pseudomonas

[anonymous]

I have a six month old with CF that I just found out cultured pseudomonas for the first time. I think he is going to be admitted tomorrow for IVs. How long does this treatment usually last? Does it make them go away? He seems completely fine, but I am terrified that he is now going to go downhill.

Thanks,
Carrie

 

[thelizardqueen]

Every CFer eventually cultures Pseudomonas. Its enivitable. I cultured Pseudo when I was 9 years old, and I still have mild lung involvment to this day. Pseudo can be erradicated if you catch it at a young age. If you don't culture it for I believe 3 months straight, then you can get rid of it. Once it colonizes then you can't get rid of it. Your son isn't going down hill because he has pseudo. Many CFers live somewhat normal lives with it. As for IVs - I'm not sure, as I've never been put on IVs for pseudo. I usually do 2 weeks of Cipro or Tobra. Have you talked to your doctor about taking oral or inhaled meds for the Pseudo before trying IVs?

 

[MissAudrey]

I had mild psuedomonas when was 11 and I just went on my usual 2 weeks of Flucloxacillin and Ceftazadime IV's. I haven't had it back since then, now I just get admitted for pneumonia or whatever.

I hope your baby gets better soon!

Take care,
Phoebe xx.

 

[anonymous]

Do you think since he caught this early that he is going to have a severe case of CF? I'm very scared. Carrie

 

[thelizardqueen]

Just because he's caught it early on doesn't necessarily mean that he'll have a "severe" case. I don't suppose you've had him gene typed have you? What case of CF you have depends on what gene mutation you have, how diligent you are with treatments, nutrition, exercise, etc. I cultured Pseudo once when I was 4 or 5 and it went away. I didn't get it again until I was about 9 or 10, maybe a little later. Every CFer gets pseudo, its really nothing to worry about. Sure, it sucks to have it, but its not the end of the world. There's much bigger bugs to worry about then PSeudo.

 

[MissAudrey]

Aww Hun!

I'm obviously not a doctor but just from talking to the people on this site there appears to be a huge variation in the way each person is affected by their CF...I don't think that the first bug your child contracts (no matter how bad it is), can determine the state of his health for the rest of his life.

I'm sure the doctors will be able to fill you in properly tomorrow, but in the meantime you look after yourself too!

Lots of love and hugs,
Phoebe xx.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Do you think since he caught this early that he is going to have a severe case of CF? I'm very scared. Carrie</end quote></div>

There's no question that avoiding pseudo as long as possible is a good thing in terms of clinical outcomes.

That being said - it's certainly not an indication of severity.

I'm 24 years old - I've had pseudo for 21 years. My FEV1's are 98% and my CF is considered mild.

 

[3timesthefun]

Hi Carrie,

I know that pseudo can seem scary. My son just cultured positive this year for pseudo. We did 9 days of Cipro/ Tobra IV in hospital and the 2 weeks of Ceftaz and Tobra Iv at home. His last culture came back negative, yeah! I think the biggest key to eradication is early detection. Good luck.

 

[Salli]

Hi Carrie, Hope your little one gets better really soon. I feel for you as I am a first time CF mum too with a 7 month old and pseudo's sounds really scary to me but I guess thats just because it is something we are not used too - I'm sure we will get quite experienced with it all soon enough - can I ask what symptons your bubba had which led to the disgnosis?

 

[anonymous]

DS cultured pseudo at 3 months and was put on tobi nebs every other month for about 6 months. He's cultured non-mucoid and the bugs he's grown are suspeptible to a number of antibiotics. Liza aka ratatosk

 

[anonymous]

I would like to know the symptoms also. My DS cultured pseud. a month a go. NOw he is couging his heart out every morning. He IS on TOBI. But it doesnt seem to be helping with his cough.

 

[anonymous]

It could be a different issue all together. Your child could have an upper respiratory bug or the Tobi could be making him cough. I know when I sit with DS and hold his nebulizer while on tobi, I get a scratchy throat and dry nose, but I don't think either of us cough from it.

DS has cultured pseudo in the past -- but has little or no symptoms that we can tell. In fact I suspected he was growing it in his sinuses, 'cuz he tends to have more sinus/boogery nose issues and rarely coughs.

Have you increased your cpt treatments to "beat the cough out of your child". Last week DS developed a head cold and a few days later got a cough. His doctor put him on an antibiotic and told us to increase his cpt if possible. He was better within a few days.

