RE: Granddaughter has complex III, father roadblocking treatment with courts help

[Guest guest]

I cannot imagine what you are going through, your in my prayers.

My only advice would be to print off as much info as you can from www.umdf.org and www.mdausa.org. These are the websites from the united mitochondrial disease foundation and the muscular dystrophy association. These are both great recourses of info on the disease. You may also want to have a mito doc, share info regarding the disease with the courts. You probally would be able to get a parent advocate through muscular dystrophy association, they can help protect your, and your grandchilds, rights through all of this.

best wishes

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[Guest guest]

I cannot imagine what you are going through, your in my prayers.

My only advice would be to print off as much info as you can from www.umdf.org and www.mdausa.org. These are the websites from the united mitochondrial disease foundation and the muscular dystrophy association. These are both great recourses of info on the disease. You may also want to have a mito doc, share info regarding the disease with the courts. You probally would be able to get a parent advocate through muscular dystrophy association, they can help protect your, and your grandchilds, rights through all of this.

best wishes

Find the music you love with MSN Music – tracks are just 99c!

[Guest guest]

Im so sorry for all this, it sounds like a nightmare for all of

you.

Im assuming your daughter has a lawyer, but honestly I would find

another one... Your grandaughter has a confirmed diagnosis, and yet

the father is somehow managing to convince the courts that its all

in your daughters head? If you have medical documentation showing

she is sick, and he is refusing to accept or treat it, and the

courts are still siding with himg I dont think her lawyer is doing

his job.

Keely

>

[Guest guest]

Do a fundraiser, take out a loan, get a bunch of money together and do whatever you have to do to hire a GOOD lawyer. You may have to interview several before you find one with a sufficiently functioning brain to handle a case as complex as this. Your daughter needs an equalizer now! You will also need money to obtain the expert witness testimony you will need. I am so sorry about what you and your family is going through. The illness is dreadful enough without throwing an unreasonable parent into the mix. There's a lady who monitors this site that helps with fundraising. I can't remember her name, but hopefully she'll see this and contact you.

brenda h wrote:

My granddaughter ,Hannah, is 5 years 4 months old and has Complex III. It is my understanding that with that one, a person can be totally asymptomatic, or have problems in any organ in the body affected. Before the diagnosis was confirmed, my daughter, a special ed teacher, spent years identifying and documenting symptoms that indicated problems with Hannah's brain. She has periods of slowed cognitive processing, she has a cognitive delay that has emerged over time, she has violent self-injurious episodes where she bites herself and bangs her head on the floor but is unable to speak (only screams) or respond to questions, she complains of pain periodically, and has irrational anxiety surrounding strangers and fears that someone is going to hurt her or her mother or sister. All of these symptoms are subjective, and when my daughter sought treatment, she was referred to a psychiatrist who felt that all of these symptoms made sense considering the

mitochondrial involvement. However, the child's father, following my daughter's divorce from him, began telling the doctors and the courts that his daughter was perfectly normal 'with him' and that the symptoms did not exist at all. The courts and the doctors found no way to disprove this assertion, and Hannah and her 10 year old sister have been sent to live with the father since her symptoms are to magically improve in his presence. They have been with him for 4 months now.

Since these types of symptoms are subjective, and can not be determined with a blood test, how can we prove their existence and the severity of the risk they present for Hannah while untreated and unsupported? The school has seen a self-injurious episode, but wrote it off as a one-time occurance since Dad denies that they ever happen with him. My daughter has videoed the episodes, but if you don't show that they come over her out of the blue, they resemble a violent temper tantrum???

My daughter and our entire extended family took precautions to protect Hannah from viruses and give the necessary sleep and considerations for her special needs. She was in pt and ot and other things that were helping her developmentally. The father, not wanting to have a blemish on his name by having a "psychiatric issue" will not allow for her to even complain when she hurts. He spanks her with a wooden spoon if she complains of hurting, wets herself, makes a mess while eating, or has a bad day at school. She is being badly mistreated for something she can't help. There is no doubt that her medical needs are not being met. Among so many other things. I am at a loss of what to do now. The courts aren't familiar with mito. They say" Dad says kid isn't affected when with him, Mom is screaming please let me get help for my child, So lets let kid stay with dad where there is no problem.

