Re: Digest Number 2539/tobramycin and deafness

[Guest guest]

Hello there Tine,

My name is a and I am from Australia. Yes I have heard of this and only just

recently. A very close friend of ours who has CF was only given a very short

time to live at easter this year. However she has come through and got stronger

and stronger again, however they discovered she has become completely deaf in

one ear and partly in the other. The doctors said that this can be one of the

side effects from Tobramycin. I do know this was through the IV not inhaled.

It was quite strange because our son 11 years wcf has been having alot of

hearing problems for quite a while now and we kept putting it down to the sinus

disease. He has seen the ent specialist and had polyps removed and sinuses

drained. But I can tell you that they are going to get an ear full when we go to

clinic on Monday, because they have never once warned us of the possibility of

this happening, however they just told our CF freinds mum that this is why she

has gone deaf. They also told her that it will not right itself that it is

unrepairable. Once the damage is done, that is it. I have been quite upset about

it myself and I was going to post on here and ask if anyone else has heard

anything about this as well. Please write if you know if this to be true also.

Thanks a

Mum to

23 years wocf, Jayne 21/10/86 - 4/2/87 (in heaven from undiagnosed

CF), Emma 15 years wocf, Clara 13years wocf & 11 years wcf.

Grandmom to Iesha 2 years wocf (My pride and joy)

" wijker.zwaan " wrote:

Dear people!

I have a question. Is there anyone out there who, as CF-er, used inhaled

Tobramycine (Tobi) and got hearing difficulties?

A friend of mine has a daughter of 6 years old. She has inhaled Tobi for

three rows month up/month of and now has a hearing loss in both ears. No

test was done before she went on Tobi, so no evidence is to be given. We

were curious if anyone else experienced this kind of problems.

Tine Zwaan, mother of Gwendolynn 9 yowcf in Holland.

[Guest guest]

Hello a

I was reading your mail and was wondering why it was that this person went

deaf. Isn't that what the Tobra finger pricks (2 hourly and 6 hourly) are

for - to determine the appropriate levels in the blood? Or was it that

she/he was so sick that they needed to go above these safe levels to treat

the infection in which case it may have been a case of the devil or the deep

blue sea. (Risk death or deaf??)

Can I ask if this is Hayley as if it is, I know her quite well too. Infact

I think she was in with and when they were in together.

Anyhow I was aware of the side effects of Tobra although admittedly I don't

think the docs ever have told me either, I am aware through places such as

this list and the net.

Good to hear from you again

Cath (Mum to 7yowcf)

Re: Digest Number 2539/tobramycin and deafness

> Hello there Tine,

>

> My name is a and I am from Australia. Yes I have heard of this and

only just recently. A very close friend of ours who has CF was only given a

very short time to live at easter this year. However she has come through

and got stronger and stronger again, however they discovered she has become

completely deaf in one ear and partly in the other. The doctors said that

this can be one of the side effects from Tobramycin. I do know this was

through the IV not inhaled.

> It was quite strange because our son 11 years wcf has been having

alot of hearing problems for quite a while now and we kept putting it down

to the sinus disease. He has seen the ent specialist and had polyps removed

and sinuses drained. But I can tell you that they are going to get an ear

full when we go to clinic on Monday, because they have never once warned us

of the possibility of this happening, however they just told our CF freinds

mum that this is why she has gone deaf. They also told her that it will not

right itself that it is unrepairable. Once the damage is done, that is it. I

have been quite upset about it myself and I was going to post on here and

ask if anyone else has heard anything about this as well. Please write if

you know if this to be true also.

>

> Thanks a

>

> Mum to

> 23 years wocf, Jayne 21/10/86 - 4/2/87 (in heaven from

undiagnosed CF), Emma 15 years wocf, Clara 13years wocf & 11 years

wcf.

>

> Grandmom to Iesha 2 years wocf (My pride and joy)

>

>

> " wijker.zwaan " wrote:

> Dear people!

>

> I have a question. Is there anyone out there who, as CF-er, used inhaled

> Tobramycine (Tobi) and got hearing difficulties?

> A friend of mine has a daughter of 6 years old. She has inhaled Tobi for

> three rows month up/month of and now has a hearing loss in both ears. No

> test was done before she went on Tobi, so no evidence is to be given. We

> were curious if anyone else experienced this kind of problems.

>

> Tine Zwaan, mother of Gwendolynn 9 yowcf in Holland.

>

>

>

[Guest guest]

Hi Cathy,

Yes it is Hayley and I only know what her mother has told me. She was at home on

the tobra and I don't think she was having the finger pricks. Anyway the fact is

that they never told me of any side effects of any of these drugs and I HAVE

ASKED A FEW TIMES. And yes I do agree with you that it is a case of the devil or

the deep blue sea.

