RE: Re: Discussions regarding specific doctors, hospitals, organizations

[Guest guest]

I support your discussion.

BARBIE

________________________________

From: missygridge <vcarter98@...>

Sent: Saturday, December 27, 2008 2:32:14 PM

Subject: Re: Discussions regarding specific doctors, hospitals,

organizations

Actually this concerns me greatly. It is hard to build a good network

of doctors, and part of what makes it so hard is that we are

conditioned to not question or challenge doctors. It is not slander

or even bordering on slander to share a personal experience, even if

it is negative. And that experience could save another family time,

money, stress, and, in some cases, a life.

Our first experience with an immuno. was horrible. He is a nationally

respected physician and it left us wondering if our experience was a

fluke or if our judgment was off or if maybe we were seeing things

that weren't there. Then, I joined this list and did a search and

another mom in this area had an older post whose experience was

nearly identical to ours. I needed to read that. It reminded me of

the need to advocate for my son as well as importance of not allowing

myself to be intimidated. That mom is no longer posting on the list;

I asked about the specific doctor when I joined and got no response.

I *needed* that old post.

On another list, I learned that the gastro practice we first used has

a long history of being dangerously ineffective with children who

have the same issues as my son, and, from that discussion, we got a

recommendation for an incredible gastro. That single discussion may

well have saved my son's life because the pattern of treatment we had

been seeing w/in the first gastro practice matched the pattern others

had experienced.

You don't know who is going to join this list, frustrated, scared,

intimidated and overwhelmed. Parents need this kind of networking. We

need to be empowered as a community in order to advocate for our

children, and part of that empowered includes recognizing a pattern

that suggests that a doctor or a practice is potentially dangerous or

ineffective.

(the other) Missy

[Guest guest]

I appreciate all the replies I received regarding experiences with this

particular doctor. It certainly made me feel much better to talk to others who

have had similar experiences.

Thank You,

Devin 16, CVID

@...: mother5590@...: Sat, 27 Dec 2008

21:29:09 -0800Subject: Re: Re: Discussions regarding specific doctors,

hospitals, organizations

I support your discussion.BARBIE ________________________________From:

missygridge <vcarter98@...>@...: Saturday,

December 27, 2008 2:32:14 PMSubject: Re: Discussions regarding specific

doctors, hospitals, organizationsActually this concerns me greatly. It is hard

to build a good network of doctors, and part of what makes it so hard is that we

are conditioned to not question or challenge doctors. It is not slander or even

bordering on slander to share a personal experience, even if it is negative. And

that experience could save another family time, money, stress, and, in some

cases, a life. Our first experience with an immuno. was horrible. He is a

nationally respected physician and it left us wondering if our experience was a

fluke or if our judgment was off or if maybe we were seeing things that weren't

there. Then, I joined this list and did a search and another mom in this area

had an older post whose experience was nearly identical to ours. I needed to

read that. It reminded me of the need to advocate for my son as well as

importance of not allowing myself to be intimidated. That mom is no longer

posting on the list; I asked about the specific doctor when I joined and got no

response. I *needed* that old post.On another list, I learned that the gastro

practice we first used has a long history of being dangerously ineffective with

children who have the same issues as my son, and, from that discussion, we got a

recommendation for an incredible gastro. That single discussion may well have

saved my son's life because the pattern of treatment we had been seeing w/in the

first gastro practice matched the pattern others had experienced.You don't know

who is going to join this list, frustrated, scared, intimidated and overwhelmed.

Parents need this kind of networking. We need to be empowered as a community in

order to advocate for our children, and part of that empowered includes

recognizing a pattern that suggests that a doctor or a practice is potentially

dangerous or ineffective.(the other) Missy[Non-text portions of this message

have been removed]

[Guest guest]

You are absolutely right. I ran into the same issue on another list and

discussed it with my best friend , who's a lawyer, he said the exact same thing.

