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pls elaborate, you mean she's stoic? orrr? & btw, 140 lbs is

fantastic.

lori h.

> ok heres the problem my wife had this sergery 6 months ago , or so

> she has lost over 140 lbs so far i am proud of her . but any ways

> heres the problem ... she says she has lost her emotions.. has any

> one gone through this .i was thinking its a hormonal thing but not

> sure . please help! my yahoo messanger is madmikerules if u could

> help me with this please free to message me thanks !

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  • 10 months later...
Guest guest

Hi , You sound like you are in very severe pain. Where are you

experiencing it and what is being done so far to help you deal with it?

Concerned, Ruth

_____

From: jonathan_pointer

Sent: Wednesday, June 02, 2004 12:23 PM

To:

Subject: help

i need to talk help

jon

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

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Guest guest

Shelby

I don't have much info for you, but wanted to welcome you to the group.

It sounds like you have your hands full. In case she is seen at Cleveland

Clinic, they are enrolling people with mito into a research group to

determine the different psychiatric symptoms seen in this group. I just

opened a letter from CCF.

laurie

>

> Reply-To:

> Date: Sat, 10 Jul 2004 21:28:14 -0000

> To:

> Subject: Help

>

> Hello,

> I am new at this group. I have a daughter who is 30 years old who has

> a clinical diagnosis of mitochondrial encephalopathy. She is

> developmentally delayed, has speech and motor problems and deteriorates

> cognitively, motor and behaviorally after viruses and infections. She

> periodically becomes psychotic, racing around the house, yelling,

> screaming, clapping her hands, and throwing things. She is on

> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

> and Eskalith for mood swings and the mito cocktail. Lately, in spite

> of the medication, she will have one of these " spells " following her

> monthly period or after several days of activity. Does anyone have any

> experience with this? She also has had a stroke like episode and has

> intestinal dysmotility and is mentally retarded (mental age 4-5 years

> on a good day)

> Thanks, Shelby

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

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Guest guest

Laurie,

was diagnosed by Dr. Kelley at the Kennedy Kreiger Center at

s Hopkins. She has only a clinical diagnosis. I would love to

know more about the research group at the Cleveland Clinic. Is this

research group only for persons diagnosed there? Would you send me a

copy of the letter to Shelby Hawthorne, 103 Sabre Drive, burg,

VA 23185.

Thanks, Shelby

> Shelby

>

> I don't have much info for you, but wanted to welcome you to the

> group.

>

> It sounds like you have your hands full. In case she is seen at

> Cleveland

> Clinic, they are enrolling people with mito into a research group to

> determine the different psychiatric symptoms seen in this group. I

> just

> opened a letter from CCF.

>

> laurie

>

> >

> > Reply-To:

> > Date: Sat, 10 Jul 2004 21:28:14 -0000

> > To:

> > Subject: Help

> >

> > Hello,

> > I am new at this group. I have a daughter who is 30 years old who

> has

> > a clinical diagnosis of mitochondrial encephalopathy. She is

> > developmentally delayed, has speech and motor problems and

> deteriorates

> > cognitively, motor and behaviorally after viruses and infections.

> She

> > periodically becomes psychotic, racing around the house, yelling,

> > screaming, clapping her hands, and throwing things. She is on

> > Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

> > and Eskalith for mood swings and the mito cocktail. Lately, in spite

> > of the medication, she will have one of these " spells " following her

> > monthly period or after several days of activity. Does anyone have

> any

> > experience with this? She also has had a stroke like episode and has

> > intestinal dysmotility and is mentally retarded (mental age 4-5

> years

> > on a good day)

> > Thanks, Shelby

> >

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

> contained herein

> > are not necessarily those of the list moderators. The author of

> this e mail is

> > entirely responsible for its content. List members are reminded of

> their

> > responsibility to evaluate the content of the postings and consult

> with their

> > physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who sends

> one is

> > automatically moderated or removed depending on the severity of the

> attack.

> >

> >

> >

> >

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Dear Shelby,

I am the mother of a 37 year old son with a mental age of 18 months to 2 years

depending on what he is being tested for. He was diagnosed with CP for many

years before his sister's biopsy was positive for Mito. His diagnosis since

then has changed to Mito. I can totally identify with your dilemma as my son

requires heavy medication to keep him from psychotic actions but these very

difficult actions have been happening since he was a young child and became self

destructive. In his case, the medication has been the only thing that helped

and brought him to a level that was somewhat within reason but this is not every

day and he's male so he's not dealing with the hormonal issues your daughter is

dealing with. He does take Buspar which seems to help.

I would first see if they are keeping a close watch on her sugar. Sometimes,

hypoglycemia causes this type of erratic behavior in some individuals,

especially those with a learning disability. I wish I could offer more help

because I know exactly how you are feeling. We'll just have to keep trying.

Welcome to Mitoldies.

Alice

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Shelby

This research is only for people already being seen at the Cleveland Clinic.

It seems to be a joint project between neurology and psychiatry.

I'm sorry this won't help you.

laurie

>

> Reply-To:

> Date: Sat, 10 Jul 2004 21:01:52 -0400

> To:

> Subject: Re: Help

>

> Laurie,

> was diagnosed by Dr. Kelley at the Kennedy Kreiger Center at

> s Hopkins. She has only a clinical diagnosis. I would love to

> know more about the research group at the Cleveland Clinic. Is this

> research group only for persons diagnosed there? Would you send me a

> copy of the letter to Shelby Hawthorne, 103 Sabre Drive, burg,

> VA 23185.

> Thanks, Shelby

>

>

>> Shelby

>>

>> I don't have much info for you, but wanted to welcome you to the

>> group.

>>

>> It sounds like you have your hands full. In case she is seen at

>> Cleveland

>> Clinic, they are enrolling people with mito into a research group to

>> determine the different psychiatric symptoms seen in this group. I

>> just

>> opened a letter from CCF.

>>

>> laurie

>>

>>>

>>> Reply-To:

>>> Date: Sat, 10 Jul 2004 21:28:14 -0000

>>> To:

>>> Subject: Help

>>>

>>> Hello,

>>> I am new at this group. I have a daughter who is 30 years old who

>> has

>>> a clinical diagnosis of mitochondrial encephalopathy. She is

>>> developmentally delayed, has speech and motor problems and

>> deteriorates

>>> cognitively, motor and behaviorally after viruses and infections.

>> She

>>> periodically becomes psychotic, racing around the house, yelling,

>>> screaming, clapping her hands, and throwing things. She is on

>>> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

>>> and Eskalith for mood swings and the mito cocktail. Lately, in spite

>>> of the medication, she will have one of these " spells " following her

>>> monthly period or after several days of activity. Does anyone have

>> any

>>> experience with this? She also has had a stroke like episode and has

>>> intestinal dysmotility and is mentally retarded (mental age 4-5

>> years

>>> on a good day)

>>> Thanks, Shelby

>>>

>>>

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

>> contained herein

>>> are not necessarily those of the list moderators. The author of

>> this e mail is

>>> entirely responsible for its content. List members are reminded of

>> their

>>> responsibility to evaluate the content of the postings and consult

>> with their

>>> physicians regarding changes in their own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone who sends

>> one is

>>> automatically moderated or removed depending on the severity of the

>> attack.

