Question...Tobi prophylactically ???

[HelpCureCF]

Hi there...
Quick question...
Anyone on Tobi to keep pseudomonas away?
My daughter has not cultured this yet..(she is 14 months old) and her pulmonologist mentioned at her last visit that it's something to think about.
Interesting...still reading up on it...
Anyone doing this?...
He feels that if you do this...that pseudomonas will never have a chance to amount to anything...

 

[anonymous]

I think this has become common practice in Canada and some other places too. I know of one person with a daughter (under 2) who takes is for this reason.

 

[cdale613]

I started inhaling gentamycin, later replaced by TOBI, before I cultured PA -- I was about 8 years old when I started.

If I were you I would weigh the potential side effects very carefully, considering how young she is. I don't know how well it worked... I've cultured PA interminently for years, and ever since I first cultured it, the Dr's have always assumed I had it, even if it wasn't showing up in the culture.

If she's doing very well, I would consider holding off. If she's had some lung complications at 14 months, then you might want to consider it. With extremely young children, my personal recommendation is to be preventative, but not at the price of risking serious side effects, or developing resistance to one of the best meds for CF -- she'll more than likely need it when she's older. I'm not sure how TOBI effects infants, so of course, please talk more about this with your dr.

Are you doing airway clearance? How is her weight doing? These are two great areas of "risk free prevention" and I think that focusing in on them will help her at least as much as any drug.

Chris

25 w/ CF

 

[HelpCureCF]

Thanks Chris for responding,
She hasn't had any pulmonary symptoms at all yet !! No cough, no weezing...nothing.... We do airway clearance (with a small pink cup) twice a day for 20 minutes each time. She takes albuteral, and pulmozyme (doc feels that it's good to have everyone with CF on this as a preventative cause it breaks up thick mucus).... just started pulmozyme 2 months ago and she's doing great with it..She is 14 months old and weighs almost 22 lbs....She gained 6 lbs in the last 3 months though !!!! (her previous doctors were terrible and never checked her electrolytes ...she was vomitting 2-3 times a day for months !!!!) She only gained 1 lb from the time she was 4months-9 months old......very scary time..... What do you think? Basically she has new docs...... they fixed her electrolytes..stopped vomitting immediatly .....got her back on track....They believe that pulmozyme and Tobi are good maintance meds.... ANYONE WHO HAS A BABY WITH CF THAT HAS REFLUX AND IS VOMITTING ALOT>>>>insist that electrolytes are checked !!!!!!!! We were told over and over that it wasn't neccessary...

 

[anonymous]

DS was put on Tobi at 3 months 'cuz he had a cough/brochitis, but not PA until a few months later. Then when it didn't show up again, his doctors indicated that they usually keep patients on Tobi for a year. We thought he was supposed to go off it last year in the Fall, but his doctor wanted him on it during the winter months since he goes to a preschool and he wanted him protected from germs.

 

[anonymous]

<img src="i/expressions/nebulizer.gif" border="0">My son is only 9 1/2 months old and the doctor put him on toby because he had a very bad cough and found some virus in his throat culture. It is very hard for a parent to now that your child is not doing as good as you though. When we found out that we needed to do toby ,I cry and got depress at but then I realize that it was best for him.