New and Confused about my son

[katie4byz]

Hi all I have joined all the way from Manchester in the UK in search of possible similarities or even advice on if I should be asking more or doing more??
I have been reading posts on and of for a few weeks now and you all seem so helpful and lovely. Anyway heres my story and any advice would be great <img src="http://www.cftrust.org.uk/forum/images/smiles/icon_smile.gif" alt="Smile" border="0" /> My son now 9 a few days ago has had bad asthma since being a baby and still suffers now hes grown lovely bigger than most 9year olds and a chunky boy, the testing for cf came in december when he was in hospital for pneumonia and a doctor said he needs a sweat test since then he had 1 and it came back boarderline he was back in for 2 more and bloods which both test have come back the same boaderline and his bloods still not back am confused as to what all this means and trying to still stay positive his consultant said it could be a no hes wocf or he is wcf and now its a case of waiting on bloods also sending him for a ct scan of chest while waiting on bloods. I still feel lost and struggling to get my head arround it all thought I would have known by now its been 3 months and still no answers, I feel very angry at my GP as I have been taking him there for 9years and asked to be reffered and they have refused him everytime!
Thanks for any help in advance Katie xx

 

[katie4byz]

Hi all I have joined all the way from Manchester in the UK in search of possible similarities or even advice on if I should be asking more or doing more??
I have been reading posts on and of for a few weeks now and you all seem so helpful and lovely. Anyway heres my story and any advice would be great <img src="http://www.cftrust.org.uk/forum/images/smiles/icon_smile.gif" alt="Smile" border="0" /> My son now 9 a few days ago has had bad asthma since being a baby and still suffers now hes grown lovely bigger than most 9year olds and a chunky boy, the testing for cf came in december when he was in hospital for pneumonia and a doctor said he needs a sweat test since then he had 1 and it came back boarderline he was back in for 2 more and bloods which both test have come back the same boaderline and his bloods still not back am confused as to what all this means and trying to still stay positive his consultant said it could be a no hes wocf or he is wcf and now its a case of waiting on bloods also sending him for a ct scan of chest while waiting on bloods. I still feel lost and struggling to get my head arround it all thought I would have known by now its been 3 months and still no answers, I feel very angry at my GP as I have been taking him there for 9years and asked to be reffered and they have refused him everytime!
Thanks for any help in advance Katie xx

 

[Dizzy16]

I know how you feel. We were in the same boat. My son FINALLY at the age of 8yrs, 8 mths and 5days finally we found out he has CF. He too had border line sweat tests. They were always negative, but a high negative. We did find out two years ago he was a carrier. The past few months he has had two lung infections back to back. Just make sure to stay on top of the dr's it may take time, but you will get your answers.

Michele

 

[Dizzy16]

I know how you feel. We were in the same boat. My son FINALLY at the age of 8yrs, 8 mths and 5days finally we found out he has CF. He too had border line sweat tests. They were always negative, but a high negative. We did find out two years ago he was a carrier. The past few months he has had two lung infections back to back. Just make sure to stay on top of the dr's it may take time, but you will get your answers.

Michele

 

[katie4byz]

Thanks for your reply, I do hope it turns out to be he has'nt got cf, how did they finally diagnose your son as they have ran some bloods for my son and he is going in to have a ct scan of the chest x

 

[katie4byz]

Thanks for your reply, I do hope it turns out to be he has'nt got cf, how did they finally diagnose your son as they have ran some bloods for my son and he is going in to have a ct scan of the chest x

 

[Dizzy16]

My son is not your black and white CF case. He had 5 sweat tests since he was 18 months old. He had two genteic tests. One was only 97 of the genes and then the full panel two and a half years ago. He had number of chest xrays too. Finally in Aug. he had a NPD done and in one nasal passage he showed cf and the other one didn't. After having two lung infections back to back and both of them they see in CF patients. My son's Pulm dr. contacted the CF dr at Johns Hopkins that my son went to in Aug. and that is when she mentioned to the pulm dr about a second write up on my son. Where she stated he does have CF. It took a long time, but just keep up with all the dr's. Keep going in for follow ups and if he is coughing again make sure they take samples and test it. The dr we started seeing 2 and a half yrs ago was the first dr to ever take a mucus sample. She is the first dr to give him meds for his cough. It is crazy that we lived so long hearing him cough and this dr knew what he needed to help him stop coughing. It is a long hard road, but I hope you get the answers you are looking for.

