Re: Joanne K and Van Verst

September 10, 2005

Hi Dawn,

Thank you. For now, Dr. P is not an option. Between

Dr. Kovnar at CHW and Dr. Cohen I have the Neuro end

of things covered. It is the global, evaluate and

advocate for the entire patient, component that I'm

struggling with. Dr. Whiteman picked up so much that

everyone missed clinically. Plus he served as a

source of info when the other subspecialists had

questions or concerns.

I'm still not clear on his actual plan, ie if it

changed or if the provate industry position is

temporary. Our nurse case manager at CHW is now asking

the case managing physician(s) what their thoughts are

in regards to how we should proceed. Dr. Cohen is

really good but he can't pick up the slack (no time

for extra clinic visits).

It's unfortunate because CHW does have a good

metabolic geneticist, but he continually misses the

boat with my girls and is still not fully supporting

the diagnosis with SIX positive biopsies between the

two girls! His overall metabolic disease knowledge is

great, it's the mito specific knowledge that's lacking

I hope to know in the next week or two what direction

our case managing docs recommend. I really feel for

as their health insurance has blocked almost all

access to appropriate care. She's in a far worse

position for her kids than I am with mine.

--- dawnanich Danich1@...> wrote:

> Hi, I was very sad to hear about dr WHiteman leaving

> and that he was

> not going back into patient care with Dr Korsen like

> originally

> planned. Or it was a rumor??? I thought of you guys

> and others right

> away.So many children stuck with out a good mito Dr

> here in the

> midwest.

>

> Joanne, I know you are looking to see someone at

> Frodert interum for

> your girls. dr Peltier may work out for you since

> your girls go to

> CLeveland. She specializes in mito. She is nothing

> like Dr Whiteman,

> but very nice. Your medical knowlege will help. She

> did not work out

> for me, she insisted I had dysautonomia and a

> conversion reaction,

> nothing else. Dr Whiteman proved that wrong. If you

> want to know

> anything else feel free to email me privately.

>

> , I am sorry to hear is having so many

> problems right now.

> It is so hard to watch our children suffer

> physically and emotionally.

>

> Take care, Dawn Anich

>

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

September 11, 2005

I'm a bit confused - I started to " hunt down " Dr. Whiteman for you

(since I stupidly thought you meant the AFB LOL) - is this Dr.

Whiteman of the Mayo Clinic? If so, there's a schedule online that

has him doing a CME (continuing medical education) talk on biomedical

genetics at Mayo in October. What exactly were you guys told - that

he is leaving or that he is no longer seeing patients?

This site notes that he has a *LONG* commute - he lives in Maine and

works at the Mayo Clinic:

http://www.fodsupport.org/2004_conf_part2.htm

This info is from another site:

A. Whiteman, MD

Clinical Genetics, Medical Genetics Ph.D., Pediatricians

Location

- Boston, Massachusetts (MA) 02115

- Portland, Maine (ME) 04101

- Rochester, Minnesota (MN) 55905

Perhaps the UMDF (or specific people therein) might know something,

as he did present at the last meeting and he is on their medical

advisory board.

Take care,

RH

>

> > Hi, I was very sad to hear about dr WHiteman leaving

> > and that he was

> > not going back into patient care with Dr Korsen like

> > originally

> > planned. Or it was a rumor??? I thought of you guys

> > and others right

> > away.So many children stuck with out a good mito Dr

> > here in the

> > midwest.

> >

> > Joanne, I know you are looking to see someone at

> > Frodert interum for

> > your girls. dr Peltier may work out for you since

> > your girls go to

> > CLeveland. She specializes in mito. She is nothing

> > like Dr Whiteman,

> > but very nice. Your medical knowlege will help. She

> > did not work out

> > for me, she insisted I had dysautonomia and a

> > conversion reaction,

> > nothing else. Dr Whiteman proved that wrong. If you

> > want to know

> > anything else feel free to email me privately.

> >

> > , I am sorry to hear is having so many

> > problems right now.

> > It is so hard to watch our children suffer

> > physically and emotionally.

> >

> > Take care, Dawn Anich

> >

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

September 11, 2005

Dr. Whiteman may be presenting at a conference being

sponsored by Mayo Clinic, but he is NO longer on staff

there. He resigned his clinical faculty position

August 5th. This is confirmed by the MEdical Genetics

Office at Mayo and the UMDF. He saw my girls in June

and was quite open about considering a formal move to

a position closer to home. There is NO physician with

his level of competence left in the Midwest. There

are others but they pale in comparison.

--- ohgminion rakshasis@...> wrote:

> I'm a bit confused - I started to " hunt down " Dr.

> Whiteman for you

> (since I stupidly thought you meant the AFB LOL) -

> is this Dr.

> Whiteman of the Mayo Clinic? If so, there's a

> schedule online that

> has him doing a CME (continuing medical education)

> talk on biomedical

> genetics at Mayo in October. What exactly were you

> guys told - that

> he is leaving or that he is no longer seeing

> patients?

>

> This site notes that he has a *LONG* commute - he

> lives in Maine and

> works at the Mayo Clinic:

> http://www.fodsupport.org/2004_conf_part2.htm

>

> This info is from another site:

> A. Whiteman, MD

> Clinical Genetics, Medical Genetics Ph.D.,

> Pediatricians

> Location

> - Boston, Massachusetts (MA) 02115

> - Portland, Maine (ME) 04101

> - Rochester, Minnesota (MN) 55905

>

> Perhaps the UMDF (or specific people therein) might

> know something,

> as he did present at the last meeting and he is on

> their medical

> advisory board.