If the information is true, based solely on fact ,than it's not slander. You are

free to share the truth with anyone that you please.

@...: tl_kittle@...: Sun, 28 Dec 2008

20:33:17 +0000Subject: Re: Discussions regarding specific doctors,

hospitals, organizations

It's not slander if it's true--keep any records if you need them toprove what

you're saying. Just because something said about someoneis negative, doesn't

make it wrong to say it--it's only wrong, if itisn't true.

[Guest guest]

I hope you don't mind me chiming in on this topic, but I've been thinking about

this for the last couple of days. We drove all over the Midwest to the East

Coast looking for answers for our son Conner, so we've seen a lot of physicians.

I'm sure there isn't a doctor on the planet who hasn't had bad days, let a kid

fall through the cracks, or said the wrong thing and ticked off a parent. And

each of those docs likely has just as many parents singing their praises.

After years of searching we found our current immunologist, whom we adore, he

diagnosed Conner's extremely rare immune deficiency when other leading

immunologists couldn't. However, I know another parent in this group who was

very frustrated with him and left to find a new immuno. I'm so glad that I

didn't let another parent's experience stop us from going to Cincinnati, Conner

has a chance at living a normal life thanks to him. We went to the NIH after

Conner was diagnosed with NEMO and they were stunned that our immuno diagnosed

him, he had none of the physical traits associated with the disorder, which is

why none of the other docs picked up on it - and in their defense there were

only 60 known cases in the world at that time, so they will never likely see

another NEMO kid. Of course we think our doc is a genious, but other parents

certainly disagree and had a much different experience with him.

Years earlier we went to a highly recommended immunologist, other parents loved

him and we hoped this was the physician who could give us all of the answers we

were seeking. Ultimately, we were disappointed for a variety of reasons and

decided that we had to leave. After we left I emailed him to tell him why we

were finding a new doc and, thankfully, he was very responsive. A couple of

years later when he learned about Conner's ultimate diagnosis, he contacted us

to tell us how happy he was that we found someone to diagnose him. We now have a

more personal relationship with him and I have a great deal of respect for him.

I guess my point is that doctors are human and are going to let people down. It

can be a tricky relationship and sometimes we click with docs and sometimes we

don't. I think it's fine to mention that you had a problem with a specific

doctor, but I agree that it should go private at that point with anyone

interested in continuing the conversation. The fact that the physicians aren't

able to defend themselves is why I feel it is a problem to hash it out

" publicly " . Most importantly, I would hate to discourage someone from seeking a

consultation with a specific doctor based on a couple of bad experiences, that

doc may hold the key for another patient, just as in our case. If that other

parent had discouraged us from seeing our current immunologist, Conner likely

would not have been diagnosed before it was too late.

I also wanted to encourage you all to let a physician know why you are leaving

(or are considering leaving) their practice, in some cases it could really make

a difference for other patients. And if the doctor is offended then it probably

wasn't the right place for you to be anyway.

I hope you all are able to find the perfect team for your children! It took us a

long time and lots of travelling to end up where we did, but it was worth it!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

I hope you don't mind me chiming in on this topic, but I've been thinking about

this for the last couple of days. We drove all over the Midwest to the East

Coast looking for answers for our son Conner, so we've seen a lot of physicians.

I'm sure there isn't a doctor on the planet who hasn't had bad days, let a kid

fall through the cracks, or said the wrong thing and ticked off a parent. And

each of those docs likely has just as many parents singing their praises.

After years of searching we found our current immunologist, whom we adore, he

diagnosed Conner's extremely rare immune deficiency when other leading

immunologists couldn't. However, I know another parent in this group who was

very frustrated with him and left to find a new immuno. I'm so glad that I

didn't let another parent's experience stop us from going to Cincinnati, Conner

has a chance at living a normal life thanks to him. We went to the NIH after

Conner was diagnosed with NEMO and they were stunned that our immuno diagnosed

him, he had none of the physical traits associated with the disorder, which is

why none of the other docs picked up on it - and in their defense there were

only 60 known cases in the world at that time, so they will never likely see

another NEMO kid. Of course we think our doc is a genious, but other parents

certainly disagree and had a much different experience with him.

