Has anyone else dealt with Drs bad mouthing Shoffner?

[Guest guest]

Sara

I have certainly seen this here. OUr metabolicist thought if she didn't order it then it didn't happen. When I handed her the 40-page-oh-so-thorough-report from Shoffner, she said to me "If I concur, I will give you a call!" If you concur!!!! He is the leading guy...even Cohen and Whiteman will say so. I even heard her briefing a resident before entering our examining room on an appointment, saying "He is suspected to have mito but his labs (meaning lactic acid) does not support it! " Well the joke is on her? I guess...because he died and she sure didn't ever try to help us find a different explanation! I would have been open to it!

I will say if your docs are old school then this would explain it! The guys at Columbia were the first ones to write about mito...the traditional forms like MERFF and MELAS...so many older docs consider them to be the real experts and they do frozen bxs so thats good enough for them. I personally (and many here will agree) consider Columbia's thinking to be outdated and THEY have major issues with Shoffner, who in their eyes went a different way than thier thinking which makes him a rogue agent! I think this is where a LOT of the issues with Shoffner lie. You can submit your own paperwork to Shoffner and he might take you without a drs recommendation. We did that b/c our PC wasn't concerned at all and drug his feet and treated me horribly after we went there. So that's my opinion...take it or leave it...ha ha!

In my opinion you can can't do better diagnostically than Shoffner.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comwww.LifeofLoveProject.org

[Guest guest]

We have no personal experience with Dr.Shoffner, as my daughter sees Dr.Cohen. I do know Dr.Cohen has never spoke a bad word about him, and has even sent one of her tests to him, because CCF was unable to run it. The only hospital I have ever heard of, giving diagnoses too fast was Rainbow Babies and Childrens in Cleveland. (Ironic because this is where the lab is CCF uses for biopsies.) Too me it sounds like you may have an over confident doctor, who does not want to admit someone may be better than him. I have noticed the best doctors are the ones who are first to admit when they need help with something. Best wishes with Dr. Shoffner, I am sure you are in good hands.

[Guest guest]

I know it's kind of an odd question, but just wondering. We have been

seen and tested by the Metabolic/Genetic Drs at Denver Children's

hospital and they agree that Will needs the biopsy, but they are doing

everything they can to discredit Dr Shoffner and trying to get us to do

it through them. Just wondering if anyone else has seen this from

their Drs. They have told us the " Dr Shoffner is not the mito guru any

more " that he tends to get a lot of false positives (especially

Complex 1) so they don't trust his results. When I have brought up my

concerns about fresh or frozen, they tell me it really doesn't matter.

When I have asked about going to one of the other centers that do fresh

biopsies they say well it really doesn't make a difference, but that

all of the centers have their problems. Just wondering if it's a

personality thing up here or if some of you deal with it also. To me

it comes across as politics/jealousy, but who knows.

Will is really struggling right now so it's even more important to us

to get this done soon, and get it done right the first time. I'm

completely confident in our choice to do the fresh biopsy in Atlanta,

but it's kind of tough knowing the Drs here are fighting it so much and

may even discount the results we may get. Oh well, I'm sure there are

other Drs to see.

Thanks for any input

In Colorado

[Guest guest]

Hi ,

My sense is that it's politics. Shoffner left Emory and went out on hisown and made a private lab and I've gotten the impression from the geneticist/metabolic people who are at university connected hospitals (and Denver Children's is now connected with UC Health Sciences) that they slam him b/c of his "private" work. I've run into a number of families who did NOT get a diagnosis of mito from Shoffner so I'm not buying the false positive stuff. The neurologist I saw after I got Shoffner's report asked me how much I paid to get all that testing done! The gall of him! I could care less how much I paid at this point, I just wanted to know what was going on with my son. He seemed more curious/jealous b/c the Univ. of Miami hospital (one of the big ones like UC health Sciences) does not do fresh muscle biopsies. He, too, had been pushing me to get it done at Univ of Miami hospital. I chose Shoffner. Why go to someone who doesn't do these very often instead of going to the one who has expertise? If I get any crap from any of the drs I see about not believeing the diagnosis, etc., I will turn on my heel and leave. We plan to see Korson in Boston as our mito/metabolic specialist. I've found that the "typical" metabolic/geneticist actually doesn't know a lot about mito; it seems you have to find someone who specializes in it.

