Re: Doctor's comments uncalled for!

[Guest guest]

LAUREN, I find this comment very appalling to say the least. And definitely

unprofessional!! I don't know where these docs get this superior complex

and think they know it all. I recently was told by my daughter's geneticist

that I needed professional help as well. He said that I was too focused on

my child and that apparently only professional help would help me. He said

that i didn't trust him or anyone else so there must be something wrong with

me. It can't be that I have been to numerous incompetent doctors in the

past year trying to find atleast one who cares enough to help. I was

infuriated!! And in fact, I still am. I don't know where he gets the idea

that he knows it all. He draws some outlandish conclusions from where I

don't know but when I try to correct him, he just laughs and then tells me

that I just need to sit quiet and let him finish. He has an ego the size of

Mars and thinks that men are superior to women. He constantly interrupts me

when I talk and ask my husband... do you see that too or just her? OH,

that really infuriates me. My husband doesn't have a clue and he just sits

there like a bump on a log. I just don't get it. I am just sick of the whole

thing. I am an RN and have worked for and with these kind of doctors who

think they are superior and think us women should just sit back and listen

and speak only when spoken to. Well, that is just not me especially when it

comes to my babies. Sorry, I will get off my soapbox. CAn you tell that

you hit a fresh nerve? I would definitely pursue having that taken out of

the chart and if they don't listen talk to a lawyer and let them know that

you are doing that. Maybe then, they will listen. In the meantime, i think

I would be looking for a different doctor. Sounds like this one does not

have your child's best interest at heart. Thanks for listening and letting

me vent along with you.

cathy

[Guest guest]

Dear ,

you can write your own comments re: this, and get other professionals who

know you and your child to write their comments refuting this. also document

what doc said to you, put it in record.

Doctors can be a tad off their rockers when it comes to dealing with kids

they feel won't make it.... Staci's ex mito specialist/ genetics specialist

put in his report that it would be a blessing for Staci to expire when she

has her next crash. Also wrote that I was " overzealous " in her care.

This would be a " nusiance " lawsuit, but it sure would be NON poetic

justice!

Any lawyers on this list?? Yeah, I know you're lurking there!!!! Hugs to

ya.

I won't blow your cover.

Peace, and consider the source....

Echert

Mom to Staci , age 6, Complex I, globally affected and cute as heck.

Mito is about the only disease I know that makes all look like cherubs!

" Characteristic dysmorphic facial features " is such a negative way to put it!

In a message dated 04/12/2000 6:12:07 PM Pacific Daylight Time,

sfitzger@... writes:>

> I am so angry and humiliated! [snip]

>

> " should it turn out

> that has a fatal disease, mother will require psychiatric help, as

she

> is having trouble dealing with

> 's problems. "

>

> I am furious! This report was sent to all of 's doctors as well as

his

> pediatrician. I am so

> humiliated! My mother actually called this doctor and confronted her

about

> her comments. She acted very

> innocent and said that it must have been her secretary who wrote that; she

> would never put in a child's

> report that the mother needs psyhiatric help. Nontheless, I am trying to

> have this piece of paper removed

> from his files at Children's Hospital, and they won't do it.

>

> I am so upset by this. I mean, my God! Anyone with any love at all for

> their child would have trouble

> coping with their child's illness and need help. I don't pretend to be a

> great pilar of strength. I'm

> devastaed about what is happening to my beautiful child. But I certainly

> don't deserve to be portrayed as

> some basket case who is going to jump off the highest building if her kid

> gets sick.

>

> Am I over reacting here, or is this extremely unprofessional of her?

>

>

>

[Guest guest]

,

I am so utterly sickened by what you wrote about your daughter's ex-specialist

saying it would be a

" blessing " for your daughter to pass away. What a horrible, disrespectful thing

to write in a report!

