Message Boards for the CF Trust

Replies: 6 Pages: 1

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

help
Posted: 04-Dec-2006 16:54

Reply

hi,
just looking for a bit of direction please...
my son who is 2 was seen by a consultant last week who suggested he could have CF. We are waiting for a sweat test but there doesn't seem to be any urgency about the appointment? We were dropped with the bombshell last Wednesday and I spent Thurs, Fri and today trying to get an appointment with the 'special investigations nurse' but to no avail. I am keen to get this done and wondered what everyone else's experience has been? I want it doing YESTERDAY...
Can i pay privately somewhere?
Lisa x

alibozo

Posts: 15
From: sevenoaks
Registered: 05-Nov-2006

Re: help
Posted: 04-Dec-2006 16:59

Reply

Hi my son was diagnosed privately, The Paediatrician was DR Fysh who you can contact through the Portland Hospital in London. He had the test one morning and he called us that night!! Good luck our thoughts are with you!!

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: help
Posted: 04-Dec-2006 17:01

Reply

Thank you for that.
And thanks for your kind thoughts.
Lisa x

sally 1

Posts: 128
From: oldham
Registered: 09-Nov-2006

Re: help
Posted: 04-Dec-2006 17:34

Reply

I imagine your local cf centre would be Booth Hall Childrens Hospital, Manchester. the 2 consultants there are Prof Tim David and Dr Lena Patel..both lovely people and very caring. The phone number is 01617957000

All the best

sal

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: help
Posted: 04-Dec-2006 19:05

Reply

Hi Sal,

Thats great. Thanks so much for your help.
Take Care,
Lisa

kelly

Posts: 15
From: Berkshire
Registered: 05-Dec-2006

Re: help
Posted: 05-Dec-2006 20:11

Reply

hello my names kelly and i found out about 5 weeks ago that my 9 week old baby could have cf. we had the results from the blood screening on the monday afternoon, on the tuesday at 9am my baby had a sweat test done. We left the hospital at lunch time with the results of the test, we'd been taught how to do the physio and they had explained all the medication. this was all done on the NHS and the specialist had come in on his day off to meet with us. I think the way you've been treated is terrible. I hope that you have managed to get the test done and the outcome is good
x

rustycharlotte

Posts: 9
From: burnley
Registered: 04-Dec-2006

Re: help
Posted: 05-Dec-2006 22:02

Reply

Hi Sal,

I am writing to say a big thank you to you for the information you gave me last night.
I emailed Professor David last night and he rang me first thing.
What a man!!!!
He has managed to organise for the sweat test and a blood test to be done on the 18th December - nearly two weeks off but at least we have a date!!!
Thank you thank you thank you!!!!
Lisa and Owen x x