Re: Hospital arrogance = ignorance?

March 31, 2006

now that CHARGE is identified as a mutation of a gene it is my understanding

from the CHARGE conference this summer that it is a Syndrome and not an

association. I remember earlier years some of her drs did call it assoication.

i have since then corrected erikas drs that it is a syndrome.

cathie, mom to erika

March 31, 2006

kate, i believe it is 4 out of the 6 acronyms to be CHARGE.

are you the PT that works for BOCES and Northport District?

March 31, 2006

thats stupid r is for renal and g is for growth not the other way around and

it is a syndrome think it used to be association in fact to me the

foundation could be called an accosiation not the syndrome its self just

liek u could call a hosptial an association hmm lucky she wasnt there huh id

of loved to of wacked her at least she knew wat she was on about which is a

pluss for her

>

> Hi everyone

>

> Discussing yesterday with a doctor yesterday (not a consultant) on

> her admission to hospital, doctor started to run through the CHARGE

> acronym

> (before I question her on why she is running through this). She gets to R

> and asks about 's kidney history and then with G asks about feeding

> (growth). I say R stands for ..... and G for .... and say that this

> diagnostic criteria is out of date and her comment is that yes they

> probably

> are way of date!

>

> She finishes her questions and as she was about to leave I asked her why

> she

> uses the acronym in this way. It would seem that this is how she has been

> taught at this hospital. I explained the current diagnostic criteria and

> she

> then said that she wasn't relying on diagnostic criteria for her questions

> but that the hospital has effectively changed the definition in order to

> develop their own aide memoire so that they remember what to ask about!

>

> She also referred to CHARGE Association and I queried this and told her it

> was a syndrome - a gene mutation had been discovered. So we discussed what

> tests were used etc (Flo is very glad she wasn't there - me with a bee in

> my

> bonnet).

>

> I have no criticism of the particular doctor but of her teaching - indeed

> when I said to her of my involvement with the CHARGE Family Support Group

> she actually commented that perhaps they ought to get me in for an update.

> Even if she was being polite this is way much more than you get out of

> most

> doctors there.

>

> This hospital regards itself as the best children's hospital in the UK and

> is of world renown - The Great Ormond Street Hospital for Sick Children

> NHS

> Trust.

>

> Comments/thoughts?

>

> Simon

>

April 1, 2006

I just posted a long reply to this and Yahoo misplaced my reply!! Okay

so here goes again and if it double posts, forgive me.

That doesn't surprise me at all about the hospital. When I lived in

Hawaii, my son was being seen at a " teaching " hospital, yet every time

I took him in for something, the doctors would say " ...and remind me

again what CHARGE stands for?? " ! Granted, from what I understand, he

was one of two children in the state with CHARGE. However, you are in a

much more " metropolitan " area than I was in, so it is a little

suprising, especially in light of the recent and HUGE finding of the

gene mutation.

I find my brochures from the foundation come in handy. I pass them out

to every health professional (and therapist) we come across. In fact, I

need to order more.

You should be there during morning rounds when is admitted,

complete with posters and Power Point presentation! Then pass out a pop

quiz for the docs!! They'll love it!!

April 1, 2006

I just posted a long reply to this and Yahoo misplaced my reply!! Okay

so here goes again and if it double posts, forgive me.

That doesn't surprise me at all about the hospital. When I lived in

Hawaii, my son was being seen at a " teaching " hospital, yet every time

I took him in for something, the doctors would say " ...and remind me

again what CHARGE stands for?? " ! Granted, from what I understand, he

was one of two children in the state with CHARGE. However, you are in a

much more " metropolitan " area than I was in, so it is a little

suprising, especially in light of the recent and HUGE finding of the

gene mutation.

I find my brochures from the foundation come in handy. I pass them out

to every health professional (and therapist) we come across. In fact, I

need to order more.

You should be there during morning rounds when is admitted,

complete with posters and Power Point presentation! Then pass out a pop

quiz for the docs!! They'll love it!!

April 1, 2006

I just posted a long reply to this and Yahoo misplaced my reply!! Okay

so here goes again and if it double posts, forgive me.

That doesn't surprise me at all about the hospital. When I lived in

Hawaii, my son was being seen at a " teaching " hospital, yet every time

I took him in for something, the doctors would say " ...and remind me

again what CHARGE stands for?? " ! Granted, from what I understand, he

was one of two children in the state with CHARGE. However, you are in a

much more " metropolitan " area than I was in, so it is a little

suprising, especially in light of the recent and HUGE finding of the

gene mutation.

