and others not so often. The symptoms you have mentioned could be cf, but there is no way to know for sure without tests. All cf does not present the same way either. My daughter was dx at age 12 and has very few lung problems, but a lot of digestive issues. Every child is unique and so the symptoms will be too, but the genetics will tell the true story. I'm sorry that you are struggling right now for answers, but you are obvioulsy a good parent and a concerned mom. I wish you lots of luck in the search for answers and if it is cf you have found this forum and it is the best place to be for support. Come back and update if you get tests/results. I'll keep you in my thoughts and prayers.
 
S

Samsmom

New member
Hi Lori. First of all let me say that if you feel there is somthing wrong with your child then trust that feeling and try to find answers. In your post it said you had convinced the Dr. to test of cf and celiac. Did you get and results on those? What kind of cf test did the Dr. do? (sweat test, genetic test????) If you do get tested for cf I recommend an Ambry full panel genetic test as they test for all known gene mutations, not just the most common. If the Dr. orders a sweat test try to have it done at a cf accredited hospital for more accuracy. The salty taste on the skin is an indicator of cf and kids with pancretic insufficiency do not stop gaining all together, but they gain slowly and most of what they eat goes through them and comes out as a bulky, greasy stool. Some have bowl movements frequently and others not so often. The symptoms you have mentioned could be cf, but there is no way to know for sure without tests. All cf does not present the same way either. My daughter was dx at age 12 and has very few lung problems, but a lot of digestive issues. Every child is unique and so the symptoms will be too, but the genetics will tell the true story. I'm sorry that you are struggling right now for answers, but you are obvioulsy a good parent and a concerned mom. I wish you lots of luck in the search for answers and if it is cf you have found this forum and it is the best place to be for support. Come back and update if you get tests/results. I'll keep you in my thoughts and prayers.
 
M

Mommafirst

Guest
I'm so sorry Lori. Unfortunately, all too many of us around here have lived a similar nightmare. All I can say is that you ARE NOT crazy. Clearly you are a good, loving mom who knows how to trust your instinct and to push the doctors. These are qualities that will take you far regardless of whether your son is diagnosed with CF or not. It certainly sounds like pancreatic insufficiency to me, which as you already know is a sign of both CF and Celiacs. If I were you, I'd start with a CF sweat test, as it is sooo much easier on the kid than celiac's diagnosis. If the sweat test comes back even questionable (anything higher than 30, don't let them tell you if its under 60 its fine) I'd push for further testing.<br>
<br>
I know your agony, and the one thing I can say is that the not knowing is WAY worse than knowing. Once you have a name for what you are fighting and a strategy for how to help your son, it will be a "relief" of sorts (if something this tough can ever be a real relief).
 
M

Mommafirst

Guest
I'm so sorry Lori. Unfortunately, all too many of us around here have lived a similar nightmare. All I can say is that you ARE NOT crazy. Clearly you are a good, loving mom who knows how to trust your instinct and to push the doctors. These are qualities that will take you far regardless of whether your son is diagnosed with CF or not. It certainly sounds like pancreatic insufficiency to me, which as you already know is a sign of both CF and Celiacs. If I were you, I'd start with a CF sweat test, as it is sooo much easier on the kid than celiac's diagnosis. If the sweat test comes back even questionable (anything higher than 30, don't let them tell you if its under 60 its fine) I'd push for further testing.<br>
<br>
I know your agony, and the one thing I can say is that the not knowing is WAY worse than knowing. Once you have a name for what you are fighting and a strategy for how to help your son, it will be a "relief" of sorts (if something this tough can ever be a real relief).
 
M

Mommafirst

Guest
I'm so sorry Lori. Unfortunately, all too many of us around here have lived a similar nightmare. All I can say is that you ARE NOT crazy. Clearly you are a good, loving mom who knows how to trust your instinct and to push the doctors. These are qualities that will take you far regardless of whether your son is diagnosed with CF or not. It certainly sounds like pancreatic insufficiency to me, which as you already know is a sign of both CF and Celiacs. If I were you, I'd start with a CF sweat test, as it is sooo much easier on the kid than celiac's diagnosis. If the sweat test comes back even questionable (anything higher than 30, don't let them tell you if its under 60 its fine) I'd push for further testing.<br>
<br>
I know your agony, and the one thing I can say is that the not knowing is WAY worse than knowing. Once you have a name for what you are fighting and a strategy for how to help your son, it will be a "relief" of sorts (if something this tough can ever be a real relief).
 
