1st PA culture, what treatment would you do?

[rcq925]

My daughter, Hayley, who is 2½ just cultured PA for the first time! I am devistated. I knew the day would come when she would culture it, but I just hoped and prayed that it would be years down the road!

SO I am waiting to hear back from the doctor, what he wants to do treatment wise. I know a lot of people do the oral Cipro and the inhaled Tobi and do erradicate it. But I also know some do the IV meds and then the Cipro and Tobi. I want to be VERY agressive and erradicate the PA, so I am just wondering what others have done as far as treating PS in their small children and which way is the best way to erradicate it?

 

[DEES4]

I am so sorry to hear this about your daughter. I know how you feel...it is quite shocking news...my son was also 2 the first time he cultured PA. He is now 2 1/2 and has had two cultures since and has been negative both times. We did the oral cipro and inhaled Tobi.
Carrie

 

[Ratatosk]

For us when DS first cultured pseudo, it brought home the reality that he actually DID have CF. Even though we did CPT, nebs and meds we kept hoping that the test results were incorrect and at some point, someone would tell us that he didn't have CF. He's been on Tobi off an on since that time. I've heard that with agressive treatment at a very young age that PA can be erradicated. I'd ask your doctor to be as agressive as possible. L

 

[welshgirl]

joe cultured psuedonomas last september . they did a cough swab and there were 4 or 5 bugs there. he was on all sorts of anti biotics , oral and otherwise. he inhaled colomycin for 3 months and then he was clear ,so far it has not re appeared in any cough swabs to date. <img src="i/expressions/face-icon-small-smile.gif" border="0"> i do find it a scary one though!!!!!!!!

 

[Alyssa]

I felt the same way when my daughter cultured PA for the first time (she was 16, but she wasn't dx until 14) I too felt like she didn't have a "real" case of CF

Anyway -- yes, aggressive treatment can eradicate it in some people -- my daughter is one of those people. She cultured PA just over one year ago and has not tested positive since.

The doctor prescribed one month inhaled TOBI and oral Cypro -- I asked them if this was the "aggressive treatment" they had spoken about and they said "yes"

Best wishes -- I hope she can kick it.

 

[karon72]

Erin was diagnosed with CF at 14 months and when she was 2 1/2 cultured for her first pseudomonas. It was devasting, so I know what you are going through. She was on Cipro for 30 days and inhaled Tobi for about 8 months (28 days on, 28 days off). She has not cultured positive since and it has been about 2 years. However, she did culture positive for another pseudomona and we did Tobi & something else (can't remember) and has not cultured positive again. Hope this helps...

 

[rcq925]

Thanks to everyone for their replies! We have decided to go with the IV meds and hit the PA with the big guns, so to speak! I really want to make sure we are doing everything we can to eradicate the PA as quickly as possible!

 

[izemmom]

Best of luck, Becky!!! We too were devestated when Emily cultured PA on her very first culture at 6 weeks (two weeks after being released from the hospital!!!)
We did three cycles of TOBI (28 on/28 off) and were absolutely elated in May when she had a normal culture! We'll see in two weeks whether we have been successful in keeping it away. I hope you get to have the YAAAAAy moment we had!

 

[blackchameleon]

let the invasion begin Becky, let us know how the youngen is doing
pls? cheers BC<br>

 

[folione]

Just wanted to add that you might want to ask if home IV is an option. My 3 year old son is doing a course of Timentin/Tobra at home right now and it's vastly better than being in the hospital. It's his 2nd time for IVs: first was a 17 day stay in the hospital at 14 months. This time he was in just 2 days to get everything set up and working then we came home to finish out the 2 weeks.

The only downside to doing IV at home that I've found so far is that it takes longer to run the meds, 90minutes 3x per day, and it's on top of extra nebulized albuterol/pulmicort so makes for a long day for parents.

Best of luck knocking out that bug - but also, don't let yourself get too down about it; my little guy has not slowed down one bit through all of his bugs and drugs

 

[welshgirl]

i would say the same , i'm sure people think we are fibbing about joe having cf . he looks so well<img src="i/expressions/face-icon-small-happy.gif" border="0">