 

[Dizzy16]

My son is not your black and white CF case. He had 5 sweat tests since he was 18 months old. He had two genteic tests. One was only 97 of the genes and then the full panel two and a half years ago. He had number of chest xrays too. Finally in Aug. he had a NPD done and in one nasal passage he showed cf and the other one didn't. After having two lung infections back to back and both of them they see in CF patients. My son's Pulm dr. contacted the CF dr at Johns Hopkins that my son went to in Aug. and that is when she mentioned to the pulm dr about a second write up on my son. Where she stated he does have CF. It took a long time, but just keep up with all the dr's. Keep going in for follow ups and if he is coughing again make sure they take samples and test it. The dr we started seeing 2 and a half yrs ago was the first dr to ever take a mucus sample. She is the first dr to give him meds for his cough. It is crazy that we lived so long hearing him cough and this dr knew what he needed to help him stop coughing. It is a long hard road, but I hope you get the answers you are looking for.

 

[Printer]

Dizzy:

Your son does not need to stop coughing, he needs to cough. Coughing is his friend. Coughing brings up the stuff in his lungs and reduces that damage that would occur to his lungs were he not to cough. If you wish he can continue to see his pulmologist but he MUST be seen at least 4 times a year at an APPROVED CF CLINIC.

Hopefully, he will cough for a very long time. The alternative to him NOT coughing IS NOT GOOD.

Bill

 

[Printer]

Dizzy:

Your son does not need to stop coughing, he needs to cough. Coughing is his friend. Coughing brings up the stuff in his lungs and reduces that damage that would occur to his lungs were he not to cough. If you wish he can continue to see his pulmologist but he MUST be seen at least 4 times a year at an APPROVED CF CLINIC.

Hopefully, he will cough for a very long time. The alternative to him NOT coughing IS NOT GOOD.

Bill

 

[Printer]

Katie:

Your son needs to have a FULL CF SEQUENCING. Now when they drew blood if MAY have been for that test. If it was it will take about 16 weeks for you to get the results. I know it is difficult but you need to be patient.

Bill

 

[Printer]

Katie:

Your son needs to have a FULL CF SEQUENCING. Now when they drew blood if MAY have been for that test. If it was it will take about 16 weeks for you to get the results. I know it is difficult but you need to be patient.

Bill

 

[Printer]

Katie:

Your son needs to have a FULL CF SEQUENCING. Now when they drew blood if MAY have been for that test. If it was it will take about 16 weeks for you to get the results. I know it is difficult but you need to be patient.

Bill

 

[Printer]

Katie:

Your son needs to have a FULL CF SEQUENCING. Now when they drew blood if MAY have been for that test. If it was it will take about 16 weeks for you to get the results. I know it is difficult but you need to be patient.

Bill

 

[katie4byz]

Thank you, he has has bloods taken that are apparently screening for 80% and will be about 8weeks, am very knew to all this and have no idea about cf other than the bits am reading online so don't know what to ask or what they are screening him for, how and who do I ask about the cf sequencing? It is very hard I just feel that if its CF he has missed out on years of treatment which in therory could be worse for him and feel angry about this when he has coughed everyday and brought stuff up for 9years and nobody has picked up on it that its not normal.
Whats an NPD and how does that confirm CF? seems like you really have been through the mills as well dizzy.

 

[katie4byz]

Thank you, he has has bloods taken that are apparently screening for 80% and will be about 8weeks, am very knew to all this and have no idea about cf other than the bits am reading online so don't know what to ask or what they are screening him for, how and who do I ask about the cf sequencing? It is very hard I just feel that if its CF he has missed out on years of treatment which in therory could be worse for him and feel angry about this when he has coughed everyday and brought stuff up for 9years and nobody has picked up on it that its not normal.
Whats an NPD and how does that confirm CF? seems like you really have been through the mills as well dizzy.

 

[Printer]

NPD is a nasal sailine test, I had it done and it is not pleasant. Go with the Full Sequencing if you can.

Bill

 

[Printer]

NPD is a nasal sailine test, I had it done and it is not pleasant. Go with the Full Sequencing if you can.

Bill