It is good to hear from you too. I am sorry I haven't answered your email from

last week, but things get hectic as you would realise. I will try to catch up

with you soon. How is ?

Love a

cathy flynn wrote:

Hello a

I was reading your mail and was wondering why it was that this person went

deaf. Isn't that what the Tobra finger pricks (2 hourly and 6 hourly) are

for - to determine the appropriate levels in the blood? Or was it that

she/he was so sick that they needed to go above these safe levels to treat

the infection in which case it may have been a case of the devil or the deep

blue sea. (Risk death or deaf??)

Can I ask if this is Hayley as if it is, I know her quite well too. Infact

I think she was in with and when they were in together.

Anyhow I was aware of the side effects of Tobra although admittedly I don't

think the docs ever have told me either, I am aware through places such as

this list and the net.

Good to hear from you again

Cath (Mum to 7yowcf)

Re: Digest Number 2539/tobramycin and deafness

> Hello there Tine,

>

> My name is a and I am from Australia. Yes I have heard of this and

only just recently. A very close friend of ours who has CF was only given a

very short time to live at easter this year. However she has come through

and got stronger and stronger again, however they discovered she has become

completely deaf in one ear and partly in the other. The doctors said that

this can be one of the side effects from Tobramycin. I do know this was

through the IV not inhaled.

> It was quite strange because our son 11 years wcf has been having

alot of hearing problems for quite a while now and we kept putting it down

to the sinus disease. He has seen the ent specialist and had polyps removed

and sinuses drained. But I can tell you that they are going to get an ear

full when we go to clinic on Monday, because they have never once warned us

of the possibility of this happening, however they just told our CF freinds

mum that this is why she has gone deaf. They also told her that it will not

right itself that it is unrepairable. Once the damage is done, that is it. I

have been quite upset about it myself and I was going to post on here and

ask if anyone else has heard anything about this as well. Please write if

you know if this to be true also.

>

> Thanks a

>

> Mum to

> 23 years wocf, Jayne 21/10/86 - 4/2/87 (in heaven from

undiagnosed CF), Emma 15 years wocf, Clara 13years wocf & 11 years

wcf.

>

> Grandmom to Iesha 2 years wocf (My pride and joy)

>

>

> " wijker.zwaan " wrote:

> Dear people!

>

> I have a question. Is there anyone out there who, as CF-er, used inhaled

> Tobramycine (Tobi) and got hearing difficulties?

> A friend of mine has a daughter of 6 years old. She has inhaled Tobi for

> three rows month up/month of and now has a hearing loss in both ears. No

> test was done before she went on Tobi, so no evidence is to be given. We

> were curious if anyone else experienced this kind of problems.

>

> Tine Zwaan, mother of Gwendolynn 9 yowcf in Holland.

>

>

>

[Guest guest]

I always thought when you did Tobi on and IV there was a higher risk of going

deaf if not monitored. But doing in haled is not as much of a risk because it

is not going through out you blood stream. Deb A

[Guest guest]

In a message dated 5/25/2003 3:17:06 PM Central Daylight Time,

kimpayne@... writes:

> Kim

>

You always seem to amaze me!! You must do a lot of reading! Thanks for the

information! I am so glad you are on this group!! Deb A

[Guest guest]

Deb,

That's what doctors used to think too, and I don't know why they ever

thought TOBI wouldn't get into the bloodstream. It makes you wonder

if they all flunked Physiology 101 in med school!

Basically, whatever you inhale manages to get into the blood stream,

because after all, oxygen and blood are exchanged in the lungs.

Think about cigarettes. People inhale the smoke, tar, and nicotene

into their lungs. But that stuff doesn't stop there. It goes into

their blood and circulates throughout the entire body. That's why,

even after smokers brush their teeth you can smell it on their

breath: it's in the blood and they breathe it out.

Same thing with eating strong foods such as garlic. You eat the

garlic, it goes through the digestion process, which involves the

circulatory system. Red blood cells exhange oxygen and carbon

monoxide in the lungs. You breathe in oxygen and breathe out carbon

monoxide and whatever else is circulating in the bloodstream.

Have you ever met someone with really bad breath? I mean really

putrid breath even after brushing teeth? Sure, sometimes the odor is

from poor oral hygeine, but very often it's caused by poor digestion.

Usually these people suffer from chonic constipation and their breath

acually smells like old poop.

