Ashtons got PA

[ashton2005]

Well we just got home from getting his chest xray and although that looks better his final culture came back that it was PA but not enough to do a C&S on it so we are going to start TOBI tomorrow... Has anyone ever heard of not doing TOBI until they get 2 positive cultures?? Well anyway his surgery is being postponed until he feeld better and his cough is gone... Hopefully it wont be around too long and the TOBI will take care of it!!!! talk to you later

 

[Ratatosk]

Sorry about the PA, for us it really hit home that Max had CF. Prior to that, I guess I just believed his diagnosis was all just a big mistake. He cultured it when he was 3 months old and his doctor felt that Tobi and treating it right away was the best form of treatment to erradicate it -- before it colonized and went from mucoid to nonmucoid. L

 

[JRPandTJP]

I am sorry about PA as well...just know that even though we all fear it on some level, many do very well with the inhaled TOBI and see clear cultures after. It was quite upsetting to us at first but we have to just be positive and do what we can.

What is C&S? Our clinic does aggressive treatment of PA upon first culture, no waiting. That is what I would do.

I am sorry for missing if you posted before but what is Ashton's surgery for?

Hope he is well. You are doing a great job.

Jody

 

[angelsmom]

I am sorry to hear Ashton has PA. My daughter was diagnosed at 18 months and a month later cultured PA, so we were new to CF at the time. She did 28 days on TOBI and, as part of a research study, she was also on either Cipro or a placebo (we don't know which one she had). This was back in January and she has not cultured PA since. I am awaiting culture results from last week though and I am a little fearful that she may have it again since she has had a cold with some increased coughing.

Anyway, Tobi seems to be the way to go. Hopefully it will do the trick.

Can anyone enlighten me on the mucoid PA vs. non-mucoid PA?? We were never told whether our daughter's was mucoid or not . . . what's the difference?

Sandra

 

[ashton2005]

C&S is culture and sensitivity to antibiotics and such... he is having surgery for his hernias to get them fixed..... before he gets to old to remember it.. but we just cancelled it we want him completely healthy.... so hopefully the TOBI does it.... How long does everyones doctor give until the cough gets better???? im supposed to call them back on Friday and tell them what his cough is doing.. would that men that the TOBI isnt getting it?? sorry for all the questions.. jsut like Liza said this is what makes CF real to me because before you jsut want to wish its a bad dream.. but this proves its not....

 

[MOME2RT]

When Reece first did TOBI he coughed more...that being said Ive heard that in some ways its good because its getting the PA up & out. Ive also heard that if he coughs while doing it then its not doing any good ( not getting deep down in the lungs)

The second time Reece did TOBI it seemed like it worked over night...no more coughing!

Reece is about to start another round of TOBI in a week......he has had a cough for about a week 1/2....so I hope that this round takes care of that.....has anyone started earlier or later on the TOBI? Meaning like Reece has another week to go but do you think it would be fine to go ahead & start it earlier?

 

[Ratatosk]

When Max has been on tobi, I notice that he gets a bit of a froggy, hoarse voice. Previously, I noticed he had a bit of a dry cough, when he was younger, before he could talk. Another think I noticed was that he's "boogier" -- technical term there -- meaning he's CONSTANTLY digging up his nose for gold. Think it must make his boogers stickier or something. DH usually sits with DS during the tobi treatments and says his throat gets scratchier and it burns his nose. Starting up again on Wednesday, so I'll keep you posted. <img src="i/expressions/face-icon-small-smile.gif" border="0"> He's also developed/picked up other bugs while on Tobi and has needed to be put on other antibiotics. We always figured he'd be okay and not get sick 'cuz of all the meds he's on, but last spring he got a cold that got into his chest and he was prescribed Cipro to get rid of it.

Leah, I don't think it's a good idea to start earlier, though you could check with your doctor. Think the 28 days off is to give your lungs time to recover. As far as starting later -- a day or so would be okay, we've had to do this when CF Services screwed up our tobi order, but anything too much longer wouldn't be advisable because of concerns with antibiotic resistance.

 

[ashton2005]

Has there been ny kiddos that have had to be hospitalized for PA... im hoping that since it was such a small amount that he cultured the TOBI will kick it like i said.... but ashton is good at throwing us curve balls and im worried that it may not work or whatnot.. which i know that there is that chance just like seeing what everyone else goes through...

 

[ladybug]

I cultured PA around 6 years old and wasn't hospitalized for it until I was around 9 years old. I think it mostly has to do with how you're feeling. The fact is, PA probably won't ever "go away" (sorry, i know that's upsetting to hear) forever, but in the clinics I've been to, they've only treated it if its causing problems (which it sounds like Ashton may be having with his cold). So, basically, what I've been told is they will treat PA if it is causing an exacerbation, but may or may not actually "get rid of it" for awhile. If he's just culturing PA, but is having no problems (can still gain weight, exercise, sleep well, feel well, etc.), they are likely to leave it alone. That is what my docs have always done.

Please know I'm thinking of Ashton and you. I'm sure this is very tough to deal with right now, but know its not anything out of the ordinary, and the fact they caught it early on and are starting some proactive measures such as TOBI is great. Everything, when caught early, is better able to be treated by whatever method. Please keep us posted.

 

[anonymous]

Hey Christi,

My son is the same age as Ashton and he culture PA in April. He did one week in the hospital on IVs and two at home on TOBI and Cipro. He actually did really well with the TOBI, we just put on a Baby Einstein and he was content. And we did get rid of it. We have had two clean cultures!!! I think you are doing the right thing because when Sam first cultured it they said it had not colonized and there were hardly any of them there. I didn't know what to think at the time, but now I see the doctor was right and we got rid of them. Good luck!

Carrie mom to Sam

 

[NoExcuses]

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[NoExcuses]

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[anonymous]

There is strong evidence that early aggressive treatment of psuedomonas can delay chronic colonization which in turn may improve the overall prognosis. Go back to your CF team and discuss more aggressive treatment: tobi plus either oral or IV antibiotics. Don't wait.

 

[LouLou]

I just want to tell you that I think you are doing a great job. I've had PA since I was under 5 and am doing very well. You can see my picture under the picture post if you'd like. I wasn't logged in ... I'm the one with my husband on our wedding day sitting on a bench (page 5). My parents were very proactive about getting the mucus out and to this day I take lung clearance very seriously. I have only been on IV's once since I was 5 - it was my junior year of college when I got pneumonia. I have a full time job and keep up with everyone just fine. We're planning to have a baby soon. Please feel free to ask me anythign you want.

 

[ashton2005]

before we found out tht it was pseudomonas he was on augmentin for 10 days we just finished that today then also today we strted to TOBI.. so hopefully that will kick it.. he goes back october 18 to see him pulm dr... so we will see...