New with questions...

MikeysMomma · Dec 29, 2007

My son just got out of the hospital with a second bout of pneumonia in the last month. Just a little background...my son just turned 2 last sunday and was born with a genetic kidney disease called multicystic dysplastic kidney disease. We have been told that a kidney transplant is in his future it is just a matter of when. He is not on dialysis at this time. He has always had difficulties with bowel movements, chronic constipation and mucousy looking stools. Most recently he has had several infections including the pneumonia that is resistant to IV Vancomycin. He has also been diagnosed lately with failure to thrive. He is 2 years old, 28 inches tall and 22 lbs. He still wears 12 month clothing. He has a very healthy appetite, he eats everything in sight it seems like. We have to go back to ACH on Jan 8th for the sweat test. They didn't want to do it now because he has had diarrhea and has been dehydrated and they said it could cause the test to be wrong. Do his symptoms of the chronic bowel problems, failure to thrive and recurrent lung and upper respiratory infections sound like CF? He has been on antibiotics that they normally do not give to children due to there not being any studies done on children his age. He has also had a chronic cough for the last 5 months. Am I over-reacting? I'm trying to stay calm until we get the results. Any advice?
Heather
P.S. Our first child died shortly after birth. She was premature and had some lung issues. Could she have had CF? I feel like I'm going crazy.

P.S.S. I'm a licensed nurse and I didn't even put it together that he could possibly have CF until the doctors said something about it with this last hospital stay.

MikeysMomma · Dec 29, 2007

My son just got out of the hospital with a second bout of pneumonia in the last month. Just a little background...my son just turned 2 last sunday and was born with a genetic kidney disease called multicystic dysplastic kidney disease. We have been told that a kidney transplant is in his future it is just a matter of when. He is not on dialysis at this time. He has always had difficulties with bowel movements, chronic constipation and mucousy looking stools. Most recently he has had several infections including the pneumonia that is resistant to IV Vancomycin. He has also been diagnosed lately with failure to thrive. He is 2 years old, 28 inches tall and 22 lbs. He still wears 12 month clothing. He has a very healthy appetite, he eats everything in sight it seems like. We have to go back to ACH on Jan 8th for the sweat test. They didn't want to do it now because he has had diarrhea and has been dehydrated and they said it could cause the test to be wrong. Do his symptoms of the chronic bowel problems, failure to thrive and recurrent lung and upper respiratory infections sound like CF? He has been on antibiotics that they normally do not give to children due to there not being any studies done on children his age. He has also had a chronic cough for the last 5 months. Am I over-reacting? I'm trying to stay calm until we get the results. Any advice?
Heather
P.S. Our first child died shortly after birth. She was premature and had some lung issues. Could she have had CF? I feel like I'm going crazy.

P.S.S. I'm a licensed nurse and I didn't even put it together that he could possibly have CF until the doctors said something about it with this last hospital stay.

MikeysMomma · Dec 29, 2007

My son just got out of the hospital with a second bout of pneumonia in the last month. Just a little background...my son just turned 2 last sunday and was born with a genetic kidney disease called multicystic dysplastic kidney disease. We have been told that a kidney transplant is in his future it is just a matter of when. He is not on dialysis at this time. He has always had difficulties with bowel movements, chronic constipation and mucousy looking stools. Most recently he has had several infections including the pneumonia that is resistant to IV Vancomycin. He has also been diagnosed lately with failure to thrive. He is 2 years old, 28 inches tall and 22 lbs. He still wears 12 month clothing. He has a very healthy appetite, he eats everything in sight it seems like. We have to go back to ACH on Jan 8th for the sweat test. They didn't want to do it now because he has had diarrhea and has been dehydrated and they said it could cause the test to be wrong. Do his symptoms of the chronic bowel problems, failure to thrive and recurrent lung and upper respiratory infections sound like CF? He has been on antibiotics that they normally do not give to children due to there not being any studies done on children his age. He has also had a chronic cough for the last 5 months. Am I over-reacting? I'm trying to stay calm until we get the results. Any advice?
Heather
P.S. Our first child died shortly after birth. She was premature and had some lung issues. Could she have had CF? I feel like I'm going crazy.

P.S.S. I'm a licensed nurse and I didn't even put it together that he could possibly have CF until the doctors said something about it with this last hospital stay.

MikeysMomma · Dec 29, 2007

My son just got out of the hospital with a second bout of pneumonia in the last month. Just a little background...my son just turned 2 last sunday and was born with a genetic kidney disease called multicystic dysplastic kidney disease. We have been told that a kidney transplant is in his future it is just a matter of when. He is not on dialysis at this time. He has always had difficulties with bowel movements, chronic constipation and mucousy looking stools. Most recently he has had several infections including the pneumonia that is resistant to IV Vancomycin. He has also been diagnosed lately with failure to thrive. He is 2 years old, 28 inches tall and 22 lbs. He still wears 12 month clothing. He has a very healthy appetite, he eats everything in sight it seems like. We have to go back to ACH on Jan 8th for the sweat test. They didn't want to do it now because he has had diarrhea and has been dehydrated and they said it could cause the test to be wrong. Do his symptoms of the chronic bowel problems, failure to thrive and recurrent lung and upper respiratory infections sound like CF? He has been on antibiotics that they normally do not give to children due to there not being any studies done on children his age. He has also had a chronic cough for the last 5 months. Am I over-reacting? I'm trying to stay calm until we get the results. Any advice?
Heather
P.S. Our first child died shortly after birth. She was premature and had some lung issues. Could she have had CF? I feel like I'm going crazy.