L

lorrielou25

New member
Thank you for the quick response, this whole thing is just so horrible. I can't eat, I can't sleep, I am just consumed with worry. I just don't know if I can handle this, I know that must sound weak to you people. I adopted 4 disabled children, I never thought I would would be facing this with my only biological child. To answer the question about the testing, the doctor has ordered both, the celiac test, which is today, and we are waiting to hear from the cf center for the date of the salt test. I have already decided that unless the numbers are extremely low, 10 or so, I still will demand, the Ambry. I think the most frustraiting thing is everyone is just tolerating my requests, the doc, my husband, it is so frustrating, because I feel strongly that something is wrong with my boy. I think my husband just wants to stay possitive, he keeps saying, " his stools are not greasy, and he is still gaining weight," He would rather just keep an eye on him, but I have to know. If there is anything wrong, than there must be something I can do to help him, and I will die of grief waiting around without answers.
 
L

lorrielou25

New member
Thank you for the quick response, this whole thing is just so horrible. I can't eat, I can't sleep, I am just consumed with worry. I just don't know if I can handle this, I know that must sound weak to you people. I adopted 4 disabled children, I never thought I would would be facing this with my only biological child. To answer the question about the testing, the doctor has ordered both, the celiac test, which is today, and we are waiting to hear from the cf center for the date of the salt test. I have already decided that unless the numbers are extremely low, 10 or so, I still will demand, the Ambry. I think the most frustraiting thing is everyone is just tolerating my requests, the doc, my husband, it is so frustrating, because I feel strongly that something is wrong with my boy. I think my husband just wants to stay possitive, he keeps saying, " his stools are not greasy, and he is still gaining weight," He would rather just keep an eye on him, but I have to know. If there is anything wrong, than there must be something I can do to help him, and I will die of grief waiting around without answers.
 
L

lorrielou25

New member
Thank you for the quick response, this whole thing is just so horrible. I can't eat, I can't sleep, I am just consumed with worry. I just don't know if I can handle this, I know that must sound weak to you people. I adopted 4 disabled children, I never thought I would would be facing this with my only biological child. To answer the question about the testing, the doctor has ordered both, the celiac test, which is today, and we are waiting to hear from the cf center for the date of the salt test. I have already decided that unless the numbers are extremely low, 10 or so, I still will demand, the Ambry. I think the most frustraiting thing is everyone is just tolerating my requests, the doc, my husband, it is so frustrating, because I feel strongly that something is wrong with my boy. I think my husband just wants to stay possitive, he keeps saying, " his stools are not greasy, and he is still gaining weight," He would rather just keep an eye on him, but I have to know. If there is anything wrong, than there must be something I can do to help him, and I will die of grief waiting around without answers.
 
L

LouLou

New member
Your inclinations are right. If it is cf a diagnosis and early, preventative treatment is best. I wasn't diagnosed until I was 30 months old because everyone (except my mother) kept thinking positively and dwelling on the fact that I was chubby and healthy looking dispite my wicked recuring respiratory infections. It's a good thing she was persistant. Keep up the good work!

Oh and by the way, I am pancreatic insufficient. The only reason I was so "healthy" looking was because my mom fed me around the clock. She figured if I was hungry I needed to eat...
 
L

LouLou

New member
Your inclinations are right. If it is cf a diagnosis and early, preventative treatment is best. I wasn't diagnosed until I was 30 months old because everyone (except my mother) kept thinking positively and dwelling on the fact that I was chubby and healthy looking dispite my wicked recuring respiratory infections. It's a good thing she was persistant. Keep up the good work!

Oh and by the way, I am pancreatic insufficient. The only reason I was so "healthy" looking was because my mom fed me around the clock. She figured if I was hungry I needed to eat...
 
L

LouLou

New member
Your inclinations are right. If it is cf a diagnosis and early, preventative treatment is best. I wasn't diagnosed until I was 30 months old because everyone (except my mother) kept thinking positively and dwelling on the fact that I was chubby and healthy looking dispite my wicked recuring respiratory infections. It's a good thing she was persistant. Keep up the good work!

Oh and by the way, I am pancreatic insufficient. The only reason I was so "healthy" looking was because my mom fed me around the clock. She figured if I was hungry I needed to eat...
 
M

Mommy2Alysa

New member
LorrieLou25,

I went through a similar thing with my daughter. Until she was about 18 months old she was puking what seemed like her entire body weight at least 3-4 times a day. She wasnt gaining weight adn we were constantly at the doctors and emergency room looking for answers.