>>>

>>>

>>>

>>>

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Guest guest

Dear Alice,

What is your son taking besides Buspar? Anything?

Thanks for responding.

Shelby

> Dear Shelby,

>

> I am the mother of a 37 year old son with a mental age of 18 months

> to 2 years depending on what he is being tested for.  He was diagnosed

> with CP for many years before his sister's biopsy was positive for

> Mito.  His diagnosis since then has changed to Mito.  I can totally

> identify with your dilemma as my son requires heavy medication to keep

> him from psychotic actions but these very difficult actions have been

> happening since he was a young child and became self destructive.  In

> his case, the medication has been the only thing that helped and

> brought him to a level that was somewhat within reason but this is not

> every day and he's male so he's not dealing with the hormonal issues

> your daughter is dealing with.   He does take Buspar which seems to

> help.

>

> I would first see if they are keeping a close watch on her sugar. 

> Sometimes, hypoglycemia causes this type of erratic behavior in some

> individuals, especially those with a learning disability.  I wish I

> could offer more help because I know exactly how you are feeling. 

> We'll just have to keep trying.

>

> Welcome to Mitoldies.

>

> Alice

>

>

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Guest guest

Holding one's ears and racing around the house sounds more like a

central auditory processing (CAP) disorder than psychosis to me. Has

she had central auditory processing testing?

Here in NJ, there is an expert on the testing and therapy for CAP

disorders. My nephew, who is diagnosed as autistic and has many of

the same behaviors you list, just got his central auditory processing

testing done, and he failed ALL areas they test.

It might be worth a look - my son, who has attention problems in

school, has a mild CAP disorder, and his classroom environment will

be changed significantly to accommodate his disability.

The therapy for a more severe CAP disorder like my nephew's is to

wear headphones for 8 to 10 minutes per day with an individually

designed listening programs - sounds likes the ocean or just

different tones. This helps " reprogram " the brain to tolerate

outside noises. I am struck by the similarities between my nephew

(age 10, but probably functions as a 4 year old) and your daughter.

A question - do they consider the running up and down stairs a

psychotic behavior? These sound so much like sensory integration

issues...

Take care,

RH

> Hello,

> I am new at this group. I have a daughter who is 30 years old who

has

> a clinical diagnosis of mitochondrial encephalopathy. She is

> developmentally delayed, has speech and motor problems and

deteriorates

> cognitively, motor and behaviorally after viruses and infections.

She

> periodically becomes psychotic, racing around the house, yelling,

> screaming, clapping her hands, and throwing things. She is on

> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

> and Eskalith for mood swings and the mito cocktail. Lately, in spite

> of the medication, she will have one of these " spells " following her

> monthly period or after several days of activity. Does anyone have

any

> experience with this? She also has had a stroke like episode and has

> intestinal dysmotility and is mentally retarded (mental age 4-5

years

> on a good day)

> Thanks, Shelby

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Guest guest

Thanks for your reply. We had our daughter tested for autism several

years ago at Project Teaach at the University of North Carolina, Chapel

Hill. She has some autistic tendencies but the team said she does not

have autism. They even consulted with Lorna Wing an autism expert in

England. They found unusual but not autistic. After autism

spectrum disorders were identified I called Dr. Mesabolf and asked if

would fit that diagnosis. He said no. only has the

psychosis when she in in " crisis " .

I will speak to her neurologist about central auditory processing

disorder. At times 's hearing seems especially acute, other times

you would think she was deaf. Does your nephew have these

characteristics? Does your nephew have a mito disease? How does his

family deal with his behaviors?

does have sensory integration issues.

Thanks for your help. Shelby

> Holding one's ears and racing around the house sounds more like a

> central auditory processing (CAP) disorder than psychosis to me.  Has

> she had central auditory processing testing?

>

> Here in NJ, there is an expert on the testing and therapy for CAP

> disorders.  My nephew, who is diagnosed as autistic and has many of

> the same behaviors you list, just got his central auditory processing

> testing done, and he failed ALL areas they test.

>

> It might be worth a look - my son, who has attention problems in

> school, has a mild CAP disorder, and his classroom environment will

> be changed significantly to accommodate his disability.

>

> The therapy for a more severe CAP disorder like my nephew's is to

> wear headphones for 8 to 10 minutes per day with an individually

> designed listening programs - sounds likes the ocean or just

> different tones.  This helps " reprogram " the brain to tolerate

> outside noises.  I am struck by the similarities between my nephew

> (age 10, but probably functions as a 4 year old) and your daughter. 

>

> A question - do they consider the running up and down stairs a

> psychotic behavior?  These sound so much like sensory integration

> issues...

>

> Take care,

> RH

>

>

>

>

> > Hello,

> > I am new at this group. I have a daughter who is 30 years old who

> has

> > a clinical diagnosis of mitochondrial encephalopathy. She is

> > developmentally delayed, has speech and motor problems and

> deteriorates

> > cognitively, motor and behaviorally after viruses and infections.

> She

> > periodically becomes psychotic, racing around the house, yelling,

> > screaming, clapping her hands, and throwing things. She is on

> > Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

> > and Eskalith for mood swings and the mito cocktail. Lately, in spite

> > of the medication, she will have one of these " spells " following her

> > monthly period or after several days of activity. Does anyone have

> any

> > experience with this? She also has had a stroke like episode and has

> > intestinal dysmotility and is mentally retarded (mental age 4-5

> years

> > on a good day)

> > Thanks, Shelby

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

>

>

>

>

>

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Guest guest

Alice,

What type of mito does your son and daughter have? Where were they

diagnosed?

Does your son live at home? Do you have help taking care of him?

> Dear Shelby,

>

> I am the mother of a 37 year old son with a mental age of 18 months

> to 2 years depending on what he is being tested for.  He was diagnosed

> with CP for many years before his sister's biopsy was positive for

> Mito.  His diagnosis since then has changed to Mito.  I can totally

> identify with your dilemma as my son requires heavy medication to keep

> him from psychotic actions but these very difficult actions have been

> happening since he was a young child and became self destructive.  In

> his case, the medication has been the only thing that helped and

> brought him to a level that was somewhat within reason but this is not

> every day and he's male so he's not dealing with the hormonal issues

> your daughter is dealing with.   He does take Buspar which seems to

> help.

>

> I would first see if they are keeping a close watch on her sugar. 

> Sometimes, hypoglycemia causes this type of erratic behavior in some

> individuals, especially those with a learning disability.  I wish I

> could offer more help because I know exactly how you are feeling. 

> We'll just have to keep trying.

>

> Welcome to Mitoldies.

>

> Alice

>

>

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Guest guest

My daughter, now 14, had mild CAPD issues when she was younger. The

schools wanted her tested for ADD/ADHD. We had her tested outside the

school setting and was told she did NOT have ADD. The CAPD issues

improved when she started on the COQ10 and Carnitor, but are still

issues at times when she is tired or ill. If the brain doesn't have

enough energy to work properly, it is hard to concentrate. One of the

first signs of possible CAPD I was informed was if the person if given a

list of things to do, even as little as 3 things, it is quite common for

the person to remember either the first or last instruction given, but

not all of them.