Good Luck,

Anne R mom to Asher (3 - Complex III defect, possible Complex I defect)

and Sam (7- primary immune deficiency)

[Guest guest]

I don’t know much about the doctors

you are working with. I am in Los Angeles,

however I do know that doctors (especially the cocky ones, and they are many)

think they know it all when they don’t know squat about mito. A good doctor keeps an open mind and

listens to the parent and consults others. My older daughter, Samya , who is

DEAD now had mito

and went undiagnosed all her life. Even when she was deteriorating and dying

and intubated and weak , the neurologists thought they knew for sure what she

had. This was even after she did not fit into any of their symptoms. I

raised hell, screamed bloody murder, and almost killed (But God kept me

patient) 2 neurologists because they refused to do an MRI. All of her labs were

normal, she was dying before our eyes, and they had the gall to say, “The

MRI won’t show anything”. I demanded the MRI and that was the only

indication of Mito.

Is it so shockin with all we know now that a child has mito and does not fit the scenario or lab

results. What is the scenarion anyways. From what I have learned, there is no “scenario”

of mito. I get soooo

mad when I think about it. I knew she did not have the disease they diagnosed

her with (Guillian Barre) from the first day. I knew she had some form of

metabolic issue and their guillian Barre had nothing to do with it. They kept

insisting without any medical evidence that she had it. When they found out it

was mito and

not what they thought, suddenly I no longer saw them. Good riddens. I never

ever heard even an apology or a condolence. Samya was just a patient on paper

to them. Believe me, there are cold hearted doctors out there that have no

business being in the field. Both of those useless neurologist are no

longer practicing at the hospital Samya died in. They conveniently left after

Samya died. COINCIDANCE! I think not.

Bottom line, yell, scream do

whatever you have to do to get what you need for your child. Do not expect

others to care enough (although many do) and don’t think they always know

what is best. A lot of medical decisions are about politics and our kids

suffer. Now, I DEMAND what I know in my heart my child needs. No more

trusting. I am not so much mad at their mistake or blame them for Samya’s

death. I blame them for misdiagnosing her due to cockiness and lack of humility

and care. The doctor Leanna sees now was part of not knowing what Samya had,

but I do not blame him. He did his best and I know it. I continue to see him

because he cares. He did not say she had guillian Barre. He did not want to

give up the search. He just did not find the answer in time. I am

sorry for going on and on. This subject makes my blood boil.

Good

luck,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

From:

Sent: Friday, May 28, 2004 7:48 AM

To: Mito

Subject: Has anyone else dealt with Drs bad

mouthing Shoffner?

I know it's kind of an odd question, but just wondering. We have

been

seen and tested by the Metabolic/Genetic Drs at

Denver Children's

hospital and they agree that Will needs the

biopsy, but they are doing

everything they can to discredit Dr Shoffner and

trying to get us to do

it through them. Just wondering if anyone

else has seen this from

their Drs. They have told us the " Dr

Shoffner is not the mito

guru any

more " that he tends to get a lot of

false positives (especially

Complex 1) so they don't trust his results.

When I have brought up my

concerns about fresh or frozen, they tell me it

really doesn't matter.

When I have asked about going to one of the other

centers that do fresh

biopsies they say well it really doesn't make a

difference, but that

all of the centers have their problems. Just

wondering if it's a

personality thing up here or if some of you deal

with it also. To me

it comes across as politics/jealousy, but who

knows.

Will is really struggling right now so it's even

more important to us

to get this done soon, and get it done right the

first time. I'm

completely confident in our choice to do the fresh

biopsy in Atlanta,

but it's kind of tough knowing the Drs here are

fighting it so much and

may even discount the results we may get. Oh

well, I'm sure there are

other Drs to see.

Thanks for any input

In Colorado

Please

contact mito-owner with any problems or questions.

[Guest guest]

,

I have only heard good things about Dr.Schoffner.I know he has not

met us or and her doc sent him some biopsies from her last

surgery and is doing DNA sequencing on them for us.Mito docs are

funny. We talked to Cohen last time we saw him about getting my

family to a geneticist that he was familiar with and he said that

would be a good idea. anyways after that we never recieved a follow

up appt with him for morgan. When we said we were going elsewhere

for some additional help, he just wrote us off. I was looking for

help for my whole family and he only offered help for . I am

very frustrated and now have been waiting for a couple of months for

an appt. with him. The docs I have heard of (Shoffner, Cohen,

Kelley, and Boles) are complimentary of each other, but you have to

be be careful. I think egos get in the way sometimes. 's old

primary care physician and Cohen couldn't even talk because egos

were so big. her new doc can talk to him without any problems. They

both have their specialties and they respect each other's knowledge.

