Dr. Cohen and Confirming Mito

[Guest guest]

Dr. Cohen diagnosed mito in my youngest son by blood, urine, and muscle biopsy, but things turned nasty when we got back to our home state. One of my son's doctors did not believe his diagnosis saying my son looked too healthy to be sick, and this idiot even went so far as to claim that Dr. Cohen was guilty of malpractice by diagnosing my "basically healthy" child with a "terminal illness", thereby making my son think that he's sick, which then caused him to have "psychosomatic illness" according to this stupid doctor. The legal battle which followed was a nightmare for everyone involved, especially my son, and it ended up causing Dr. Cohen alot of grief, also. This could possibly be why he may not officially call it mito even when it is obvious now. There is unscrupulous and vindictive doctors out there that can ruin things for others, and unfortunately I had to experience one such doctor who then went on

to tear our family apart. I certainly hope that my situation did not result in Dr. Cohen being more cautious about diagnosing mito in other kids, but I wanted to share our situation as a possibility as to why he may not commit to a definitive diagnosis.

craigsstory wrote:

It is the same in our case, Darla. Dr. Cohen never actually came out and said, "Craig has mito," - just that the biopsy "points to a "disorder of energy metabolism." In Craig's case I guess that is because the biospy was clearly abnormal with ragged red-fibers and his clinical pictures fits in many ways, but his respiratory chain and fatty acid oxidation appeared normal. Craig's lactic acid and amino acids were always normal as well. (His younger brothers have not been though and he is not even diagnosed with anything yet!) Craig does not seem to fit any "classical" mito category , as Dr. Cohen put it.Donna H.> > >> > > As I have been sharing with you all, goes to see Dr. Saneto> > > tomorrow at 2:00. I am glad to see that he is the guest speaker> > > tomorrow night on the chat. I was also glad to see what was> > written> > > about him. We have never seen him before. Our normal neurologist> > is> > > referring us to him. I always get a little nervous meeting new> > > doctor's.> > > Please pray that our muscle biopsy results are all in. I know> > that> > > alot of them are in I just haven't been told yet.> > > I should be able to sleep tonight and not let the anxiety get to> >

meas> > > and I spent several hours in the ER tonight. He loves to> > > climb and tonight he was on a stump at a friends house and well,> > he> > > has 4 stitches in his scrotum! He always waits for me to turn my> > > back and does what he was told not to do!! Typical boy huh!?!> > >> > > You are allin my prayers and thank you all for the support.> > >> > > God Bless,> > >> > > > >> >> >> >> >> > Please contact mito-owner with any problems or questions.> >> >> >> > ---------------------------------> >

[Guest guest]

Thanks for sharing that, . That helps us. What an

unbelievable story! It breaks my heart that one of the only doctors

who ever really listened to and respected me as a Mom had to suffer

for his mitochondrial expertise. And the unnecessary heartache and

additional stress to your family! I am appalled. I hope and pray

you and your son are recovering well from the nightmare you have

experienced.

Donna H.

Mom to Craig (8) unspecified mito and Dalton (6) possible mito

> > > >

> > > > As I have been sharing with you all, goes to see Dr.

> Saneto

> > > > tomorrow at 2:00. I am glad to see that he is the guest

> speaker

> > > > tomorrow night on the chat. I was also glad to see what was

> > > written

> > > > about him. We have never seen him before. Our normal

> neurologist

> > > is

> > > > referring us to him. I always get a little nervous meeting

new

> > > > doctor's.

> > > > Please pray that our muscle biopsy results are all in. I

know

> > > that

> > > > alot of them are in I just haven't been told yet.

> > > > I should be able to sleep tonight and not let the anxiety

get

> to

> > > meas

> > > > and I spent several hours in the ER tonight. He

loves

> to

> > > > climb and tonight he was on a stump at a friends house and

> well,

> > > he

> > > > has 4 stitches in his scrotum! He always waits for me to

turn

> my

> > > > back and does what he was told not to do!! Typical boy

huh!?!

> > > >

> > > > You are allin my prayers and thank you all for the support.

> > > >

> > > > God Bless,

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

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

> questions.

> > >

> > >

> > >

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

> > >