Hi. I am very concerned that my son may have CF. I thought maybe some of you could give me your opinion on his symptoms. We cannot get in to see a specialist for 2 months. Any feedback would be greatly appreciated. He is 19 months old and has not gained any weight in the last 5 months. He is in the 3rd percentile for weight. He has severe breathing problems and has to use a nebulizer daily. He is on antibiotics at least once a month for bronchitis. I have been told that he has asthma and he has been treated for it. I am so scared and confused. Thanks in advance.
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Scared my son may have CF
- Thread starter leanna
- Start date
Hi. I am very concerned that my son may have CF. I thought maybe some of you could give me your opinion on his symptoms. We cannot get in to see a specialist for 2 months. Any feedback would be greatly appreciated. He is 19 months old and has not gained any weight in the last 5 months. He is in the 3rd percentile for weight. He has severe breathing problems and has to use a nebulizer daily. He is on antibiotics at least once a month for bronchitis. I have been told that he has asthma and he has been treated for it. I am so scared and confused. Thanks in advance.
Hi. I am very concerned that my son may have CF. I thought maybe some of you could give me your opinion on his symptoms. We cannot get in to see a specialist for 2 months. Any feedback would be greatly appreciated. He is 19 months old and has not gained any weight in the last 5 months. He is in the 3rd percentile for weight. He has severe breathing problems and has to use a nebulizer daily. He is on antibiotics at least once a month for bronchitis. I have been told that he has asthma and he has been treated for it. I am so scared and confused. Thanks in advance.
I am so sorry you have to go through this. Why can't you get into see a CF specialist sooner? 2 months is a long time to wait for your sanity and your child health.
If they suspect CF, usually they do something called a sweat test; which is actually a fairly quick test and the results come back that day. There is also a genetic blood test that takes at least 2 weeks to result and is more expensive which is why lots of docs order the sweat test first.
I would push for an appointment ASAP. You need to be assertive and clear with the docs. You can go to www.cff.org to learn more about CF and to find a local CF clinic in you area. I am very pushy when it comes to my children and I would even call the CF center myself (if this was me) . They usually have a nurse line where you can speak to a nurse who understand CF and explain what is going on with your child. This may get you an appointment sooner. I am sure you need a referral but the squeaky wheel gets the grease.
With CF it is very important to start treatment early.
If they suspect CF, usually they do something called a sweat test; which is actually a fairly quick test and the results come back that day. There is also a genetic blood test that takes at least 2 weeks to result and is more expensive which is why lots of docs order the sweat test first.
I would push for an appointment ASAP. You need to be assertive and clear with the docs. You can go to www.cff.org to learn more about CF and to find a local CF clinic in you area. I am very pushy when it comes to my children and I would even call the CF center myself (if this was me) . They usually have a nurse line where you can speak to a nurse who understand CF and explain what is going on with your child. This may get you an appointment sooner. I am sure you need a referral but the squeaky wheel gets the grease.
With CF it is very important to start treatment early.
I am so sorry you have to go through this. Why can't you get into see a CF specialist sooner? 2 months is a long time to wait for your sanity and your child health.
If they suspect CF, usually they do something called a sweat test; which is actually a fairly quick test and the results come back that day. There is also a genetic blood test that takes at least 2 weeks to result and is more expensive which is why lots of docs order the sweat test first.
I would push for an appointment ASAP. You need to be assertive and clear with the docs. You can go to www.cff.org to learn more about CF and to find a local CF clinic in you area. I am very pushy when it comes to my children and I would even call the CF center myself (if this was me) . They usually have a nurse line where you can speak to a nurse who understand CF and explain what is going on with your child. This may get you an appointment sooner. I am sure you need a referral but the squeaky wheel gets the grease.
With CF it is very important to start treatment early.
If they suspect CF, usually they do something called a sweat test; which is actually a fairly quick test and the results come back that day. There is also a genetic blood test that takes at least 2 weeks to result and is more expensive which is why lots of docs order the sweat test first.
I would push for an appointment ASAP. You need to be assertive and clear with the docs. You can go to www.cff.org to learn more about CF and to find a local CF clinic in you area. I am very pushy when it comes to my children and I would even call the CF center myself (if this was me) . They usually have a nurse line where you can speak to a nurse who understand CF and explain what is going on with your child. This may get you an appointment sooner. I am sure you need a referral but the squeaky wheel gets the grease.
With CF it is very important to start treatment early.
I am so sorry you have to go through this. Why can't you get into see a CF specialist sooner? 2 months is a long time to wait for your sanity and your child health.
<br />
<br />If they suspect CF, usually they do something called a sweat test; which is actually a fairly quick test and the results come back that day. There is also a genetic blood test that takes at least 2 weeks to result and is more expensive which is why lots of docs order the sweat test first.
<br />
<br /> I would push for an appointment ASAP. You need to be assertive and clear with the docs. You can go to www.cff.org to learn more about CF and to find a local CF clinic in you area. I am very pushy when it comes to my children and I would even call the CF center myself (if this was me) . They usually have a nurse line where you can speak to a nurse who understand CF and explain what is going on with your child. This may get you an appointment sooner. I am sure you need a referral but the squeaky wheel gets the grease.
<br />
<br />With CF it is very important to start treatment early.
<br />
<br />If they suspect CF, usually they do something called a sweat test; which is actually a fairly quick test and the results come back that day. There is also a genetic blood test that takes at least 2 weeks to result and is more expensive which is why lots of docs order the sweat test first.