That makes my stomach turn. First of all, what gives him the right to pass

judgement on who deserves to

live or die. And second of all, how on earth does he think that makes you and

your family feel to read

such words. I am speechless. You must have been horrified when you read that.

Thank goodness you got

rid of that dud.

We definitely don't see that one doctor anymore either, because I was so

turned-off by her. (FYI: Her

name is Dr. Diane Escolar at Children's in Washington, D.C....everyone BEWARE!)

My son is a strong,

healthy boy who is intelligent and loving. She sat there and made him out to be

some horrible case

study. She's a neurologist, but that doesn't necessarily make her a good human

being. Needless to say,

everyone who has received a copy of this woman's report has been treating me

like I've got a screw loose

somewhere.

I would never wish anything bad on anyone, but I'd love to see how much

psychiatric help she needs if one

of her kids gets a rare, incurable disease.

God forbid if we ever love our children so much that their pain becomes ours.

What the heck is being a

parent all about, anyway?

Hrumph.

stacimom@... wrote:

> Dear ,

> you can write your own comments re: this, and get other professionals who

> know you and your child to write their comments refuting this. also document

> what doc said to you, put it in record.

> Doctors can be a tad off their rockers when it comes to dealing with kids

> they feel won't make it.... Staci's ex mito specialist/ genetics specialist

> put in his report that it would be a blessing for Staci to expire when she

> has her next crash. Also wrote that I was " overzealous " in her care.

> This would be a " nusiance " lawsuit, but it sure would be NON poetic

> justice!

> Any lawyers on this list?? Yeah, I know you're lurking there!!!! Hugs to

> ya.

> I won't blow your cover.

>

> Peace, and consider the source....

> Echert

> Mom to Staci , age 6, Complex I, globally affected and cute as heck.

> Mito is about the only disease I know that makes all look like cherubs!

> " Characteristic dysmorphic facial features " is such a negative way to put it!

>

>

> In a message dated 04/12/2000 6:12:07 PM Pacific Daylight Time,

> sfitzger@... writes:>

> > I am so angry and humiliated! [snip]

> >

> > " should it turn out

> > that has a fatal disease, mother will require psychiatric help, as

> she

> > is having trouble dealing with

> > 's problems. "

> >

> > I am furious! This report was sent to all of 's doctors as well as

> his

> > pediatrician. I am so

> > humiliated! My mother actually called this doctor and confronted her

> about

> > her comments. She acted very

> > innocent and said that it must have been her secretary who wrote that; she

> > would never put in a child's

> > report that the mother needs psyhiatric help. Nontheless, I am trying to

> > have this piece of paper removed

> > from his files at Children's Hospital, and they won't do it.

> >

> > I am so upset by this. I mean, my God! Anyone with any love at all for

> > their child would have trouble

> > coping with their child's illness and need help. I don't pretend to be a

> > great pilar of strength. I'm

> > devastaed about what is happening to my beautiful child. But I certainly

> > don't deserve to be portrayed as

> > some basket case who is going to jump off the highest building if her kid

> > gets sick.

> >

> > Am I over reacting here, or is this extremely unprofessional of her?

> >

> >

> >

>

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

> eLerts

> It's Easy. It's Fun. Best of All, it's Free!

> http://click./1/3080/1/_/368657/_/955595896/

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

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

, I think it ridiculous that the doctor even felt the need to chart such a

thing. we all need help with

our children's diseases,whether it is from family, friends, or professional. I

would be worried if we did

not. perhaps she was just trying to be empathetic. she most likely has never

been in our shoes and does not

know how it feels. people are not comfortable not saying anything at all, which

is usually best.

I hope you child improves soon. Mine does not seem to have a life threatening

condition, at least not at this

time. He has had many regressions and better times. He has diagnosis (if you

can call it that, more like

misdiagnosis) of autism, currently looking for mito and MD.

My first child died at age 3 from atypical hypoplastic left heart syndrome. Not

a mito problem, that I am

aware of. So yeah, people are uncomfortable and say things that they don't mean

to that hurt.

