PDA

View Full Version : New mom and I am scared



shyviolet247
02-15-2007, 11:24 PM
I have no idea what to do. I am so scared. I knew something wasnt right when I gave birth. You see, my son was born with pneumonia. It is rare, but it is true. He had to stay in the hospital for 7 days. Three of those days he was under an oxygen tent because he couldnt breathe well on his own. We figured it was because of the pneumonia. As a result of him not being able to leave the tent he could not have much in the way of breast milk or formula and had to get his nutrients through an IV. Well because of that, he became jaundice and had to undergo the bililights for 24 straight hours. His bilirubin was above 16 points. Now they are telling me that all this may be due to CF. I have read all this information today and all I keep thinking about is that he will die if he does have this disease. He is my little miracle baby. I was told that I wouldnt have him because I was diagnosed with endometriosis. I could certainly use some advice...anything at this point...please

shyviolet247
02-15-2007, 11:24 PM
I have no idea what to do. I am so scared. I knew something wasnt right when I gave birth. You see, my son was born with pneumonia. It is rare, but it is true. He had to stay in the hospital for 7 days. Three of those days he was under an oxygen tent because he couldnt breathe well on his own. We figured it was because of the pneumonia. As a result of him not being able to leave the tent he could not have much in the way of breast milk or formula and had to get his nutrients through an IV. Well because of that, he became jaundice and had to undergo the bililights for 24 straight hours. His bilirubin was above 16 points. Now they are telling me that all this may be due to CF. I have read all this information today and all I keep thinking about is that he will die if he does have this disease. He is my little miracle baby. I was told that I wouldnt have him because I was diagnosed with endometriosis. I could certainly use some advice...anything at this point...please

shyviolet247
02-15-2007, 11:24 PM
I have no idea what to do. I am so scared. I knew something wasnt right when I gave birth. You see, my son was born with pneumonia. It is rare, but it is true. He had to stay in the hospital for 7 days. Three of those days he was under an oxygen tent because he couldnt breathe well on his own. We figured it was because of the pneumonia. As a result of him not being able to leave the tent he could not have much in the way of breast milk or formula and had to get his nutrients through an IV. Well because of that, he became jaundice and had to undergo the bililights for 24 straight hours. His bilirubin was above 16 points. Now they are telling me that all this may be due to CF. I have read all this information today and all I keep thinking about is that he will die if he does have this disease. He is my little miracle baby. I was told that I wouldnt have him because I was diagnosed with endometriosis. I could certainly use some advice...anything at this point...please

NoExcuses
02-15-2007, 11:37 PM
Sorry to hear about your situation.

I would recommend getting an AMBRY CF genetic test immediately. It is extremely accurate (nothing is 100% though) and will test for all known CF genes. Someone may suggest a sweat test, but this is an old diagnosis tool and isn't very accurate.

Hang around here... there is a lot of support to be found....

NoExcuses
02-15-2007, 11:37 PM
Sorry to hear about your situation.

I would recommend getting an AMBRY CF genetic test immediately. It is extremely accurate (nothing is 100% though) and will test for all known CF genes. Someone may suggest a sweat test, but this is an old diagnosis tool and isn't very accurate.

Hang around here... there is a lot of support to be found....

NoExcuses
02-15-2007, 11:37 PM
Sorry to hear about your situation.

I would recommend getting an AMBRY CF genetic test immediately. It is extremely accurate (nothing is 100% though) and will test for all known CF genes. Someone may suggest a sweat test, but this is an old diagnosis tool and isn't very accurate.

Hang around here... there is a lot of support to be found....

ktsmom
02-15-2007, 11:41 PM
I'm sorry that you are going through this. Even if your baby does have CF there is a lot of reason for hope.

Who is telling you he may have CF - i.e. what kind of specialists are involved? What are they planning to do - sweat test, genetic testing? When? Are you able to go to an accredited CF center?

I recommend that you read only the things about your baby's specific symptoms. There is a lot of information about CF and not all of it applies to your situation right now and you'll only drive yourself crazy.

Your baby is a miracle baby and nothing will change that! I hope you find out some answers tomorrow, or very quickly. Hang in there!

ktsmom
02-15-2007, 11:41 PM
I'm sorry that you are going through this. Even if your baby does have CF there is a lot of reason for hope.

Who is telling you he may have CF - i.e. what kind of specialists are involved? What are they planning to do - sweat test, genetic testing? When? Are you able to go to an accredited CF center?

I recommend that you read only the things about your baby's specific symptoms. There is a lot of information about CF and not all of it applies to your situation right now and you'll only drive yourself crazy.

