My 3yr old has had pseudomonas since 6mths old, Im wondering what treatments other kids do that i could do to enhance her health adn minimise recurring infections - we do the physio every day comprising the patting and pep masks, trampolining and blowing bubbles and general 3yr old activities. Is pseudomonas a really bad thing at this age?
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Pseudomonas management
- Thread starter Aussimum
- Start date
Hi,
We have just been dealing with a pseudomonas diagnosis in our 2 year old. When we found out the doctor put her on two weeks of oral ciproflaxin and 3 months of inhaled tobramycin (2mL of tobra. 2X/day). We don't really know what to expect and are thinking that our 4 year old may show it on her throat culture at the next appointment. Does anyone have 2 children with CF where only one has pseudomonas?
Tammy (Mommy of 2 girls with CF)
We have just been dealing with a pseudomonas diagnosis in our 2 year old. When we found out the doctor put her on two weeks of oral ciproflaxin and 3 months of inhaled tobramycin (2mL of tobra. 2X/day). We don't really know what to expect and are thinking that our 4 year old may show it on her throat culture at the next appointment. Does anyone have 2 children with CF where only one has pseudomonas?
Tammy (Mommy of 2 girls with CF)
thefrogprincess
New member
My brother and I have CF and he's always been a little worse off. When we were kids he got psudemonus (I butchered that spelling huh?) and gave it to me. It's pretty much inevitable that if one has it the other will get it. But she'd get it even if her sister didn't have cf anyway. It just one of those facts of CF.
Hi Tammy,
I have two girls with CF. One has tested positive for Pseudo and MRSA. It has been over a year since discovered and my other daughter is still negative. The Dr's have said the likelihood of both having it eventually is extremely high. We don't keep them apart but we do keep toothbrushes in separate drawers and they use separate hand towels in the bathroom along with the other obvious precautions, i.e. don't share cups, etc...
Despite the diagnosis of Pseudo and MRSA, my daughter has had no problems.
Good luck!
Debbie Mother of 2 daughters with CF. 12 & 13 yrs old.
I have two girls with CF. One has tested positive for Pseudo and MRSA. It has been over a year since discovered and my other daughter is still negative. The Dr's have said the likelihood of both having it eventually is extremely high. We don't keep them apart but we do keep toothbrushes in separate drawers and they use separate hand towels in the bathroom along with the other obvious precautions, i.e. don't share cups, etc...
Despite the diagnosis of Pseudo and MRSA, my daughter has had no problems.
Good luck!
Debbie Mother of 2 daughters with CF. 12 & 13 yrs old.
They haven't offered inhaled tobramycin to us yet , I dont think they give it to under 5s unless they are in a trial in Oz, but I could be wrong? Has anybody in Oz had inhaled Tobra with their under 5s? I wouldn't mind trying it as she normally uses Colistin? Is Tobramycin an American drug?
Think Tobi is american - actually originally funded by research grant from Bill Gates! I live in Ireland and my daughter has been on Tobi since the age of 5 and she is now almost 8. She has pseudomonas aerginosa (2 or 3 plusses) since then and it never goes away. She is on Tobi one month and Colomycin the next through nebuliser. She has no real symptoms i.e. no cough but cant seem to clear the infection - has anyone any tips on helping to keep pseudo suppressed (I know it can never be fully cleared but would rather it wasnt as active)
Kate
3 kids, G8 w/cf, G5 w/o cf and B2 w/o cf
Kate
3 kids, G8 w/cf, G5 w/o cf and B2 w/o cf
Colistin is actually used as the secondary inhaled drug in the US when tobi becomes somewhat ineffective or someone starts to build a slight resistance to it.
Also, there is no medical fact to this but my husband experienced an adverse reaction to the colistin when he used it. His testosterone level plummetted, his FSH and LH levels also became non-existent. This all occured right before an in-vetro procedure we were suppose to have, and couldn't proceed because his body wasn't producting testosterone/LH/FSH and therefore no sperm. The doctors are convinced it is something other than the colistin, but the problems started about a month after the very first use, and then when he quit using it-they started to normalize about 1-2 months later, so I really dont care what they say or think, I know my gut. As per the colistin leaflet that is given with the medication, there have been NO studies on how it effects reproduction-so be careful. Both Tobi and Pulmozyme (not an antibiotic) list the results of reproductive tests on mice who have used 20 times the prescribed dose. I have contacted the FDA, but since the drug is already on the market they aren't really willing to do anything about it. I guess it will have to become a big issue like vioxx-for example-before any of the big people will really care.
