Message Boards for the CF Trust

Replies: 4 Pages: 1

nixi32

Posts: 2
From: Grimsby
Registered: 04-Dec-2006

My Daughter has got CF???????????????
Posted: 04-Dec-2006 12:21

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Just a question for you people who has had all tests done and know a bit more about CF than me. My 9 year old daughter has had constant lung infections since she was 2, she has also had sinusitis for approximate same amount of time. She suffers with constant stomach ache and constipation. Although her growth rate is not a concern she is very slim which is quite different to my other two children. She recently had a bad bout of Pneumonia when I was informed that her right lung had collapsed. She was referred to sheffield and since has had a bronchoscopy which revealed some old secretions from the bottom of the lungs, these have not grown any abnormal bugs, but she is still coughing. She has had the genetic testing where it was revealed that she has got df508 gene but no other has been found. She is going back to sheffield on friday for another sweat test which proved negative when she was 4 years old. I am very frustrated as this child has not been cough free since she was 1 year old. Could this be CF???????????????

MandyL

Posts: 26
From: Lanarkshire
Registered: 06-Nov-2006

Re: My Daughter has got CF???????????????
Posted: 04-Dec-2006 12:35

Reply

Hi there, i am a mother of 2 children, 2 daughters, 1 has cf the other doesnt. I am sorry this has been going on for such a long time for you both. From what you have said to me i would think that your daughter does have cf. It sounds like she has 1 common gene which is the df508 and maybe has another gene which they cannot trace. I know a family that this has happened to, they dont know what the other gene is but they have a polish background and cf is common in Poland, Ireland and Wales is the other one i think. It is such a shame that this has not been diagnosed properly which in turn has caused the collapsed lung as she is recieving no treatment. Keep pushing for proper diagnosis as this must be properly treated. your daughter will have a slightly milder form cf( if i can say that!) compared with having either 2 df508 genes( like my daughter has) or the df508 and one of the other 17 recognised genes. I hope this gets sorted out for you really soon, keep pushing for this to be properly diagnosed sometimes these doctors need a good kick up the backside! Take care and let us know what happens. x

kayz

Posts: 18
From: hants
Registered: 28-Apr-2004

Re: My Daughter has got CF???????????????
Posted: 04-Dec-2006 12:59

Reply

I am really sorry to hear your daughter has been having so many problems.

My son was diagnosed four years ago aged 6, he had struggled with repeated chest infections since birth. He carries DF508 and one other defective gene, which was only identified last year.

I think Sheffield is a specialist CF unit, if she has not been referred to them then I would suggest you try and get in touch with them on 0114 271 7000.

If it is CF, whilst in the short term it will be hard for you, but she will get the correct treatment to help her lead a normal life. We found late diagnosis hard at first, but now we have a healthy happy son with a great future ahead of him and I hope the same for your daughter.

Kind regards
Fi

nixi32

Posts: 2
From: Grimsby
Registered: 04-Dec-2006

Re: My Daughter has got CF???????????????
Posted: 04-Dec-2006 13:44

Reply

Hi,
Thank you for replying to my message, when you said that it was common in Ireland does it create a big difference, as my mother is West Indian, but her father is half Irish. This brought up a light bulb in my head but could I be over reacting?

NorthernStar

Posts: 24
Registered: 02-Dec-2006

Re: My Daughter has got CF???????????????
Posted: 04-Dec-2006 14:27

Reply

Delta F508 is a very common gene so I would try not to panic. It is possible that your daughter has delta F508 and another CF gene (meaning that she has CF) but it is also possible that she only has the one copy of a CF gene and doesn't have CF.

I think it is one of those situations where letting your imagination run riot with fears will just wear you out - try and stay calm. There are other conditions with both sinus and lung involvement - sinobronchial diseases such as bronchiectasis and Kartagener's syndrome to name just two; both of these can also affect the digestive system but neither are life threatening.

Chin up and try to stay positive. Hopefully these investigations will ensure that your daughter gets appropriate care from here on in