Re: Kidney damage from inhaled TOBI?

[Guest guest]

Hi,

sorry I didn't mean to scare anyone but when started on inhaled Tobi she

was under 2 years old. Since the Med is approved only for ages 6 and up, the

docs and my hubby and I were all concerned. It did show up as too high in the

blood work and the doc cut the dose in half. After further checking she was ok

with the half dose. She is not monitored on it continually, just when she began

the therapy because of her age. I'm sure that since your son is 12 he should be

fine.

I was only mentioning it because when the kids are on IV meds in the hospital

They take a peak and trough level until the meds are adjusted to the right

amounts, I though it would be common sense to monitor them in the beginning of

home IV to be sure of the levels, too.

Kidney damage from inhaled TOBI?

,

I had no idea that levels could become too high from inhaled Tobi. I didn't

think it was systemic. Has anyone else had this happen? Should blood

levels be monitored while on inhaled Tobi? Ben is using it for the first

time and no one has suggested checking his levels. Should we be doing this?

Marcia

mom of Ben (12 w-cf)

-----Original Message-----

From: ANDREA FITTING

HI ,

I am sorry you and have been having such a hard time. I added Val

Hudson's name to the subject line so she reads your e-mail, since I don't

know enough about GSH to tell you anything.

I have to ask why wasn't someone following 's levels? I realize

that the CF clinic is far away but a local hospital can draw blood with her

ped or MD's request and check the levels. When the doc gets the results

they just consult with the CF clinic for adjustment of the dose. This is

what we did when started on Tobi. We found out quickly that a full

vial of the inhaled Tobi was way too much for and the dose was cut in

half. We re checked her " peak and trough " levels and they were fine. I am

shocked that they didn't do this for , It is just so common sense.

And now she has kidney damage because someone didn't think about it.

I hope is feeling better very soon.

Mom of , 4 & 3/4 with CF

[Guest guest]

Hi , you're right; it's common sense and important to routinely

check peak and trough even while home on IVs. Are you saying there are

people not doing this? Wow, that's scary.

's only had IVs twice (5th grade and 11th grade). Both times he

started out in the hospital for a few days, but came home to finish up

the IVs. He had doctor's orders to check peak and trough levels every

48 hours.

The first time we just went to the local hospital lab to have blood

drawn because my mom was staying with us and she did his IVs (she's a

retired nurse) but she didn't have the lab equipment to draw blood.

The second time he was on IVs, a home health nurse came once a day to

do the afternoon IV, and she'd draw blood and take it to the hospital

to have the levels checked.

I'm curious now what others on home IVs do about getting blood levels

checked. Close friends have told me they also just have a home health

nurse draw the blood to take to the lab.

And , anything you inhale into the lungs gets into the blood

stream. So yes, TOBI is systemic though doctors will likely tell you

" not much. " But there are reported cases of otoxicity from inhaling

TOBI, and that wouldn't happen unless TOBI was systemic.

Kim

--- " ANDREA FITTING " <drea@m...>

I was only mentioning it because when the kids are on IV meds in

the hospital They take a peak and trough level until the meds are

adjusted to the right amounts, I though it would be common sense to

monitor them in the beginning of home IV to be sure of the levels,

too.

[Guest guest]

Hi Kim,

Yes, apparently 's daughter was given another IV med that can cause

kidney damage (like Tobramycin can) on home IV's but the levels were not

monitored. now has kidney damage. It just seems like it would be common

sense to monitor this. has had IVs four times and always started out on

IVs in the hospital and been Monitored there to get the levels right. then we

went home (3x's)on home IV so it hasn't been a major issue for us but we had

to monitor levels at first when we started on the inhaled Tobi. Again I would

have to ask the docs why they were NOT monitoring it since it seems like it

makes sense.

Re: Kidney damage from inhaled TOBI?

Hi , you're right; it's common sense and important to routinely

check peak and trough even while home on IVs. Are you saying there are

people not doing this? Wow, that's scary.

's only had IVs twice (5th grade and 11th grade). Both times he

started out in the hospital for a few days, but came home to finish up

the IVs. He had doctor's orders to check peak and trough levels every

48 hours.

The first time we just went to the local hospital lab to have blood

drawn because my mom was staying with us and she did his IVs (she's a

retired nurse) but she didn't have the lab equipment to draw blood.

The second time he was on IVs, a home health nurse came once a day to

do the afternoon IV, and she'd draw blood and take it to the hospital

to have the levels checked.

I'm curious now what others on home IVs do about getting blood levels

checked. Close friends have told me they also just have a home health

nurse draw the blood to take to the lab.

And , anything you inhale into the lungs gets into the blood

stream. So yes, TOBI is systemic though doctors will likely tell you

" not much. " But there are reported cases of otoxicity from inhaling

TOBI, and that wouldn't happen unless TOBI was systemic.

Kim

--- " ANDREA FITTING " <drea@m...>

I was only mentioning it because when the kids are on IV meds in

the hospital They take a peak and trough level until the meds are

adjusted to the right amounts, I though it would be common sense to

monitor them in the beginning of home IV to be sure of the levels,

too.

[Guest guest]

My son was just on Tobramycin through IV at the hospital and at home. The

levels were check and were high once, but there was no kidney damage. They

think it was because the blood was drawn from the PICC line and there was a clot

the next day. He is now on inhaled TOBI and I asked about the kidney aspect.

They said that it was not an issue because it is going directly to the lungs and

not overworking the kidneys.

