RE: Recent Hospitalization

[Guest guest]

,

Glad to hear is doing some better and was able to go for a ride in the car, even if she did crash when she got home. I am sure she enjoyed the ride.

It sounds to me like it might be time to look for a new Doctor. She sounds rude and arrogant, two things you certainly shouldn't have to put up with.

Take care and hope things continue to improve even if slowly,

Kathy, grandma to Audrey, 29 mos

[Guest guest]

,

Glad to hear is doing some better and was able to go for a ride in the car, even if she did crash when she got home. I am sure she enjoyed the ride.

It sounds to me like it might be time to look for a new Doctor. She sounds rude and arrogant, two things you certainly shouldn't have to put up with.

Take care and hope things continue to improve even if slowly,

Kathy, grandma to Audrey, 29 mos

[Guest guest]

,

Had been wondering about you and how you were doing. Good for you for standing up for your child and being an advocate for . Hope the situation improves and that the mito doc. will take off her blinders and see the light of day.

[Guest guest]

,

Had been wondering about you and how you were doing. Good for you for standing up for your child and being an advocate for . Hope the situation improves and that the mito doc. will take off her blinders and see the light of day.

[Guest guest]

Vent away! Sorry you had such a rough time with the doc. Don't you just hate it when they don't listen to us because we don't have the title doctor? That is the exact reason it took us 5 weeks to learn the virus we have in the house is pertussis and exactly why ALL of us has to go through it to one extent or another. If they just would have listened to me 2 weeks after it all began, it might have spared some of us and others exposed by us that may also get it. I find this happens quite frequently with doctors. It has always amazed me how some doctors assess accurately and honestly and others always seem to downplay everything or to explain away issues because they can't explain why they happen or just don't want to deal with it. Way to stand up for your kid! I try but seem to get pushed around at times. It took us 5 visits to get my whole family on meds as a precaution! FIVE! I just had to find the right doc to do the right thing. It's gonna cost a bundle, but it may save my little ones' lives. If I could count the times I have felt that "mother's instinct" and been ignored, only to find out later I was right. Many times only to regret not pushing more. Anyway, glad your home again and hope your daughter starts getting some more energy again. Darla: mommy to Asenath, Zipporrah, and the gang Recent Hospitalization Hi , How did things go at the hospital? Any answers? Any improvements? Joanne Kocourek, RN, CCRC Manager of Clinical Research The University of Chicago Department of Radiology Please contact mito-owner with any problems or questions.

[Guest guest]

Vent away! Sorry you had such a rough time with the doc. Don't you just hate it when they don't listen to us because we don't have the title doctor? That is the exact reason it took us 5 weeks to learn the virus we have in the house is pertussis and exactly why ALL of us has to go through it to one extent or another. If they just would have listened to me 2 weeks after it all began, it might have spared some of us and others exposed by us that may also get it. I find this happens quite frequently with doctors. It has always amazed me how some doctors assess accurately and honestly and others always seem to downplay everything or to explain away issues because they can't explain why they happen or just don't want to deal with it. Way to stand up for your kid! I try but seem to get pushed around at times. It took us 5 visits to get my whole family on meds as a precaution! FIVE! I just had to find the right doc to do the right thing. It's gonna cost a bundle, but it may save my little ones' lives. If I could count the times I have felt that "mother's instinct" and been ignored, only to find out later I was right. Many times only to regret not pushing more. Anyway, glad your home again and hope your daughter starts getting some more energy again. Darla: mommy to Asenath, Zipporrah, and the gang Recent Hospitalization Hi , How did things go at the hospital? Any answers? Any improvements? Joanne Kocourek, RN, CCRC Manager of Clinical Research The University of Chicago Department of Radiology Please contact mito-owner with any problems or questions.

[Guest guest]

Vent away! Sorry you had such a rough time with the doc. Don't you just hate it when they don't listen to us because we don't have the title doctor? That is the exact reason it took us 5 weeks to learn the virus we have in the house is pertussis and exactly why ALL of us has to go through it to one extent or another. If they just would have listened to me 2 weeks after it all began, it might have spared some of us and others exposed by us that may also get it. I find this happens quite frequently with doctors. It has always amazed me how some doctors assess accurately and honestly and others always seem to downplay everything or to explain away issues because they can't explain why they happen or just don't want to deal with it. Way to stand up for your kid! I try but seem to get pushed around at times. It took us 5 visits to get my whole family on meds as a precaution! FIVE! I just had to find the right doc to do the right thing. It's gonna cost a bundle, but it may save my little ones' lives. If I could count the times I have felt that "mother's instinct" and been ignored, only to find out later I was right. Many times only to regret not pushing more. Anyway, glad your home again and hope your daughter starts getting some more energy again. Darla: mommy to Asenath, Zipporrah, and the gang Recent Hospitalization Hi , How did things go at the hospital? Any answers? Any improvements? Joanne Kocourek, RN, CCRC Manager of Clinical Research The University of Chicago Department of Radiology Please contact mito-owner with any problems or questions.

