Re: how lack of brain energy impacts behavior/

[Guest guest]

Can you ask your doctor for a permanent excuse? I had one when I was in high school. I have never been diagnosed with mito, but I have a condition where I will break out in hives for no good reason at all. During my adolecent years I commonly got them on my tounge and in my throat. Since I could potentially suffocate from them, my allergist wrote me a permanent excuse so I could deal with my medical issues first. The teachers did not like this because they did not understand. But, they could not go over the doctors head and rufuse to honor his request. If it were not because of the letter from my doctor I would have failed my Sophmore year, not because of my grades but due to absences.

Just a suggeston.

[Guest guest]

Can you ask your doctor for a permanent excuse? I had one when I was in high school. I have never been diagnosed with mito, but I have a condition where I will break out in hives for no good reason at all. During my adolecent years I commonly got them on my tounge and in my throat. Since I could potentially suffocate from them, my allergist wrote me a permanent excuse so I could deal with my medical issues first. The teachers did not like this because they did not understand. But, they could not go over the doctors head and rufuse to honor his request. If it were not because of the letter from my doctor I would have failed my Sophmore year, not because of my grades but due to absences.

Just a suggeston.

[Guest guest]

Can you ask your doctor for a permanent excuse? I had one when I was in high school. I have never been diagnosed with mito, but I have a condition where I will break out in hives for no good reason at all. During my adolecent years I commonly got them on my tounge and in my throat. Since I could potentially suffocate from them, my allergist wrote me a permanent excuse so I could deal with my medical issues first. The teachers did not like this because they did not understand. But, they could not go over the doctors head and rufuse to honor his request. If it were not because of the letter from my doctor I would have failed my Sophmore year, not because of my grades but due to absences.

Just a suggeston.

[Guest guest]

Thanks for the great e-mail

I am printing it now to give to Colby's teachers. We are having all kinds

of trouble with his teacher.I received a nasty note about his absents.

Never has any teacher questioned this. They threatened to report this to the

state of KS District Attorney. Let them try! They want a doctors note for

every absence. I told the Vice-Principal that when it is snowy and Icy I do

not send him, I don't call the Doctor for that, I told him when Colby is too

tired to get out of bed, I don't call the Dr, for that, and etc. etc... You

guys know what I mean. So O I am really bummed and my anxiety level is at

an all time HIGH! He has missed 39 out of 60 days of semester. I told them

maybe Colby should not be going at all. So back to the IEP table. Sorry to

unload.

Colby's mom

>

>Reply-To: Mito

>To: mito Mito >

>Subject: how lack of brain energy impacts behavior

>Date: Tue, 30 Mar 2004 17:04:40 -0600

>

>I am including some info that I shared with Evan's teachers about the

>impact of mitochondrial disorders on different areas of the brain. This

>information helped me to understand how Evan's lack of energy impacts his

>brain functioning and behavior. The basal ganglia, the frontal lobe, and

>the temporal lobe are the three areas of the brain that are especially

>vulnerable. After reading the info, his teachers really appreciated how

>important it is for Evan to avoid fatigue.

>

>1. Problems with the basal ganglia often present with tremulous, perhaps

>illegible handwriting, soft monotone rapid speech, headaches, and/or

>anxiety.

>

>2. Functions of the frontal lobe that are often impacted include impulse

>control and the ability to deal with frustration, decision making and

>planning, and maintaining attention to relevant tasks.

>

>3. The temporal lobe is important in language development and personal

>social interaction. Hypergraphia (a tendency toward compulsive and

>extensive writing) has also been reported in temporal lobe disorders.

>

>

>

>P.S. Here are two excerpts from websites on temporal lobe and frontal lobe

>dysfunction that you might find interesting--

>

> " Some of my temporal lobe patients spend hours and hours writing. One

>patient, who moved to another state, used to write me 20 and 30 page

>letters, detailing all of the aspects of her life. As I learned about

>temporal lobe hypergraphia and had her treated with anticonvulsant

>medication her letters became more coherent and were shortened to 2 to 3

>page, saying the same information. "

>

>The major role of the frontal lobes is the regulation of behavior.