And if you, or anyone else on these lists overreacts at times (and I am not

saying that you are), it is

allowed, acceptable.. the only thing worse than having an ill child, is a

missing child.

BTW, it is obvious that you are not a basket case. you are out there trying to

find help for you child, going

to doctors, looking for help thru other parents.. that is called Doing Great!

cara

gr. rapids, MI

Steve Fitzgerald wrote:

> I am so angry and humiliated!

>

> I recently obtained a copy of a report that one of my son's neurologists wrote

from our visit in August.

> After 3 pages of garbage about and the diseases he " might " have, she

writes that, " should it turn out

> that has a fatal disease, mother will require psychiatric help, as she is

having trouble dealing with

> 's problems. "

>

> I am furious! This report was sent to all of 's doctors as well as his

pediatrician. I am so

> humiliated! My mother actually called this doctor and confronted her about

her comments. She acted very

> innocent and said that it must have been her secretary who wrote that; she

would never put in a child's

> report that the mother needs psyhiatric help. Nontheless, I am trying to have

this piece of paper removed

> from his files at Children's Hospital, and they won't do it.

>

> I am so upset by this. I mean, my God! Anyone with any love at all for their

child would have trouble

> coping with their child's illness and need help. I don't pretend to be a

great pilar of strength. I'm

> devastaed about what is happening to my beautiful child. But I certainly

don't deserve to be portrayed as

> some basket case who is going to jump off the highest building if her kid gets

sick.

>

> Am I over reacting here, or is this extremely unprofessional of her?

>

>

>

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

> Free E-Cards, Screensavers, and Digital Pictures!

> Corbis.com:

> http://click./1/3358/1/_/368657/_/955587822/

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

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

Dear Launen,

I felt for you reading this , I can't help to wonder what their writing

in the kids chart about me and my kids.What you've gone through is awful,I

just can't believe it. How cruel of this doctor. My prayers go out to and

your family

Vange

Doctor's comments uncalled for!

>

>

> I am so angry and humiliated!

>

> I recently obtained a copy of a report that one of my son's neurologists

wrote from our visit in August.

> After 3 pages of garbage about and the diseases he " might " have, she

writes that, " should it turn out

> that has a fatal disease, mother will require psychiatric help, as

she is having trouble dealing with

> 's problems. "

>

> I am furious! This report was sent to all of 's doctors as well as

his pediatrician. I am so

> humiliated! My mother actually called this doctor and confronted her

about her comments. She acted very

> innocent and said that it must have been her secretary who wrote that; she

would never put in a child's

> report that the mother needs psyhiatric help. Nontheless, I am trying to

have this piece of paper removed

> from his files at Children's Hospital, and they won't do it.

>

> I am so upset by this. I mean, my God! Anyone with any love at all for

their child would have trouble

> coping with their child's illness and need help. I don't pretend to be a

great pilar of strength. I'm

> devastaed about what is happening to my beautiful child. But I certainly

don't deserve to be portrayed as

> some basket case who is going to jump off the highest building if her kid

gets sick.

>

> Am I over reacting here, or is this extremely unprofessional of her?

>

>

>

>

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

> Free E-Cards, Screensavers, and Digital Pictures!

> Corbis.com:

> http://click./1/3358/1/_/368657/_/955587822/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

,

If your doctor thinks that a parent could handle the things we deal with on a

daily basis without out having problems coping, then she is the one needing

psychiatric help.

, mom to Margaret, 19 months with suspected mito/Leigh's disease and the

most beauitful little girl.

[Guest guest]

and ,

I am not a lawyer, but my husband, an amazing mito dad is. I will have him read

these to get his oppinion about what you can do to have this removed from

the record. He is a criminal prosecutor though so I can't make any promises

since this is not his speciality. On another note, I have been reading the

messages about the cherub look of mito and I am not sure what that looks like.