P.S.S. I'm a licensed nurse and I didn't even put it together that he could possibly have CF until the doctors said something about it with this last hospital stay.

MikeysMomma · Dec 29, 2007

My son just got out of the hospital with a second bout of pneumonia in the last month. Just a little background...my son just turned 2 last sunday and was born with a genetic kidney disease called multicystic dysplastic kidney disease. We have been told that a kidney transplant is in his future it is just a matter of when. He is not on dialysis at this time. He has always had difficulties with bowel movements, chronic constipation and mucousy looking stools. Most recently he has had several infections including the pneumonia that is resistant to IV Vancomycin. He has also been diagnosed lately with failure to thrive. He is 2 years old, 28 inches tall and 22 lbs. He still wears 12 month clothing. He has a very healthy appetite, he eats everything in sight it seems like. We have to go back to ACH on Jan 8th for the sweat test. They didn't want to do it now because he has had diarrhea and has been dehydrated and they said it could cause the test to be wrong. Do his symptoms of the chronic bowel problems, failure to thrive and recurrent lung and upper respiratory infections sound like CF? He has been on antibiotics that they normally do not give to children due to there not being any studies done on children his age. He has also had a chronic cough for the last 5 months. Am I over-reacting? I'm trying to stay calm until we get the results. Any advice?
Heather
P.S. Our first child died shortly after birth. She was premature and had some lung issues. Could she have had CF? I feel like I'm going crazy.

P.S.S. I'm a licensed nurse and I didn't even put it together that he could possibly have CF until the doctors said something about it with this last hospital stay.

Mommafirst · Dec 29, 2007

UGh, Heather, I'm so sorry, it sounds like you have been through the wringer. My first thought was wondering if these symptoms could anyway be related to his MDKD. But yes, all those symptoms are pretty classic CF symptoms. And while I think it is rare in today's day to have a baby pass away from CF so young and not know, again it is possible.

I wish I could reassure you and tell you that it sounds like you are making too much out of nothing. If I were you, I'd not only get the sweat test, but if it comes up negative or borderline to be sure to ask for genetic testing as well. You have too much on your plate not to know and not to be able to help your darling son.

My daughter will be 2 in a few weeks. She weighs 21lbs and is 31 inches, so she's not too far off from your son -- and she too is failure to thrive. If you have any other questions feel free to ask. I wish you luck!!

Heather

Mommafirst · Dec 29, 2007

UGh, Heather, I'm so sorry, it sounds like you have been through the wringer. My first thought was wondering if these symptoms could anyway be related to his MDKD. But yes, all those symptoms are pretty classic CF symptoms. And while I think it is rare in today's day to have a baby pass away from CF so young and not know, again it is possible.

I wish I could reassure you and tell you that it sounds like you are making too much out of nothing. If I were you, I'd not only get the sweat test, but if it comes up negative or borderline to be sure to ask for genetic testing as well. You have too much on your plate not to know and not to be able to help your darling son.

My daughter will be 2 in a few weeks. She weighs 21lbs and is 31 inches, so she's not too far off from your son -- and she too is failure to thrive. If you have any other questions feel free to ask. I wish you luck!!

Heather

Mommafirst · Dec 29, 2007

UGh, Heather, I'm so sorry, it sounds like you have been through the wringer. My first thought was wondering if these symptoms could anyway be related to his MDKD. But yes, all those symptoms are pretty classic CF symptoms. And while I think it is rare in today's day to have a baby pass away from CF so young and not know, again it is possible.

I wish I could reassure you and tell you that it sounds like you are making too much out of nothing. If I were you, I'd not only get the sweat test, but if it comes up negative or borderline to be sure to ask for genetic testing as well. You have too much on your plate not to know and not to be able to help your darling son.

My daughter will be 2 in a few weeks. She weighs 21lbs and is 31 inches, so she's not too far off from your son -- and she too is failure to thrive. If you have any other questions feel free to ask. I wish you luck!!

Heather

Mommafirst · Dec 29, 2007

UGh, Heather, I'm so sorry, it sounds like you have been through the wringer. My first thought was wondering if these symptoms could anyway be related to his MDKD. But yes, all those symptoms are pretty classic CF symptoms. And while I think it is rare in today's day to have a baby pass away from CF so young and not know, again it is possible.

I wish I could reassure you and tell you that it sounds like you are making too much out of nothing. If I were you, I'd not only get the sweat test, but if it comes up negative or borderline to be sure to ask for genetic testing as well. You have too much on your plate not to know and not to be able to help your darling son.

My daughter will be 2 in a few weeks. She weighs 21lbs and is 31 inches, so she's not too far off from your son -- and she too is failure to thrive. If you have any other questions feel free to ask. I wish you luck!!

Heather

Mommafirst · Dec 29, 2007

UGh, Heather, I'm so sorry, it sounds like you have been through the wringer. My first thought was wondering if these symptoms could anyway be related to his MDKD. But yes, all those symptoms are pretty classic CF symptoms. And while I think it is rare in today's day to have a baby pass away from CF so young and not know, again it is possible.

I wish I could reassure you and tell you that it sounds like you are making too much out of nothing. If I were you, I'd not only get the sweat test, but if it comes up negative or borderline to be sure to ask for genetic testing as well. You have too much on your plate not to know and not to be able to help your darling son.

My daughter will be 2 in a few weeks. She weighs 21lbs and is 31 inches, so she's not too far off from your son -- and she too is failure to thrive. If you have any other questions feel free to ask. I wish you luck!!

Heather

JazzysMom · Dec 29, 2007