>

> Take care,

> RH

>

> >

> > > Hi, I was very sad to hear about dr WHiteman

> leaving

> > > and that he was

> > > not going back into patient care with Dr Korsen

> like

> > > originally

> > > planned. Or it was a rumor??? I thought of you

> guys

> > > and others right

> > > away.So many children stuck with out a good mito

> Dr

> > > here in the

> > > midwest.

> > >

> > > Joanne, I know you are looking to see someone at

> > > Frodert interum for

> > > your girls. dr Peltier may work out for you

> since

> > > your girls go to

> > > CLeveland. She specializes in mito. She is

> nothing

> > > like Dr Whiteman,

> > > but very nice. Your medical knowlege will help.

> She

> > > did not work out

> > > for me, she insisted I had dysautonomia and a

> > > conversion reaction,

> > > nothing else. Dr Whiteman proved that wrong. If

> you

> > > want to know

> > > anything else feel free to email me privately.

> > >

> > > , I am sorry to hear is having so

> many

> > > problems right now.

> > > It is so hard to watch our children suffer

> > > physically and emotionally.

> > >

> > > Take care, Dawn Anich

> > >

> >

> > Joanne Kocourek (mom to , lies, and

> )

> > visit us at:

> http://www.caringbridge.org/il/annakris

>

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

September 11, 2005

If the poor guy had to schlepp to Minnesota from Maine frequently, I

can't blame him for leaving, and I applaud him for telling you about

it. But certainly on this list we hear stories about several mito

doctors that are excellent who are unable/unwilling/don't have the

time to train excellent new doctors in the field (I wonder how much

their clinics want them to concentrate on one set of diseases). I'm

hoping Dr. Garganta (with Dr. Korson in Boston) is an exception, BUT

I am told she is a Ph.D. (as am I) and not a M.D., so I wonder how my

discussions with her will turn out (can they even write prescriptions

or order tests?).

The problem seems again to be that the best doctors are really

booked - they can't turn down a new patient (because they really care

for people), and the better they are, the more people they keep in

their practice. And of course the complication of pediatric vs.

adult patients.

Considering his commitment had him traveling from Maine to Minnesota

to see patients etc., perhaps that makes me rethink my little trip up

to Boston as nearby instead of a big hassle. 'Course hopefully he

doesn't have mito to complicate traveling.

I find this very interesting because I'm pursuing a job with a small

biotech firm, I understand the lure of a 9 to 5 job for a doctor

(it's hard to see patients and not be on call), and I wonder where he

is going if he'll be in industry now - could he have a limited

practice too? Maybe you could see him in Maine or Boston if he ends

up still practicing there (some people posted about seeing him in

Maine and Boston)...

This is the trouble with rare diseases, it's difficult to get to

doctors specializing in diagnosis and treatment, that's why my

insurance paid for Shoffner even though he was out of network. Even

so, if you can only see someone once or twice per year, how well can

even the best doctor follow you up? (that's a rhetorical question LOL)

Take care,

RH

> > >

> > > > Hi, I was very sad to hear about dr WHiteman

> > leaving

> > > > and that he was

> > > > not going back into patient care with Dr Korsen

> > like

> > > > originally

> > > > planned. Or it was a rumor??? I thought of you

> > guys

> > > > and others right

> > > > away.So many children stuck with out a good mito

> > Dr

> > > > here in the

> > > > midwest.

> > > >

> > > > Joanne, I know you are looking to see someone at

> > > > Frodert interum for

> > > > your girls. dr Peltier may work out for you

> > since

> > > > your girls go to

> > > > CLeveland. She specializes in mito. She is

> > nothing

> > > > like Dr Whiteman,

> > > > but very nice. Your medical knowlege will help.

> > She

> > > > did not work out

> > > > for me, she insisted I had dysautonomia and a

> > > > conversion reaction,

> > > > nothing else. Dr Whiteman proved that wrong. If

> > you

> > > > want to know

> > > > anything else feel free to email me privately.

> > > >

> > > > , I am sorry to hear is having so

> > many

> > > > problems right now.

> > > > It is so hard to watch our children suffer

> > > > physically and emotionally.

> > > >

> > > > Take care, Dawn Anich

> > > >

> > >

> > > Joanne Kocourek (mom to , lies, and

> > )

> > > visit us at:

> > http://www.caringbridge.org/il/annakris

> >

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

September 11, 2005

Hi RH,

I think you made a lot of good points in your e-mail. Mito doctors are spread

in so many directions now that the ones that are left are too swamped with

patients to adequately care for them. I try to make appts. with Dr Korson 3-4

times a year b/c otherwise we get nothing accomplished at the appts. I do have.

I just end up updating him the whole time and barely have time for his input if

I go anymore than that between appts. I realize this is really a luxury b/c some

mito doctors are so booked that you can't get follow ups that frequently.

Dr Garganta definitely has an MD, so don't worry about that. Maybe she has a PhD

in addition to that, but she is also a medical doctor. She's supposedly very

smart with lab stuff, so you should be in good hands with the questions you have

about your ammonia levels. She helped me out a little bit when I was so sick

last month and Dr K was away. I was grateful for her input.

Your trip is coming up quickly! Have you gotten hotel reservations, etc?

Malisa