<br />
<br /> I would push for an appointment ASAP. You need to be assertive and clear with the docs. You can go to www.cff.org to learn more about CF and to find a local CF clinic in you area. I am very pushy when it comes to my children and I would even call the CF center myself (if this was me) . They usually have a nurse line where you can speak to a nurse who understand CF and explain what is going on with your child. This may get you an appointment sooner. I am sure you need a referral but the squeaky wheel gets the grease.
<br />
<br />With CF it is very important to start treatment early.
Thanks for your response. I thought 2 months was a long wait too. I called his asthma and allergy doctor but he is on vacation until the end of next week. I didn't know if he could run the test. I spoke with the specialists' assistant who is actually in a town about an hour from where i live. She said to call back next week after my doctor has had time to send the referral. Hopefully I can convince her to see him sooner. I don't think I can wait two months.
Thanks for your response. I thought 2 months was a long wait too. I called his asthma and allergy doctor but he is on vacation until the end of next week. I didn't know if he could run the test. I spoke with the specialists' assistant who is actually in a town about an hour from where i live. She said to call back next week after my doctor has had time to send the referral. Hopefully I can convince her to see him sooner. I don't think I can wait two months.
Thanks for your response. I thought 2 months was a long wait too. I called his asthma and allergy doctor but he is on vacation until the end of next week. I didn't know if he could run the test. I spoke with the specialists' assistant who is actually in a town about an hour from where i live. She said to call back next week after my doctor has had time to send the referral. Hopefully I can convince her to see him sooner. I don't think I can wait two months.
AleksandraKaczynska
New member
I can't give you advice on where to go in the States - but these symptoms are seroius and I would also push for cf testing.First is usually a sweat test - painless and gives a quick answere. But to be almost 100% sure you should also think of doing a genetic test. Aslo they should cheque if he is pancretic sufficient or not and do a lung x-ray.
try to get to qa cf center sooner.
Try to get to
try to get to qa cf center sooner.
Try to get to
AleksandraKaczynska
New member
I can't give you advice on where to go in the States - but these symptoms are seroius and I would also push for cf testing.First is usually a sweat test - painless and gives a quick answere. But to be almost 100% sure you should also think of doing a genetic test. Aslo they should cheque if he is pancretic sufficient or not and do a lung x-ray.
try to get to qa cf center sooner.
Try to get to
try to get to qa cf center sooner.
Try to get to
AleksandraKaczynska
New member
I can't give you advice on where to go in the States - but these symptoms are seroius and I would also push for cf testing.First is usually a sweat test - painless and gives a quick answere. But to be almost 100% sure you should also think of doing a genetic test. Aslo they should cheque if he is pancretic sufficient or not and do a lung x-ray.
<br />try to get to qa cf center sooner.
<br />Try to get to
<br />try to get to qa cf center sooner.
<br />Try to get to
Hi! I am very sorry you have to go through this..It can be very frustrating I am sure. My son is 19 months old and was diagnosed at birth by newborn screen. Based on the symptoms you have said, I would difinetly push to see the specialist sooner. My son's pediatrician ordered his sweat test, Could yours do they same based on the symptoms. This way the wait wouldnt be quite as long. The sweat test is a fairly simple test. Did you have prenatal testing to see if you were a carrier for CF? Again, I am terribly sorry you and your family are going throught such a scary time.
Hi! I am very sorry you have to go through this..It can be very frustrating I am sure. My son is 19 months old and was diagnosed at birth by newborn screen. Based on the symptoms you have said, I would difinetly push to see the specialist sooner. My son's pediatrician ordered his sweat test, Could yours do they same based on the symptoms. This way the wait wouldnt be quite as long. The sweat test is a fairly simple test. Did you have prenatal testing to see if you were a carrier for CF? Again, I am terribly sorry you and your family are going throught such a scary time.
Hi! I am very sorry you have to go through this..It can be very frustrating I am sure. My son is 19 months old and was diagnosed at birth by newborn screen. Based on the symptoms you have said, I would difinetly push to see the specialist sooner. My son's pediatrician ordered his sweat test, Could yours do they same based on the symptoms. This way the wait wouldnt be quite as long. The sweat test is a fairly simple test. Did you have prenatal testing to see if you were a carrier for CF? Again, I am terribly sorry you and your family are going throught such a scary time.
I would also ask the pediatrician for the referal asap. Make sure it is an accredited CF center (the ones in your area can be found on the Cystic Fibrosis Foundation website) to make sure the test is done correctly. I'm sorry you are having to go through this too, but should it come back as positive, the cf community can help, and it will open up treatments that will hopefully help him feel and do much better.
I would also ask the pediatrician for the referal asap. Make sure it is an accredited CF center (the ones in your area can be found on the Cystic Fibrosis Foundation website) to make sure the test is done correctly. I'm sorry you are having to go through this too, but should it come back as positive, the cf community can help, and it will open up treatments that will hopefully help him feel and do much better.
I would also ask the pediatrician for the referal asap. Make sure it is an accredited CF center (the ones in your area can be found on the Cystic Fibrosis Foundation website) to make sure the test is done correctly. I'm sorry you are having to go through this too, but should it come back as positive, the cf community can help, and it will open up treatments that will hopefully help him feel and do much better.
Thank you all so much for your replies. We have a consult with our pediatrician next week. Hopefully he can get the test done ASAP. I don't know if I had a prenatal screening for CF. It was never mentioned to me. I just hope we can get this soon very soon. Thanks again everyone.
Thank you all so much for your replies. We have a consult with our pediatrician next week. Hopefully he can get the test done ASAP. I don't know if I had a prenatal screening for CF. It was never mentioned to me. I just hope we can get this soon very soon. Thanks again everyone.