help for a worried mum

A

Angel868

Guest
Listen I am 20 with cystic fibrosis and female. I read about CF the symptoms, what causes it, and I know a lot about it besides having it. The crackling does worry me. Listen to the baby's chest and see if you hear crackling and wheezing. That means there could be mucous that clogs the airways. That is one symptom!!! If the baby seems like she eats well and does not gain wait and has a pot belly. That means she is not digesting food properly. Thats another sign. Taste the sweat on the baby and then your own(ewwe); that will at least let you know if hers tastes any different than yours. Than taste salt. Then youll know. Take her for a genetic test and sweat test ask the doctor about it. let me know
 
A

Angel868

Guest
Listen I am 20 with cystic fibrosis and female. I read about CF the symptoms, what causes it, and I know a lot about it besides having it. The crackling does worry me. Listen to the baby's chest and see if you hear crackling and wheezing. That means there could be mucous that clogs the airways. That is one symptom!!! If the baby seems like she eats well and does not gain wait and has a pot belly. That means she is not digesting food properly. Thats another sign. Taste the sweat on the baby and then your own(ewwe); that will at least let you know if hers tastes any different than yours. Than taste salt. Then youll know. Take her for a genetic test and sweat test ask the doctor about it. let me know
 
B

boo

New member
Hello

I just thought I would send an update because I guess it's frustrating at times when you all give so much time and concern to worried parents like myself and then never hear anything more about them.

We still have no answers. I haven't logged back on because I've been doing my best not to be obsessed with the possibility of a CF diagnosis. We've had quite a few hospital appointments, each time expecting the sweat test but then being disappointed to find that it was just another 2nd opinion. Anyway, we finally got the sweat test last month and are due to go back for the results next week.

weight-wise, my son is 100% better. Since we put him on solids, he is really thriving. He now weighs almost as much (at eight months) than his two year-old brother. His breathing is still bad. We recently went home to the UK for a few weeks and it seemed to improve there. Almost as soon as we got back, the gurgling flared up again. we live at 650 metres above sea level, so not sure if that's a factor. Yesterday I could hear it from the next room and we live in a big old house with VERY think walls! That said, the last paediatrician we saw said that he thought the sound wasn't coming from his lungs but jsut sounded that way because of vibrations from mucus further up the respiratory tract...but still no indication as to why, without ever having had a cold, he should have so much mucuc around in the first place.

Anyway, I will keep you posted about the results and hopefully will let you all know when we have some answers even if it's not CF, so that other worried parents can have some idea about alternative diagnoses with respiratory problems. I really would like to be able to be helpful in some way and give something back since you have all been so very good to me.

Thank you,

Boo
 
B

boo

New member
Hello

I just thought I would send an update because I guess it's frustrating at times when you all give so much time and concern to worried parents like myself and then never hear anything more about them.

We still have no answers. I haven't logged back on because I've been doing my best not to be obsessed with the possibility of a CF diagnosis. We've had quite a few hospital appointments, each time expecting the sweat test but then being disappointed to find that it was just another 2nd opinion. Anyway, we finally got the sweat test last month and are due to go back for the results next week.

weight-wise, my son is 100% better. Since we put him on solids, he is really thriving. He now weighs almost as much (at eight months) than his two year-old brother. His breathing is still bad. We recently went home to the UK for a few weeks and it seemed to improve there. Almost as soon as we got back, the gurgling flared up again. we live at 650 metres above sea level, so not sure if that's a factor. Yesterday I could hear it from the next room and we live in a big old house with VERY think walls! That said, the last paediatrician we saw said that he thought the sound wasn't coming from his lungs but jsut sounded that way because of vibrations from mucus further up the respiratory tract...but still no indication as to why, without ever having had a cold, he should have so much mucuc around in the first place.

Anyway, I will keep you posted about the results and hopefully will let you all know when we have some answers even if it's not CF, so that other worried parents can have some idea about alternative diagnoses with respiratory problems. I really would like to be able to be helpful in some way and give something back since you have all been so very good to me.

Thank you,

Boo
 
B

boo

New member
Hello

I just thought I would send an update because I guess it's frustrating at times when you all give so much time and concern to worried parents like myself and then never hear anything more about them.

We still have no answers. I haven't logged back on because I've been doing my best not to be obsessed with the possibility of a CF diagnosis. We've had quite a few hospital appointments, each time expecting the sweat test but then being disappointed to find that it was just another 2nd opinion. Anyway, we finally got the sweat test last month and are due to go back for the results next week.

weight-wise, my son is 100% better. Since we put him on solids, he is really thriving. He now weighs almost as much (at eight months) than his two year-old brother. His breathing is still bad. We recently went home to the UK for a few weeks and it seemed to improve there. Almost as soon as we got back, the gurgling flared up again. we live at 650 metres above sea level, so not sure if that's a factor. Yesterday I could hear it from the next room and we live in a big old house with VERY think walls! That said, the last paediatrician we saw said that he thought the sound wasn't coming from his lungs but jsut sounded that way because of vibrations from mucus further up the respiratory tract...but still no indication as to why, without ever having had a cold, he should have so much mucuc around in the first place.

Anyway, I will keep you posted about the results and hopefully will let you all know when we have some answers even if it's not CF, so that other worried parents can have some idea about alternative diagnoses with respiratory problems. I really would like to be able to be helpful in some way and give something back since you have all been so very good to me.

