Kid Update/ Pseudomonas

[Guest guest]

Hello to all list friends, etc.

Just a quickie update, with a few questions as always. Mallory's follow-up

visit from her recent hospitalization (the ICU one...) was last Friday. She

is doing much better, certainly appears healthy, and is gaining weight really

fast on enzymes and it has now been several months since she threw up. She

had just finished her first 28 days on Tobi 4 days prior to the appt, so the

CF doc wanted to do another culture to see if somehow we had gotten rid of

the Pseudomonas A. and F. which she had in her last culture (actually before

the hospitalization). Well she still cultured for the Pseudomonas A. (but

not the Pseudo F.) and also for the Stenotrophomonas Maltophilia (she

cultured this on her bronch in January, but so far it had not shown up in her

sputum). Before anyone says, surely you know you can't get rid of Pseudo.

with Tobi, well, we did think that too, but the doc told us that he thought

we might could since she did not culture for it on the January bronch and

since it was so new... We did know that the Maltophilia is hard to get rid

of. So, are we stuck with both these bugs forever? What about the reports

that they try to eradicate it on the first culture of it in the Netherlands?

Meanwhile, we do 28 days on and 28 days off of Tobi and we have an appt in

early May with a large CF Center for Mallory. still had Maltophilia

in his last sputum, but no Pseudo (he did not have an appt this time so we

don't have recent cultures) but he is already on the Tobi cycle anyway.

Question number 2: (hope this does not sound too depressing, but this is not

the kind of question that the docs will give you an honest answer to...)

anyone know if culturing Pseudomonas at an early age is related to a poorer

prognosis? I know everyone acts like its so good they don't have pseudomonas

when they don't, but then when they do, its like they forget that they ever

said that... like we are supposed to forget too..... I just wonder, we met

people at the walk with kids who are much older than mine who don't even need

breathing treatments or CPT or who never culture for anything. So,

seriously, does anyone know if colonization of PA and stuff like Maltophilia

in an 18 month old is bad? or just one of those things?... Our poor

Pediatrician seemed to think it was terrible news, but I also always thought

that it was considered to early to make any type of guesses about prognosis

in kids under 5? So, anyone having input, feel free to send info my way, I

feel like I have shared more with this list re: our worries about the kids

than we would ever tell the CF doc. I am not looking for info. to make us

feel better--just honest info. The only thing the Pulm. said to Ron was that

it looks like the probs are more related to CF than reflux than he thought

(rem. he thought it was all reflux for along time)...(I guess due to the

pseudo) Thanks alot, folks.

Hope everyone is doing ok,

Take care,

Jennie, mom of Mallory 18 months, the long story RAD, GERD, CF baby; 3

w/CF, 4 and Miranda 7 and 13 yo foster child and aunt of 2

yo with CF

[Guest guest]

Hi Jennie, I remember when I got the letter stating had cultured PA

for the fist time. First of all I was still in complete denial over the dx

so needless to say this bit of news was devastating. Alls I could think

about was somewhere I read (I think it was , the Life of a Child, but I'm

not sure) that when they cultured PA it was the " beginning of the end " . It

took me awhile to realize it is just a part of the CF and most definitely not

even close to being the end. is doing great and as for her

prognosis.......who knows, we will enjoy her everyday no matter what. BTW

she had just turned 4, but she wasn't dx until almost 2. I know this doesn't

help much, but I just wanted to let you know that you are not alone. Take

care.

Sally

Mom of na 11, 8w/asthma & 5w/cf & ds

RSBRT@...