I know you all would say where is your doctor in this. Well, yes. Where is he. Well, biopsy in 02, diagnosis in August of 04. The geneticist who diagnosed her, did just that. He gave us the diagnosis based solely on the biopsy. Father denying all symptoms, accused my daughter of having munchaussen by proxy. Father cause several doctors to refuse to treat Hannah because he insisted it is in the mom's mind and doctors dont have to do the legal battle. They just refuse to treat her. Now the courts have the diagnosis and have allowed the father to keep Hannah from being treated. But, what is Mitochondrial Disease, complex III anyway. They have not heard of it. Father denys it. Hannah is suffering. And being mistreated too.

I have been tuned in to this group for about 6 weeks now, afraid to share my delimma. But now I am. I hope someone will have some suggestion. We have tried Child Protective Services, they are investigating the bruises, but since court put kids in fathers home they are just watching. I have called civil rights groups, they say that family court, kids rights are different. Early on my daughter asked for an ad litem attorney for the child, the court denied it. Now, because of the apparent ignorance of the legal community about mito, maybe an ad litem would not be good. We are at a total loss. My daughter, without her girls, is having to carry on. Knowing that her baby is vulnerable to exposure to viruses, has had a bad winter because of no special consideration. There is to be another court date soon for the final custody issue. It hasn't been set yet. We need some help . Some suggestions.

Please.

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[Guest guest]

Thank you for the kind words. We do have an attorney. The 6th in 2 years. This is all so complex that they all get lost in it. My daughter is really detail oriented and has tried to simplify for everyone. But as you can tell, it isnl't working.

Thanks again.suhad1970@... wrote:

I am dumbfounded , shocked and so angry. I am so sorry that you and your daughter are dealing with this. Having mito is enough, but to add to it such cruelty. I do not have any advice except to find a good lawyer and one that is willing to do lots and lots of research and educate himself on a very complicated ( to say the least) disease.I feel so bad for you because I know how costly lawyers can be and I have not had experience with any that seemed to have a “heart” and understanding enough to charge “reasonable” fees. Maybe you will be lucky and find one that “cares”. I will keep you in my prayers and best of luck to you. God bless,

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

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

From: brenda h Sent: Wednesday, January 26, 2005 11:29 AMTo: mito Subject: Granddaughter has complex III, father roadblocking treatment with courts help

My granddaughter ,Hannah, is 5 years 4 months old and has Complex III. It is my understanding that with that one, a person can be totally asymptomatic, or have problems in any organ in the body affected. Before the diagnosis was confirmed, my daughter, a special ed teacher, spent years identifying and documenting symptoms that indicated problems with Hannah's brain. She has periods of slowed cognitive processing, she has a cognitive delay that has emerged over time, she has violent self-injurious episodes where she bites herself and bangs her head on the floor but is unable to speak (only screams) or respond to questions, she complains of pain periodically, and has irrational anxiety surrounding strangers and fears that someone is going to hurt her or her mother or sister. All of these symptoms are subjective, and when my daughter sought treatment, she was referred to a

psychiatrist who felt that all of these symptoms made sense considering the mitochondrial involvement. However, the child's father, following my daughter's divorce from him, began telling the doctors and the courts that his daughter was perfectly normal 'with him' and that the symptoms did not exist at all. The courts and the doctors found no way to disprove this assertion, and Hannah and her 10 year old sister have been sent to live with the father since her symptoms are to magically improve in his presence. They have been with him for 4 months now.

Since these types of symptoms are subjective, and can not be determined with a blood test, how can we prove their existence and the severity of the risk they present for Hannah while untreated and unsupported? The school has seen a self-injurious episode, but wrote it off as a one-time occurance since Dad denies that they ever happen with him. My daughter has videoed the episodes, but if you don't show that they come over her out of the blue, they resemble a violent temper tantrum???

