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I have a related question. My son's physician refuses to genotype

him because he doesn't want to deal with the insurance company. (he

also refuses to talk to make a wish and refused to fill out a form

needed for the school district because of frequent absences).

any ideas how to get the information without the physician?

steph, mom of 7 yr old boy wcf

>

>

> hi everyone,

> i have been told by my doctors that they can not find the gene for

> cf in a blood test even though i have tested positive for the sweat

> test four times and have been diagnosed with cf. they said that

they

> can't test my mother or father for the genes because they would be

> identical to mine and if mine don't show up neither would theirs.

> they also can't test my sister for the same reason. i am thinking

of

> adopting because of the cf and how the pregnancy would affect me,

> but my sister how dose not have cf could still pass it on to a

child

> if she were to have one from what i understand. is there anyway to

> find out about the gene so that we could give her a heads up. she

is

> only 19 and a long way from having children but i wonder just the

> same thanks mindy.

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Yes- change physician. That's part of the job.

jan

>refused to fill out a form

> needed for the school district because of frequent absences).

> any ideas how to get the information without the physician?

> steph, mom of 7 yr old boy wcf

>

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I wish we could, but there are only 2 board certified ped

pulmonologists that are considered part of our cf clinic, so there is

not a lot of choice.

fortunately a nurse finally filled out the form and stamped the doc's

name on it, but it took a month!

i'm just frustrated with docs who can control everything but don't

care.

> Yes- change physician. That's part of the job.

>

> jan

>

> >refused to fill out a form

> > needed for the school district because of frequent absences).

> > any ideas how to get the information without the physician?

> > steph, mom of 7 yr old boy wcf

> >

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Fire him, he is no good. Any doctor who is worry about the insurance

company is a good for nothing in my book. If he refuses to deal for

such a small thing then he is going to refuse to prescribe high

dollar medicine, as well. Get rid of the bum!

> >

> >

> > hi everyone,

> > i have been told by my doctors that they can not find the gene

for

> > cf in a blood test even though i have tested positive for the

sweat

> > test four times and have been diagnosed with cf. they said that

> they

> > can't test my mother or father for the genes because they would

be

> > identical to mine and if mine don't show up neither would theirs.

> > they also can't test my sister for the same reason. i am thinking

> of

> > adopting because of the cf and how the pregnancy would affect me,

> > but my sister how dose not have cf could still pass it on to a

> child

> > if she were to have one from what i understand. is there anyway

to

> > find out about the gene so that we could give her a heads up. she

> is

> > only 19 and a long way from having children but i wonder just the

> > same thanks mindy.

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Oh, geez, we're already on pulmozyme and tobi... are there more high

dollar meds???

> > >

> > >

> > > hi everyone,

> > > i have been told by my doctors that they can not find the gene

> for

> > > cf in a blood test even though i have tested positive for the

> sweat

> > > test four times and have been diagnosed with cf. they said that

> > they

> > > can't test my mother or father for the genes because they would

> be

> > > identical to mine and if mine don't show up neither would

theirs.

> > > they also can't test my sister for the same reason. i am

thinking

> > of

> > > adopting because of the cf and how the pregnancy would affect

me,

> > > but my sister how dose not have cf could still pass it on to a

> > child

> > > if she were to have one from what i understand. is there anyway

> to

> > > find out about the gene so that we could give her a heads up.

she

> > is

> > > only 19 and a long way from having children but i wonder just

the

> > > same thanks mindy.

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I think you are pretty much up there. But, if he is concerned with

what the insurance company may say, that is a huge red flag!

Been there once.

> > > >

> > > >

> > > > hi everyone,

> > > > i have been told by my doctors that they can not find the

gene

> > for

> > > > cf in a blood test even though i have tested positive for the

> > sweat

> > > > test four times and have been diagnosed with cf. they said

that

> > > they

> > > > can't test my mother or father for the genes because they

would

> > be

> > > > identical to mine and if mine don't show up neither would

> theirs.

> > > > they also can't test my sister for the same reason. i am

> thinking

> > > of

> > > > adopting because of the cf and how the pregnancy would affect

> me,

> > > > but my sister how dose not have cf could still pass it on to

a

> > > child

> > > > if she were to have one from what i understand. is there

anyway

> > to

> > > > find out about the gene so that we could give her a heads up.