Long story short, after finding out Alysa had pneumonia that wouldnt go away after a month of treatment our doctor decided to do a sweat test for CF thinking it would come back negative but it didnt. She was diagnosed last November and as devastated as my boyfriedn (now husband) and I were at the time we were also alittle relieved to know that we WERENT crazy and we were good parents for bringing her in so much and houding teh nurses, doctors adn everyone else to "fix our baby, there is something wrong with her." And finally we had a name and a treatment plan to help our daughter. Since november she has gained weight (went from 10th percentile to 50th) and besides a few hospitals stays for a few weeks she is doing awesome. You wouldnt even know she had CF if you looked at her.

I wouldnt stress too much until you get the test results back but if your diagnoses is the same as ours then just research as much as you can, and get support from the other families in here and hope that the research (which has improved leaps and bounds in the past few years) keeps going on the pace it is and just enjoy your son.

Our theory is: there is nothing we can do but love our daughter (currently expecting another CF child in September) and always keep in the back of your head that he could have been diagnosed with someone far worse.

I hope you get the answers you seek and wish you all the best.
 
M

Mommy2Alysa

New member
LorrieLou25,

I went through a similar thing with my daughter. Until she was about 18 months old she was puking what seemed like her entire body weight at least 3-4 times a day. She wasnt gaining weight adn we were constantly at the doctors and emergency room looking for answers.

Long story short, after finding out Alysa had pneumonia that wouldnt go away after a month of treatment our doctor decided to do a sweat test for CF thinking it would come back negative but it didnt. She was diagnosed last November and as devastated as my boyfriedn (now husband) and I were at the time we were also alittle relieved to know that we WERENT crazy and we were good parents for bringing her in so much and houding teh nurses, doctors adn everyone else to "fix our baby, there is something wrong with her." And finally we had a name and a treatment plan to help our daughter. Since november she has gained weight (went from 10th percentile to 50th) and besides a few hospitals stays for a few weeks she is doing awesome. You wouldnt even know she had CF if you looked at her.

I wouldnt stress too much until you get the test results back but if your diagnoses is the same as ours then just research as much as you can, and get support from the other families in here and hope that the research (which has improved leaps and bounds in the past few years) keeps going on the pace it is and just enjoy your son.

Our theory is: there is nothing we can do but love our daughter (currently expecting another CF child in September) and always keep in the back of your head that he could have been diagnosed with someone far worse.

I hope you get the answers you seek and wish you all the best.
 
M

Mommy2Alysa

New member
LorrieLou25,

I went through a similar thing with my daughter. Until she was about 18 months old she was puking what seemed like her entire body weight at least 3-4 times a day. She wasnt gaining weight adn we were constantly at the doctors and emergency room looking for answers.

Long story short, after finding out Alysa had pneumonia that wouldnt go away after a month of treatment our doctor decided to do a sweat test for CF thinking it would come back negative but it didnt. She was diagnosed last November and as devastated as my boyfriedn (now husband) and I were at the time we were also alittle relieved to know that we WERENT crazy and we were good parents for bringing her in so much and houding teh nurses, doctors adn everyone else to "fix our baby, there is something wrong with her." And finally we had a name and a treatment plan to help our daughter. Since november she has gained weight (went from 10th percentile to 50th) and besides a few hospitals stays for a few weeks she is doing awesome. You wouldnt even know she had CF if you looked at her.

I wouldnt stress too much until you get the test results back but if your diagnoses is the same as ours then just research as much as you can, and get support from the other families in here and hope that the research (which has improved leaps and bounds in the past few years) keeps going on the pace it is and just enjoy your son.

Our theory is: there is nothing we can do but love our daughter (currently expecting another CF child in September) and always keep in the back of your head that he could have been diagnosed with someone far worse.

I hope you get the answers you seek and wish you all the best.
 
L

lorrielou25

New member
Thank you all so much for your kind words. I think it is wonderful that you take the time to comfort people the way you do. I already feel better just getting some support and encouragement. It is nice to have some answers to my questions. I will keep you posted on the results. Thanks Again,

Lori
 
L

lorrielou25

New member
Thank you all so much for your kind words. I think it is wonderful that you take the time to comfort people the way you do. I already feel better just getting some support and encouragement. It is nice to have some answers to my questions. I will keep you posted on the results. Thanks Again,

Lori
 
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