My daughter and our entire extended family took precautions to protect Hannah from viruses and give the necessary sleep and considerations for her special needs. She was in pt and ot and other things that were helping her developmentally. The father, not wanting to have a blemish on his name by having a "psychiatric issue" will not allow for her to even complain when she hurts. He spanks her with a wooden spoon if she complains of hurting, wets herself, makes a mess while eating, or has a bad day at school. She is being badly mistreated for something she can't help. There is no doubt that her medical needs are not being met. Among so many other things. I am at a loss of what to do now. The courts aren't familiar with mito. They say" Dad says kid isn't affected when with

him, Mom is screaming please let me get help for my child, So lets let kid stay with dad where there is no problem.

I know you all would say where is your doctor in this. Well, yes. Where is he. Well, biopsy in 02, diagnosis in August of 04. The geneticist who diagnosed her, did just that. He gave us the diagnosis based solely on the biopsy. Father denying all symptoms, accused my daughter of having munchaussen by proxy. Father cause several doctors to refuse to treat Hannah because he insisted it is in the mom's mind and doctors dont have to do the legal battle. They just refuse to treat her. Now the courts have the diagnosis and have allowed the father to keep Hannah from being treated. But, what is Mitochondrial Disease, complex III anyway. They have not heard of it. Father denys it. Hannah is suffering. And being mistreated too.

I have been tuned in to this group for about 6 weeks now, afraid to share my delimma. But now I am. I hope someone will have some suggestion. We have tried Child Protective Services, they are investigating the bruises, but since court put kids in fathers home they are just watching. I have called civil rights groups, they say that family court, kids rights are different. Early on my daughter asked for an ad litem attorney for the child, the court denied it. Now, because of the apparent ignorance of the legal community about mito, maybe an ad litem would not be good. We are at a total loss. My daughter, without her girls, is having to carry on. Knowing that her baby is vulnerable to exposure to viruses, has had a bad winter because of no special consideration. There is to be

another court date soon for the final custody issue. It hasn't been set yet. We need some help . Some suggestions. Please.

Do you Yahoo!?Yahoo! Mail - now with 250MB free storage. Learn more. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Thank you for the kind words. We do have an attorney. The 6th in 2 years. This is all so complex that they all get lost in it. My daughter is really detail oriented and has tried to simplify for everyone. But as you can tell, it isnl't working.

Thanks again.suhad1970@... wrote:

I am dumbfounded , shocked and so angry. I am so sorry that you and your daughter are dealing with this. Having mito is enough, but to add to it such cruelty. I do not have any advice except to find a good lawyer and one that is willing to do lots and lots of research and educate himself on a very complicated ( to say the least) disease.I feel so bad for you because I know how costly lawyers can be and I have not had experience with any that seemed to have a “heart” and understanding enough to charge “reasonable” fees. Maybe you will be lucky and find one that “cares”. I will keep you in my prayers and best of luck to you. God bless,

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

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

From: brenda h Sent: Wednesday, January 26, 2005 11:29 AMTo: mito Subject: Granddaughter has complex III, father roadblocking treatment with courts help

My granddaughter ,Hannah, is 5 years 4 months old and has Complex III. It is my understanding that with that one, a person can be totally asymptomatic, or have problems in any organ in the body affected. Before the diagnosis was confirmed, my daughter, a special ed teacher, spent years identifying and documenting symptoms that indicated problems with Hannah's brain. She has periods of slowed cognitive processing, she has a cognitive delay that has emerged over time, she has violent self-injurious episodes where she bites herself and bangs her head on the floor but is unable to speak (only screams) or respond to questions, she complains of pain periodically, and has irrational anxiety surrounding strangers and fears that someone is going to hurt her or her mother or sister. All of these symptoms are subjective, and when my daughter sought treatment, she was referred to a

psychiatrist who felt that all of these symptoms made sense considering the mitochondrial involvement. However, the child's father, following my daughter's divorce from him, began telling the doctors and the courts that his daughter was perfectly normal 'with him' and that the symptoms did not exist at all. The courts and the doctors found no way to disprove this assertion, and Hannah and her 10 year old sister have been sent to live with the father since her symptoms are to magically improve in his presence. They have been with him for 4 months now.