> she

> > > is

> > > > only 19 and a long way from having children but i wonder just

> the

> > > > same thanks mindy.

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You MUST go to a CF center OR pick a ped & tell him you want a visit appt.

Get him to sign all the papers & they use him/her if there is a nonrelated

reason. stumped toe(?)

LOVE & HUGS, GRDMBEV

Re: cf gene

I have a related question. My son's physician refuses to genotype

him because he doesn't want to deal with the insurance company. (he

also refuses to talk to make a wish and refused to fill out a form

needed for the school district because of frequent absences).

any ideas how to get the information without the physician?

steph, mom of 7 yr old boy wcf

>

>

> hi everyone,

> i have been told by my doctors that they can not find the gene for

> cf in a blood test even though i have tested positive for the sweat

> test four times and have been diagnosed with cf. they said that

they

> can't test my mother or father for the genes because they would be

> identical to mine and if mine don't show up neither would theirs.

> they also can't test my sister for the same reason. i am thinking

of

> adopting because of the cf and how the pregnancy would affect me,

> but my sister how dose not have cf could still pass it on to a

child

> if she were to have one from what i understand. is there anyway to

> find out about the gene so that we could give her a heads up. she

is

> only 19 and a long way from having children but i wonder just the

> same thanks mindy.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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get THE NURSE TO ALL THE FORMS FOR ANYTHING YOU NEED . then IT IS ALL

CORRECT . THE WISH FORM, THE SCHOOL & ANY OTHER THING YOU WANT

I AM GALS YOU FOUND THE LIGHT FOR THAT DARK TUNNEL THE DOC IS IN

love & hugs, GRANDMOMbev

Re: cf gene

I wish we could, but there are only 2 board certified ped

pulmonologists that are considered part of our cf clinic, so there is

not a lot of choice.

fortunately a nurse finally filled out the form and stamped the doc's

name on it, but it took a month!

i'm just frustrated with docs who can control everything but don't

care.

> Yes- change physician. That's part of the job.

>

> jan

>

> >refused to fill out a form

> > needed for the school district because of frequent absences).

> > any ideas how to get the information without the physician?

> > steph, mom of 7 yr old boy wcf

> >

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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I would look for a new doc if he refused to " deal " with the issues you

have,. Make a Wish.typing of the genes and school issues. Dont you have a

Social worker thru the hospital that could help you with these things. THe

cf center my son went to in Ohio could not of been more accomadating in any

of these matters. Make a wish is a very wonderful organization and your

child should be able to get a wish. If your cf doc wont help go to another

doc you know. Also as far as the school situation, shame on the doctor for

not helping to make that easier on you. They have pamplets that explain all

about cf and how the children might miss school. I wouild go to the

hospital administrator and get these issued settled. that doctor is just

adding more stress to your life and that isnt fair.

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: cf gene

>Date: Wed, 12 Nov 2003 20:00:21 -0700

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>

>Does he attend an accredited CF center overseen by the CF Foundation?

>Lenora

>

> >I have a related question. My son's physician refuses to genotype

> >him because he doesn't want to deal with the insurance company. (he

> >also refuses to talk to make a wish and refused to fill out a form

> >needed for the school district because of frequent absences).

> >any ideas how to get the information without the physician?

> >steph, mom of 7 yr old boy wcf

> >

> >

> >>

> >>

> >> hi everyone,

> >> i have been told by my doctors that they can not find the gene for

> >> cf in a blood test even though i have tested positive for the sweat

> >> test four times and have been diagnosed with cf. they said that

> >they

> >> can't test my mother or father for the genes because they would be

> >> identical to mine and if mine don't show up neither would theirs.

> >> they also can't test my sister for the same reason. i am thinking

> >of

> >> adopting because of the cf and how the pregnancy would affect me,

> >> but my sister how dose not have cf could still pass it on to a

> >child

> >> if she were to have one from what i understand. is there anyway to

> >> find out about the gene so that we could give her a heads up. she

> >is

> >> only 19 and a long way from having children but i wonder just the

> >> same thanks mindy.

> >

> >

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Does he attend an accredited CF center overseen by the CF Foundation?

Lenora

>I have a related question. My son's physician refuses to genotype

>him because he doesn't want to deal with the insurance company. (he

>also refuses to talk to make a wish and refused to fill out a form

>needed for the school district because of frequent absences).