Liza (aka Ratatosk) mom to a toddler wcf

 

[anonymous]

We are doing the vest 3x a day w/ albuetrol. He also is on Pulmozyme 1x daily & TOBI 2x daily. Folnase 2 puffs 2x daily & nasonex 1 puff each nostrail. I do believe he may have another bug or does psued. make green sputum? He has NEVER really coughed up anything until these last 3~4 days...every morning!!!!

 

[anonymous]

My son has not had any symptoms and that is why this is so surprising. We are going in for IVs later today and the doctor thinks that will get rid of it so we'll see. I am just scared this means he will have a severe case of CF because so far everything has been pretty smooth with him.

Carrie

 

[anonymous]

My son went into the hospital when he first cultured PSa at just about 1 year old. His hospital stay lasted about 2 weeks. He received IV antibiotics 4x per day that took about 30 minutes each time, but we could stroll him around while it happened because they used a portable machine for it - and for at least one of them he was asleep since they did a 24 hour schedule divided by 4. He also got 4x per day with the nebulizer and the same number of times for Chest PT. They also did bloodwork pretty often to make sure the medicine levels were in the right place. The bloodwork was by far the thing that angered him the most since it meant getting stuck with a needle; for some reason they could not draw blood through the IV line most of the times it was needed.

Everyone was as nice as pie the whole time, but it's hard not to be scared. Hang in there. We let our boy take his own toys and room decorations to help it seem less foreign; by the time we left we had 2 or 3 wagons full of stuff in that room.

He has cultured PSa twice more since then (He's now 3) and taken Tobi and Cipro for it. Who knows if it is gone or just hiding despite "clean" cultures 3 months in a row. But except for the cultures, his health is better than every other 3 year old without CF that we know.

 

[thelizardqueen]

Green sputum means infection. If its clear, then there's no infection, if its yellow/green (a fresh green) then there's an infection. Brown or dark dark green means old sputum. Culturing pseudo does not mean that you have a severe case of CF. Every CFer eventually gets pseudo. Its just a matter of when. I've had pseudo for about 15 years, and I still have mild CF and mild lung damage.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

Green sputum means infection. If its clear, then there's no infection, if its yellow/green (a fresh green) then there's an infection. Brown or dark dark green means old sputum. Culturing pseudo does not mean that you have a severe case of CF. Every CFer eventually gets pseudo. Its just a matter of when. I've had pseudo for about 15 years, and I still have mild CF and mild lung damage.</end quote></div>


I think color of sputum is also different for each patient. I have never had clear sputum, normal yellow-green for me. It is a dark green when I have an infection. When I am on anitibiotics that are killing the bacteria it is usually brownish.

 

[thelizardqueen]

Yellow/green means that there is an active bug in you. Whether its pseudo or not. Green is a sign of infection. Brown is also old sputum, so maybe when you're on meds that med is making you cough up old stuff.

 

[anonymous]

sputum color song.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.rtlyrics.com/BrownSputum.htm">http://www.rtlyrics.com/BrownSputum.htm</a>

 

[JRPandTJP]

Our son cultured pseudomonas when he was around 14 months. It made our hearts skip a beat, especially after a rough first year. We cried and were very worried.

He had a round of inhaled antibiotics (Tobramiacin, sorry about spelling) twice daily, nebulized, for 2 weeks. He is now 22 months and has not cultured it since! Most clinics are just aggressive with it the first time they culture because they don't want to give it an opportunity to set up shop. Some DR just do the inhaled as it doesn't aggravate the digestive system, some do a combo of inhaled and oral, others go right to IV. It is your choice based on what you think would be best for your baby. We went with inhaled only since it felt to us it was going directly to the site so to speak (and he wasn't showing any signs of illness) and it wouldn't mess with his GI tract. If you do oral, I would highly recommend adding acidophilus (lactobacillus) to his vitamin reginmen. It helps protect the intestinal tract and build up the "good" bacteria in the gut (flora). Culturelle is the brand we've been using since he was 4 months old and you can find it at most pharmacies or health food stores. We put it on a spoon with applesauce as if your giving enzymes, now we give it mixed in with his vitamins daily to help keep his gut healthy and lower inflamation. I believe we did 1 cap daily by the time he was 6 months old.

Hope this helps and just know that it doesn't necessarily mean any thing negative to his future. It can come and go, it can never be seen again after this, and it doesn't necessarily cause problems for all CFers in terms of chronic coughs ect.

Hang in there...

Warmly,
Jody mom of Julia 6 no cf, Ben 22 months w/cf