Years earlier we went to a highly recommended immunologist, other parents loved

him and we hoped this was the physician who could give us all of the answers we

were seeking. Ultimately, we were disappointed for a variety of reasons and

decided that we had to leave. After we left I emailed him to tell him why we

were finding a new doc and, thankfully, he was very responsive. A couple of

years later when he learned about Conner's ultimate diagnosis, he contacted us

to tell us how happy he was that we found someone to diagnose him. We now have a

more personal relationship with him and I have a great deal of respect for him.

I guess my point is that doctors are human and are going to let people down. It

can be a tricky relationship and sometimes we click with docs and sometimes we

don't. I think it's fine to mention that you had a problem with a specific

doctor, but I agree that it should go private at that point with anyone

interested in continuing the conversation. The fact that the physicians aren't

able to defend themselves is why I feel it is a problem to hash it out

" publicly " . Most importantly, I would hate to discourage someone from seeking a

consultation with a specific doctor based on a couple of bad experiences, that

doc may hold the key for another patient, just as in our case. If that other

parent had discouraged us from seeing our current immunologist, Conner likely

would not have been diagnosed before it was too late.

I also wanted to encourage you all to let a physician know why you are leaving

(or are considering leaving) their practice, in some cases it could really make

a difference for other patients. And if the doctor is offended then it probably

wasn't the right place for you to be anyway.

I hope you all are able to find the perfect team for your children! It took us a

long time and lots of travelling to end up where we did, but it was worth it!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

I was so not going to comment on this thread....however, , what a

wonderful, well thought out, well written post! This one should go down as a

MUST READ!

Dayna

Re: Re: Discussions regarding specific doctors, hospitals,

organizations

I hope you don't mind me chiming in on this topic, but I've been thinking

about this for the last couple of days. We drove all over the Midwest to the

East Coast looking for answers for our son Conner, so we've seen a lot of

physicians. I'm sure there isn't a doctor on the planet who hasn't had bad days,

let a kid fall through the cracks, or said the wrong thing and ticked off a

parent. And each of those docs likely has just as many parents singing their

praises.

After years of searching we found our current immunologist, whom we adore, he

diagnosed Conner's extremely rare immune deficiency when other leading

immunologists couldn't. However, I know another parent in this group who was

very frustrated with him and left to find a new immuno. I'm so glad that I

didn't let another parent's experience stop us from going to Cincinnati, Conner

has a chance at living a normal life thanks to him. We went to the NIH after

Conner was diagnosed with NEMO and they were stunned that our immuno diagnosed

him, he had none of the physical traits associated with the disorder, which is

why none of the other docs picked up on it - and in their defense there were

only 60 known cases in the world at that time, so they will never likely see

another NEMO kid. Of course we think our doc is a genious, but other parents

certainly disagree and had a much different experience with him.

Years earlier we went to a highly recommended immunologist, other parents

loved him and we hoped this was the physician who could give us all of the

answers we were seeking. Ultimately, we were disappointed for a variety of

reasons and decided that we had to leave. After we left I emailed him to tell

him why we were finding a new doc and, thankfully, he was very responsive. A

couple of years later when he learned about Conner's ultimate diagnosis, he

contacted us to tell us how happy he was that we found someone to diagnose him.

We now have a more personal relationship with him and I have a great deal of

respect for him.

I guess my point is that doctors are human and are going to let people down.