Another couple of questions that I have for you all:

1. If you have more than one child with CF, how do you handle the administering

of TOBI? Do you even worry about them breathing in some of it? I have been

putting the one twin who is on it at the back door with it open while the other

is in the back bedroom doing his vest. It is harder to do this at night because

of mosquitos, so we turn the fan on so it will suck it up to the ceiling in the

room. I know this is not the best solution.

2. And finally, how do you all handle the treatments if you work and your child

is in school? I have to leave very early because I live 45 minutes away from my

workplace. (One hour when traffic gets bad.) To get my boys' treatments done

and get them to the sitter and myself to work, we must get up extremely early.

Now that you add TOBI to the mix, I can't see how we will ever make it.

Thanks for any input,

Peggy - mom of Jonah and (4 year old identical twins wcf)

[Guest guest]

How did you find a sitter that could/ would handle the meds? You are

way too busy. I hope that someone helps you with housework.

Gale

> My son was just on Tobramycin through IV at the hospital and at

home. The levels were check and were high once, but there was no

kidney damage. They think it was because the blood was drawn from

the PICC line and there was a clot the next day. He is now on

inhaled TOBI and I asked about the kidney aspect. They said that it

was not an issue because it is going directly to the lungs and not

overworking the kidneys.

>

> Another couple of questions that I have for you all:

> 1. If you have more than one child with CF, how do you handle the

administering of TOBI? Do you even worry about them breathing in

some of it? I have been putting the one twin who is on it at the

back door with it open while the other is in the back bedroom doing

his vest. It is harder to do this at night because of mosquitos, so

we turn the fan on so it will suck it up to the ceiling in the room.

I know this is not the best solution.

>

> 2. And finally, how do you all handle the treatments if you work

and your child is in school? I have to leave very early because I

live 45 minutes away from my workplace. (One hour when traffic gets

bad.) To get my boys' treatments done and get them to the sitter and

myself to work, we must get up extremely early. Now that you add

TOBI to the mix, I can't see how we will ever make it.

>

> Thanks for any input,

> Peggy - mom of Jonah and (4 year old identical twins wcf)

[Guest guest]

How old is your son? If he is very little I would request levels. was

just under 2 when she started on Tobi ( it is approved for people OVER 6 ) Her

level was very high after being on the full dose. After it was cut it was fine.

The inhaled Tobi goes to the lungs but the lungs add oxygen and anything else

that goes into them into the blood, So it CAN effect the kidneys because it gets

into the bloodsteram. (not as severely as IV tobramycin but still.......)

Re: Re: Kidney damage from inhaled TOBI?

My son was just on Tobramycin through IV at the hospital and at home. The

levels were check and were high once, but there was no kidney damage. They

think it was because the blood was drawn from the PICC line and there was a clot

the next day. He is now on inhaled TOBI and I asked about the kidney aspect.

They said that it was not an issue because it is going directly to the lungs and

not overworking the kidneys.

Another couple of questions that I have for you all:

1. If you have more than one child with CF, how do you handle the

administering of TOBI? Do you even worry about them breathing in some of it? I

have been putting the one twin who is on it at the back door with it open while

the other is in the back bedroom doing his vest. It is harder to do this at

night because of mosquitos, so we turn the fan on so it will suck it up to the

ceiling in the room. I know this is not the best solution.

2. And finally, how do you all handle the treatments if you work and your

child is in school? I have to leave very early because I live 45 minutes away

from my workplace. (One hour when traffic gets bad.) To get my boys'

treatments done and get them to the sitter and myself to work, we must get up

extremely early. Now that you add TOBI to the mix, I can't see how we will ever

make it.

Thanks for any input,

Peggy - mom of Jonah and (4 year old identical twins wcf)

[Guest guest]

Gale and ,

Yes, I am very busy, but my boys do not stay with a sitter. They are with my

mom while I am at work which is just as good as being with me. She is an

angel. I am going to ask again about doing those levels because he is under

six- will be five in December,

Thanks,

Peggy

[Guest guest]

I teach full time and Traci is in third grade. My husband and I get up at

5:00 and start her breathing treatments, Albuterol(20 min), then Pulmozyme(20

min) then we do vest for 30 min and then Colymicin(20 min) ALL while she is

asleep. We take turns showering and getting ready in-between and taking out the

dog. We wake Traci up at 6:15 and walk out the door at 7:00, after I wake up her

12 year old sister who doesn't leave until 9:15.

Lynette Carwana

[Guest guest]

Peggy,

Please feel free to refer to Me, My daughter or her doc at The Children's

Hospital of Philadelphia Dr Dan Weiner when you ask for the levels. If it were

me I would be a bit more forceful than asking, I would probably insist.

Re: Re: Kidney damage from inhaled TOBI?

Gale and ,

Yes, I am very busy, but my boys do not stay with a sitter. They are with my

mom while I am at work which is just as good as being with me. She is an

angel. I am going to ask again about doing those levels because he is under

six- will be five in December,

Thanks,

Peggy

[Guest guest]

In a message dated 8/28/2003 8:51:58 AM Eastern Daylight Time,

spoofandu@... writes:

> My

> > husband and I get up at

> > 5:00 and start her breathing treatments,

> > Albuterol(20 min), then Pulmozyme(20

> > min) then we do vest for 30 min and then

> > Colymicin(20 min) ALL while she is

> > asleep.

oooohhhhhhhh, please tell me how you manage to do the vest on her while she

sleeps....that is one trick I need to learn. And does she cough while asleep

while doing the vest?

Dawn

mom to Tyler 5 w CF