parent of a 1yr w/ cf

[lrs2015]

I am a parent of a cf child she was diagnosed at two weeks. She is techinally almost a yr. She cultured pseudomas argisosa at around 6 months and we got rid of it with tobi. Now her last culture results she has pseudomonas putida. Anyone anything. Fill me up! Tell me everything. If you have cf and you have it currently or if you had it and got rid of it. Did they put you on tobi also? Did you use a combination of natural remedies along with what the doctors perscribed. Anything at all I'm here to absorb as much as I can because its a great defense against this big world of ours.

 

[TreasureGoddess]

I'm not familiar with that version. Ask your cf team for more details on what this means, treatments, etc. my son had TOBI nebulized every other month for 6 months when he cultured pseudomonas aurginosa. He's not cultured it since. What your son cultured could be a variant of the first type he cultured or it could be something new.

Good of luck and keep asking questions of the medical team until you get answers you understand. Your son is seen at a CF center and not just a pediatrician, correct? That's super important for the health of your kiddo. Best of luck! This forum has so many adults, young adults and parents of kids with CF that it can be a great resource for you as well. My kid is 15 and having a great high school start. When he was a baby I was so overwhelmed and frightened. It all works out.

 

[lrs2015]

Okay I googled the snot out of (pseudomonas putida) what it is where it comes from and talked to the clinic. It is found in the soil and water . Its basically from my understanding a lesser species of pseudomonas arigosa. Its still a gram rod shaped bacteria just like the pseudomonas arigosa. But its not as agressive to my understanding. The clinic told me its everywhere. On the ground, sometimes in the air, I guess depending on what's going on outside. You know kickings up dirt and such.

 

[Ratatosk]

I did the same when ds cultured pseudomonas florens (sp). He'd cultured pseudomonas A. in the past and was put on tobi. When he'd have an exacerbation, they added cipro to the mix. Guess it all comes down to the culture report and what antibiotics pseudo putida may be sensitive to. If it was light/scant or numerous. DS' doctor wasn't too concerned with the other pseudomonas he'd cultured because it was scant. Hasn't cultured it for over 6 years.

 

[lrs2015]

My daughter also has a ddf508 mutation. I would love to hear your experiencs that way I can learn what you've done tried anything and everything your willing to share. Ava cultered pseudomonas A. At around 3 months and we got rid of it with tobi. Now were back on tobi because of this other type of pseudo. She is now 1 yr. It makes me wonder if I'm not doing something right. We do chest percussions two times a day. She get once a day pulmyzene inhale, we've switched her enzymes. I'm counting calories ( but don't tell my dietitian that. We wash our hand frequently. Granted she's craweling now. I just don't know ya know.

 

[Ratatosk]

You can drive yourself nuts trying to figure out how they get pseudomonas, if there's anything you did or didn't do. DS cultured pseudomonas at 2 months while I was still on maternity leave. He was home with me, we didn't GO anywhere, didn't have many visitors. If we did they knew to wash hands before holding him. My theory is he picked it up during his 2 month check up at the clinic, but really have no way of knowing. Always seemed to have a stuffy nose, nose never ran so I often wondered if the pseudo was in his sinuses...

Are you in the states? She should be big enough/old enough for the Vest. We do 3 vest/cpt treatments a day. More if he's sick or gets a cold. I remember sneaking cream and chocolate syrup in ds' bottles for extra calories as we struggled to maintain a 50th percentile in weight. Added butter and olive oil to his food as well. While tobi adds an extra 15-20 minutes of neb time, it's time I get to hang out with ds. He watches tv or plays games on the ipad. He does albuterol/atrovent nebs to open up his airways while vesting for 30 minutes -- we used to do cpt for 25 minutes each day before the vest. He does pulmozyme at night before bed.

 

[Aboveallislove]

I'm blanking on what it was but about six months ago I found an article that spoke about some genetic factor for cf that caused some to colonize things more ths others. I can't remember exactly what it was but remember showing dh to say look we can only do so much...it wasn't the specific cff mutations but something else. Our cf doctor said that sometimes some bacteria keep others at bay. Ds has cultured staph always and many times it was numerous....they don't treat without issues which he hasn't had so that bacteria might be keep pseudo at bay is how I understood cf doctor. Other than the big things...no hot tubs, playing in leaves, (our cf doctor said no bath toys), and watching infection control at clinic there's not a lot to do. The good news is that with the drugs some who have been culturing stuff have gotte rid of it after being on kalydeco....and the new trials coming with the sodium nhibitor coupled with orcambi are showing even better cilia beats and moist passages which could help clear the stuff out too.

 

[lrs2015]

Yes indiana as a matter of fact. The cf clinic her in my area is fantastic. Really down to earth. I'm a person who has a lot of questions but I'm sure there getting tierd of me calling 4x a month

 

[Gammaw]

Oh no, Irs, you call them 4x a month or as many times you have a question or concern. Do NOT worry about it. Just keep calling, never give it a second thought. You will get your answers and have fewer questions after a few years or maybe more. And that's what you and your daughter need. Call away!

 

[Aboveallislove]

Totally agree with Gammaw! Do not WORRY. Call away. I rarely call now, even though I called as much if not more at the beginning. Everything is a question at the beginning and over time we then know the answers, but even now things still come up now, like different jargon on a throat culture, and I'll call and ask.

 

[Cale Gilley]

I don't know what its like to have a child with CF but I was one. I can't tell you what my parents did because I never asked about when I was little before I was 6 I don't remember those years. The advice I have for you as I would give myself if I had children is find out everything about CF from your doctors and never let your child miss their treatments growing up. I told my mom I did my treatments for years and maybe I did some days but didn't most days and I'm paying for it now. You may think your the bad guy for sitting there and making sure they do them and they may get annoyed that you do but they will thank you one day. Good luck to you and wish your child the longest life ever, we live in a great time now with all the new technology.