Good luck, not many knew about CAPD around here when my daughter was

younger. I hope there is more awareness now.

william hawthorne wrote:

>Thanks for your reply. We had our daughter tested for autism several

>years ago at Project Teaach at the University of North Carolina, Chapel

>Hill. She has some autistic tendencies but the team said she does not

>have autism. They even consulted with Lorna Wing an autism expert in

>England. They found unusual but not autistic. After autism

>spectrum disorders were identified I called Dr. Mesabolf and asked if

> would fit that diagnosis. He said no. only has the

>psychosis when she in in " crisis " .

>

>I will speak to her neurologist about central auditory processing

>disorder. At times 's hearing seems especially acute, other times

>you would think she was deaf. Does your nephew have these

>characteristics? Does your nephew have a mito disease? How does his

>family deal with his behaviors?

>

> does have sensory integration issues.

>

>Thanks for your help. Shelby

>

>

>

>

>

>>Holding one's ears and racing around the house sounds more like a

>> central auditory processing (CAP) disorder than psychosis to me. Has

>> she had central auditory processing testing?

>>

>> Here in NJ, there is an expert on the testing and therapy for CAP

>> disorders. My nephew, who is diagnosed as autistic and has many of

>> the same behaviors you list, just got his central auditory processing

>> testing done, and he failed ALL areas they test.

>>

>> It might be worth a look - my son, who has attention problems in

>> school, has a mild CAP disorder, and his classroom environment will

>> be changed significantly to accommodate his disability.

>>

>> The therapy for a more severe CAP disorder like my nephew's is to

>> wear headphones for 8 to 10 minutes per day with an individually

>> designed listening programs - sounds likes the ocean or just

>> different tones. This helps " reprogram " the brain to tolerate

>> outside noises. I am struck by the similarities between my nephew

>> (age 10, but probably functions as a 4 year old) and your daughter.

>>

>> A question - do they consider the running up and down stairs a

>> psychotic behavior? These sound so much like sensory integration

>> issues...

>>

>> Take care,

>> RH

>>

>>

>>

>>

>> > Hello,

>> > I am new at this group. I have a daughter who is 30 years old who

>> has

>> > a clinical diagnosis of mitochondrial encephalopathy. She is

>> > developmentally delayed, has speech and motor problems and

>> deteriorates

>> > cognitively, motor and behaviorally after viruses and infections.

>> She

>> > periodically becomes psychotic, racing around the house, yelling,

>> > screaming, clapping her hands, and throwing things. She is on

>> > Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

>> > and Eskalith for mood swings and the mito cocktail. Lately, in spite

>> > of the medication, she will have one of these " spells " following her

>> > monthly period or after several days of activity. Does anyone have

>> any

>> > experience with this? She also has had a stroke like episode and has

>> > intestinal dysmotility and is mentally retarded (mental age 4-5

>> years

>> > on a good day)

>> > Thanks, Shelby

>>

>>

>>

>>Medical advice, information, opinions, data and statements contained

>>herein are not necessarily those of the list moderators. The author of

>>this e mail is entirely responsible for its content. List members are

>>reminded of their responsibility to evaluate the content of the

>>postings and consult with their physicians regarding changes in their

>>own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends

>>one is automatically moderated or removed depending on the severity of

>>the attack.

>>

>>

>>

>>

>>

>>

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Guest guest

Kev takes Depakote for seizures (not recommended for a Mito patient but we found

out too late and now it would be more dangerous to him to take him off of it).

He also takes Klonopin. Other than that, he is on only allergy meds. Buspar is

used as needed in 's case, on those very bad days.

Alice

Dear Alice,

What is your son taking besides Buspar? Anything?

Thanks for responding.

Shelby

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Guest guest

Shelby,

sounds very much like . He was diagnosed with autism when he was a

young child by one doctor but this was later changed to " autistic like " . He can

present the picture of being deaf at times, but he isn't. There was a time when

another doctor said he had " cortical " deafness but his most recent records

indicate no deafness yet sign language seems to be more agreeable to him. We

have to get down on an eye to eye level with him or we lose his attention.

has sensory integration issues.

This is a very difficult parenting issue. It's one of those walk in my shoes

things and seems as if it's always changing. I spent years trying to find a

" cure " for . There was none and there still is none. I long to be able to

talk to him as he has no ability to communicate other than his aggressive

actions. It was easier to communicate when he was little but his cognitive

abilities have decreased over the years. I often wonder if carnitor would have

helped him when he was small but doubt that it could do much of anything now and

the doctors agree with me. He was just born a little too early to get this type

of help but B vitamins were successful with him when he was small. The doctors

told me that he had become " immune " to them (they called them mega vitamins) and

they were afraid to up the doses because at the time it was purely experimental

and they didn't know what raising them would do so they took him off them. Of

course, now we know that he could have had more as he gained weight. As soon as

he went off them, he immediately regressed. We tried to put him back on the B

vitamins and CoQ a couple of years ago. He became so aggressive that he was

uncontrollable. He's just better to be left alone now.

There are just so many very difficult emotions to deal with when you have a

child like this and a very difficult feeling of helplessness. I'm so sorry you

know the feeling.

Alice

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Guest guest

Because of the self abusive behavior, now lives in a group home with

others who are like him. He has done much better since he doesn't have to deal

with " normal " life. He has friends that he lives with and the goes to other

group homes for special events but not noisy ones, because he can't tolerate

change or busy activity. He prefers to stay home from those activities.

We do not know what kind of Mito we have. We have multiple family members

diagnosed. My daughter got her biopsy and diagnosis in Atlanta. Her 3 children

were diagnosed in Cleveland by Dr Bruce Cohen. I was diagnosed by Dr Bruce

Cohen in Cleveland. My other daughter and her 4 children were diagnosed in

Cleveland by Dr Bruce Cohen. was diagnosed by the MDA doctor in

Providence, RI because he couldn't travel to Cleveland to see Dr Cohen. We are

told that has the most severe form of the disease in our family and a

biopsy on him would be ideal but anesthesia for him could be fatal and you

couldn't control him to do a biopsy without heavy sedation so we have decided

against it. Instead, we will opt for a liver biopsy when he leaves this life

because this may be our only opportunity to find out what kind of Mito we have.

I am far to ill with the disease myself to take care of at home now so the

placement for him is a good one.

Alice

Re: Help

Alice,

What type of mito does your son and daughter have? Where were they

diagnosed?

Does your son live at home? Do you have help taking care of him?

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Guest guest

There must be as we have 6 students in our small school district using sound

systems for CAPD and several that aren't but getting special education for a

learning disability.

laurie

>

> Reply-To:

> Date: Sun, 11 Jul 2004 09:22:30 -0700

> To:

> Subject: Re: Re: Help

>

> My daughter, now 14, had mild CAPD issues when she was younger. The

> schools wanted her tested for ADD/ADHD. We had her tested outside the

> school setting and was told she did NOT have ADD. The CAPD issues

> improved when she started on the COQ10 and Carnitor, but are still

> issues at times when she is tired or ill. If the brain doesn't have

> enough energy to work properly, it is hard to concentrate. One of the

> first signs of possible CAPD I was informed was if the person if given a

> list of things to do, even as little as 3 things, it is quite common for

> the person to remember either the first or last instruction given, but

> not all of them.

>

> Good luck, not many knew about CAPD around here when my daughter was

> younger. I hope there is more awareness now.