Since these types of symptoms are subjective, and can not be determined with a blood test, how can we prove their existence and the severity of the risk they present for Hannah while untreated and unsupported? The school has seen a self-injurious episode, but wrote it off as a one-time occurance since Dad denies that they ever happen with him. My daughter has videoed the episodes, but if you don't show that they come over her out of the blue, they resemble a violent temper tantrum???

My daughter and our entire extended family took precautions to protect Hannah from viruses and give the necessary sleep and considerations for her special needs. She was in pt and ot and other things that were helping her developmentally. The father, not wanting to have a blemish on his name by having a "psychiatric issue" will not allow for her to even complain when she hurts. He spanks her with a wooden spoon if she complains of hurting, wets herself, makes a mess while eating, or has a bad day at school. She is being badly mistreated for something she can't help. There is no doubt that her medical needs are not being met. Among so many other things. I am at a loss of what to do now. The courts aren't familiar with mito. They say" Dad says kid isn't affected when with

him, Mom is screaming please let me get help for my child, So lets let kid stay with dad where there is no problem.

I know you all would say where is your doctor in this. Well, yes. Where is he. Well, biopsy in 02, diagnosis in August of 04. The geneticist who diagnosed her, did just that. He gave us the diagnosis based solely on the biopsy. Father denying all symptoms, accused my daughter of having munchaussen by proxy. Father cause several doctors to refuse to treat Hannah because he insisted it is in the mom's mind and doctors dont have to do the legal battle. They just refuse to treat her. Now the courts have the diagnosis and have allowed the father to keep Hannah from being treated. But, what is Mitochondrial Disease, complex III anyway. They have not heard of it. Father denys it. Hannah is suffering. And being mistreated too.

I have been tuned in to this group for about 6 weeks now, afraid to share my delimma. But now I am. I hope someone will have some suggestion. We have tried Child Protective Services, they are investigating the bruises, but since court put kids in fathers home they are just watching. I have called civil rights groups, they say that family court, kids rights are different. Early on my daughter asked for an ad litem attorney for the child, the court denied it. Now, because of the apparent ignorance of the legal community about mito, maybe an ad litem would not be good. We are at a total loss. My daughter, without her girls, is having to carry on. Knowing that her baby is vulnerable to exposure to viruses, has had a bad winter because of no special consideration. There is to be

another court date soon for the final custody issue. It hasn't been set yet. We need some help . Some suggestions. Please.

Do you Yahoo!?Yahoo! Mail - now with 250MB free storage. Learn more. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Thanks for the advise. I had not thought of a fundraiser. We have done loans, appealed to great grandparents and other extended family. We have gotten a lot of money together and have interviewed and dismissed attorneys. We have had 6 all together. Most of them are an outright disgrace. Some were ok but just no match for their attorneys. They happen to have an attorney in the family.

Because this was my daughters child hood sweetheart and they married after she graduated from college, there is a lot of history between the two families. They know we don't have any money. We do however have only one child, and she had the good sense to finish college and get her masters. She teaches and is an outstanding mother. I am very proud. The ex son in law and his parents are all about appearances and it won't do that their grand child have a problem. They are not just denying, like they don't want to face it. They are outright lying about it. They can't see what it is doing to both girls.