It can be a tricky relationship and sometimes we click with docs and sometimes

we don't. I think it's fine to mention that you had a problem with a specific

doctor, but I agree that it should go private at that point with anyone

interested in continuing the conversation. The fact that the physicians aren't

able to defend themselves is why I feel it is a problem to hash it out

" publicly " . Most importantly, I would hate to discourage someone from seeking a

consultation with a specific doctor based on a couple of bad experiences, that

doc may hold the key for another patient, just as in our case. If that other

parent had discouraged us from seeing our current immunologist, Conner likely

would not have been diagnosed before it was too late.

I also wanted to encourage you all to let a physician know why you are leaving

(or are considering leaving) their practice, in some cases it could really make

a difference for other patients. And if the doctor is offended then it probably

wasn't the right place for you to be anyway.

I hope you all are able to find the perfect team for your children! It took us

a long time and lots of travelling to end up where we did, but it was worth it!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

I was so not going to comment on this thread....however, , what a

wonderful, well thought out, well written post! This one should go down as a

MUST READ!

Dayna

Re: Re: Discussions regarding specific doctors, hospitals,

organizations

I hope you don't mind me chiming in on this topic, but I've been thinking

about this for the last couple of days. We drove all over the Midwest to the

East Coast looking for answers for our son Conner, so we've seen a lot of

physicians. I'm sure there isn't a doctor on the planet who hasn't had bad days,

let a kid fall through the cracks, or said the wrong thing and ticked off a

parent. And each of those docs likely has just as many parents singing their

praises.

After years of searching we found our current immunologist, whom we adore, he

diagnosed Conner's extremely rare immune deficiency when other leading

immunologists couldn't. However, I know another parent in this group who was

very frustrated with him and left to find a new immuno. I'm so glad that I

didn't let another parent's experience stop us from going to Cincinnati, Conner

has a chance at living a normal life thanks to him. We went to the NIH after

Conner was diagnosed with NEMO and they were stunned that our immuno diagnosed

him, he had none of the physical traits associated with the disorder, which is

why none of the other docs picked up on it - and in their defense there were

only 60 known cases in the world at that time, so they will never likely see

another NEMO kid. Of course we think our doc is a genious, but other parents

certainly disagree and had a much different experience with him.

Years earlier we went to a highly recommended immunologist, other parents

loved him and we hoped this was the physician who could give us all of the

answers we were seeking. Ultimately, we were disappointed for a variety of

reasons and decided that we had to leave. After we left I emailed him to tell

him why we were finding a new doc and, thankfully, he was very responsive. A

couple of years later when he learned about Conner's ultimate diagnosis, he

contacted us to tell us how happy he was that we found someone to diagnose him.

We now have a more personal relationship with him and I have a great deal of

respect for him.

I guess my point is that doctors are human and are going to let people down.

It can be a tricky relationship and sometimes we click with docs and sometimes

we don't. I think it's fine to mention that you had a problem with a specific

doctor, but I agree that it should go private at that point with anyone

interested in continuing the conversation. The fact that the physicians aren't

able to defend themselves is why I feel it is a problem to hash it out

" publicly " . Most importantly, I would hate to discourage someone from seeking a

consultation with a specific doctor based on a couple of bad experiences, that

doc may hold the key for another patient, just as in our case. If that other

parent had discouraged us from seeing our current immunologist, Conner likely

would not have been diagnosed before it was too late.

I also wanted to encourage you all to let a physician know why you are leaving

(or are considering leaving) their practice, in some cases it could really make

a difference for other patients. And if the doctor is offended then it probably

wasn't the right place for you to be anyway.