Your baby is a miracle baby and nothing will change that! I hope you find out some answers tomorrow, or very quickly. Hang in there!

ktsmom
02-15-2007, 11:41 PM
I'm sorry that you are going through this. Even if your baby does have CF there is a lot of reason for hope.

Who is telling you he may have CF - i.e. what kind of specialists are involved? What are they planning to do - sweat test, genetic testing? When? Are you able to go to an accredited CF center?

I recommend that you read only the things about your baby's specific symptoms. There is a lot of information about CF and not all of it applies to your situation right now and you'll only drive yourself crazy.

Your baby is a miracle baby and nothing will change that! I hope you find out some answers tomorrow, or very quickly. Hang in there!

shyviolet247
02-15-2007, 11:57 PM
I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.

shyviolet247
02-15-2007, 11:57 PM
I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.

shyviolet247
02-15-2007, 11:57 PM
I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.

JazzysMom
02-16-2007, 12:08 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.</end quote></div>

I dont understand why genetic testing isnt necessary. Depending on what the sweat test results are...you might need to persue genetic. Good Luck!

JazzysMom
02-16-2007, 12:08 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.</end quote></div>

I dont understand why genetic testing isnt necessary. Depending on what the sweat test results are...you might need to persue genetic. Good Luck!

JazzysMom
02-16-2007, 12:08 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I was told that they were going to perform a sweat test at Strong Memorial which is located in Rochester. Genetic testing will not be nessacary as I had too many ohter complications with this pregnancy, I was adviced to have a tubal done, I was placed on bedrest for nearly half of my pregnancy. My OB/Gyn said that each pregnancy was going to be worse. I had Hydromnios (excessive amounts of amniotic fluid) and PSD (Pelvic Symphysis Disorder). If I needed to go to the grocery store, I had to shop in a wheelchair cause I could hardly walk.</end quote></div>

I dont understand why genetic testing isnt necessary. Depending on what the sweat test results are...you might need to persue genetic. Good Luck!

shyviolet247
02-16-2007, 12:13 AM
I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy

shyviolet247
02-16-2007, 12:13 AM
I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy

shyviolet247
02-16-2007, 12:13 AM
I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy

NoExcuses
02-16-2007, 12:36 AM
You said you don't know if he has CF or not.... if you don't know, then you get a genetic test.

Genetic testing isn't ONLY done when you want to know which CF genes are responsible. Genetic testing is done as a DIAGNOSTIC tool as well.

And it sounds like you're looking for a diagnosis... am I wrong???????????

NoExcuses
02-16-2007, 12:36 AM
You said you don't know if he has CF or not.... if you don't know, then you get a genetic test.

Genetic testing isn't ONLY done when you want to know which CF genes are responsible. Genetic testing is done as a DIAGNOSTIC tool as well.

And it sounds like you're looking for a diagnosis... am I wrong???????????

NoExcuses
02-16-2007, 12:36 AM
You said you don't know if he has CF or not.... if you don't know, then you get a genetic test.

Genetic testing isn't ONLY done when you want to know which CF genes are responsible. Genetic testing is done as a DIAGNOSTIC tool as well.

And it sounds like you're looking for a diagnosis... am I wrong???????????

JazzysMom
02-16-2007, 12:53 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy</end quote></div>

Why is it obvious that you and his father carry the gene? Did you both get tested? EVEN if you both are carriers there is a 25% chance of him having CF not 100% so yes the genetic testing is still beneficial to diagnose him with the sweat test.

JazzysMom
02-16-2007, 12:53 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy</end quote></div>

Why is it obvious that you and his father carry the gene? Did you both get tested? EVEN if you both are carriers there is a 25% chance of him having CF not 100% so yes the genetic testing is still beneficial to diagnose him with the sweat test.

JazzysMom
02-16-2007, 12:53 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shyviolet247</b></i>

I cant have any more children, I have been fixed... It is only obvious that me and his father carry a CF gene. Genetic testing is only there to see what CF gene is resposible for my son's condition. *Smacks forehead* Duh!! I think I just answered myself. I think I may have already gone crazy</end quote></div>

Why is it obvious that you and his father carry the gene? Did you both get tested? EVEN if you both are carriers there is a 25% chance of him having CF not 100% so yes the genetic testing is still beneficial to diagnose him with the sweat test.

Hughett
02-16-2007, 02:31 PM
I have to day that I agree with sakasuka. A Genetic test will give you a firm diagnosis if he has it, and it will give you the genes. That is some good information you will need if your child has it. If i remember right you cant do a sweat test for X Months old. I feel for you though. It was only 7.5 months ago me and my wife were in the same situation with our first baby, minus the pneumonia and extra fluid. We had our little guy and he was on oxygen for a bit, didn't have his first poop for over a week when we had to take him to the NICU(mad at nurses for letting him out of the hospital in the first place with that knowledge), had jaundice really bad, and was throwing up after every meal and the color and smell was getting worse and worse (due to the not pooping). Yeah, the first couple of months are some of the worst because they freak us parents out soooo much. I hope everything calms down with the baby. Hang in there. Post in the Adults Section of this site if you have any questions you need answered. It seems like most of the people on here post there.