Sorry I got off track. You said something about fund raising. I never thought about that. Thanksc k wrote:

Do a fundraiser, take out a loan, get a bunch of money together and do whatever you have to do to hire a GOOD lawyer. You may have to interview several before you find one with a sufficiently functioning brain to handle a case as complex as this. Your daughter needs an equalizer now! You will also need money to obtain the expert witness testimony you will need. I am so sorry about what you and your family is going through. The illness is dreadful enough without throwing an unreasonable parent into the mix. There's a lady who monitors this site that helps with fundraising. I can't remember her name, but hopefully she'll see this and contact you.

brenda h wrote:

My granddaughter ,Hannah, is 5 years 4 months old and has Complex III. It is my understanding that with that one, a person can be totally asymptomatic, or have problems in any organ in the body affected. Before the diagnosis was confirmed, my daughter, a special ed teacher, spent years identifying and documenting symptoms that indicated problems with Hannah's brain. She has periods of slowed cognitive processing, she has a cognitive delay that has emerged over time, she has violent self-injurious episodes where she bites herself and bangs her head on the floor but is unable to speak (only screams) or respond to questions, she complains of pain periodically, and has irrational anxiety surrounding strangers and fears that someone is going to hurt her or her mother or sister. All of these symptoms are subjective, and when my daughter sought treatment, she was referred to a psychiatrist who felt that all of these symptoms made sense considering the

mitochondrial involvement. However, the child's father, following my daughter's divorce from him, began telling the doctors and the courts that his daughter was perfectly normal 'with him' and that the symptoms did not exist at all. The courts and the doctors found no way to disprove this assertion, and Hannah and her 10 year old sister have been sent to live with the father since her symptoms are to magically improve in his presence. They have been with him for 4 months now.

Since these types of symptoms are subjective, and can not be determined with a blood test, how can we prove their existence and the severity of the risk they present for Hannah while untreated and unsupported? The school has seen a self-injurious episode, but wrote it off as a one-time occurance since Dad denies that they ever happen with him. My daughter has videoed the episodes, but if you don't show that they come over her out of the blue, they resemble a violent temper tantrum???

My daughter and our entire extended family took precautions to protect Hannah from viruses and give the necessary sleep and considerations for her special needs. She was in pt and ot and other things that were helping her developmentally. The father, not wanting to have a blemish on his name by having a "psychiatric issue" will not allow for her to even complain when she hurts. He spanks her with a wooden spoon if she complains of hurting, wets herself, makes a mess while eating, or has a bad day at school. She is being badly mistreated for something she can't help. There is no doubt that her medical needs are not being met. Among so many other things. I am at a loss of what to do now. The courts aren't familiar with mito. They say" Dad says kid isn't affected when with him, Mom is screaming please let me get help for my child, So lets let kid stay with dad where there is no problem.

I know you all would say where is your doctor in this. Well, yes. Where is he. Well, biopsy in 02, diagnosis in August of 04. The geneticist who diagnosed her, did just that. He gave us the diagnosis based solely on the biopsy. Father denying all symptoms, accused my daughter of having munchaussen by proxy. Father cause several doctors to refuse to treat Hannah because he insisted it is in the mom's mind and doctors dont have to do the legal battle. They just refuse to treat her. Now the courts have the diagnosis and have allowed the father to keep Hannah from being treated. But, what is Mitochondrial Disease, complex III anyway. They have not heard of it. Father denys it. Hannah is suffering. And being mistreated too.

I have been tuned in to this group for about 6 weeks now, afraid to share my delimma. But now I am. I hope someone will have some suggestion. We have tried Child Protective Services, they are investigating the bruises, but since court put kids in fathers home they are just watching. I have called civil rights groups, they say that family court, kids rights are different. Early on my daughter asked for an ad litem attorney for the child, the court denied it. Now, because of the apparent ignorance of the legal community about mito, maybe an ad litem would not be good. We are at a total loss. My daughter, without her girls, is having to carry on. Knowing that her baby is vulnerable to exposure to viruses, has had a bad winter because of no special consideration. There is to be another court date soon for the final custody issue. It hasn't been set yet. We need some help . Some suggestions.

Please.