[Guest guest]

,

I'm sorry is having more problems but glad you are getting answers.

You all are in our prayers.

, Mom to

Recent Hospitalization

Hi ,

How did things go at the hospital? Any answers? Any improvements?

Joanne Kocourek, RN, CCRC

Manager of Clinical Research

The University of Chicago

Department of Radiology

Please contact mito-owner with any problems or questions.

[Guest guest]

,

I'm sorry is having more problems but glad you are getting answers.

You all are in our prayers.

, Mom to

Recent Hospitalization

Hi ,

How did things go at the hospital? Any answers? Any improvements?

Joanne Kocourek, RN, CCRC

Manager of Clinical Research

The University of Chicago

Department of Radiology

Please contact mito-owner with any problems or questions.

[Guest guest]

,

I'm sorry is having more problems but glad you are getting answers.

You all are in our prayers.

, Mom to

Recent Hospitalization

Hi ,

How did things go at the hospital? Any answers? Any improvements?

Joanne Kocourek, RN, CCRC

Manager of Clinical Research

The University of Chicago

Department of Radiology

Please contact mito-owner with any problems or questions.

[Guest guest]

Dear ,

Cocky doctors like that make me sick

to my stomach. I am so glad you did not take that crap. They act like they know

our children more than we do after spending minutes with them. I can so relate

to your experience, I got sick to my stomach reading it. If you have been on

Samya’s website you would know. I was told by a horrible doctor to send

her to school because all her symptoms were psychosomatic and she need to get a

life. I was denied a home school teacher because according to the doctor, she

has no reason to not be in school. Then I was adviced to take her to a

psychologist for this “depression” that is making her unable to

walk. I , the idiot, believed them over my daughter, because they had

misdiagnosed her, not even considered mito,

and found no medical evidence for her actions. Well, they were wrong, my

daughter was right. And deteriorating before my eyes. I have to live with the

guilt forever of not believing her, and she was dead less than 2 months later.

Even when she was intubated, that piece of garbage neurologist had the gall to

call her inability to breathe an act for attention. By then I had about had it

with her and almost killed her had it not been for my commitment at that point

to save my energy for my daughter. Can you imagine how I feel now? Doctors that

think they know everything have no business being doctors. Thanks for letting

me vent. Now I am really angry and need to calm

down.

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: Tommie &

Horsley

Sent: Friday, January 30, 2004

9:03 AM

To: Mito ;

chiari ; chiari (AT) e; acm-friends ;

wacma

Subject: Recent Hospitalization

Hey there my friends!

We are home from the hospital and finally my posts are going

through. We did get some answers from the pulmonologist that did prove to

J's mito Dr

that she was wrong about her breathing problems being anxiety. She tried to

make me look bad in front of a large group of residents and everyone else in

the hallway. She told me that the probelms were all anxiety, I was to easy on

her, her eye tics were just a habit and she needed to get a life and get back into

school fulltime.

Well what she did not know is that the pulmonary Dr had

brought me a copy of her PF test. I told her she was wrong and she told me I

was not a Dr. Then I waved the test results at her. She said how did I

get this I told her they had brought it to me. The cold air challenge showed

Athsma. The P Dr

told me that the throat tics, her upper body muscle weakness and the athsma all

are causes for her respiratory distress. He put her on two puffers.

They also put her on 150 Mg zantac 2x a day for her

reflux...just another thing her Mito

Dr refused to address. I aslo asked her if she was

going to addresss the chiari, she said no that it was not a chiari until it ws

7mm or greater. I told her she was mistaken and that if that was true then why

did the Dr who read the MRI say it was a chiari at 4mm? I told her I knew those

who had less than 5mm and have had to have surgery. She said so you want

surgery for something that is not there? I said no not at all but you can have

severe problems with minimal hurniations and that some with very large

hurniations sometimes do very well. She then said there had been a Dr there at

Children's Hospital who lost his lisence for opperating on everyone he saw.

Oh well got some explanations...thats good and Tommie was a

witness to her attitute and how she treated me.....he said what I did...she

needs to come live a week or two with us before making such off the wall

recommendations.

finally was doing better yesterday and she wanted to

go for a car ride. We rode for about an hour, then she crashed and today is not

doing well at all.....and this Dr wants her in school full time ....shows ya

how much she does not listen.

I am so far behind in all the posts and I know I wont be

able to read them all but I am wishing all here a great day filled with

sunshine!

Thanks for listening to me vent,

Horsley

Recent

Hospitalization

Hi ,

How did things go at the hospital? Any answers?

Any improvements?

Joanne Kocourek, RN, CCRC

Manager of Clinical Research

The University

of Chicago

Department of Radiology

Please

contact mito-owner with any problems or questions.