Marina Louise Oneill
New member
my daughter is to young for that but thanks for telling me
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Help me please!!!
- Thread starter Naomi RainbowBrite Malone
- Start date
Aboveallislove
Super Moderator
Marina,
May I ask how old your daughter is? There are several using off-label for kids under 6. If the mutation is the one I'm thinking (i.e., it is a gating mutation for which the drug will work), then the soon she can get on the better. Maybe not under 4 but I'd start pushing at around 4 for at least 1/2 a dose. Also, they are doing trials now for 2 -5 year olds and once those results come out, if safe (even if not yet FDA approved, but in process), then I'd start pushing too. The idea with the drug is to get the kids before the lung damage starts.
May I ask how old your daughter is? There are several using off-label for kids under 6. If the mutation is the one I'm thinking (i.e., it is a gating mutation for which the drug will work), then the soon she can get on the better. Maybe not under 4 but I'd start pushing at around 4 for at least 1/2 a dose. Also, they are doing trials now for 2 -5 year olds and once those results come out, if safe (even if not yet FDA approved, but in process), then I'd start pushing too. The idea with the drug is to get the kids before the lung damage starts.
Do not listen to your pediatrician. Call your local CF Center. Tell them the story. Only get the sweat test at a lab associated with the CF Center. Many labs do it wrong and you get false results. I have several overweight patients with CF. You need a sweat test, genotype (ask for emla for the needle stick), a sputum/mucous culture, and a fecal elastase. Do you have fat fingernails?
DEFINITELY go to a CF Center!
I was 'borderline' CF every time and was tested 5 times. It was only after my participation in a voluntary study that I received in the mail from the CF Foundation that they found a CF gene--and I was 25 at the time.
Six years later after an episode of hemoptysis (coughing up blood) they searched for the other gene and officially diagnosed me. I am fully pancreatic sufficient, and have trouble losing weight. Being officially diagnosed and doing treatments has made me healthier than I ever was before my diagnosis.
Good luck!
I was 'borderline' CF every time and was tested 5 times. It was only after my participation in a voluntary study that I received in the mail from the CF Foundation that they found a CF gene--and I was 25 at the time.
Six years later after an episode of hemoptysis (coughing up blood) they searched for the other gene and officially diagnosed me. I am fully pancreatic sufficient, and have trouble losing weight. Being officially diagnosed and doing treatments has made me healthier than I ever was before my diagnosis.
Good luck!
6
65rosessamurai
Guest
I'm with Printer.
CF Clinics are often approved for their testing to be accurate.
Other places may not have their systems properly calibrated or flub-up the testing and cause an inacurate reading.
CF Clinics are often approved for their testing to be accurate.
Other places may not have their systems properly calibrated or flub-up the testing and cause an inacurate reading.
Naomi RainbowBrite Malone
New member
ummm i don't understand what you mean by fat fingernails? lol
Naomi RainbowBrite Malone
New member
thank you for sharing! hopefully i don't get that bad though! I'm glad to hear that your doing good now though!