Do you Yahoo!?Yahoo! Mail - now with 250MB free storage. Learn more. Please contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

Thanks for the advise. I had not thought of a fundraiser. We have done loans, appealed to great grandparents and other extended family. We have gotten a lot of money together and have interviewed and dismissed attorneys. We have had 6 all together. Most of them are an outright disgrace. Some were ok but just no match for their attorneys. They happen to have an attorney in the family.

Because this was my daughters child hood sweetheart and they married after she graduated from college, there is a lot of history between the two families. They know we don't have any money. We do however have only one child, and she had the good sense to finish college and get her masters. She teaches and is an outstanding mother. I am very proud. The ex son in law and his parents are all about appearances and it won't do that their grand child have a problem. They are not just denying, like they don't want to face it. They are outright lying about it. They can't see what it is doing to both girls.

Sorry I got off track. You said something about fund raising. I never thought about that. Thanksc k wrote:

Do a fundraiser, take out a loan, get a bunch of money together and do whatever you have to do to hire a GOOD lawyer. You may have to interview several before you find one with a sufficiently functioning brain to handle a case as complex as this. Your daughter needs an equalizer now! You will also need money to obtain the expert witness testimony you will need. I am so sorry about what you and your family is going through. The illness is dreadful enough without throwing an unreasonable parent into the mix. There's a lady who monitors this site that helps with fundraising. I can't remember her name, but hopefully she'll see this and contact you.

brenda h wrote:

My granddaughter ,Hannah, is 5 years 4 months old and has Complex III. It is my understanding that with that one, a person can be totally asymptomatic, or have problems in any organ in the body affected. Before the diagnosis was confirmed, my daughter, a special ed teacher, spent years identifying and documenting symptoms that indicated problems with Hannah's brain. She has periods of slowed cognitive processing, she has a cognitive delay that has emerged over time, she has violent self-injurious episodes where she bites herself and bangs her head on the floor but is unable to speak (only screams) or respond to questions, she complains of pain periodically, and has irrational anxiety surrounding strangers and fears that someone is going to hurt her or her mother or sister. All of these symptoms are subjective, and when my daughter sought treatment, she was referred to a psychiatrist who felt that all of these symptoms made sense considering the

mitochondrial involvement. However, the child's father, following my daughter's divorce from him, began telling the doctors and the courts that his daughter was perfectly normal 'with him' and that the symptoms did not exist at all. The courts and the doctors found no way to disprove this assertion, and Hannah and her 10 year old sister have been sent to live with the father since her symptoms are to magically improve in his presence. They have been with him for 4 months now.

Since these types of symptoms are subjective, and can not be determined with a blood test, how can we prove their existence and the severity of the risk they present for Hannah while untreated and unsupported? The school has seen a self-injurious episode, but wrote it off as a one-time occurance since Dad denies that they ever happen with him. My daughter has videoed the episodes, but if you don't show that they come over her out of the blue, they resemble a violent temper tantrum???

My daughter and our entire extended family took precautions to protect Hannah from viruses and give the necessary sleep and considerations for her special needs. She was in pt and ot and other things that were helping her developmentally. The father, not wanting to have a blemish on his name by having a "psychiatric issue" will not allow for her to even complain when she hurts. He spanks her with a wooden spoon if she complains of hurting, wets herself, makes a mess while eating, or has a bad day at school. She is being badly mistreated for something she can't help. There is no doubt that her medical needs are not being met. Among so many other things. I am at a loss of what to do now. The courts aren't familiar with mito. They say" Dad says kid isn't affected when with him, Mom is screaming please let me get help for my child, So lets let kid stay with dad where there is no problem.

I know you all would say where is your doctor in this. Well, yes. Where is he. Well, biopsy in 02, diagnosis in August of 04. The geneticist who diagnosed her, did just that. He gave us the diagnosis based solely on the biopsy. Father denying all symptoms, accused my daughter of having munchaussen by proxy. Father cause several doctors to refuse to treat Hannah because he insisted it is in the mom's mind and doctors dont have to do the legal battle. They just refuse to treat her. Now the courts have the diagnosis and have allowed the father to keep Hannah from being treated. But, what is Mitochondrial Disease, complex III anyway. They have not heard of it. Father denys it. Hannah is suffering. And being mistreated too.