I find my brochures from the foundation come in handy. I pass them out

to every health professional (and therapist) we come across. In fact, I

need to order more.

You should be there during morning rounds when is admitted,

complete with posters and Power Point presentation! Then pass out a pop

quiz for the docs!! They'll love it!!

April 1, 2006

Okay, now I'm a little confused. When Meagan was diagnosed (a little over a

year ago), I was told that CHARGE stood for:

C Coloboma

H Heart Defects

A Atresia of the Choanae

R Retardation of Growth (due to heart defects)

G Genetal Defects

E Ear Anomolies

Is this not correct?

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

April 1, 2006

Okay, now I'm a little confused. When Meagan was diagnosed (a little over a

year ago), I was told that CHARGE stood for:

C Coloboma

H Heart Defects

A Atresia of the Choanae

R Retardation of Growth (due to heart defects)

G Genetal Defects

E Ear Anomolies

Is this not correct?

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

April 1, 2006

Okay, now I'm a little confused. When Meagan was diagnosed (a little over a

year ago), I was told that CHARGE stood for:

C Coloboma

H Heart Defects

A Atresia of the Choanae

R Retardation of Growth (due to heart defects)

G Genetal Defects

E Ear Anomolies

Is this not correct?

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

April 1, 2006

brandi that is correct c is for colibomas but each of these have mroe than

one so c that way i thought was c is colibomas h is for heart a is artreisa

of conaae and cleft lip or palate r is retardation of growth not linkked to

heart deffects well it is but it isnt the heart deffects well i havent got

any and i have growth problems so taht means that its nto directly linked to

the heart but r is also retardation of developmental and it also is reflux

weather it be renal or oesophageal g is for genital hyplacia and e is for

the ears hop i amde that clearer

>

> Okay, now I'm a little confused. When Meagan was diagnosed (a little over

> a

> year ago), I was told that CHARGE stood for:

>

> C Coloboma

> H Heart Defects

> A Atresia of the Choanae

> R Retardation of Growth (due to heart defects)

> G Genetal Defects

> E Ear Anomolies

>

> Is this not correct?

>

> , mommy to Meagan (CHaRgE) and 17 months, and big brother

>

> 3 1/2 years, married to the best daddy in the world for 9 years

>

April 1, 2006

here is the acutaly explanation form the aus charge website

Coloboma of the eye

• Heart defect

• Atresia of the Choanae

• Retardation of growth and/or development

• Genital hypoplasia

• Ear malformatio

>

> brandi that is correct c is for colibomas but each of these have mroe than

> one so c that way i thought was c is colibomas h is for heart a is artreisa

> of conaae and cleft lip or palate r is retardation of growth not linkked to

> heart deffects well it is but it isnt the heart deffects well i havent got

> any and i have growth problems so taht means that its nto directly linked to

> the heart but r is also retardation of developmental and it also is reflux

> weather it be renal or oesophageal g is for genital hyplacia and e is for

> the ears hop i amde that clearer

>

> >

> > Okay, now I'm a little confused. When Meagan was diagnosed (a little

> > over a

> > year ago), I was told that CHARGE stood for:

> >

> > C Coloboma

> > H Heart Defects

> > A Atresia of the Choanae

> > R Retardation of Growth (due to heart defects)

> > G Genetal Defects

> > E Ear Anomolies

> >

> > Is this not correct?

> >

> > , mommy to Meagan (CHaRgE) and 17 months, and big brother

> >

> > 3 1/2 years, married to the best daddy in the world for 9 years

> >

April 1, 2006

here is the acutaly explanation form the aus charge website

Coloboma of the eye

• Heart defect

• Atresia of the Choanae

• Retardation of growth and/or development

• Genital hypoplasia

• Ear malformatio

>

> brandi that is correct c is for colibomas but each of these have mroe than

> one so c that way i thought was c is colibomas h is for heart a is artreisa

> of conaae and cleft lip or palate r is retardation of growth not linkked to

> heart deffects well it is but it isnt the heart deffects well i havent got

> any and i have growth problems so taht means that its nto directly linked to

> the heart but r is also retardation of developmental and it also is reflux

> weather it be renal or oesophageal g is for genital hyplacia and e is for

> the ears hop i amde that clearer

>

> >

> > Okay, now I'm a little confused. When Meagan was diagnosed (a little

> > over a

> > year ago), I was told that CHARGE stood for:

> >

> > C Coloboma

> > H Heart Defects

> > A Atresia of the Choanae

> > R Retardation of Growth (due to heart defects)

> > G Genetal Defects

> > E Ear Anomolies

> >

> > Is this not correct?

