My son ended yet another 3 month treatment of topi and cipro 3-4 weeks ago before that he was in the hospital for two weeks because the two 3 month treatments before hand didn't work. Now we are back to coughing every night needing inhaler close to ten puffs to fall back asleep and now after his pulmozyme and vest machine he goes to bed but the past two nights he had been coughing for 1-2 hrs straight and coughing to the point of somewhat gagging. We go to the docs tomorrow are we looking at another hospital stay or going back on a 3 month tobi cipro again?
Tobi treatment didnt work
- Thread starter BrycesMom
- Start date
TreasureGoddess
Member
If your son can't sleep on the pillow, think of putting the head of his bed up on wooden blocks, even just a 3" angle makes a HUGE difference in drainage and quality of sleep. I hate those nights of just praying your kiddo can stop coughing for more than 30 seconds at a time so he can drop to sleep....sometimes we go back to old school methods to work with the medical stuff......teaspoon of honey, very warm wet cloths held against the chest (like an old fashioned chest plaster), or if the kid gets chilled from the wet when it cools, put hot towel in ziplock bag and hold against chest & one on back (make sure not too hot so no burns), good old vicks vapo-rup on the soles of his feet, hot steamy showers before bed, or sitting in the bathroom breathing in the hot steam before bed....
Ask what options (cayston?) or other med combos are available. Can they try a culture against other meds to see if there are other options? Has the culture changed since the one before treatment, are they able to judge whether the meds are working at all?
Good luck and hang in there. Keep asking questions! If you go for another hospital stay, will they be using different iv meds than the last time? If not, why do they expect it to work this time when it didn't the last? We sat in a program that used ONE main type of IV med for all cf excaberations and when we moved to a new center, were amazed that they treat with a combo of iv meds that actually work against what my kid cultured. Seems logical, but not a lot of centers do that. Does the CF team work with an infectious disease team to come up with the meds plan? Ask again.
Ask what options (cayston?) or other med combos are available. Can they try a culture against other meds to see if there are other options? Has the culture changed since the one before treatment, are they able to judge whether the meds are working at all?
Good luck and hang in there. Keep asking questions! If you go for another hospital stay, will they be using different iv meds than the last time? If not, why do they expect it to work this time when it didn't the last? We sat in a program that used ONE main type of IV med for all cf excaberations and when we moved to a new center, were amazed that they treat with a combo of iv meds that actually work against what my kid cultured. Seems logical, but not a lot of centers do that. Does the CF team work with an infectious disease team to come up with the meds plan? Ask again.
They did a culture so we are waiting to see what it comes up with. I work third shift because that's only position I can get so it greatly diminishes what I can do. The only meds we have tried are cipro and tobi. Another thing it could be is MRSA. Thanks for the tips will have to try some on the weekends.