>Deficits in frontal lobe processing include:

>

> *

>

>

> Problems of Starting--This may manifest as decreased spontaneity

> and initiation. Such individuals seem to lack motivation and may

> sit silently without apparent interest in or curiosity about

> * surroundings until they are directed to do something.

> Difficulties in Making Mental or Behavioral Shifts--This includes

> rigidity or perseveration on a single idea or a single action.

>Individuals with these problems may be able to successfully

> verbalize solutions to problems, including plans necessary to meet

> goals successfully, yet be unable to put any plan into effective

> * action.

> Difficulties with Attention--Individuals with frontal lobe

> deficits are often captured by extraneous aspects of a task. As a

> result, they may demonstrate behaviors which seem irrelevant, even

> bizarre, to the observer. Because they may be highly

> distractible, they often seem to shift focus continually, never

> * arriving at a point which seems purposeful.

> Problems in Stopping--This may manifest as a more general deficit

> in self monitoring. It may present as impulsivity or a quickness

> * to anger or speaking too loudly.

> Problems with Social Awareness--This category would include

> deficits in the ability to appreciate the impact one makes on

> others, sometimes resulting in rude or insensitive behavior or

> * with a general lack of apparent concern about social conventions.

> Deficient Self-Awareness--Defective self-criticism may be

> associated with a tendency to be self-satisfied, to experience

> little or no anxiety, and to fail to appreciate the existence and

> * practical implications of deficits (limited insight).

> A Concrete Attitude--Some patients with frontal lobe injury retain

> high-level conceptual abilities but demonstrate a day-to-day

> literal-mindedness and loss of perspective.

>

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad,

16, healthy, Caleb, 10, also healthy

_________________________________________________________________

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Premium!

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1/

[Guest guest]

Thanks for the great e-mail

I am printing it now to give to Colby's teachers. We are having all kinds

of trouble with his teacher.I received a nasty note about his absents.

Never has any teacher questioned this. They threatened to report this to the

state of KS District Attorney. Let them try! They want a doctors note for

every absence. I told the Vice-Principal that when it is snowy and Icy I do

not send him, I don't call the Doctor for that, I told him when Colby is too

tired to get out of bed, I don't call the Dr, for that, and etc. etc... You

guys know what I mean. So O I am really bummed and my anxiety level is at

an all time HIGH! He has missed 39 out of 60 days of semester. I told them

maybe Colby should not be going at all. So back to the IEP table. Sorry to

unload.

Colby's mom

>

>Reply-To: Mito

>To: mito Mito >

>Subject: how lack of brain energy impacts behavior

>Date: Tue, 30 Mar 2004 17:04:40 -0600

>

>I am including some info that I shared with Evan's teachers about the

>impact of mitochondrial disorders on different areas of the brain. This

>information helped me to understand how Evan's lack of energy impacts his

>brain functioning and behavior. The basal ganglia, the frontal lobe, and

>the temporal lobe are the three areas of the brain that are especially

>vulnerable. After reading the info, his teachers really appreciated how

>important it is for Evan to avoid fatigue.

>

>1. Problems with the basal ganglia often present with tremulous, perhaps

>illegible handwriting, soft monotone rapid speech, headaches, and/or

>anxiety.

>

>2. Functions of the frontal lobe that are often impacted include impulse

>control and the ability to deal with frustration, decision making and

>planning, and maintaining attention to relevant tasks.

>

>3. The temporal lobe is important in language development and personal

>social interaction. Hypergraphia (a tendency toward compulsive and

>extensive writing) has also been reported in temporal lobe disorders.

>

>

>

>P.S. Here are two excerpts from websites on temporal lobe and frontal lobe

>dysfunction that you might find interesting--

>

> " Some of my temporal lobe patients spend hours and hours writing. One

>patient, who moved to another state, used to write me 20 and 30 page

>letters, detailing all of the aspects of her life. As I learned about

>temporal lobe hypergraphia and had her treated with anticonvulsant

>medication her letters became more coherent and were shortened to 2 to 3

>page, saying the same information. "

>

>The major role of the frontal lobes is the regulation of behavior.