>

>

>

> william hawthorne wrote:

>

>> Thanks for your reply. We had our daughter tested for autism several

>> years ago at Project Teaach at the University of North Carolina, Chapel

>> Hill. She has some autistic tendencies but the team said she does not

>> have autism. They even consulted with Lorna Wing an autism expert in

>> England. They found unusual but not autistic. After autism

>> spectrum disorders were identified I called Dr. Mesabolf and asked if

>> would fit that diagnosis. He said no. only has the

>> psychosis when she in in " crisis " .

>>

>> I will speak to her neurologist about central auditory processing

>> disorder. At times 's hearing seems especially acute, other times

>> you would think she was deaf. Does your nephew have these

>> characteristics? Does your nephew have a mito disease? How does his

>> family deal with his behaviors?

>>

>> does have sensory integration issues.

>>

>> Thanks for your help. Shelby

>>

>>

>>

>>

>>

>>> Holding one's ears and racing around the house sounds more like a

>>> central auditory processing (CAP) disorder than psychosis to me. Has

>>> she had central auditory processing testing?

>>>

>>> Here in NJ, there is an expert on the testing and therapy for CAP

>>> disorders. My nephew, who is diagnosed as autistic and has many of

>>> the same behaviors you list, just got his central auditory processing

>>> testing done, and he failed ALL areas they test.

>>>

>>> It might be worth a look - my son, who has attention problems in

>>> school, has a mild CAP disorder, and his classroom environment will

>>> be changed significantly to accommodate his disability.

>>>

>>> The therapy for a more severe CAP disorder like my nephew's is to

>>> wear headphones for 8 to 10 minutes per day with an individually

>>> designed listening programs - sounds likes the ocean or just

>>> different tones. This helps " reprogram " the brain to tolerate

>>> outside noises. I am struck by the similarities between my nephew

>>> (age 10, but probably functions as a 4 year old) and your daughter.

>>>

>>> A question - do they consider the running up and down stairs a

>>> psychotic behavior? These sound so much like sensory integration

>>> issues...

>>>

>>> Take care,

>>> RH

>>>

>>>

>>>

>>>

>>>> Hello,

>>>> I am new at this group. I have a daughter who is 30 years old who

>>> has

>>>> a clinical diagnosis of mitochondrial encephalopathy. She is

>>>> developmentally delayed, has speech and motor problems and

>>> deteriorates

>>>> cognitively, motor and behaviorally after viruses and infections.

>>> She

>>>> periodically becomes psychotic, racing around the house, yelling,

>>>> screaming, clapping her hands, and throwing things. She is on

>>>> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

>>>> and Eskalith for mood swings and the mito cocktail. Lately, in spite

>>>> of the medication, she will have one of these " spells " following her

>>>> monthly period or after several days of activity. Does anyone have

>>> any

>>>> experience with this? She also has had a stroke like episode and has

>>>> intestinal dysmotility and is mentally retarded (mental age 4-5

>>> years

>>>> on a good day)

>>>> Thanks, Shelby

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements contained

>>> herein are not necessarily those of the list moderators. The author of

>>> this e mail is entirely responsible for its content. List members are

>>> reminded of their responsibility to evaluate the content of the

>>> postings and consult with their physicians regarding changes in their

>>> own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone who sends

>>> one is automatically moderated or removed depending on the severity of

>>> the attack.

>>>

>>>

>>>

>>>

>>>

>>>

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Shelby

My younger son who I mentioned before still has sensory issues at 30, but

finds ways to deal because he is bright. He still can't stand rock concerts

or anything real noisy.

My hearing and vision both fluctuate depending on how fatiqued I am. Might

that be true with ?

laurie

>

> Reply-To:

> Date: Sun, 11 Jul 2004 12:12:37 -0400

> To:

> Subject: Re: Re: Help

>

> Thanks for your reply. We had our daughter tested for autism several

> years ago at Project Teaach at the University of North Carolina, Chapel

> Hill. She has some autistic tendencies but the team said she does not

> have autism. They even consulted with Lorna Wing an autism expert in

> England. They found unusual but not autistic. After autism

> spectrum disorders were identified I called Dr. Mesabolf and asked if

> would fit that diagnosis. He said no. only has the

> psychosis when she in in " crisis " .

>

> I will speak to her neurologist about central auditory processing

> disorder. At times 's hearing seems especially acute, other times

> you would think she was deaf. Does your nephew have these

> characteristics? Does your nephew have a mito disease? How does his

> family deal with his behaviors?

>

> does have sensory integration issues.

>

> Thanks for your help. Shelby

>

>

>

>> Holding one's ears and racing around the house sounds more like a

>> central auditory processing (CAP) disorder than psychosis to me.  Has

>> she had central auditory processing testing?

>>

>> Here in NJ, there is an expert on the testing and therapy for CAP

>> disorders.  My nephew, who is diagnosed as autistic and has many of

>> the same behaviors you list, just got his central auditory processing

>> testing done, and he failed ALL areas they test.

>>

>> It might be worth a look - my son, who has attention problems in

>> school, has a mild CAP disorder, and his classroom environment will

>> be changed significantly to accommodate his disability.

>>

>> The therapy for a more severe CAP disorder like my nephew's is to

>> wear headphones for 8 to 10 minutes per day with an individually

>> designed listening programs - sounds likes the ocean or just

>> different tones.  This helps " reprogram " the brain to tolerate

>> outside noises.  I am struck by the similarities between my nephew

>> (age 10, but probably functions as a 4 year old) and your daughter. 

>>

>> A question - do they consider the running up and down stairs a

>> psychotic behavior?  These sound so much like sensory integration

>> issues...

>>

>> Take care,

>> RH

>>

>>

>>

>>

>>> Hello,

>>> I am new at this group. I have a daughter who is 30 years old who

>> has

>>> a clinical diagnosis of mitochondrial encephalopathy. She is

>>> developmentally delayed, has speech and motor problems and

>> deteriorates

>>> cognitively, motor and behaviorally after viruses and infections.

>> She

>>> periodically becomes psychotic, racing around the house, yelling,

>>> screaming, clapping her hands, and throwing things. She is on

>>> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for sleep

>>> and Eskalith for mood swings and the mito cocktail. Lately, in spite

>>> of the medication, she will have one of these " spells " following her

>>> monthly period or after several days of activity. Does anyone have

>> any

>>> experience with this? She also has had a stroke like episode and has

>>> intestinal dysmotility and is mentally retarded (mental age 4-5

>> years

>>> on a good day)

>>> Thanks, Shelby

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained

>> herein are not necessarily those of the list moderators. The author of

>> this e mail is entirely responsible for its content. List members are

>> reminded of their responsibility to evaluate the content of the

>> postings and consult with their physicians regarding changes in their

>> own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends

>> one is automatically moderated or removed depending on the severity of

>> the attack.

>>

>>

>>

>>

>>

>>

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Guest guest

Laurie,

You may have hit on something here. could not stand popping

balloons or fire sirens or motor cycles when she was younger. She has

gotten better about it lately. She would not go to ARC activities such

as basketball because the noise was too much. I'll discuss this with

her neurologist.

Thanks, Shelby

> Shelby

>

> My younger son who I mentioned before still has sensory issues at 30,

> but

> finds ways to deal because he is bright. He still can't stand rock

> concerts

> or anything real noisy.

>

> My hearing and vision both fluctuate depending on how fatiqued I am.

