Newly diagnosed

[anonymous]

Tapestry, you know when you have a cold and you get the thick mucous built up in your lungs? It takes some hard work to cough it up sometimes but it's thick and green... well that is the stuff that CFers frequently cough up from their lungs. And that is the stuff that the doctors use to do a sputum culture. The thick green stuff you (or your child) coughs up is medically called sputum. Then they take it and "culture" it in a lab. What they mean by culture it is they will run test on it to see what kind of bacteria is growing in your childs lungs. Being able to pinpoint the exact bacteria growing in the lungs makes it easier to treat. They should also run a sensitivity panel on it to test for what kind of antibiotics it is most sentitive on.

I have to applaud you for being your daughters advocate in this situation and not give her medication that is not recommended for children her age. You will find that you have to do your research because doctors aren't always right and they don't know everything. I have heard that the TOBI has caused some hearing problems in young children so you have to do what you feel most comfortable with.

Sue, no hard feelings. I speak my mind a lot on this site, but I feel it is really important to take credit for what you write and I always sign my name-even though I always forget to sign in.

 

[anonymous]

ok the cat just stepped on the computer and posted for me, wow that was really a murphy's law! Anyways, Im sorry somebody said that to you, you need to do what is best for your family and your child in your particular situation. Only you know best.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

Hi Tapestry, a sputum culture is a very simple cotton swab longer in length and they gently swab the back of her throat untill she gags just a little, not harmfull at all. They then take that spit and culture it. ( let it grow to see if it has any psuedomonas or aspergillas). Takes a few days to get the results , and just as effective. bronchoscopy is a last resort item. They will normally do broncho for suctioning puposes, while they are down in her lungs collecting CULTURES, they are also suctioning out her lungs, but this can also have complications. Not sure if you have done some reading on this procedure, but they have to sedate the child and then go through her nose with suction tube and cameras. My son had one done, only because he was in the hospital already, suffering from seriously thick mucus that wouldn't move no matter what we did. They did this procedure and it helped because they we were able to remove alot of the mucus. he was breathing alot better after. But it did leave some scarring and my Dr's said that it's not recommended for purposes other than severe mucus build up that effects the breathing severly. I guess the smartest thing I have learned is to ALWAYS get a second opinion. No one is a specialist in this field, because everyone is different.

And as far as the cost of meds...Whewwww, TOBI can run $3500.00 for a 30 day supply, Pulmazyme can run $2500.00 for a 30 day supply. and also this one is for everyone, if you notice that albuteral is just to much to handle for your child then ask your Dr @ xoponex same thing as albuteral but less wired side effect.

 

[anonymous]

Some advice for when your child is older. Encourage them to participate in sports and never let them think they cant do something because they have cf. I am 20/m with cf and i regularly go rock climbing, repelling, and white water rafting. I plan on sky diving this summer. I would agree taking your child out of day care, but be careful to not coddle her as she grows older.

I have met too many parents who home school their cf children in fear of infection or ridicule. I just dont believe it is healthy to coddle a cf child.