> >

> > , mommy to Meagan (CHaRgE) and 17 months, and big brother

> >

> > 3 1/2 years, married to the best daddy in the world for 9 years

> >

April 1, 2006

here is the acutaly explanation form the aus charge website

Coloboma of the eye

• Heart defect

• Atresia of the Choanae

• Retardation of growth and/or development

• Genital hypoplasia

• Ear malformatio

>

> brandi that is correct c is for colibomas but each of these have mroe than

> one so c that way i thought was c is colibomas h is for heart a is artreisa

> of conaae and cleft lip or palate r is retardation of growth not linkked to

> heart deffects well it is but it isnt the heart deffects well i havent got

> any and i have growth problems so taht means that its nto directly linked to

> the heart but r is also retardation of developmental and it also is reflux

> weather it be renal or oesophageal g is for genital hyplacia and e is for

> the ears hop i amde that clearer

>

> >

> > Okay, now I'm a little confused. When Meagan was diagnosed (a little

> > over a

> > year ago), I was told that CHARGE stood for:

> >

> > C Coloboma

> > H Heart Defects

> > A Atresia of the Choanae

> > R Retardation of Growth (due to heart defects)

> > G Genetal Defects

> > E Ear Anomolies

> >

> > Is this not correct?

> >

> > , mommy to Meagan (CHaRgE) and 17 months, and big brother

> >

> > 3 1/2 years, married to the best daddy in the world for 9 years

> >

April 1, 2006

Ellen, thank you! You are such a doll!

-- Re: Re: Hospital arrogance = ignorance?

brandi that is correct c is for colibomas but each of these have mroe than

one so c that way i thought was c is colibomas h is for heart a is artreisa

of conaae and cleft lip or palate r is retardation of growth not linkked to

heart deffects well it is but it isnt the heart deffects well i havent got

any and i have growth problems so taht means that its nto directly linked to

the heart but r is also retardation of developmental and it also is reflux

weather it be renal or oesophageal g is for genital hyplacia and e is for

the ears hop i amde that clearer

>

> Okay, now I'm a little confused. When Meagan was diagnosed (a little over

> a

> year ago), I was told that CHARGE stood for:

>

> C Coloboma

> H Heart Defects

> A Atresia of the Choanae

> R Retardation of Growth (due to heart defects)

> G Genetal Defects

> E Ear Anomolies

>

> Is this not correct?

>

> , mommy to Meagan (CHaRgE) and 17 months, and big brother

>

> 3 1/2 years, married to the best daddy in the world for 9 years

>

April 1, 2006

The last time I spoke with a physician about CHARGE, he too referred

to it as CHARGE Association. It was in regards to a young patient I

was seeing, who I am positive has CHARGE. The parents were told by

the geneticist that he didn't have " enough " symptoms to be CHARGE,

although no testing was done. The pediatrician also though the child

had CHARGE, but was definately not up to speed.

We'll get them educated, one doctor at a time!

Kate (PT in New York)

April 1, 2006

The last time I spoke with a physician about CHARGE, he too referred

to it as CHARGE Association. It was in regards to a young patient I

was seeing, who I am positive has CHARGE. The parents were told by

the geneticist that he didn't have " enough " symptoms to be CHARGE,

although no testing was done. The pediatrician also though the child

had CHARGE, but was definately not up to speed.

We'll get them educated, one doctor at a time!

Kate (PT in New York)

April 1, 2006

The last time I spoke with a physician about CHARGE, he too referred

to it as CHARGE Association. It was in regards to a young patient I

was seeing, who I am positive has CHARGE. The parents were told by

the geneticist that he didn't have " enough " symptoms to be CHARGE,

although no testing was done. The pediatrician also though the child

had CHARGE, but was definately not up to speed.

We'll get them educated, one doctor at a time!

Kate (PT in New York)

April 1, 2006

You know the reason I decided to talk more about CHARGE and Evas

story was to get more info out there about CHARGE. I would say 95%

of the people I talk to never heard of it. I have ot fill them in. I

think we need to get more info out there about this!!

Crystal and Eva (11 1/2 month charger)

>

> Hi everyone

>

> Discussing yesterday with a doctor yesterday (not a

consultant) on

> her admission to hospital, doctor started to run through the

CHARGE acronym

> (before I question her on why she is running through this). She

gets to R

> and asks about 's kidney history and then with G asks about

feeding

> (growth). I say R stands for ..... and G for .... and say that this

> diagnostic criteria is out of date and her comment is that yes

they probably

> are way of date!