I was wondering if someone could post a picture of their child who has this. I

am just curious if Margaret has this look about her. Thanks

[Guest guest]

OMG!!! LAUREN, THIS IS TERRIBLE!!! can you say " lawsuit?!?!?!

ruth

STEVEN G. HILAND

PH.# 949/830-7696

MAIL BOX # 2

[Guest guest]

,

Boy, do I feel where you are coming from!!! It was actually written in my

daughters chart that we would have been better off if she had died at

birth! Then to top that one off, the same Dr wrote that Rose's

cardiac/apnea monitor was for the mothers benefit, and that it was not

medically necessary for Rose.He told me to take her off her monitor and

to quit being so overactive and obsessive about her health. I asked him if

she was going to die during the night if she wasn't monitored. he told me

" There are no guarantees in life " My ass, I didn't listen to him, nor did I

remove her monitor! Suffice it to say, the next time SR was admitted to the

hosp for metabolic decompensation, she quit breathing several times during

the night, another sleep study was done the following days along with other

tests, and her monitor was definitely medically necessary, as she had severe

central apnea. We no longer see that Dr!! Time and time again, I heard this

Dr making really dumb remarks about my child. Well, Rose is going to be

3 May 1, and not ever a day goes by that anyone could ever convince me that

we would have been better off if she had died at birth!!!!

You keep fighting to have that removed!! If she said that she didn't say or

write that, then she herself should be furious, as I am sure her signature

is on the report, and if that report were ever called into question in a

court of law, she better have a VERY good explanation as to why she signed

her name to something that had been, according to her falsified!! Good

Luck, Keep your chin up!

Doctor's comments uncalled for!

>

>

> I am so angry and humiliated!

>

> I recently obtained a copy of a report that one of my son's neurologists

wrote from our visit in August.

> After 3 pages of garbage about and the diseases he " might " have, she

writes that, " should it turn out

> that has a fatal disease, mother will require psychiatric help, as

she is having trouble dealing with

> 's problems. "

>

> I am furious! This report was sent to all of 's doctors as well as

his pediatrician. I am so

> humiliated! My mother actually called this doctor and confronted her

about her comments. She acted very

> innocent and said that it must have been her secretary who wrote that; she

would never put in a child's

> report that the mother needs psyhiatric help. Nontheless, I am trying to

have this piece of paper removed

> from his files at Children's Hospital, and they won't do it.

>

> I am so upset by this. I mean, my God! Anyone with any love at all for

their child would have trouble

> coping with their child's illness and need help. I don't pretend to be a

great pilar of strength. I'm

> devastaed about what is happening to my beautiful child. But I certainly

don't deserve to be portrayed as

> some basket case who is going to jump off the highest building if her kid

gets sick.

>

> Am I over reacting here, or is this extremely unprofessional of her?

>

>

>

>

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

> Free E-Cards, Screensavers, and Digital Pictures!

> Corbis.com:

> http://click./1/3358/1/_/368657/_/955587822/

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

>

> Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

[Guest guest]

Thank you . After reading everyone's posts, my doctor's comments seem tame

compared to some. But I would still like them removed from his chart, just to

keep me from looking like some lunatic.

My son does not have a cherub look, so I can't post anything. Sorry. Thanks,

though, for the info.

lbtalbot@... wrote:

> and ,

> I am not a lawyer, but my husband, an amazing mito dad is. I will have him

read these to get his oppinion about what you can do to have this removed

from the record. He is a criminal prosecutor though so I can't make any

promises since this is not his speciality. On another note, I have been reading

the messages about the cherub look of mito and I am not sure what that looks

like. I was wondering if someone could post a picture of their child who has

this. I am just curious if Margaret has this look about her. Thanks

>

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

> Free E-Cards, Screensavers, and Digital Pictures!

> Corbis.com:

> http://click./1/3358/1/_/368657/_/955647360/

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

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.