I have been tuned in to this group for about 6 weeks now, afraid to share my delimma. But now I am. I hope someone will have some suggestion. We have tried Child Protective Services, they are investigating the bruises, but since court put kids in fathers home they are just watching. I have called civil rights groups, they say that family court, kids rights are different. Early on my daughter asked for an ad litem attorney for the child, the court denied it. Now, because of the apparent ignorance of the legal community about mito, maybe an ad litem would not be good. We are at a total loss. My daughter, without her girls, is having to carry on. Knowing that her baby is vulnerable to exposure to viruses, has had a bad winter because of no special consideration. There is to be another court date soon for the final custody issue. It hasn't been set yet. We need some help . Some suggestions.

Please.

Do you Yahoo!?Yahoo! Mail - now with 250MB free storage. Learn more. Please contact mito-owner with any problems or questions.

__________________________________________________

[Guest guest]

That's what I think too. But it is all we have right now. We do have the confirmed diagnosis. The judge got it from Little Rock 3 days before the last court date. But she was believing the fathers claim that Hannah is symptom free with him. "Magic" Not sick with him. I think the exact words were,"perfect, no problems except for behavior problems because her mother is permissive and has taught her to say she hurts when maybe she is just mad." He told the court that my daughter taught her the wrong words. He is really a dunce. But he smiles and is convincing and the judge must have believed that he has magical powers, because my grand daughters are living with him. He doesn't even have a steady job, lives with his parents, and was abusive to my daughter during their marriage and all of that is documented.

The lawyers that we have had are out lawyered I guess. The symptoms are very vague in Hannah, easily can be seen as tantrums. Except for the developmental delays, ataxia, hand tremor. Those things are very apparent but who sees. The judge does not.

The doctors, I think I am repeating myself, when seeing Hannah for the first time asked my daughter what the symptoms were. She told of everything. They got all the records, 3 mri, eegs, cat scan, eye surgery, muscle biobsy. Took rebeccas acount of the way things are at home, were puzzled but interested. Then when contacted later by the father they every one decided that the tests were inconclusive, and they didn't see anything that the mom described so maybe the mom is nuts like the dad says. Not a one of them would stand by their earlier opinions. Then the court said no more doctors, dad accused my daughter of doctor shopping, so NO MORE DOCTORS. Mly daughter did manage to get in to see the geneticist in Little Rock and he did diagnose Hannah strictly from the previous tests because the father and the judge said NO MORE DOCTORS.

Now this geneticist who gave the confirmed diagnosis he can't get involved in a court battle. We had to wait in his lobby for 6 hours on the appointment day while he checked with his legal advisors and the court in Texas. Thank goodness he did see us. But he did not see the symptoms that the father says do not happen in his care. So the court said that Hannah will certainly be better in the environment where she doesn't suffer symptoms. At any time that my daughter lied and said that Hannah is cured and doesn't have symptoms with her either this would probable all just stop. But All that my daughter has been trying to do in the first place is get care for Hannah. She opened this can of worms by wanting a psyc eval for Hannah last October "03. Prior to that the battle had been over his not giving prescribed medications when Hannah was with him and ignoring her need for rest.

