RE: Need common sense tips to reduce pseudomonas exposure -- Spanish & English

[Guest guest]

Hi Sharon,

You said, " Even though we've searched, it seems that is the only

CF child in OK of Hispanic heritage on one side. "

Are you in Oklahoma? If so, where does go for treatment?

Dr. Reyes has been my son's CF doctor since 1983. He used to be the

director of the CF Center at Children's but stepped down in 1993 to

open a private practice at Baptist Hospital in OKC. He's from the

Dominican Republic and speaks Spanish and English. I know Spanish

differs from each Spanish-speaking country but perhaps your

daughter-in-law would be comfortable with him. If you want his phone

number, let me know.

Regarding the pseudomonas, it's impossible to avoid it but yes you can

take precautions. For example, don't let her bathtub toys sit around

collecting water. Drain and dry them after use. Years ago someone

tested rubber ducks and bath loofas and found they harbored lots of

Pa. But not just ducks, any toy or doll with an opening would grow

bacteria and mold. Some parents give bathtub toys a weekly chlorine

rinse.

Also, when goes for dental check ups, take your own bottled water

to have her rinse and spit. The water lines in dentist offices have

also tested high for Pa.

Another high source of Pa are those bottled water machines in grocery

stores. You know, the ones where you fill your own plastic jugs. The

lines aren't cleaned regularly so they grow Pa inside.

Which makes me think that those water sprays that most grocery stores

use in the produce section to mist the vegetables must also have a

high bacteria count. Lovely idea, isn't it? Here, have a serving

of pseudomonas with your lettuce.

I'm a lot less nervous about Pa than I used to be. However, the

bacteria that still puts fear in my heart is B. cepacia. And since I

tend to be obsessive compulsive, the way I avoid the risk of B.

cepacia is to only buy enough onions for what I need for a recipe. Any

leftover onion I chop and store in the freezer. I don't let onions sit

in my pantry or refrigerator. B. cepacia loves to grow on onions.

And now that my kids are older, they've heard my lectures about always

thoroughly checking ceilings, walls and baseboards when looking for a

new apartment -- and never rent the basement apartment. If you're ever

put into a hospital room that has a water damaged ceiling, check out

immediately. Don't even bother asking for a new room, just leave if

you can. Aspergillus is a problem in many hospitals that have had

leaky ceilings. It can get into the air vents and spread throughout

the hospital. Same for schools. Do a visual inspection and avoid water

damaged places.

Kim

[Guest guest]

Hi,

There are a few Spanish speakers here. I'm thinking of a few South

Americans....

As for a support group, here we are! Give her this address! We won't correct

her English or anything! (LOL) Honestly, this is one of the best support groups

I have found. Everyone here is kind and helpful. We are happy to answer

questions (hers or yours) as well as we can. Welcome!

mom of , 4 with CF

check out our & CF related group at http://groups.msn.com/TeamJane

I am always adding and updating things.

Need common sense tips to reduce pseudomonas exposure --

Spanish & English

Hi, I'm a grandmother who's new here.

My 3 yr old grand daughter was diagnosed at age 6 mos. Even though

she has had no problems with her lungs so far (all digestive), she

cultured pos. for pseudomonas the first time at 21 mos., and again at

39 mos. (we're just completing the round of cipro and Tobi).

Virtually everything I've found out has come through my own

searching. Our clinic seems to be very concerned about parents

becoming obsessed with avoiding everthing to the point of ruining the

families' quality of life. We were simply told " it's everywhere ,,,

you can't avoid it " but they did tell us about standing water.

Through prodding and questioning I also found out about aerators in

sink faucets, shower heads, etc.

I also found out about the connection between Tobi and deafness the

first time around. Being a former orchestra teacher (both mine and

my husband's families have a number of music majors) I was also

frightened of the Tobi. Again, the clinic assured me that inhaled

Tobi wasn't a problem. I remain skeptical.

Anyway ..... we need a good common sense approach attempting to avoid

another positive culture as long as possible, without going overboard.

With summer approaching, I would like to know what actvities MUST be

avoided and which we could make a little safer. (ie loves to

watch her mother garden, and of course, wants to help. She asked to

go fishing the other day, etc., etc. and she spends a lot of time on

the farm with me too.)

Also, ' mom is from Guatemala, and although she speaks English

quite well, is not comfortable reading it a great deal. She had never

even heard of CF until I guessed at the diagnosis and it was

confirmed. (There is no history behind either of the very large

families.) The few materials she was given printed in Spanish (about

CF in general) were VERY insufficient. She has had a lot of

unnecessary anxiety caused by not being quite sure she understood

everything that she was being told. When was about 18 mos., the

clinic finally realized this and began to bring in a secretary to

translate. Since then, we have been blessed with some interns and

residents who have been VERY helpful.