I hope you all are able to find the perfect team for your children! It took us

a long time and lots of travelling to end up where we did, but it was worth it!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

, this is my point exactly, it is important to have the discussion as

long as the discussion is based on experience and that we all realize that it is

a personal experience. We need also all remember that a doctor may be having a

bad day or misses something with a child , but.... when it happens repeatedly

and it is banned from discussion then the information is not out there for

people to make an informed decision. I would also agree ( I expressed this)

that it is very important to get back to the doctor or institution to let them

know why you are leaving or concerned about the care you received. I worked as a

practitioner for 18 years and I ALWAYS wanted feedback good or bad to know that

I was doing a good job. If I was unable to take the complaints for myself or my

staff then I had no business practicing in the field since I was ineffective. I

have never made my decisions based on one or 2 personality type issues but I do

want to weigh my

decisions on others experiences when it has to do with a specific practice or

basic philosophy of care that I may totally disagree with. Where are we to get

this kind of information? I often go to the online resources but they too are

just opinions of other people's experiences of length of wait, friendliness of

staff and physician and also supposed outcomes based on legal malpractice issues

etc. Are all claims proven and substantiated? NO they are the conglomeration of

personal experiences and a review on the physician because there is no way to

prove whether an office receptive on a given day. I think we are all looking for

a way to do the best for our children with limited resources of time, energy and

funding. I continue to hope this forum can remain one of the tools in our

arsenals of good care. I have been around for nearly ten years and would love to

see it continue to be the incredible resource that it has been for my family.

Thank you Ursula

for your many years of service to families. I think we are all learning as we

all go through this difficult journey since the field is changing so rapidly.

BARBIE

________________________________

From: <kristin-smith@...>

Sent: Monday, December 29, 2008 9:13:49 AM

Subject: Re: Re: Discussions regarding specific doctors, hospitals,

organizations

I hope you don't mind me chiming in on this topic, but I've been thinking about

this for the last couple of days. We drove all over the Midwest to the East

Coast looking for answers for our son Conner, so we've seen a lot of physicians.

I'm sure there isn't a doctor on the planet who hasn't had bad days, let a kid

fall through the cracks, or said the wrong thing and ticked off a parent. And

each of those docs likely has just as many parents singing their praises.

After years of searching we found our current immunologist, whom we adore, he

diagnosed Conner's extremely rare immune deficiency when other leading

immunologists couldn't. However, I know another parent in this group who was

very frustrated with him and left to find a new immuno. I'm so glad that I

didn't let another parent's experience stop us from going to Cincinnati, Conner

has a chance at living a normal life thanks to him. We went to the NIH after

Conner was diagnosed with NEMO and they were stunned that our immuno diagnosed

him, he had none of the physical traits associated with the disorder, which is

why none of the other docs picked up on it - and in their defense there were

only 60 known cases in the world at that time, so they will never likely see

another NEMO kid. Of course we think our doc is a genious, but other parents

certainly disagree and had a much different experience with him.

Years earlier we went to a highly recommended immunologist, other parents loved

him and we hoped this was the physician who could give us all of the answers we

were seeking. Ultimately, we were disappointed for a variety of reasons and

decided that we had to leave. After we left I emailed him to tell him why we

were finding a new doc and, thankfully, he was very responsive. A couple of

years later when he learned about Conner's ultimate diagnosis, he contacted us

to tell us how happy he was that we found someone to diagnose him. We now have a

more personal relationship with him and I have a great deal of respect for him.

I guess my point is that doctors are human and are going to let people down. It

can be a tricky relationship and sometimes we click with docs and sometimes we

don't. I think it's fine to mention that you had a problem with a specific

doctor, but I agree that it should go private at that point with anyone

interested in continuing the conversation. The fact that the physicians aren't

able to defend themselves is why I feel it is a problem to hash it out

" publicly " . Most importantly, I would hate to discourage someone from seeking a

consultation with a specific doctor based on a couple of bad experiences, that

doc may hold the key for another patient, just as in our case. If that other

parent had discouraged us from seeing our current immunologist, Conner likely

would not have been diagnosed before it was too late.

I also wanted to encourage you all to let a physician know why you are leaving

(or are considering leaving) their practice, in some cases it could really make

a difference for other patients. And if the doctor is offended then it probably

wasn't the right place for you to be anyway.

I hope you all are able to find the perfect team for your children! It took us a

long time and lots of travelling to end up where we did, but it was worth it!

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge. org/visit/ smithkids