>any ideas how to get the information without the physician?

>steph, mom of 7 yr old boy wcf

>

>

>>

>>

>> hi everyone,

>> i have been told by my doctors that they can not find the gene for

>> cf in a blood test even though i have tested positive for the sweat

>> test four times and have been diagnosed with cf. they said that

>they

>> can't test my mother or father for the genes because they would be

>> identical to mine and if mine don't show up neither would theirs.

>> they also can't test my sister for the same reason. i am thinking

>of

>> adopting because of the cf and how the pregnancy would affect me,

>> but my sister how dose not have cf could still pass it on to a

>child

>> if she were to have one from what i understand. is there anyway to

>> find out about the gene so that we could give her a heads up. she

>is

>> only 19 and a long way from having children but i wonder just the

>> same thanks mindy.

>

>

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Steph,

Our experience with our HMO in-network CFF accredited cf clinic was

a nightmare. The pulmonologist was semi retired and lacked a pulse,

well at least a personality. As soon as he heard Zach's genotype,

he diagnosed Zach as having a mild case of cf and cpt for him would

be trivial compared to getting lots of exercise. I freaked out and

got an out-of-network referral from my pediatrician to another

clinic. The referral was denied. We had to appeal. During the

appeals process they requested the office notes from our visit. The

notes could not be faxed to the insurance company because they did

not exist. The doctor wrote nothing down! Our insurance company

approved the out-of-network cf clinic finally, but not before

reminding me that I was welcome to pay for these services myself!

I hope you can find a doctor more interested in properly caring for

all your son's needs.

A quick idea about genetic testing. You and your son's father could

be tested. Then you would know the genes your son inherited.

Sara

Good luck! I hope you find a physician that takes an interest in

taking care of your son needs.

Sara - mommy of Zach 21 months

> I have a related question. My son's physician refuses to genotype

> him because he doesn't want to deal with the insurance company.

(he

> also refuses to talk to make a wish and refused to fill out a form

> needed for the school district because of frequent absences).

> any ideas how to get the information without the physician?

> steph, mom of 7 yr old boy wcf

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In as few words as possible get a new dr this one is terrible

Maureen

Re: cf gene

> I have a related question. My son's physician refuses to genotype

> him because he doesn't want to deal with the insurance company. (he

> also refuses to talk to make a wish and refused to fill out a form

> needed for the school district because of frequent absences).

> any ideas how to get the information without the physician?

> steph, mom of 7 yr old boy wcf

>

>

> >

> >

> > hi everyone,

> > i have been told by my doctors that they can not find the gene for

> > cf in a blood test even though i have tested positive for the sweat

> > test four times and have been diagnosed with cf. they said that

> they

> > can't test my mother or father for the genes because they would be

> > identical to mine and if mine don't show up neither would theirs.

> > they also can't test my sister for the same reason. i am thinking

> of

> > adopting because of the cf and how the pregnancy would affect me,

> > but my sister how dose not have cf could still pass it on to a

> child

> > if she were to have one from what i understand. is there anyway to

> > find out about the gene so that we could give her a heads up. she

> is

> > only 19 and a long way from having children but i wonder just the

> > same thanks mindy.

>

>

>

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

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

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Thank you all for your support. Just to respond to a few questions,

yes we have a social worker (although we've never really used her

for anything). I will try to get the MAW through his

pediatrician. I'll let you know how it goes!

> > >

> > >

> > > hi everyone,

> > > i have been told by my doctors that they can not find the gene

for

> > > cf in a blood test even though i have tested positive for the

sweat

> > > test four times and have been diagnosed with cf. they said that

> > they

> > > can't test my mother or father for the genes because they

would be

> > > identical to mine and if mine don't show up neither would

theirs.

> > > they also can't test my sister for the same reason. i am

thinking

> > of

> > > adopting because of the cf and how the pregnancy would affect

me,

> > > but my sister how dose not have cf could still pass it on to a

> > child

> > > if she were to have one from what i understand. is there

anyway to

> > > find out about the gene so that we could give her a heads up.

she

> > is

> > > only 19 and a long way from having children but i wonder just

the

> > > same thanks mindy.

> >

> >

> >

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

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

> >

> >

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