Re: Emotional Dilemma

June 20, 2002

Good Morning Robin,

We are in the same boat, since we now have something in writing, there is a lot of medical "professions" (not the word I would give some of them) are eating humble pie. I believe is that anger guided in the right direction that have gotten us this far. Some of my energy came from this preacher on television talking about how to use anger. He used Florence Nightingale as an example. He said we think of her as this loving and kind nurse, but when she walked into a hospital, they would be nervous. She used her anger to make hospitals better. We can use this anger to fuel our energy to help make people aware of this illness.

I am glad you found a good therapist for .

The following are web sites that may help - he had a successful case against the education system. The family was told that their child could not be educated. They went to a private school for special education and their child received a diploma. If you and I listened to the "professionals" we would not have the help for and J.D.

slaw: From Emotions To Advocacy - The Special Education Survival Guide: http://www.wrightslaw.com/advoc/nwltr/2002/nl.0422.htm

slaw - Special Ed Advocate Newsletter, April 22, 2002 (Issue 161)

http://www.fetaweb.com/

Have a Great Day!

Darlene

Re: Emotional Dilemma

Darlene,Thanks for reading my post. It's amazing all the BS we ahve to go through just to help our children is working with a new therapist, who speciality is children with life-threatening diseases. She suggested they write letters to his old Dr's to tell them how they made him feel, and how hard it was not being believed.It has taken a lot of his anger away.Robin Please contact mito-owner with any problems or questions.

June 20, 2002

In a message dated 6/19/02 11:54:34 AM Pacific Daylight Time,

juhlmann@... writes:

<< I am thankful beyond belief that she is doing so well - I know too well

how ravaging this disease can be. But my thankfulness does not erase my hurt

for my daughter. I hope that no one ever feels that their feelings - joy and

pride and sorrow and hurt about their children are unfounded or wrong. While

I try very hard to put my chin up and focus on hope and the positive - it is

okay to cry sometimes and remember what has been lost or never was. >>

Beautifully written Anne. Thank you.

Dena

June 20, 2002

In a message dated 6/19/02 11:54:34 AM Pacific Daylight Time,

juhlmann@... writes:

<< I am thankful beyond belief that she is doing so well - I know too well

how ravaging this disease can be. But my thankfulness does not erase my hurt

for my daughter. I hope that no one ever feels that their feelings - joy and

pride and sorrow and hurt about their children are unfounded or wrong. While

I try very hard to put my chin up and focus on hope and the positive - it is

okay to cry sometimes and remember what has been lost or never was. >>

Beautifully written Anne. Thank you.

Dena

June 20, 2002

In a message dated 6/19/02 11:54:34 AM Pacific Daylight Time,

juhlmann@... writes:

<< I am thankful beyond belief that she is doing so well - I know too well

how ravaging this disease can be. But my thankfulness does not erase my hurt

for my daughter. I hope that no one ever feels that their feelings - joy and

pride and sorrow and hurt about their children are unfounded or wrong. While

I try very hard to put my chin up and focus on hope and the positive - it is

okay to cry sometimes and remember what has been lost or never was. >>

Beautifully written Anne. Thank you.

Dena

June 20, 2002

Thanks Darlene !

I printed out your response so I will have those email addresses.

Thanks,

Robin

June 24, 2002

First of all I switched from the Neurologist who asked him "Do your legs only hurt when your with your mom?"...Then I read some clinic notes. is a healthy looking boy whose mother has OCD.... Mother states has difficulty keeping up with peers, and complains about pain. I f this child is in as much pain as mother states he would not be functioning at the level he is. He does have a myopathy dx from a muscle biopsy performed in 1989. She wont believe me when I tell her Myopathies are painless.I feel his condition is "Static"...she won't accept that. I suggest family counseling.

robin

as you can see, I am behind on my mail but this is really unbelievable...have you been able to get it thrown out now that you have a diagnosis?

deb

June 24, 2002

Deb,

Actually i've never tried to get it out of his record. Dr. Korson has copies of all his records and he saw all that, and was very kind to us. I guess I should get that stuff out of his records. I now carry a letter from Dr. Korson, and his written dx. from Dr. Shoffner everywhere I go. But i'm still hesitant to take Sara to the Dr. , even though I've switched PCP. It's been a nightmare.

Robin

June 24, 2002

Deb,

Actually i've never tried to get it out of his record. Dr. Korson has copies of all his records and he saw all that, and was very kind to us. I guess I should get that stuff out of his records. I now carry a letter from Dr. Korson, and his written dx. from Dr. Shoffner everywhere I go. But i'm still hesitant to take Sara to the Dr. , even though I've switched PCP. It's been a nightmare.

Robin

June 24, 2002

In a message dated 6/24/02 2:41:35 PM Pacific Daylight Time,

Middpowell@... writes:

<< Actually i've never tried to get it out of his record. Dr. Korson has

copies

of all his records and he saw all that, and was very kind to us. I guess I

should get that stuff out of his records. I now carry a letter from Dr.

Korson, and his written dx. from Dr. Shoffner everywhere I go. But i'm

still

hesitant to take Sara to the Dr. , even though I've switched PCP. It's been

a nightmare.

Robin >>

I've tried to get it out of 's record, but Children's Hospital in

Seattle has told us that it can't be removed-that would be against the law.

(not sure if I believe them, but I don't have much energy right now to fight

this issue) They say that I can write my opinion and that it has to be put

in the chart. But, I did that with an improper chart note from Sept, 2001

(sent the response certified) and it has never been placed in the chart.

And, like I told the hospital, if someone is alleging MSBP (which means that

the mom fabricates, lies), then who is going to listen to mom's statement

attached to the doctor's note??

I'm trying to focus more of my energy now on finding medical providers who

will look at the medical records, the history, the boys and how they look now

and do an unbiased evaluation. Like many on this list have said, the

majority of the well known mito docs are used to false accusations of MSBP,

and will evaluate the entire situation objectively. That's my hope

anyway.......

Dena

June 24, 2002