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HTS ineffective
- Thread starter Havoc
- Start date
imported_Momto2
New member
Hmm, thats really interesting. I know the HTS mixed with albuterol has been very helpful personally, whereas every other single CF med that's come out in the past two decades (tobi, pulmozyme, etc) has been ineffective or made me worse. I am pretty darn skeptical about stuff until I try it myself. Wonder if the onset of puberty/hormonal changes make significant difference in specific med effectiveness.
imported_Momto2
New member
Hmm, thats really interesting. I know the HTS mixed with albuterol has been very helpful personally, whereas every other single CF med that's come out in the past two decades (tobi, pulmozyme, etc) has been ineffective or made me worse. I am pretty darn skeptical about stuff until I try it myself. Wonder if the onset of puberty/hormonal changes make significant difference in specific med effectiveness.
rosesixtyfive
New member
My son is two and I do believe we will still use it. If there's a chance it would postpone lung damage, we're going to keep it in the schedule of daily meds.rosesixtyfive,mother of Sam (DDf508, 2 years old)
rosesixtyfive
New member
My son is two and I do believe we will still use it. If there's a chance it would postpone lung damage, we're going to keep it in the schedule of daily meds.rosesixtyfive,mother of Sam (DDf508, 2 years old)
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rosesixtyfive</b></i> My son is two and I do believe we will still use it. If there's a chance it would postpone lung damage, we're going to keep it in the schedule of daily meds. rosesixtyfive, mother of Sam (DDf508, 2 years old)</end quote>
That study pretty much says it's not worth its salt. IF it was my child (which isn't not) I wouldn't put them through it. I'd rather let them have that 10-15 minutes playing OUTSIDE.
That study pretty much says it's not worth its salt. IF it was my child (which isn't not) I wouldn't put them through it. I'd rather let them have that 10-15 minutes playing OUTSIDE.
Incomudrox
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>rosesixtyfive</b></i> My son is two and I do believe we will still use it. If there's a chance it would postpone lung damage, we're going to keep it in the schedule of daily meds. rosesixtyfive, mother of Sam (DDf508, 2 years old)</end quote>
That study pretty much says it's not worth its salt. IF it was my child (which isn't not) I wouldn't put them through it. I'd rather let them have that 10-15 minutes playing OUTSIDE.
That study pretty much says it's not worth its salt. IF it was my child (which isn't not) I wouldn't put them through it. I'd rather let them have that 10-15 minutes playing OUTSIDE.
I would ask you doc to review the study and advise. This isn't about chances, it's about cold hard science and what's best for your son. In this case the science does not support the treatment. Furthermore, HTS is known to cause bronchospasm in some patients, which I'm sure your 2yo could not articulate to you. You may well be inadvertently doing more harm than good.
I would ask you doc to review the study and advise. This isn't about chances, it's about cold hard science and what's best for your son. In this case the science does not support the treatment. Furthermore, HTS is known to cause bronchospasm in some patients, which I'm sure your 2yo could not articulate to you. You may well be inadvertently doing more harm than good.
Incomudrox
New member
The more coughing (induced by bronchospasms from HTS that isn't needed) WILL cause bronchiectasis over time.
Incomudrox
New member
The more coughing (induced by bronchospasms from HTS that isn't needed) WILL cause bronchiectasis over time.
Hmmm...I would tend to agree with the viral component more often causing exacerbations in young children before bacterial exacerbations thus yielding similar results between placebo and HTS. What this study admittedly doesn't and can't report upon is projected lung health of these children. They may be healthier ten years down the road as a consequence of HTS use and still be more prone to a viral excerbation vs bacterial unlike the "older" CF patients who experience more bacterial complications. Seems logical to me to keep with it...DD is only taking 3% HTS.
Hmmm...I would tend to agree with the viral component more often causing exacerbations in young children before bacterial exacerbations thus yielding similar results between placebo and HTS. What this study admittedly doesn't and can't report upon is projected lung health of these children. They may be healthier ten years down the road as a consequence of HTS use and still be more prone to a viral excerbation vs bacterial unlike the "older" CF patients who experience more bacterial complications. Seems logical to me to keep with it...DD is only taking 3% HTS.
rosesixtyfive
New member
I will certainly talk to my doctor about it. I definitely want to keep him safe. Sam cultured pseudomonas at 5 months old. He is now 2 years old and has been clear for a while. The doctors put him on .7% because of his early pseudo cultures. (Along with an active schedule of Cayston/Tobi and pulmozyme). He had been on .3% since three months old. Maybe we should at least switch back to .3%.HTS does not make him cough. Is that weird? And hehas neverproduced sputum, rarely even has a runny nose at this time. If he has a cold, he runs clear mucus for about 10 days and then gets over it on his own. I just like that HTS is supplying some moisture and salt to his lungs.Oh, and don't worry about HTS takingup his play time. He does it while he does his vest treatment. That is something he must do anyway.rosesixtyfivemother of Sam (ddF508, 2 years old)
rosesixtyfive
New member
I will certainly talk to my doctor about it. I definitely want to keep him safe. Sam cultured pseudomonas at 5 months old. He is now 2 years old and has been clear for a while. The doctors put him on .7% because of his early pseudo cultures. (Along with an active schedule of Cayston/Tobi and pulmozyme). He had been on .3% since three months old. Maybe we should at least switch back to .3%.HTS does not make him cough. Is that weird? And hehas neverproduced sputum, rarely even has a runny nose at this time. If he has a cold, he runs clear mucus for about 10 days and then gets over it on his own. I just like that HTS is supplying some moisture and salt to his lungs.Oh, and don't worry about HTS takingup his play time. He does it while he does his vest treatment. That is something he must do anyway.rosesixtyfivemother of Sam (ddF508, 2 years old)
rosesixtyfive, just to be clear Sam is not on HTS if he is inhaling anything below 3-9%. It's just regular saline. Most of us have been inhaling .9% (the salinity of our tears FYI) for our whole lives. This could be the best thing for me. As others have mentioned induced coughing may not be the best thing especially if it's not resulting in mucus clearing but only bronchospasm. Regular coughing (as opposed to huff coughing) causes a back draft for pressure that pushes small air bubbles forcefully backwards into the the smallest of airways trapping air and mucus. This eventually leads to bronchiactisis.
rosesixtyfive, just to be clear Sam is not on HTS if he is inhaling anything below 3-9%. It's just regular saline. Most of us have been inhaling .9% (the salinity of our tears FYI) for our whole lives. This could be the best thing for me. As others have mentioned induced coughing may not be the best thing especially if it's not resulting in mucus clearing but only bronchospasm. Regular coughing (as opposed to huff coughing) causes a back draft for pressure that pushes small air bubbles forcefully backwards into the the smallest of airways trapping air and mucus. This eventually leads to bronchiactisis.