> Might

> that be true with ?

>

> laurie

>

> >

> > Reply-To:

> > Date: Sun, 11 Jul 2004 12:12:37 -0400

> > To:

> > Subject: Re: Re: Help

> >

> > Thanks for your reply.  We had our daughter tested for autism

> several

> > years ago at Project Teaach at the University of North Carolina,

> Chapel

> > Hill.  She has some autistic tendencies but the team said she does

> not

> > have autism.  They even consulted with Lorna Wing an autism expert

> in

> > England.  They found unusual but not autistic.  After autism

> > spectrum disorders were identified I called Dr. Mesabolf and asked

> if

> > would fit that diagnosis.  He said no.  only has the

> > psychosis when she in in " crisis " .

> >

> > I will speak to her neurologist about central auditory processing

> > disorder.  At times 's hearing seems especially acute, other

> times

> > you would think she was deaf.  Does your nephew have these

> > characteristics?  Does your nephew have a mito disease?  How does

> his

> > family deal with his behaviors?

> >

> > does have sensory integration issues.

> >

> > Thanks for your help.  Shelby

> >

> >

> >

> >> Holding one's ears and racing around the house sounds more like a

> >> central auditory processing (CAP) disorder than psychosis to me. 

> Has

> >> she had central auditory processing testing?

> >>

> >> Here in NJ, there is an expert on the testing and therapy for CAP

> >> disorders.  My nephew, who is diagnosed as autistic and has many of

> >> the same behaviors you list, just got his central auditory

> processing

> >> testing done, and he failed ALL areas they test.

> >>

> >> It might be worth a look - my son, who has attention problems in

> >> school, has a mild CAP disorder, and his classroom environment will

> >> be changed significantly to accommodate his disability.

> >>

> >> The therapy for a more severe CAP disorder like my nephew's is to

> >> wear headphones for 8 to 10 minutes per day with an individually

> >> designed listening programs - sounds likes the ocean or just

> >> different tones.  This helps " reprogram " the brain to tolerate

> >> outside noises.  I am struck by the similarities between my nephew

> >> (age 10, but probably functions as a 4 year old) and your

> daughter. 

> >>

> >> A question - do they consider the running up and down stairs a

> >> psychotic behavior?  These sound so much like sensory integration

> >> issues...

> >>

> >> Take care,

> >> RH

> >>

> >>

> >>

> >>

> >>> Hello,

> >>> I am new at this group. I have a daughter who is 30 years old who

> >> has

> >>> a clinical diagnosis of mitochondrial encephalopathy. She is

> >>> developmentally delayed, has speech and motor problems and

> >> deteriorates

> >>> cognitively, motor and behaviorally after viruses and infections.

> >> She

> >>> periodically becomes psychotic, racing around the house, yelling,

> >>> screaming, clapping her hands, and throwing things. She is on

> >>> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for

> sleep

> >>> and Eskalith for mood swings and the mito cocktail. Lately, in

> spite

> >>> of the medication, she will have one of these " spells " following

> her

> >>> monthly period or after several days of activity. Does anyone have

> >> any

> >>> experience with this? She also has had a stroke like episode and

> has

> >>> intestinal dysmotility and is mentally retarded (mental age 4-5

> >> years

> >>> on a good day)

> >>> Thanks, Shelby

> >>

> >>

> >>

> >> Medical advice, information, opinions, data and statements

> contained

> >> herein are not necessarily those of the list moderators. The

> author of

> >> this e mail is entirely responsible for its content. List members

> are

> >> reminded of their responsibility to evaluate the content of the

> >> postings and consult with their physicians regarding changes in

> their

> >> own treatment.

> >>

> >> Personal attacks are not permitted on the list and anyone who sends

> >> one is automatically moderated or removed depending on the

> severity of

> >> the attack.

> >>

> >>

> >>

> >>

> >>

> >>

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Alice,

It sounds like we have some similar issues. had limited language

until age 4. She was approved for an electronic speaking device and

suddenly started talking. Obviously we sent the speaking device back.

She has had years of speech therapy. I too took her everywhere trying

to figure out what was wrong so we could " fix it " . She has had

diagnoses of cerebellar hypoplasia, acute intermittant porphyria, a

strange thyroid disease, and homocystinuria. Mental health wise she

has had the diagnoses of bipolar disorder, schizophrenia,

scizoaffective disorder and atypical psychosis and autism. At any

given time when that doctor was looking we might have agreed with the

diagnosis. However, most of these diagnosis last for a life time and

's symptoms came and went.

For years she swam with Special Olympics. Just three years ago she

worked as a volunteer at the public library hanging children's books on

tape. She had this job for nine years. In school she took two years

of high school math and made B's on her own steam. She never got

further than second grade reading. She can do none of those things

now. It is sad.

As my husband and I get older it is more difficult to manage. We have

wondered about whether we would have to find some other living

arrangement for . In this area there are not a lot of options that

are suitable. Her case manager with the CSB has suggested a nursing

home but her neurologist does not think that will be a good fit.

Thanks so much for listening. That helps a lot. It is sometimes

lonely being 's mom. I know few people who have walked this path.

Shelby

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My daughter also had a great deal of trouble with loud sounds. She was

10 before we could take her to the fireworks without her being in tears.

william hawthorne wrote:

>Laurie,

> You may have hit on something here. could not stand popping

>balloons or fire sirens or motor cycles when she was younger. She has

>gotten better about it lately. She would not go to ARC activities such

>as basketball because the noise was too much. I'll discuss this with

>her neurologist.

> Thanks, Shelby

>

>

>

>

>

>>Shelby

>>

>> My younger son who I mentioned before still has sensory issues at 30,

>>but

>> finds ways to deal because he is bright. He still can't stand rock

>>concerts

>> or anything real noisy.

>>

>> My hearing and vision both fluctuate depending on how fatiqued I am.

>>Might

>> that be true with ?

>>

>> laurie

>>

>> >

>> > Reply-To:

>> > Date: Sun, 11 Jul 2004 12:12:37 -0400

>> > To:

>> > Subject: Re: Re: Help

>> >

>> > Thanks for your reply. We had our daughter tested for autism

>>several

>> > years ago at Project Teaach at the University of North Carolina,

>>Chapel

>> > Hill. She has some autistic tendencies but the team said she does

>>not

>> > have autism. They even consulted with Lorna Wing an autism expert

>>in

>> > England. They found unusual but not autistic. After autism

>> > spectrum disorders were identified I called Dr. Mesabolf and asked

>>if

>> > would fit that diagnosis. He said no. only has the

>> > psychosis when she in in " crisis " .

>> >

>> > I will speak to her neurologist about central auditory processing

>> > disorder. At times 's hearing seems especially acute, other

>>times

>> > you would think she was deaf. Does your nephew have these

>> > characteristics? Does your nephew have a mito disease? How does

>>his

>> > family deal with his behaviors?

>> >

>> > does have sensory integration issues.

>> >

>> > Thanks for your help. Shelby

>> >

>> >

>> >

>> >> Holding one's ears and racing around the house sounds more like a

>> >> central auditory processing (CAP) disorder than psychosis to me.

>>Has

>> >> she had central auditory processing testing?