Julie (wife to Mark 24 w/CF)
Also, there is no medical fact to this but my husband experienced an adverse reaction to the colistin when he used it. His testosterone level plummetted, his FSH and LH levels also became non-existent. This all occured right before an in-vetro procedure we were suppose to have, and couldn't proceed because his body wasn't producting testosterone/LH/FSH and therefore no sperm. The doctors are convinced it is something other than the colistin, but the problems started about a month after the very first use, and then when he quit using it-they started to normalize about 1-2 months later, so I really dont care what they say or think, I know my gut. As per the colistin leaflet that is given with the medication, there have been NO studies on how it effects reproduction-so be careful. Both Tobi and Pulmozyme (not an antibiotic) list the results of reproductive tests on mice who have used 20 times the prescribed dose. I have contacted the FDA, but since the drug is already on the market they aren't really willing to do anything about it. I guess it will have to become a big issue like vioxx-for example-before any of the big people will really care.
Julie (wife to Mark 24 w/CF)
Hi there,
My son is on a research in New Zealand which is also conducted in Aussie as well in Tobi under 5's.
When he cultured Pseudo at 10 months old, he was hospitalized and given Tobi via IV for 2 weeks and then followed by 2 months Nebulized Tobi.
We were supposed to also do the Cipro in conjunction but it was to foul for him to tolerate.
He is nearly two and hasn't cultured Pseudo since the last occassion.
I cannot exactly remember the exact dose he took with the Tobi but we had to follow quite intrinsic testing on his ears before and after as this can be a side effect if the dose isn't correct.
Good Luck!
Rebekah Mother to Matt 23mths w/CF
My son is on a research in New Zealand which is also conducted in Aussie as well in Tobi under 5's.
When he cultured Pseudo at 10 months old, he was hospitalized and given Tobi via IV for 2 weeks and then followed by 2 months Nebulized Tobi.
We were supposed to also do the Cipro in conjunction but it was to foul for him to tolerate.
He is nearly two and hasn't cultured Pseudo since the last occassion.
I cannot exactly remember the exact dose he took with the Tobi but we had to follow quite intrinsic testing on his ears before and after as this can be a side effect if the dose isn't correct.
Good Luck!
Rebekah Mother to Matt 23mths w/CF
Tammy -
My 18th month-old on cultured pseudomonas six months ago. He has four clean cultures since them (we went in monthly to check). My three-year-old daughter never has cultured pseudomonas. She has always cultured staff while my son has never cultured staff.
Sharon, mom of Sophia, 3.5 and Jack, 18 months both with cf
My 18th month-old on cultured pseudomonas six months ago. He has four clean cultures since them (we went in monthly to check). My three-year-old daughter never has cultured pseudomonas. She has always cultured staff while my son has never cultured staff.
Sharon, mom of Sophia, 3.5 and Jack, 18 months both with cf
My partner didnt' want our daugher to participate in the broncopsopy? trial so we don't get the inhaled tobi after the 2 weeks IV, but everyone Ive spoken too sings its praises and says it has cleared pseudomona and other bacteria completely - good luck for the rest of the trial. My daughter too used to throw up her cipro, but I found that if I crushed it and put it inside an empty enzyme capsule, she couldnt taste it so she swallowed it with no problems.
My partner didnt' want our daugher to participate in the broncopsopy? trial so we don't get the inhaled tobi after the 2 weeks IV, but everyone Ive spoken too sings its praises and says it has cleared pseudomona and other bacteria completely - good luck for the rest of the trial.
Thanks for all the information. My older daughter (4 years old) has grown staph before and was treated with inhaled tobramycin. My 2 year old who cultured pseudomonas had not shown any signs that anything was abnormal, it just showed up on a throat swab. The ciproflaxin was in a liquid form. She hated the taste of it but took it reluctantly.
Sharon, it sounds as if your two children are the same age difference as my two, both with CF. The age difference between my girls is 26 months.
Tammy (mommy of 2 beautiful girls with CF)
Sharon, it sounds as if your two children are the same age difference as my two, both with CF. The age difference between my girls is 26 months.
Tammy (mommy of 2 beautiful girls with CF)