Pseudomonas, how old when you 1st got it?

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anonymous

New member
I read so much on this board about Pseudomonas (hope I spelled it right). My daughter is 9 months old with CF, diagnosed at 3 months after a long hospital stay!!! It all started with severe acid reflux. She apriated into her lungs and ended up with a Nissen stomach surgery. We went home from the hospital after a 2 week stay for all of that only to go back two days later with more respiratory problems and then finally got the CF diagnosis. We are learning to live with it and handling all the meds and treatments pretty well, but I am really worried about Pseudomonas. She had to be on a ventilator for a while in the hospital and cultured Steph Pneumonia ( I know I spelled that wrong!), but they have not done any cultures since then. We visit our CF Clinic in Fort Wayne, Indiana every three months and she is just getting over a cold bug that required Augmentin.

ANyway, back to the original question. How old were you or your child when you got Pseudomonas? Is there anyone out there that has never gotten it? Also how oftern does your CF clinic culture for bacterias and how exactly do they do it?

Thanks in advance for all replies!

Becky, Mom to Nathan 3 w/o CF and Hayley, 9 months w/CF
 
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JordsMum

New member
Hello!

I've just joined! <img src="i/expressions/face-icon-small-happy.gif" border="0">

My son got pseudo for the first time this year.. just before his twelfth birthday. He seemed to get rid of it (3 weeks oral cipro, 3 months neb Colomycin) then grew it again in Sept jsut as he was going to come off the neb.. <img src="i/expressions/face-icon-small-sad.gif" border="0">.. so maybe he never got rid at all! So then he was put on 3 months of oral cipro.. and stayed on the neb!

Is anyone else on here from the Uk?

Look forward to meeting you all!

Clare x
 
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allie1

New member
My daughter's doctor does a throat culture every 3 months when we have her check up. They take a swab and "tickle" the back of her throat with it. She REALLY hates it!!! She is 3 and has not yet cultured pseudomonas. I'm so paranoid about her getting it b/c I know it can happen at any time. It's scary<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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JordsMum

New member
Hi Allie

I know how you feel. I felt like I have waited my son's whole life for pseudo to appear.. and then it did.. and I felt cr*p for days.. and everyone was acting really shocked and not knowing how to deal with it.. and then I thought "This is stupid! He's not even ill! He is still swimming just as fast and as much as he was before the damn pseudo grew!" And his lung function, weight, height etc are all fantastic..

And then I joined a forum like this one (based in the UK) and I read posts form people who had been growing pseudo on and off for 30+ years.. and not much difference in their lung function in all that time. (Although I know maybe these are the exception rather than the rule.) And there are parents whose children have grown it years ago.. and not since..

I think the best policy is to kind of *expect* it to turn up sooner or later (after all it is on every breath we all take.. it just needs a 'way in' to the lungs and sometimes finds it).. take some precautions but don't be too obsessive.. and not to have a mass panic if/when it does crop up. I know this is not easy.

Lots of love

Clare xx
 
A

anonymous

New member
to the person who started this post.. i would ask the dr at every clinic appt to do a throat culture.. its simple and its better to catch it early...

Melissa
 
A

anonymous

New member
I think I was about 13 when I 1st cultured it. Sometimes I do, some times I don't. I use Tobi and pulmozyme and it helps keep things under control.
Debbie
23 w/ cf
 
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NoDayButToday

New member
I was around 4 or 5 years old when I first cultured pseudomonas. Most clinic do a sputum culture at every visit to see what bacterias are growing. For older people, this is just done by coughing up mucus. But younger kids who can't cough properly yet usually get a throat swab. My mom says I HATED the throat swabs, so she used to practice coughing with me, which I didn't mind since it meant no throat swab.
 
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anonymous

New member
I cultured it at 7 years of age & I'm now 38. I had a pretty normal childhood with playing sports, etc. so it really didn't slow me down much. When I got a cold, it was tough, but I'm sure it's that way with all CF children.
Lynda
 
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anonymous

New member
Don't worry so much!!!
I am 29y/o fem cfer and got Pseud at about 6yo. Am very healthy, very happy and loving life... Instead of worring about Pseud, keep your child active - swimming clubs, tickling whilst upside down on monkey bars (that helped me thru whooping cough at 12y/o), running outside etc. Personally, i think the worst thing for your s=chiuld would be playstation, Xbox, gameboys etc - no exercise involved
Keep them active and eating very well...
 
A

anonymous

New member
First time with our daughter was 4 months old....I thought for sure this was the worst of the worst, but with 1 yucky hospital stay and many months of TOBI, she is doing well....thankfully! We were told she was very young to get it, but that it wasn't the end of the world now. I still pray for her every day and thank God that she is doing well! She is only 4, but I do believe that she will live for the cure!

