R: Digest Number 2539/tobramycin and deafness

[Guest guest]

I haven't a direct experience, but docs advised me about the possibility of this

problem when I started using tobra (both IV and Toby). So I had to advise if any

change occurs.

Mirella

>-----Messaggio originale-----

>Da: cathy flynn

>Inviato: giovedì 22 maggio 2003 12.58

>A: cfparents

>Oggetto: Re: Digest Number 2539/tobramycin and deafness

>

>

>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.

>>

>>

>>