And that is where we are now. Even if I knew of a different attorney, and that attorney would take the case, even if I had the money, you can not image how much data there is to go thru. The medical records for discovery alone were 21 inches high. It is sad. No one involved even knows what mito is, except for my daughter and me.ilikemonstertrucks wrote:

Im so sorry for all this, it sounds like a nightmare for all of you. Im assuming your daughter has a lawyer, but honestly I would find another one... Your grandaughter has a confirmed diagnosis, and yet the father is somehow managing to convince the courts that its all in your daughters head? If you have medical documentation showing she is sick, and he is refusing to accept or treat it, and the courts are still siding with himg I dont think her lawyer is doing his job.Keely> Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

That's what I think too. But it is all we have right now. We do have the confirmed diagnosis. The judge got it from Little Rock 3 days before the last court date. But she was believing the fathers claim that Hannah is symptom free with him. "Magic" Not sick with him. I think the exact words were,"perfect, no problems except for behavior problems because her mother is permissive and has taught her to say she hurts when maybe she is just mad." He told the court that my daughter taught her the wrong words. He is really a dunce. But he smiles and is convincing and the judge must have believed that he has magical powers, because my grand daughters are living with him. He doesn't even have a steady job, lives with his parents, and was abusive to my daughter during their marriage and all of that is documented.

The lawyers that we have had are out lawyered I guess. The symptoms are very vague in Hannah, easily can be seen as tantrums. Except for the developmental delays, ataxia, hand tremor. Those things are very apparent but who sees. The judge does not.

The doctors, I think I am repeating myself, when seeing Hannah for the first time asked my daughter what the symptoms were. She told of everything. They got all the records, 3 mri, eegs, cat scan, eye surgery, muscle biobsy. Took rebeccas acount of the way things are at home, were puzzled but interested. Then when contacted later by the father they every one decided that the tests were inconclusive, and they didn't see anything that the mom described so maybe the mom is nuts like the dad says. Not a one of them would stand by their earlier opinions. Then the court said no more doctors, dad accused my daughter of doctor shopping, so NO MORE DOCTORS. Mly daughter did manage to get in to see the geneticist in Little Rock and he did diagnose Hannah strictly from the previous tests because the father and the judge said NO MORE DOCTORS.

Now this geneticist who gave the confirmed diagnosis he can't get involved in a court battle. We had to wait in his lobby for 6 hours on the appointment day while he checked with his legal advisors and the court in Texas. Thank goodness he did see us. But he did not see the symptoms that the father says do not happen in his care. So the court said that Hannah will certainly be better in the environment where she doesn't suffer symptoms. At any time that my daughter lied and said that Hannah is cured and doesn't have symptoms with her either this would probable all just stop. But All that my daughter has been trying to do in the first place is get care for Hannah. She opened this can of worms by wanting a psyc eval for Hannah last October "03. Prior to that the battle had been over his not giving prescribed medications when Hannah was with him and ignoring her need for rest.

And that is where we are now. Even if I knew of a different attorney, and that attorney would take the case, even if I had the money, you can not image how much data there is to go thru. The medical records for discovery alone were 21 inches high. It is sad. No one involved even knows what mito is, except for my daughter and me.ilikemonstertrucks wrote:

Im so sorry for all this, it sounds like a nightmare for all of you. Im assuming your daughter has a lawyer, but honestly I would find another one... Your grandaughter has a confirmed diagnosis, and yet the father is somehow managing to convince the courts that its all in your daughters head? If you have medical documentation showing she is sick, and he is refusing to accept or treat it, and the courts are still siding with himg I dont think her lawyer is doing his job.Keely> Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

My daughter sees Dr Bruce Cohen at the Cleveland Clinic in Ohio. I'm not sure he is seeing new patients already with a dianosis, though. You probally could find a doctor through the MDA. Most MDA docs are not too familiar with mito, but it is a start. I do know Dr. Cohen is in contact with our areas MDA docs alot, trying to familiarize them with the disease so there is more than one doctor in the area who can treat the disease.

Best wishes

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[Guest guest]

My daughter sees Dr Bruce Cohen at the Cleveland Clinic in Ohio. I'm not sure he is seeing new patients already with a dianosis, though. You probally could find a doctor through the MDA. Most MDA docs are not too familiar with mito, but it is a start. I do know Dr. Cohen is in contact with our areas MDA docs alot, trying to familiarize them with the disease so there is more than one doctor in the area who can treat the disease.

Best wishes

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