>> >>

>> >> Here in NJ, there is an expert on the testing and therapy for CAP

>> >> disorders. My nephew, who is diagnosed as autistic and has many of

>> >> the same behaviors you list, just got his central auditory

>>processing

>> >> testing done, and he failed ALL areas they test.

>> >>

>> >> It might be worth a look - my son, who has attention problems in

>> >> school, has a mild CAP disorder, and his classroom environment will

>> >> be changed significantly to accommodate his disability.

>> >>

>> >> The therapy for a more severe CAP disorder like my nephew's is to

>> >> wear headphones for 8 to 10 minutes per day with an individually

>> >> designed listening programs - sounds likes the ocean or just

>> >> different tones. This helps " reprogram " the brain to tolerate

>> >> outside noises. I am struck by the similarities between my nephew

>> >> (age 10, but probably functions as a 4 year old) and your

>>daughter.

>> >>

>> >> A question - do they consider the running up and down stairs a

>> >> psychotic behavior? These sound so much like sensory integration

>> >> issues...

>> >>

>> >> Take care,

>> >> RH

>> >>

>> >>

>> >>

>> >>

>> >>> Hello,

>> >>> I am new at this group. I have a daughter who is 30 years old who

>> >> has

>> >>> a clinical diagnosis of mitochondrial encephalopathy. She is

>> >>> developmentally delayed, has speech and motor problems and

>> >> deteriorates

>> >>> cognitively, motor and behaviorally after viruses and infections.

>> >> She

>> >>> periodically becomes psychotic, racing around the house, yelling,

>> >>> screaming, clapping her hands, and throwing things. She is on

>> >>> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for

>>sleep

>> >>> and Eskalith for mood swings and the mito cocktail. Lately, in

>>spite

>> >>> of the medication, she will have one of these " spells " following

>>her

>> >>> monthly period or after several days of activity. Does anyone have

>> >> any

>> >>> experience with this? She also has had a stroke like episode and

>>has

>> >>> intestinal dysmotility and is mentally retarded (mental age 4-5

>> >> years

>> >>> on a good day)

>> >>> Thanks, Shelby

>> >>

>> >>

>> >>

>> >> Medical advice, information, opinions, data and statements

>>contained

>> >> herein are not necessarily those of the list moderators. The

>>author of

>> >> this e mail is entirely responsible for its content. List members

>>are

>> >> reminded of their responsibility to evaluate the content of the

>> >> postings and consult with their physicians regarding changes in

>>their

>> >> own treatment.

>> >>

>> >> Personal attacks are not permitted on the list and anyone who sends

>> >> one is automatically moderated or removed depending on the

>>severity of

>> >> the attack.

>> >>

>> >>

>> >>

>> >>

>> >>

>> >>

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Guest guest

> only has the psychosis when she in in " crisis " .

My nephew definitely shows more behaviors (running up and down stairs

*constantly* and screeching, etc.) when under stress, and in noisy

environments.

> I will speak to her neurologist about central auditory processing

> disorder. At times 's hearing seems especially acute, other

> times you would think she was deaf. Does your nephew have these

> characteristics?

Yes, and there was a thread in this group about " painful hearing " - I

forget the word, but someone will help me out I hope. Noises

actually hurt, not even just loud ones. I could not talk on the

phone using one ear when I had this problem.

My son has intermittent hearing loss, due to fluid in the ears, and

also mild CAPD. So we really never know what he hears, just have to

keep repeating instructions and have him repeat it back. For my

younger son, we ask him to get a specific toy to check his hearing.

> Does your nephew have a mito disease?

I think so, but probably an autoimmune cause. Both my and my sister-

in-law's families have autoimmune issues, like diabetes, thyroid,

lupus, etc. My family is not into getting tested for mitochondrial

disease, and I personally don't have the genetic results for them to

just do a blood test against.

> How does his family deal with his behaviors?

They just either let him work it out (which could be hours and hours,

including locking him in his room if he gets too upset). Or, they

have a few tasks that are his favorites, like coloring his Mickey

Mouse coloring book. If they can shift his focus a bit, sometimes

that works. But usually, like at family events, he just keeps

running up and down the stairs at my dad's house - luckily it is a

split level.

Only now they are getting some improvement due to the CAPD sound

therapy. They are away at the moment, but I'll talk to my brother

when they are back to get an update on how the sound therapy is

working.

> does have sensory integration issues.

Is she getting therapy for that? My younger son has been helped by

therapy for sensory integration issues, but isn't 100% cured of them.

> Thanks for your help. Shelby

No problem, it is difficult trying to get answers for these type

things. My friend's brother is 35 and has some similar issues, and

his parents stopped taking him to doctors at age 10. He never had

therapy, and I think nowadays, there are a lot more choices and ways

to improve symptoms, or at least make them occur less often.

Take care,

RH

>

>

>

> > Holding one's ears and racing around the house sounds more like a

> > central auditory processing (CAP) disorder than psychosis to

me.  Has

> > she had central auditory processing testing?

> >

> > Here in NJ, there is an expert on the testing and therapy for CAP

> > disorders.  My nephew, who is diagnosed as autistic and has many

of

> > the same behaviors you list, just got his central auditory

processing

> > testing done, and he failed ALL areas they test.

> >

> > It might be worth a look - my son, who has attention problems in

> > school, has a mild CAP disorder, and his classroom environment

will

> > be changed significantly to accommodate his disability.

> >

> > The therapy for a more severe CAP disorder like my nephew's is to

> > wear headphones for 8 to 10 minutes per day with an individually

> > designed listening programs - sounds likes the ocean or just

> > different tones.  This helps " reprogram " the brain to tolerate

> > outside noises.  I am struck by the similarities between my

nephew

> > (age 10, but probably functions as a 4 year old) and your

daughter. 

> >

> > A question - do they consider the running up and down stairs a

> > psychotic behavior?  These sound so much like sensory integration

> > issues...

> >

> > Take care,

> > RH

> >

> >

> >

> >

> > > Hello,

> > > I am new at this group. I have a daughter who is 30 years old

who

> > has

> > > a clinical diagnosis of mitochondrial encephalopathy. She is

> > > developmentally delayed, has speech and motor problems and

> > deteriorates

> > > cognitively, motor and behaviorally after viruses and

infections.

> > She

> > > periodically becomes psychotic, racing around the house,

yelling,

> > > screaming, clapping her hands, and throwing things. She is on

> > > Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for

sleep

> > > and Eskalith for mood swings and the mito cocktail. Lately, in

spite

> > > of the medication, she will have one of these " spells "

following her

> > > monthly period or after several days of activity. Does anyone

have

> > any

> > > experience with this? She also has had a stroke like episode

and has

> > > intestinal dysmotility and is mentally retarded (mental age 4-5

> > years

> > > on a good day)

> > > Thanks, Shelby

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained

> > herein are not necessarily those of the list moderators. The

author of

> > this e mail is entirely responsible for its content. List members

are

> > reminded of their responsibility to evaluate the content of the

> > postings and consult with their physicians regarding changes in

their

> > own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends

> > one is automatically moderated or removed depending on the

severity of

> > the attack.

> >

> >

> >

> >

> >

> >

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> > In his case, the medication has been the only thing that helped

> > and brought him to a level that was somewhat within reason but

> > this is not every day and he's male so he's not dealing with the

> hormonal issues your daughter is dealing with.   He does take

> Buspar which seems to help.