Hughett
02-16-2007, 02:31 PM
I have to day that I agree with sakasuka. A Genetic test will give you a firm diagnosis if he has it, and it will give you the genes. That is some good information you will need if your child has it. If i remember right you cant do a sweat test for X Months old. I feel for you though. It was only 7.5 months ago me and my wife were in the same situation with our first baby, minus the pneumonia and extra fluid. We had our little guy and he was on oxygen for a bit, didn't have his first poop for over a week when we had to take him to the NICU(mad at nurses for letting him out of the hospital in the first place with that knowledge), had jaundice really bad, and was throwing up after every meal and the color and smell was getting worse and worse (due to the not pooping). Yeah, the first couple of months are some of the worst because they freak us parents out soooo much. I hope everything calms down with the baby. Hang in there. Post in the Adults Section of this site if you have any questions you need answered. It seems like most of the people on here post there.

Hughett
02-16-2007, 02:31 PM
I have to day that I agree with sakasuka. A Genetic test will give you a firm diagnosis if he has it, and it will give you the genes. That is some good information you will need if your child has it. If i remember right you cant do a sweat test for X Months old. I feel for you though. It was only 7.5 months ago me and my wife were in the same situation with our first baby, minus the pneumonia and extra fluid. We had our little guy and he was on oxygen for a bit, didn't have his first poop for over a week when we had to take him to the NICU(mad at nurses for letting him out of the hospital in the first place with that knowledge), had jaundice really bad, and was throwing up after every meal and the color and smell was getting worse and worse (due to the not pooping). Yeah, the first couple of months are some of the worst because they freak us parents out soooo much. I hope everything calms down with the baby. Hang in there. Post in the Adults Section of this site if you have any questions you need answered. It seems like most of the people on here post there.

Foody
02-16-2007, 05:58 PM
The genetic test is for your son not for you. In infants is is often very difficult to get enough sweat for the sweat test so it is recommended that you go with the guthrey panel or ambry genetic test immediately if CF is suspected in the infant. They prick the foot and collect the sample (we had Guthrey not sure if Ambry is the same procedure)....2 weeks later you will have the results. It tests for over 1000 mutations and it more reliable than sweat testing. You can continue to try the sweat tests for further clarification, but it can be a frustrating and can waste precious time (in my experience).

You have been through alot with the pregancy and now this uncertainty surrounding his health. It is very hard to wait and even harder to have to advocate when you are in a very tender place. You must though and we are here for you. Going undiagnosed is worse than knowing especially if he needs enzyme therapy. It may not be CF at all but it needs to be ruled out on a genetic level.

Warmly,

Foody
02-16-2007, 05:58 PM
The genetic test is for your son not for you. In infants is is often very difficult to get enough sweat for the sweat test so it is recommended that you go with the guthrey panel or ambry genetic test immediately if CF is suspected in the infant. They prick the foot and collect the sample (we had Guthrey not sure if Ambry is the same procedure)....2 weeks later you will have the results. It tests for over 1000 mutations and it more reliable than sweat testing. You can continue to try the sweat tests for further clarification, but it can be a frustrating and can waste precious time (in my experience).

You have been through alot with the pregancy and now this uncertainty surrounding his health. It is very hard to wait and even harder to have to advocate when you are in a very tender place. You must though and we are here for you. Going undiagnosed is worse than knowing especially if he needs enzyme therapy. It may not be CF at all but it needs to be ruled out on a genetic level.

Warmly,

Foody
02-16-2007, 05:58 PM
The genetic test is for your son not for you. In infants is is often very difficult to get enough sweat for the sweat test so it is recommended that you go with the guthrey panel or ambry genetic test immediately if CF is suspected in the infant. They prick the foot and collect the sample (we had Guthrey not sure if Ambry is the same procedure)....2 weeks later you will have the results. It tests for over 1000 mutations and it more reliable than sweat testing. You can continue to try the sweat tests for further clarification, but it can be a frustrating and can waste precious time (in my experience).

You have been through alot with the pregancy and now this uncertainty surrounding his health. It is very hard to wait and even harder to have to advocate when you are in a very tender place. You must though and we are here for you. Going undiagnosed is worse than knowing especially if he needs enzyme therapy. It may not be CF at all but it needs to be ruled out on a genetic level.

Warmly,