Mito is so unknown and confusing. I think I would take the advice of

the people here who have dealt with shoffner and forget about what

other docs say. Your child is what is most important and not which

doc gets the diagnoses first! Follow what you want to do.All of the

big mito gurus say fresh is best. Why listen to these quacks and

then have to do it twice because the first frozen one was

inconclusive. There is always a chance you just may not find out any

ways, but I would follow the mito standards if you can!

Good luck, Dawn

[Guest guest]

SArah,

I was sad to see you've had trouble at DCH...we go there too but had all of Lexi's initial mito workup done in So. CAli several yrs ago and did not really have to deal with the issues you're facing here. Everything i've ever herad/read, etc says fresh IS better than frozen and it DOES sometimes make a difference. We got a result of "inconclusive" with Lexi's biopsy b/c it was frozen...this was really before the fresh/frozen issue had arisen or we would have gone the other way (mito research really has come a long way in 6 yrs!). i will tell you that the docs at DCH were really instrumental for us in finding out what kind of mito we were dealing with in Lexi's case (PDH, but again only a partial result) and we're going back in July for Mitch's initial work up.

Would you email me privately and let me know what part of CO you're at? Always nice to have a mito mom in close proximity...

ruth

mom to Mitch (9) and Lexi (6), both mito affected and my treasures

[Guest guest]

Yes, I have heard that many docs bad mouth Shoffner. I have also heard that

they say he will diagnose anybody with mito but in all actuality his diagnostic

rates are lower than other leading mito docs. We recently went to a support

group meeting for mito in IL. They had as guest speaker a mito doc from

Children's of Wisc. He said that a fresh muscle biopsy is by far superior to a

frozen one. Our neuro wants to do a biopsy of our son but we won't let her do

it because we want a fresh biopsy. I cannot imagine doing a biopsy and

taking the risk that it will come back negative because it is frozen. I doubt

that

or insurance will agree to pay for a second biopsy.

I think that the problem involves both egos and politics.

[Guest guest]

Hi :

Funny about Colorado because our metabolic doctor has requested that some of

Leah's cells go elsewhere because the labs in Colorado weren't good and plus

they were waiting on something to complete some more testing on her skin

cells. They probably feel they can do just as good a job; meaning money. Do

your research and ask what they can do for you. Just like you want answers

from some one about why you should buy their product or use their service

and/or switch your service from some one else you need proof and answers

before switching. Do your research and ask alot of questions. I believe you

shouldn't bad mouth some one but you try to say why your company is better

when they can do the same thing. If they can truly do the same job that

Soffner can, you will feel comfortable with that. We feel comfortable having

Leah's muscle biopsy done in Madison, WI instead of traveling. There is

still controversary about fresh vs. frozen. I know alot of parents here feel

fresh is the best way; but listen and go with your heart. Even doctors have

disagreed whether to do fresh or frozen.

Nerenhausen

mom to Leah

wrote:

> I know it's kind of an odd question, but just wondering. We have been

> seen and tested by the Metabolic/Genetic Drs at Denver Children's

> hospital and they agree that Will needs the biopsy, but they are doing

> everything they can to discredit Dr Shoffner and trying to get us to do

> it through them. Just wondering if anyone else has seen this from

> their Drs. They have told us the " Dr Shoffner is not the mito guru any

> more " that he tends to get a lot of false positives (especially

> Complex 1) so they don't trust his results. When I have brought up my

> concerns about fresh or frozen, they tell me it really doesn't matter.

> When I have asked about going to one of the other centers that do fresh

> biopsies they say well it really doesn't make a difference, but that

> all of the centers have their problems. Just wondering if it's a

> personality thing up here or if some of you deal with it also. To me

> it comes across as politics/jealousy, but who knows.

> Will is really struggling right now so it's even more important to us

> to get this done soon, and get it done right the first time. I'm

> completely confident in our choice to do the fresh biopsy in Atlanta,

> but it's kind of tough knowing the Drs here are fighting it so much and

> may even discount the results we may get. Oh well, I'm sure there are

> other Drs to see.

> Thanks for any input

>

> In Colorado

>

>

> Please contact mito-owner with any problems or questions.

>