BTW, my nephew was on Respiradol (sp?), and it seemed to help

somewhat, but his appetite went from poor to non-existent, so he went

off it. They also tried amphetamines and Ritalin, but he doesn't

have ADD so he was *even more* bouncing off the walls with that.

The big issue for my nephew, don't know if it is similar for some of

us, is that they keep switching between psychologists and

neurologists for the interpretation of his symptoms. They haven't

gone to a neurologist who knows about mitochondrial diseases or

metabolic diseases. My sister-in-law's brother is a Ph.D.

psychiatrist, so he says the answer is psychotherapy and psych

drugs.

Regarding hormones, there are new birth control pills (Seasonale is

one) that are the same amount of hormone for 12 weeks, then no

hormone for a week, reducing the bouncing hormone levels and reducing

the number of cycles to 4 per year. It might be something to discuss

with her doctor if hormones are an issue. Hope I don't offend by

suggesting this.

> > I would first see if they are keeping a close watch on her

> > sugar.  Sometimes, hypoglycemia causes this type of erratic

> > behavior in some individuals, especially those with a learning

> > disability. 

Several people in my family have glucose intolerance ( " almost

diabetes " - fail 1 of 4 GTT numbers, failing two would be diabetes)

and reactive hypoglycemia - blood sugar falls in response to eating,

especially when eating large meals.

> > I wish I could offer more help because I know

> > exactly how you are feeling. 

I wanted to say that my situation can't compare to you guys, but I

guess one never knows what the answer might be. I remember a story

about a sick boy in the hospital who was within hours of dying, and

the nurse rubbed his head, and found a bump which turned out to be a

tick. He recovered after they removed the tick and treated the

infection specifically. Sometimes chance could be better help than

all the experts in the world.

> > We'll just have to keep trying.

You have a great attitude Alice, it's amazing all you and your family

have on your plate and deal with, and have a positive outlook. My

thoughts are with all you guys on this list, everybody is so caring

and takes time out from their busy lives to help other people.

Take care,

RH

> >

> > Welcome to Mitoldies.

> >

> > Alice

> >

> >

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> I am far to ill with the disease myself to take care of at

> home now so the placement for him is a good one.

It is so difficult to decide when is the right time to make care

decisions. Every day I think about whether I can take care of my

three little ones without extra help. Things like leaving the baby

in her stroller at the fair and having the police contact us about it

are hard to handle. Yes, I forgot about her, and didn't know what

they were talking about...

It is bad enough to worry about someone else's health, and having to

worry about one's own health makes it all the more difficult. My

nephew is getting older and bigger, but is still manageable and able

to attend school twice a week - my other nephew is 12 years old and

150 lbs. with similar issues, and soon care decisions must be made

for him.

We need to make a care decision for my uncle when he comes out of PT

rehab, and there seems to be too many choices, but not any good

ones. I think he would be happier to be more involved in a

community, like at a senior residence center, than live at home and

have to deal with a live-in helper day in and day out.

He has mito symptoms, but too old to be tested and too crotchety to

take CoQ10 or carnitine without his doctor's approval.

I feel very lucky to get involved with this list, and understand that

people are going through a lot of similar difficult decisions. " The

truth will set you free " - and we each need help to find our own

truths.

Take care,

RH

> Re: Help

>

>

> Alice,

> What type of mito does your son and daughter have? Where were

they

> diagnosed?

> Does your son live at home? Do you have help taking care of him?

>

>

>

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Guest guest

Sensory integration helped my son a great deal with some of his sensory

issues. He can now walk in the dark and stay next to you when walking with

you instead of drifting in front. It improved his tactile defensivness, but

he still has it. Sensory sensitivity is a malfunction in the brain so

sensory integration needs to take place early while the brain is still

developing.

Making some accomodations that are child controlled and only supported by

parents are very helpful. Giving a child a large cardboard box with pillow

and blanket inside can help them remove themselves from the sensory

overload. If a child has trouble sitting in a chair for more than a minute

or two, let them stand. They are doing this because it is painful for them

to keep their bottom in place.

Just a few ideas.

laurie

>

> Reply-To:

> Date: Mon, 12 Jul 2004 14:30:24 -0000

> To:

> Subject: Re: Help

>

>> only has the psychosis when she in in " crisis " .

>

> My nephew definitely shows more behaviors (running up and down stairs

> *constantly* and screeching, etc.) when under stress, and in noisy

> environments.

>

>> I will speak to her neurologist about central auditory processing

>> disorder. At times 's hearing seems especially acute, other

>> times you would think she was deaf. Does your nephew have these

>> characteristics?

>

> Yes, and there was a thread in this group about " painful hearing " - I

> forget the word, but someone will help me out I hope. Noises

> actually hurt, not even just loud ones. I could not talk on the

> phone using one ear when I had this problem.

>

> My son has intermittent hearing loss, due to fluid in the ears, and

> also mild CAPD. So we really never know what he hears, just have to

> keep repeating instructions and have him repeat it back. For my

> younger son, we ask him to get a specific toy to check his hearing.

>

>> Does your nephew have a mito disease?

>

> I think so, but probably an autoimmune cause. Both my and my sister-

> in-law's families have autoimmune issues, like diabetes, thyroid,

> lupus, etc. My family is not into getting tested for mitochondrial

> disease, and I personally don't have the genetic results for them to

> just do a blood test against.

>

>> How does his family deal with his behaviors?

>

> They just either let him work it out (which could be hours and hours,

> including locking him in his room if he gets too upset). Or, they

> have a few tasks that are his favorites, like coloring his Mickey

> Mouse coloring book. If they can shift his focus a bit, sometimes

> that works. But usually, like at family events, he just keeps

> running up and down the stairs at my dad's house - luckily it is a

> split level.

>

> Only now they are getting some improvement due to the CAPD sound

> therapy. They are away at the moment, but I'll talk to my brother

> when they are back to get an update on how the sound therapy is

> working.

>

>> does have sensory integration issues.

>

> Is she getting therapy for that? My younger son has been helped by

> therapy for sensory integration issues, but isn't 100% cured of them.

>

>> Thanks for your help. Shelby

>

> No problem, it is difficult trying to get answers for these type

> things. My friend's brother is 35 and has some similar issues, and

> his parents stopped taking him to doctors at age 10. He never had

> therapy, and I think nowadays, there are a lot more choices and ways

> to improve symptoms, or at least make them occur less often.

>

> Take care,

> RH

>

>

>

>

>>

>>

>>

>>> Holding one's ears and racing around the house sounds more like a

>>> central auditory processing (CAP) disorder than psychosis to

> me.  Has

>>> she had central auditory processing testing?

>>>

>>> Here in NJ, there is an expert on the testing and therapy for CAP

>>> disorders.  My nephew, who is diagnosed as autistic and has many

> of

>>> the same behaviors you list, just got his central auditory

> processing

>>> testing done, and he failed ALL areas they test.

>>>

>>> It might be worth a look - my son, who has attention problems in

>>> school, has a mild CAP disorder, and his classroom environment

> will

>>> be changed significantly to accommodate his disability.

>>>

>>> The therapy for a more severe CAP disorder like my nephew's is to

>>> wear headphones for 8 to 10 minutes per day with an individually

>>> designed listening programs - sounds likes the ocean or just

>>> different tones.  This helps " reprogram " the brain to tolerate

>>> outside noises.  I am struck by the similarities between my

> nephew

>>> (age 10, but probably functions as a 4 year old) and your

> daughter. 