Even though we've searched, it seems that is the only CF child

in OK of Hispanic heritage on one side. We have not been able to

find another parent who speaks Spanish or a support group for my

daughter-in-law. She's doing a remarkable job, but I know having

someone to write to or converse with in Spanish would make things a

little easier.

" Nana Sharon "

[Guest guest]

Hi Nana,

My name is , I'm from Argentina, and I have an almost 3 yo

boy wcf. We speak Spanish, but my son does not actually have a

Hispanic heritage. His daddy comes from a Slovenian family -- he was

the first one who was born in Argentina --, and my ancestors are 75%

Italian, 25% Basque.

My son has not cultured PA so far -- knock on wood --, but please

feel free to forward my email address to 's mom. I'll be glad to

correspond with her in Spanish about CF.

I don't receive emails from CFParents, as I don't usually have the

time to read them on a daily basis. I read the postings from the Web

from time to time. So please respond privately, if needed.

You're absolutely right, as far as literature, facts and news about

CF in Spanish is concerned. I thank my mom every day for having made

me study the English language -- otherwise, I'd have never learned

such valuable tips on taking proper care of a child with CF.

(I've very much improved my skills in English, since Agustin was dxed

with CF, and I started subscribing to CF-related internet groups. I

used to feel too clumsy to write in English at first, but then it got

easier and easier)

Take care,

Mom of Agustin

Buenos Aires, Argentina

> Hi, I'm a grandmother who's new here.

>

> My 3 yr old grand daughter was diagnosed at age 6 mos. Even though

> she has had no problems with her lungs so far (all digestive), she

> cultured pos. for pseudomonas the first time at 21 mos., and again

at

> 39 mos. (we're just completing the round of cipro and Tobi).

>

> Virtually everything I've found out has come through my own

> searching. Our clinic seems to be very concerned about parents

> becoming obsessed with avoiding everthing to the point of ruining

the

> families' quality of life. We were simply told " it's

everywhere ,,,

> you can't avoid it " but they did tell us about standing water.

> Through prodding and questioning I also found out about aerators in

> sink faucets, shower heads, etc.

>

> I also found out about the connection between Tobi and deafness the

> first time around. Being a former orchestra teacher (both mine and

> my husband's families have a number of music majors) I was also

> frightened of the Tobi. Again, the clinic assured me that inhaled

> Tobi wasn't a problem. I remain skeptical.

>

> Anyway ..... we need a good common sense approach attempting to

avoid

> another positive culture as long as possible, without going

overboard.

> With summer approaching, I would like to know what actvities MUST

be

> avoided and which we could make a little safer. (ie loves to

> watch her mother garden, and of course, wants to help. She asked

to

> go fishing the other day, etc., etc. and she spends a lot of time

on

> the farm with me too.)

>

> Also, ' mom is from Guatemala, and although she speaks English

> quite well, is not comfortable reading it a great deal. She had

never

> even heard of CF until I guessed at the diagnosis and it was

> confirmed. (There is no history behind either of the very large

> families.) The few materials she was given printed in Spanish

(about

> CF in general) were VERY insufficient. She has had a lot of

> unnecessary anxiety caused by not being quite sure she understood

> everything that she was being told. When was about 18 mos.,

the

> clinic finally realized this and began to bring in a secretary to

> translate. Since then, we have been blessed with some interns and

> residents who have been VERY helpful.

>

> Even though we've searched, it seems that is the only CF child

> in OK of Hispanic heritage on one side. We have not been able to

> find another parent who speaks Spanish or a support group for my

> daughter-in-law. She's doing a remarkable job, but I know having

> someone to write to or converse with in Spanish would make things a

> little easier.

>

> " Nana Sharon "

[Guest guest]

> Through prodding and questioning I also found out about aerators in

> sink faucets, shower heads, etc.

>

I don't know either. Are aerators a good or bad thing? I assume

bad because the bacteria can breed inside the screen?

jan

[Guest guest]

My understanding is Pseunomonas Aeruginosa, once cultured in a CF

patient, will probably never truly " be gone " . It has been shown (my

own 16yo son for example) that treatments of TOBI & Cipro (and

other treatments) can reduce the P.A. culture down so low so as not

to show up in future cultures. But there is the belief that once a

CF patient has grown P.A., they are examined every visit for P.A.

and treated as needed when another 'positive' result occurs.

And, according to the recent CFF report, around 30% of CF patients

culture positive for P.A. by age 5 and 80% by age 18. Go to the

Cystic Trust of England webpage for a complete report you can

download about treating P.A.

As for 'avoiding' P.A., the gray area between letting a child live a

full life verus avoiding contact with these bugs is a parent's

nightmare. Little tricks like running a water tap for several

seconds before using the water is one example. But, does anyone

have a list of all those little 'tricks' parents have learned and

read about over time? I'm sure some of them may be 'urban legends',

but there are probably some great prevention ideas out there we

could all share. One of mine - once a week put a little bleach into

the sink and tub drains to kill anything growing in the drain traps.

Peace,

Dan