Re: pa

[Guest guest]

Sally,

This may be a case of my opening my big mouth, but as someone who has worked

in the field of developmental disabilities for 15 years, are you CERTAIN that

they are not treating her differently because of her having downs syndrome?

We have such an uphill battle at work to get appropriate healthcare for our

folks, and I guarantee for most of them it is b/c of their DD diagnosis. We

have one individual with severe CP and spastic quadriplegia who has

pseudomonas in the lung and finally ended up with a trach. Over 18 months

ago the Pulm. told the parents to put her in a nursing home (we are group

homes with ICF_MR licenses, not exactly a nursing home...) and he gave her 2

months to live. When I asked him about Tobi (with my newfound knowlege from

cystic-l at the time b/c had just been diagnosed) in a huge circle of

support meeting where we took our medical director, me (the exec. director) ,

the program director, and tons of staff who love her right to his office, he

said, well tobra iv vials dumped in the nebs are just as effective as tobi

and MUCH cheaper!!! About a year ago when she got really close to dying, I

convinced her mom to change her dr. to my kids ped. who on his own put her on

tobe and did a major iv cleanout right in our group home (I have provided

bedside nursing for this kid since the trach, as she requires suctioning

every 5 minutes most of the time to prevent a mucus plug causing her to die).

Anyway, the kid was on 10-12 liters of oxygen at the time keeping sats only

at 84 or so. Two months ago, to everyone's amazement, we finally weaned her

off the o2. She still has the humified air through the trach, etc. What fun

we all had wheeling her into the pulm's office to show off our (not) dead

kid....he just wrote her off b/c of her MR. Anyway, I have hundreds of

stories like this....so though it may sound tacky of me to warn you, I just

wanted to make sure you know that this can happen. With that said, there is

little agreement in the CF world as to whether you treat pseudo on the first

culture or wait til it does damage. As a parent, I say lets keep the kids

healthy for that cure...thankfully our ped. and our CF doc agree with that

philosophy. But we have run into those who worry so much about resistence

that they are afraid to eradicate. so it may be that your center falls into

that category of believers (maybe you can ask other parents who go there?)

Take care,

Jennie

[Guest guest]

Jennie, it's funny but I really never thought of that. I don't know why not.

I have a family history of DD including a niece w/CP in a wheelchair. I

have seen her health being compromised several times because of her

disability, it is a hard thing to see. But I never thought of that in

's case -- she's much too cute. But seriously I will consider it and I

thank you for bringing it to our attention. I sometimes wish she just had CF

or just had Downs it can get pretty depressing. I'm sure you've all been

there before. I have copied some of the posts on pa and will be sharing them

with my pulm. If you get this before you leave have a great time.

Sally

Mom of na, &

[Guest guest]

Jennie wrote,

>he

>said, well tobra iv vials dumped in the nebs are just as effective as tobi

>and MUCH cheaper

I guess Jennie might be already gone by now, but actually tobra iv dumped in

the neb IS just as effective, but I don't know how much cheaper it is. You

would just need to use several vials. Some people on here may remember

this, and we used to do it sometimes with Ang. Before Tobi came out we were

using powdered tobra mixed with sterile water or saline to make the same 300

mg strength treatments as Tobi, and we just had to do a little more volume,

7.5 ml instead of 5ml with the Tobi.

>With that said, there is

>little agreement in the CF world as to whether you treat pseudo on the

first

>culture or wait til it does damage. As a parent, I say lets keep the kids

>healthy for that cure...thankfully our ped. and our CF doc agree with that

>philosophy. But we have run into those who worry so much about resistence

>that they are afraid to eradicate. so it may be that your center falls

into

>that category of believers (maybe you can ask other parents who go there?)

This is the deal with our CF doc, and it is all because Ang started

culturing for S. Maltophilia which is resistant to tons of antibiotics. It

makes me crazy because we used to treat with antibiotics every cold she got

pretty much. Now they don't want to treat her. I have found that if I call

and tell them her symptoms over the phone she will get antibiotics every

time. I think this is because the sick phone calls get taken care of by

either the nurse (who just needs an ok to call in some antibiotics) or the

fellow who seems to be more willing to treat her.

oh well....