>>>

>>> A question - do they consider the running up and down stairs a

>>> psychotic behavior?  These sound so much like sensory integration

>>> issues...

>>>

>>> Take care,

>>> RH

>>>

>>>

>>>

>>>

>>>> Hello,

>>>> I am new at this group. I have a daughter who is 30 years old

> who

>>> has

>>>> a clinical diagnosis of mitochondrial encephalopathy. She is

>>>> developmentally delayed, has speech and motor problems and

>>> deteriorates

>>>> cognitively, motor and behaviorally after viruses and

> infections.

>>> She

>>>> periodically becomes psychotic, racing around the house,

> yelling,

>>>> screaming, clapping her hands, and throwing things. She is on

>>>> Seroquel, an antipsychotic, Ativan, for anxiety, Trazodone for

> sleep

>>>> and Eskalith for mood swings and the mito cocktail. Lately, in

> spite

>>>> of the medication, she will have one of these " spells "

> following her

>>>> monthly period or after several days of activity. Does anyone

> have

>>> any

>>>> experience with this? She also has had a stroke like episode

> and has

>>>> intestinal dysmotility and is mentally retarded (mental age 4-5

>>> years

>>>> on a good day)

>>>> Thanks, Shelby

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

> contained

>>> herein are not necessarily those of the list moderators. The

> author of

>>> this e mail is entirely responsible for its content. List members

> are

>>> reminded of their responsibility to evaluate the content of the

>>> postings and consult with their physicians regarding changes in

> their

>>> own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone who

> sends

>>> one is automatically moderated or removed depending on the

> severity of

>>> the attack.

>>>

>>>

>>>

>>>

>>>

>>>

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Guest guest

RH

My mother had mito and us kids finally convinced my dad that he could not

take care of her anymore. They lived out in the sticks. She had gone beyond

the stage of being appropriate for an assisted living facility by this time.

She went to a nursing home near me and had either my dad or one of us visit

most days. I wouldn't stay long as a rule, but she knew I had come. She had

a room near the nursing station and knew more about what went on than the

staff. She developed a very special friendship with another resident and

when she passed away in March, it was apparent that the decision to have her

live there was a good one. She was happy those last several months and had

more of a social life than she had had for 25 years or more.

I will be thinking of you as you are dealing with the hard family decisions.

laurie

>

> Reply-To:

> Date: Mon, 12 Jul 2004 14:59:21 -0000

> To:

> Subject: Re: Help

>

>> I am far to ill with the disease myself to take care of at

>> home now so the placement for him is a good one.

>

> It is so difficult to decide when is the right time to make care

> decisions. Every day I think about whether I can take care of my

> three little ones without extra help. Things like leaving the baby

> in her stroller at the fair and having the police contact us about it

> are hard to handle. Yes, I forgot about her, and didn't know what

> they were talking about...

>

> It is bad enough to worry about someone else's health, and having to

> worry about one's own health makes it all the more difficult. My

> nephew is getting older and bigger, but is still manageable and able

> to attend school twice a week - my other nephew is 12 years old and

> 150 lbs. with similar issues, and soon care decisions must be made

> for him.

>

> We need to make a care decision for my uncle when he comes out of PT

> rehab, and there seems to be too many choices, but not any good

> ones. I think he would be happier to be more involved in a

> community, like at a senior residence center, than live at home and

> have to deal with a live-in helper day in and day out.

>

> He has mito symptoms, but too old to be tested and too crotchety to

> take CoQ10 or carnitine without his doctor's approval.

>

> I feel very lucky to get involved with this list, and understand that

> people are going through a lot of similar difficult decisions. " The

> truth will set you free " - and we each need help to find our own

> truths.

>

> Take care,

> RH

>

>

>

>> Re: Help

>>

>>

>> Alice,

>> What type of mito does your son and daughter have? Where were

> they

>> diagnosed?

>> Does your son live at home? Do you have help taking care of him?

>>

>>

>>

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Guest guest

Thanks for the kind thoughts. I am happy that my dad (no spring

chicken himself, but relatively good health) will be able to stay

with my uncle at his home for the short term, unfortunately

inconveniencing me but we'll deal with it. There was a discussion

about having my dad move in with his brother 10 years ago when my

mother passed on, but he was like " NO WAY " , now things have changed,

and they'll take it one day at a time. My dad is lucky he does not

have to worry about selling his house, although I mentioned he could

rent it out (about 20 miles from NYC) and store stuff with us and

other kids if he needs the money.

I find it funny to try to plan this kind of stuff, work on my Ph.D.

project, and be a housewife, when sometimes I forget how to tie my

shoes or can't climb the stairs. People say I have a good outlook :)

Take care,

RH

> RH

>

> My mother had mito and us kids finally convinced my dad that he

could not

> take care of her anymore. They lived out in the sticks. She had

gone beyond

> the stage of being appropriate for an assisted living facility by

this time.

> She went to a nursing home near me and had either my dad or one of

us visit

> most days. I wouldn't stay long as a rule, but she knew I had come.

She had

> a room near the nursing station and knew more about what went on

than the

> staff. She developed a very special friendship with another

resident and

> when she passed away in March, it was apparent that the decision to

have her

> live there was a good one. She was happy those last several months

and had

> more of a social life than she had had for 25 years or more.

>

> I will be thinking of you as you are dealing with the hard family

decisions.

>

> laurie

>

> > From: " ohgminion "

> > Reply-To:

> > Date: Mon, 12 Jul 2004 14:59:21 -0000

> > To:

> > Subject: Re: Help

> >

> >> I am far to ill with the disease myself to take care of at

> >> home now so the placement for him is a good one.

> >

> > It is so difficult to decide when is the right time to make care

> > decisions. Every day I think about whether I can take care of my

> > three little ones without extra help. Things like leaving the

baby

> > in her stroller at the fair and having the police contact us

about it

> > are hard to handle. Yes, I forgot about her, and didn't know what

> > they were talking about...

> >

> > It is bad enough to worry about someone else's health, and having

to

> > worry about one's own health makes it all the more difficult. My

> > nephew is getting older and bigger, but is still manageable and

able

> > to attend school twice a week - my other nephew is 12 years old

and

> > 150 lbs. with similar issues, and soon care decisions must be made

> > for him.

> >

> > We need to make a care decision for my uncle when he comes out of

PT

> > rehab, and there seems to be too many choices, but not any good

> > ones. I think he would be happier to be more involved in a

> > community, like at a senior residence center, than live at home

and

> > have to deal with a live-in helper day in and day out.

> >

> > He has mito symptoms, but too old to be tested and too crotchety

to

> > take CoQ10 or carnitine without his doctor's approval.

> >

> > I feel very lucky to get involved with this list, and understand

that

> > people are going through a lot of similar difficult

decisions. " The

> > truth will set you free " - and we each need help to find our own

> > truths.

> >

> > Take care,

> > RH

> >

> >

> >

> >> Re: Help

> >>

> >>

> >> Alice,

> >> What type of mito does your son and daughter have? Where were

> > they

> >> diagnosed?

> >> Does your son live at home? Do you have help taking care of him?

> >>

> >>

> >>

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