In fact, when people are in drowning situations, even when they

recover there is still a risk of death days later. It's because if

you inhale too much water into the lungs, that water gets into your

blood. The water dilutes the blood causing a huge imbalance.

Also, when people began inhaling GSH, one of the side-effects they

reported was the need to reduce enzymes. The only way to explain that

is recognizing inhaled GSH circulates in the bloodstream.

That's why when some people experienced bronchoconstriction with GSH

inhalations (especially those with an asthma component), I decided to

give my son oral GSH instead of having him inhale it.

Kim

I always thought when you did Tobi on and IV there was a higher risk

of going deaf if not monitored. But doing in haled is not as much of

a risk because it is not going through out you blood stream. Deb A

[Guest guest]

Hi Deb,

Thanks for such a nice note. And yep, I do a lot of reading! Pretty

much any form of science interests me, biology, chemistry, nutrition -

- heck anything medically related -- has always fascinated me (I also

love studying astronomy but geology bores me to mindnumbing degrees).

In 4th grade, I used to sneak into my mom's bedroom to look at her

old nursing textbooks. The one about birthing babies was awful --

black and white photos of nurses shaving the pubic area, and doctors

in long white coats, white caps and masks and big black gloves

pulling babies out with scary looking metal scalpels. Geez, with that

early memory, it's a wonder I ever had kids of my own!

When I was in high school, I used my babysitting money to buy my own

multivitamin/mineral tablets. No one else in my family took any at

the time, I just read about them and thought it was a good idea;

though, Mom always gave us vitamin C at the first sign of any illness.

To this day, I'll read anything related to health -- even if it's

medical fiction like the Kay Scarpetta series by Cornwell.

And the only time I miss ER on television, is when it interferes with

opening night of my daughter's dance recitals. Like it did last

Thursday -- I missed the seaon finale so I have no idea what happened

and now I have to wait for reruns!

Kim

Kim

You always seem to amaze me!! You must do a lot of reading! Thanks

for the information! I am so glad you are on this group!! Deb A

[Guest guest]

Don't worry you didn't miss much on ER. It didn't involve most of the

usual characters from the show just Luka and . They were doing

their volunteer medical work and there was a lot of blood shed and

violence because they were in a war torn country. It wasn't bad, it just

didn't involve a lot of the usual characters so you didn't miss much of

the current storylines by missing it. I just thought I would help get

you up to date.

- mom to Emma 2 1/2 years w/cf and Isabelle 4 1/2 years wo/cf

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[Guest guest]

In a message dated 5/25/2003 4:24:26 PM Central Daylight Time,

kimpayne@... writes:

>

> Hi Deb,

>

> Thanks for such a nice note. And yep, I do a lot of reading! Pretty

> much any form of science interests me, biology, chemistry, nutrition -

> - heck anything medically related -- has always fascinated me (I also

> love studying astronomy but geology bores me to mindnumbing degrees).

>

> In 4th grade, I used to sneak into my mom's bedroom to look at her

> old nursing textbooks. The one about birthing babies was awful --

> black and white photos of nurses shaving the pubic area, and doctors

> in long white coats, white caps and masks and big black gloves

> pulling babies out with scary looking metal scalpels. Geez, with that

> early memory, it's a wonder I ever had kids of my own!

>

> When I was in high school, I used my babysitting money to buy my own

> multivitamin/mineral tablets. No one else in my family took any at

> the time, I just read about them and thought it was a good idea;

> though, Mom always gave us vitamin C at the first sign of any illness.

>

> To this day, I'll read anything related to health -- even if it's

> medical fiction like the Kay Scarpetta series by Cornwell.

> And the only time I miss ER on television, is when it interferes with

> opening night of my daughter's dance recitals. Like it did last

> Thursday -- I missed the seaon finale so I have no idea what happened

> and now I have to wait for reruns!

>

> Kim

Well, you should have been a doctor!! You are a GREAT source of information

and I am so glad you are here! Deb A

[Guest guest]

Hey, thanks . I heard that was leaving the show so I was

afraid they'd kill him off in the season finale!

There's only three shows I watch regularly, Friends, ER and Gilmore

Girls. Other than that when the TV is on it's usually tuned to the

Food channel or Trading Spaces.

Kim

Don't worry you didn't miss much on ER. It didn't involve most of

the usual characters from the show just Luka and . They were

doing their volunteer medical work and there was a lot of blood shed

and violence because they were in a war torn country. It wasn't bad,

it just didn't involve a lot of the usual characters so you didn't

miss much of the current storylines by missing it. I just thought I

would help get you up to date.

- mom to Emma 2 1/2 years w/cf and Isabelle 4 1/2 years wo/cf