>

> She finishes her questions and as she was about to leave I asked

her why she

> uses the acronym in this way. It would seem that this is how she

has been

> taught at this hospital. I explained the current diagnostic

criteria and she

> then said that she wasn't relying on diagnostic criteria for her

questions

> but that the hospital has effectively changed the definition in

order to

> develop their own aide memoire so that they remember what to ask

about!

>

> She also referred to CHARGE Association and I queried this and

told her it

> was a syndrome - a gene mutation had been discovered. So we

discussed what

> tests were used etc (Flo is very glad she wasn't there - me with a

bee in my

> bonnet).

>

> I have no criticism of the particular doctor but of her teaching -

indeed

> when I said to her of my involvement with the CHARGE Family

Support Group

> she actually commented that perhaps they ought to get me in for an

update.

> Even if she was being polite this is way much more than you get

out of most

> doctors there.

>

> This hospital regards itself as the best children's hospital in

the UK and

> is of world renown - The Great Ormond Street Hospital for Sick

Children NHS

> Trust.

>

> Comments/thoughts?

>

> Simon

>

April 1, 2006

You know the reason I decided to talk more about CHARGE and Evas

story was to get more info out there about CHARGE. I would say 95%

of the people I talk to never heard of it. I have ot fill them in. I

think we need to get more info out there about this!!

Crystal and Eva (11 1/2 month charger)

>

> Hi everyone

>

> Discussing yesterday with a doctor yesterday (not a

consultant) on

> her admission to hospital, doctor started to run through the

CHARGE acronym

> (before I question her on why she is running through this). She

gets to R

> and asks about 's kidney history and then with G asks about

feeding

> (growth). I say R stands for ..... and G for .... and say that this

> diagnostic criteria is out of date and her comment is that yes

they probably

> are way of date!

>

> She finishes her questions and as she was about to leave I asked

her why she

> uses the acronym in this way. It would seem that this is how she

has been

> taught at this hospital. I explained the current diagnostic

criteria and she

> then said that she wasn't relying on diagnostic criteria for her

questions

> but that the hospital has effectively changed the definition in

order to

> develop their own aide memoire so that they remember what to ask

about!

>

> She also referred to CHARGE Association and I queried this and

told her it

> was a syndrome - a gene mutation had been discovered. So we

discussed what

> tests were used etc (Flo is very glad she wasn't there - me with a

bee in my

> bonnet).

>

> I have no criticism of the particular doctor but of her teaching -

indeed

> when I said to her of my involvement with the CHARGE Family

Support Group

> she actually commented that perhaps they ought to get me in for an

update.

> Even if she was being polite this is way much more than you get

out of most

> doctors there.

>

> This hospital regards itself as the best children's hospital in

the UK and

> is of world renown - The Great Ormond Street Hospital for Sick

Children NHS

> Trust.

>

> Comments/thoughts?

>

> Simon

>

April 1, 2006

" she then said that she wasn't relying on diagnostic criteria for her questions

but that the hospital has effectively changed the definition in order to develop

their own aide memoire so that they remember what to ask about! "

Simon,

I hear your frustration. But it sounds like she was asking all the questions

that were important for 's visit. As long as all the " I " s are dotted and

" T " s are crossed, does it really matter if she is using the letters differently?

In medicine there is a huge volume of information to learn and then later

recall--mnemonic devices are pretty common. As long as the end result is

correct, I would let it slide.

I have heard both CHARGE Syndrome and CHARGE Association (and I even read in

one of Evan's chart notes " CHARGE Association Syndrome " ). I don't know which is

most correct.

(mom to Evan 8.5 mos)

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

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April 2, 2006

Well, I guess I have mixed feelings about this. I have dealt with doctors who

have actually walked into the room and say " Remind me again, what does your son

have? " That was the last time we saw him. I think you just need to surround

yourself with doctors who want to take the time to know and understand.

In the hospital things are always difficult. When we were hospitalized

frequently, and answering questions were getting old, we would just say " I'm

sorry, but you'll need to look at the chart. I know the information is in

there. " Also, like so many of you know, having a history sheet and info sheet

is helpful, you need to make them read it. The only way to do that is to make

them--don't tell them the info. I know this sounds cruel, but i think we have

to make them. I am a nurse, and I know there is not much time in the hospital.

Doctors, residents, and nurses are so busy and need to know so much stuff. It

is very hard for all of them to know everything. Some people will appreciate

the info, others will not. You need to find doctors who care and will take the

time. It took us a while to figure out what we needed, and that was it. Hope

this helps a little. --

Have a great day!!

Kim Menne

mom of Raychel-9, Tyler (CHARGER)-8, -21mo, and wife of Craig, home in MN

April 2, 2006