Thank you,

Boo
 
D

ddawes27

Guest
Boo
I am new to this whole CF thing myself. Regardless of what country you live in , You should be able to look up on the internet, or by telephone research, which Childrens Hospitals have a Cystic Fibrosis program. Find one that is as close as possible to you (mine is 2 hours away from me {Florida, U.S.A}) Make an appointment with the Pulmonology group associated with that hospital. That group of physicians are used to the symptoms of CF and will test your baby if they feel the symptoms are consistant with Cystic Fibrosis. I think that is your best bet. If your insurance requires a referral from your primary doctor, and you cannot get one: it may be worth your while to pay for the visit. The stress level of wondering is worth paying for a one time MD appointment to know! Good luck to you. Vaya con Dios.
Doe
 
D

ddawes27

Guest
Boo
I am new to this whole CF thing myself. Regardless of what country you live in , You should be able to look up on the internet, or by telephone research, which Childrens Hospitals have a Cystic Fibrosis program. Find one that is as close as possible to you (mine is 2 hours away from me {Florida, U.S.A}) Make an appointment with the Pulmonology group associated with that hospital. That group of physicians are used to the symptoms of CF and will test your baby if they feel the symptoms are consistant with Cystic Fibrosis. I think that is your best bet. If your insurance requires a referral from your primary doctor, and you cannot get one: it may be worth your while to pay for the visit. The stress level of wondering is worth paying for a one time MD appointment to know! Good luck to you. Vaya con Dios.
Doe
 
D

ddawes27

Guest
Boo
I am new to this whole CF thing myself. Regardless of what country you live in , You should be able to look up on the internet, or by telephone research, which Childrens Hospitals have a Cystic Fibrosis program. Find one that is as close as possible to you (mine is 2 hours away from me {Florida, U.S.A}) Make an appointment with the Pulmonology group associated with that hospital. That group of physicians are used to the symptoms of CF and will test your baby if they feel the symptoms are consistant with Cystic Fibrosis. I think that is your best bet. If your insurance requires a referral from your primary doctor, and you cannot get one: it may be worth your while to pay for the visit. The stress level of wondering is worth paying for a one time MD appointment to know! Good luck to you. Vaya con Dios.
Doe
 
A

amber682

New member
I'm glad you gave us an update! I just wanted to let you know that my son, almost 2 w/ CF) developed this dry, repetitive cough early this summer. I could hear a wheezing noise from across the room, especially after he ran around a bit. Sometimes he'd cough at night. Sometimes he'd cough til he gagged and then he'd vomit. Other than that he was fine, not cranky, eating well, sleeping well. I was afraid he had a lung infection, but the CF doctor told me the same thing they told you. It wasn't a wheeze in his lungs, it was his more like in the back of his throat and you could hear it rattling. It was post nasal drip, caused by allergies. It was also irritating his throat and making him do that dry cough, and clearing his throat. And when he got coughing the post nasal drip would make him gag. They put him on an allergy med (Extendryl) and he did fine. They took him off it this fall, and he's doing well. It must have been a seasonal allergy, I'm sure we'll notice it start up again in late spring.

What you described sounds similar, even though my son does have CF. Have the doctors tried something for allergies? Maybe there's an allergen bugging him where you live that's not in the UK, causing post nasal drip?

I'm glad to hear he's doing so well weight wise. I wonder why they take so long to give you the results? The sweat test results should be back same or next day. Bloodwork for genetic testing would take weeks though. I hope everything goes well, and that its not CF, and that you can get some answers. Keep us posted!
 
A

amber682

New member
I'm glad you gave us an update! I just wanted to let you know that my son, almost 2 w/ CF) developed this dry, repetitive cough early this summer. I could hear a wheezing noise from across the room, especially after he ran around a bit. Sometimes he'd cough at night. Sometimes he'd cough til he gagged and then he'd vomit. Other than that he was fine, not cranky, eating well, sleeping well. I was afraid he had a lung infection, but the CF doctor told me the same thing they told you. It wasn't a wheeze in his lungs, it was his more like in the back of his throat and you could hear it rattling. It was post nasal drip, caused by allergies. It was also irritating his throat and making him do that dry cough, and clearing his throat. And when he got coughing the post nasal drip would make him gag. They put him on an allergy med (Extendryl) and he did fine. They took him off it this fall, and he's doing well. It must have been a seasonal allergy, I'm sure we'll notice it start up again in late spring.

What you described sounds similar, even though my son does have CF. Have the doctors tried something for allergies? Maybe there's an allergen bugging him where you live that's not in the UK, causing post nasal drip?

I'm glad to hear he's doing so well weight wise. I wonder why they take so long to give you the results? The sweat test results should be back same or next day. Bloodwork for genetic testing would take weeks though. I hope everything goes well, and that its not CF, and that you can get some answers. Keep us posted!
 
A

amber682

New member
I'm glad you gave us an update! I just wanted to let you know that my son, almost 2 w/ CF) developed this dry, repetitive cough early this summer. I could hear a wheezing noise from across the room, especially after he ran around a bit. Sometimes he'd cough at night. Sometimes he'd cough til he gagged and then he'd vomit. Other than that he was fine, not cranky, eating well, sleeping well. I was afraid he had a lung infection, but the CF doctor told me the same thing they told you. It wasn't a wheeze in his lungs, it was his more like in the back of his throat and you could hear it rattling. It was post nasal drip, caused by allergies. It was also irritating his throat and making him do that dry cough, and clearing his throat. And when he got coughing the post nasal drip would make him gag. They put him on an allergy med (Extendryl) and he did fine. They took him off it this fall, and he's doing well. It must have been a seasonal allergy, I'm sure we'll notice it start up again in late spring.

What you described sounds similar, even though my son does have CF. Have the doctors tried something for allergies? Maybe there's an allergen bugging him where you live that's not in the UK, causing post nasal drip?

I'm glad to hear he's doing so well weight wise. I wonder why they take so long to give you the results? The sweat test results should be back same or next day. Bloodwork for genetic testing would take weeks though. I hope everything goes well, and that its not CF, and that you can get some answers. Keep us posted!
 
You must log in or register to reply here.
Top