Different subject, but, have you all seen the new blue "breath" bands for sale through the CF Foundation? AWESOME!!! I am going to buy them and give them to all my friends and family!! <img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0">
 
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Milla21

New member
i got pseudo when i was 6 months and have had it ever since. (i'm 20 now) i guess i dont really know how much its affected me cos i've had it forever but i'm doing pretty well i think! i definitely dont think its the worst thing in the world.
 
A

anonymous

New member
Hi There,
My son cultured Pseudomonas at 10 months old.
He wasn't unwell at the time but by pure luck I asked for a throat swab after finishing a course of antiobiotics for Staph.
We did 14 days IV TObi and 2 months of nebulized TOBI after that.
He hasn't cultured again in the last 9 months and they don't expect him to culture it again for a while (hopefully!).
I was terrified when he cultured them but, the treatment he received was awesome and they were so aggressive in trying to eradicate it for as long as possible that I really feel a lot better about the whole thing.
Rebekah
Mother to Matt 19mths w/cf and baby on the way wo/cf
 
A

anonymous

New member
I'm sorry to hear that little Hayley has had so much trouble and suffered. My son Noah was diagnosed with CF at 3 weeks old and Psuedos at 4 months old. Thank God, no IV. He did 3 weeks of Cipro and is on his last month of Tobi. He will get tested to see if it is gone after the first of the year. I guess his doc wants him to do IV treatments if it isn't gone. He is growing big and sounds great. I only have a few concerns. All in all, he will survive, he is a strong little boy.
 
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Liza

New member
Hi I have two teen girls w/CF. My oldest was diagnosed the week before my youngest was born. She was 3yrs old. She didn't culture for pseudomonas until she was 7yrs old. My youngest didn't culture for it until she was 10 almost 11 yrs old. Neither of my girls were on any inhaled antibiotics for pseudomonas until recently. My oldest took only Pulmozyme (not for Pseudo) starting at age 8, and started a rotation of Tobramycin when she was 12yrs. (we were stationed in Germany at the time and TOBI wasn't available) She did the 28 on, 28 off cycle. At age 16 we stopped the TOBI and went with Colistin (it irritated her throat) then later alternated Coly. with Gent. That is what she does now. The younger one didn't start Pulmozyme until she was 11yrs and has only done TOBI twice. Once two years ago and once just a couple of months ago.

Liza
(mom of 2 teen girls w/CF)
 
A

anonymous

New member
Liza,
Do you find that the gentamycin works for your daughter & I assume it's the inhaled type? I was on it for years, then quit when it combined w/ pulmozyme caused me to cough up blood (it may have only been the pulmoz I couldn't handle). Anyway, a few years later, I asked my dr about being put back on gentamycin & he acted like it wouldn't be effective anymore (not strong enough). Sometimes I don't always agree w/ Dr, but assume he knows more than me<img src="i/expressions/face-icon-small-confused.gif" border="0"> That's why I was curious if it worked for you.
Does your daughter notice a shortness of breath w/ either the coly or gent?
 
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Liza

New member
HI, Sorry it's taken me so long to reply. She has noticed a difference since doing Gent. Since she started Gent she has not been on IV antibiotics. It's been about a year and a half now that she has been on it alternating with Coly. April will make 2 yrs. She has not compained of any shortness of breath. She had been on it once before way back when she was about 8 or 9. Only for a short time, not a regular thing. She mentioned it to her docs here after getting her port put in and complaining about TOBI. She, not us, remembered that she had been on it when we lived in AZ. She asked why could she not use it again. It also happened to be about the same time they had done a new DNA study to find her mutations. She hadn't been typed or what ever it is they do to find out what mutations you have since she was diagnosed in 1990. Anyhow... The doc agreed to try it out because of the mutations she's got (they assume both my girls have the same by the way) have a history of responding well to Gent. So here we are. TOBI irritated her throat after 2 years . Trying to think of those mutations and can't recall them. Bad mom I know. I just know they are not delta 508.

Liza
(mom of 2 teen girls w/CF)
 
A

anonymous

New member
My son was 11 months old when he first got pseudomonas. We spent 2 weeks at the CF hospital. He is now 3 and has not had it since then!

Jodi, Mom of 3 y.o Tucker w/cf
 
A

anonymous

New member
My daughter who is now just about to turn 2yrs old has cf and was diagnosed when she was a month old through hospital screening. She first cultured pseud when she was 16 months old...she did three weeks of oral cipro and hasn't cultured it again and hopefully won't for a long time. she gets cultured every 8 weeks at our clinic.

Jennifer, Mom to Kimmie 22 months
 
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Joblazer86

New member
I cultured pseudo when I was 8 or 9 and have cultured it ever since and a couple different strands. Also have cultured mrsa since I was 15
 
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