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

[Guest guest]

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 "