R: Fw: Tobi/Tine/Don't give up

[Guest guest]

At CHOC (Children's Orange County in CA) the docs do tell you of the side

effects of the drugs they prescribe for our kids. I'm so sorry that a lot of

you

have had problems with your docs keeping you in the dark. Are most of these

docs from accredited CF Centers? If so, you can report these instances to the

CF Foundation.

Amber,

Nick's mom

[Guest guest]

I am quite surprised that meds don't warn about the possible problems that

tobramycin can cause to hear! The ototoxicity of tobramycin and gentamycin is

known: even when I was a child, I knew the possible effects of these

antibiotics.

Probably they think that is better to hide the problem, but it is our right to

know all possible side effect of the drugs we use.

A want to report the story of one CF patient, a young girl (about 18 years old)

who some years ago has gone deaf after several cycles of tobramycin : she was

told that tobramycin was not the cause bacause the low level of the doses they

dispensed. Well, she was deaf, and no other cause was found!

Mirella (45yo/wcf)

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

>Da: wijker.zwaan

>Inviato: sabato 24 maggio 2003 8.12

>A: cfparents

>Oggetto: Fw: Tobi/Tine/Don't give up

>

>

>

>-----Oorspronkelijk bericht-----

>Van: a Varga

>Aan: wijker.zwaan

>Datum: vrijdag 23 mei 2003 23:37

>Onderwerp: Re: Tobi/Tine/Don't give up

>

>

>Hi again Tine,

>

>Yes, I will let you know what comes out of Monday.

>

>My friend that has gone deaf, has been told by the specialists

>that it is from the Tobramycin. has been on both IV and

>inhaled quite extensively and his hearing has got worse and

>worse. This is what I am cranky about, because they have never

>once warned us of the side effects. Anyway as Cathy said in

>one of her posts, it is either the devil or the deep blue sea.

>

>Let you know what happens. Sometimes I feel so frustrated with

>this disease, as every time you think you are getting ahead

>and making some progress, something else comes along just too

>knock you off your feet and make you feel defeated.

>

>Well, we won't be defeated and we will all just keep getting

>up!!!!!! Keep going out there, to all of you who just feel

>like giving up. We are strong for a purpose and that is too

>keep fighting. Many times we do not know what is in us, until

>it is needed. Be encouraged guys, because you are strong.

>

>I don't know why I started to write all that, except I know it

>was for someone out there.

>

>DON'T GIVE UP. YOU WILL FIND YOU HAVE WHAT YOU NEED INSIDE YOU

>TO KEEP GOING.

>

>Regards a.

>

>

> " wijker.zwaan " wrote:

> Dear a,

>

> There is no proof that my friends daughter did get the

>hearing problems through the Tobi inhalation. It could be a

>coincidence. But the problems began starting Tobi. She knew I

>always read the post of this list and asked me to try and get

>any information about this.

> There is also a difference in Tobi inhalation and IV.

>Gwendolynn never had IV's up till now (and no Tobi inhalation

>either) and my friends daughter only inhaled it. So we do not

>know anything about that. I just read that in that case

>fingerpricks are done. Are they done every day? Are you doing

>them at home also?

>

> We just do not know if the inhaled Tobi and the hearing

>loss is related. Any information on that and experiences of

>users might be helpfull. So please ask your doctor in your

>centre what he knows and thinks about the side effects. We may

>learn from eachother.

>

> Thanks for your information and please let me know what

>you discover on Monday.

>

> Best regards,

>

> Tine Zwaan

>

>

>

>

>---------------------------------------------------------------

>-----------------

>Yahoo! Mobile

>- Check & compose your email via SMS on your Telstra or

>Vodafone mobile.

>

>

>

[Guest guest]

Mirella where are you in Italy. My dad was from Montebello di

Bertona, PE. I think my CF gene comes from my 50% Italian not my

Hispanic side, I may be wrong but Charlie my husband is 100% Italian

and of course he has the CF gene otherwise a would not have CF.

Ironies of life come all the way from Venezuela and marry and Italian

who's also a CF carrier of course neither one of us never knew that

we were carriers.

Love,

mom of a 9 wcf, Venanzio 6 wocf, Pepe 3 wocf

> > Dear a,

> >

> > There is no proof that my friends daughter did get the

> >hearing problems through the Tobi inhalation. It could be a

> >coincidence. But the problems began starting Tobi. She knew I

> >always read the post of this list and asked me to try and get

> >any information about this.

> > There is also a difference in Tobi inhalation and IV.

> >Gwendolynn never had IV's up till now (and no Tobi inhalation

> >either) and my friends daughter only inhaled it. So we do not

> >know anything about that. I just read that in that case

> >fingerpricks are done. Are they done every day? Are you doing

> >them at home also?

> >

> > We just do not know if the inhaled Tobi and the hearing

> >loss is related. Any information on that and experiences of

> >users might be helpfull. So please ask your doctor in your

> >centre what he knows and thinks about the side effects. We may

> >learn from eachother.

> >

> > Thanks for your information and please let me know what

> >you discover on Monday.

> >

> > Best regards,

> >

> > Tine Zwaan

> >

> >

> >

> >

> >---------------------------------------------------------------

> >-----------------

> >Yahoo! Mobile

> >- Check & compose your email via SMS on your Telstra or

> >Vodafone mobile.

> >

> >

> >

[Guest guest]

Mirella where are you in Italy. My dad was from Montebello di

Bertona, PE. I think my CF gene comes from my 50% Italian not my

Hispanic side, I may be wrong but Charlie my husband is 100% Italian

and of course he has the CF gene otherwise a would not have CF.

Ironies of life come all the way from Venezuela and marry and Italian

who's also a CF carrier of course neither one of us never knew that

we were carriers.

Love,

mom of a 9 wcf, Venanzio 6 wocf, Pepe 3 wocf

> > Dear a,

> >

> > There is no proof that my friends daughter did get the

> >hearing problems through the Tobi inhalation. It could be a

> >coincidence. But the problems began starting Tobi. She knew I

> >always read the post of this list and asked me to try and get

> >any information about this.

> > There is also a difference in Tobi inhalation and IV.

> >Gwendolynn never had IV's up till now (and no Tobi inhalation

> >either) and my friends daughter only inhaled it. So we do not

> >know anything about that. I just read that in that case

> >fingerpricks are done. Are they done every day? Are you doing

> >them at home also?

> >

> > We just do not know if the inhaled Tobi and the hearing

> >loss is related. Any information on that and experiences of

> >users might be helpfull. So please ask your doctor in your

> >centre what he knows and thinks about the side effects. We may

> >learn from eachother.

> >

> > Thanks for your information and please let me know what

> >you discover on Monday.

> >

> > Best regards,

> >

> > Tine Zwaan

> >

> >

> >

> >

> >---------------------------------------------------------------

> >-----------------

> >Yahoo! Mobile

> >- Check & compose your email via SMS on your Telstra or

> >Vodafone mobile.

> >

> >

> >