pseudomonas????

[anonymous]

My dr just told us that my 2yr old contracted pseudomonas (or possiblly, their doing another test) I am still new to the CF world and it's my understanding that you can't get of it or it's nearly impossible to and that it causes damage to the lungs and increases lung disease. My question is, What can we do to slow down the lung disease besides using TOBI? Will she have to be on TOBI forever? Is TOBI safe for toddlers? I read that it can caues hearing loss?? My daughter has been in excellent health so far and I am terrified that now that her health will worsen. How do even get it? Does anyone use any kind of "natural" prodcuts to help?
Thanks

Becky
mom to emma (2yrs w/cf)

 

[CFHockeyMom]

Pseudomonas is just one of the bacteria that CFers can grow. It tends to be a bit more serious than staph in the way that it colonizes. Some Dr's believe that once you have Pseudomonas you always have it. My son has cultured for it occasionally but not all the time.

We've only been on TOBI once and that was when he was very little (under 2). All of the MAJOR antibiotics can cause hearing loss but it's my understanding that it's after prolonged use.

Natural products are ok but to fight infection you really need antibiotics. You don't want the infection to grow/colonize any more than it has to. You need to minimize scar tissue.

Ask your Dr if his/her plan is for you child to stay on TOBI or just be on it for a couple of months. If memory serves, we were on a month (28 days), off a month, then on another month. That was it, however, I do know many folks that are on it permanently - cycling on 28 days/off 28 days.

 

[anonymous]

My twin boys have been on tobi since they were 2years old. They are now 10. Mind you they have always been in poor health . They both have had hearing tests, three each if I remember correctly and their hearing is fine (well apart from the male selective hearing thing, lol). Also, its the one med that they hate taking and its a fight alot of the time to get it done. They both have it twice a day.

 

[NoDayButToday]

It IS very hard to get rid of pseudomonas, but that doesn't mean it doesn't happen. And over time, it will increase lung disease, but this is a gradual thing, and it will happen to all CFers at some point. As for TOBI- I had problems with ringing in the ears with TOBI, but this was after years of consistent use (3+ at least). Since your daughter at this point can't really communicate "I have ringing in my ear" or "I can't hear you so well", you may want to do annual hearing tests to reassure yourself the TOBI isn't affecting her hearing. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I am now 38 and have had pseudomonas since I was 7 yrs old, so while it probably never goes away, it's not the death sentence that some make it out to be. Obviously it's not something you "want" to have, but it hasn't worried me too much over the years.
I think it can be controlled with antibiotics. The reason I think Dr's try TOBI is because it doesn't cause the wear and tear on your organs such as kidneys, liver, etc that a pill form of antibiotic does--it goes straight to the lungs where the infection is.
I don't know about the hearing issue. I took TOBI for a few years and maybe noticed an occasional ringing of ears, but nothing else with my ears/hearing.
Pseudomonas is one of those things I think 90% of CFers will get, it's just about everywhere.....water fountains, hot tubs, sponges, etc. Of course, not ALL of these places have pseudomonas, but they can.

 

[anonymous]

When my son was in the hospital, he was given tobrimicin (sp?) via iv. He was given "peak" and "trough" tests to assure he wasn't given to much medicine. Is there a way to test the levels when using tobi?

 

[Emily65Roses]

The IV Tobra was managed with peaks and troughs because it can cause damage to kidneys. Someone correct me if I'm wrong, but I'm pretty sure inhaled TOBI doesn't pose much threat to your kidneys, and therefore doesn't need to be closely monitored.

 

[anonymous]

Hi Becky, I also have an (almost) 2 year old and have been in your postion myself. Feel free to email me if you would like info on how we handled things with our daughter!

kelli
kellimmyers@hotmail.com
<a target=new class=ftalternatingbarlinklarge href="http://sydneymyers-ivil.tripod.com/">http://sydneymyers-ivil.tripod.com/</a>

 

[anonymous]

Our doctor did something different when my daughter was cultured with pseudemonas. He put her on Tobi for 3 straight months (twice a day), and did a sputum culture each month. After the first month, she cultured negative. After 3 consecutive negataive cultures, he took her off the Tobi. That was 16 months ago. She has not cultured positive for pseudemonas since then.

By the way, there's not much you can do to avoid the bacteria, I think. It is everywhere -- even in dirt. There is just something about the bacteria that it will colonize the lungs of CFers, but not people without CF. (I think there is research going on to genetically modify the pseudemonas bacteria, as a way to avoid infection!)

 

[anonymous]

Becky, My daughter cultured pseud. last year when she was just 1 1/2 yrs old. She was put on Cipro for 3 weeks and hasn't cultured it again since... over a year now. My daughter had absolutely no signs of trouble and at that time was being brought to the CF clinic every 6 weeks just to stay on top of things. We were certainly lucky and still are. She is doing fabulous.
All the best to you and your little one.

Jennifer (mom to Kimmie 2yrs old w/CF)

 

[anonymous]

Becky,

The doctors found psuedomonas in my daughter around 2 yrs old. She was put on 2 consecutive months of inhaled TOBI & a month of cipro. Then, she did 28 day cycles of inhaled TOBI for 6 months. She is almost 4 and has not cultured positive for the orginal psuedomona found, but did find another one. They also treated that with one month of TOBI & the culture has not been repeated. I was also terrified that her health would diminish, but it didn't. She initially lost weight, but that is a battle for her. The way I understand TOBI and hearing loss, that the TOBI administered through the IV has a higher incidence of hearing loss, since it is traveling through the blood. Whereas TOBI inhaled is much safer, since it is being directly delivered through the lungs.

Good luck!!
Karon
Mom to Erin (3yr w/CF)

 

[anonymous]

Just wanted to warn some of you guys about the effects of Tobi. It can cause ototoxicity (hearing loss) and kidney damage. Some of you have said that it can't because it is delivered directly to the lungs and you are not getting it through the blood. Well your blood is oxygenated by your lungs - so same difference. If you are on TOBI you should still get levels done (not as often as IV) to evaluate toxicity.