>Deficits in frontal lobe processing include:

>

> *

>

>

> Problems of Starting--This may manifest as decreased spontaneity

> and initiation. Such individuals seem to lack motivation and may

> sit silently without apparent interest in or curiosity about

> * surroundings until they are directed to do something.

> Difficulties in Making Mental or Behavioral Shifts--This includes

> rigidity or perseveration on a single idea or a single action.

>Individuals with these problems may be able to successfully

> verbalize solutions to problems, including plans necessary to meet

> goals successfully, yet be unable to put any plan into effective

> * action.

> Difficulties with Attention--Individuals with frontal lobe

> deficits are often captured by extraneous aspects of a task. As a

> result, they may demonstrate behaviors which seem irrelevant, even

> bizarre, to the observer. Because they may be highly

> distractible, they often seem to shift focus continually, never

> * arriving at a point which seems purposeful.

> Problems in Stopping--This may manifest as a more general deficit

> in self monitoring. It may present as impulsivity or a quickness

> * to anger or speaking too loudly.

> Problems with Social Awareness--This category would include

> deficits in the ability to appreciate the impact one makes on

> others, sometimes resulting in rude or insensitive behavior or

> * with a general lack of apparent concern about social conventions.

> Deficient Self-Awareness--Defective self-criticism may be

> associated with a tendency to be self-satisfied, to experience

> little or no anxiety, and to fail to appreciate the existence and

> * practical implications of deficits (limited insight).

> A Concrete Attitude--Some patients with frontal lobe injury retain

> high-level conceptual abilities but demonstrate a day-to-day

> literal-mindedness and loss of perspective.

>

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad,

16, healthy, Caleb, 10, also healthy

_________________________________________________________________

Watch LIVE baseball games on your computer with MLB.TV, included with MSN

Premium!

http://join.msn.com/?page=features/mlb&pgmarket=en-us/go/onm00200439ave/direct/0\

1/

[Guest guest]

Thanks for the great e-mail

I am printing it now to give to Colby's teachers. We are having all kinds

of trouble with his teacher.I received a nasty note about his absents.

Never has any teacher questioned this. They threatened to report this to the

state of KS District Attorney. Let them try! They want a doctors note for

every absence. I told the Vice-Principal that when it is snowy and Icy I do

not send him, I don't call the Doctor for that, I told him when Colby is too

tired to get out of bed, I don't call the Dr, for that, and etc. etc... You

guys know what I mean. So O I am really bummed and my anxiety level is at

an all time HIGH! He has missed 39 out of 60 days of semester. I told them

maybe Colby should not be going at all. So back to the IEP table. Sorry to

unload.

Colby's mom

>

>Reply-To: Mito

>To: mito Mito >

>Subject: how lack of brain energy impacts behavior

>Date: Tue, 30 Mar 2004 17:04:40 -0600

>

>I am including some info that I shared with Evan's teachers about the

>impact of mitochondrial disorders on different areas of the brain. This

>information helped me to understand how Evan's lack of energy impacts his

>brain functioning and behavior. The basal ganglia, the frontal lobe, and

>the temporal lobe are the three areas of the brain that are especially

>vulnerable. After reading the info, his teachers really appreciated how

>important it is for Evan to avoid fatigue.

>

>1. Problems with the basal ganglia often present with tremulous, perhaps

>illegible handwriting, soft monotone rapid speech, headaches, and/or

>anxiety.

>

>2. Functions of the frontal lobe that are often impacted include impulse

>control and the ability to deal with frustration, decision making and

>planning, and maintaining attention to relevant tasks.

>

>3. The temporal lobe is important in language development and personal

>social interaction. Hypergraphia (a tendency toward compulsive and

>extensive writing) has also been reported in temporal lobe disorders.

>

>

>

>P.S. Here are two excerpts from websites on temporal lobe and frontal lobe

>dysfunction that you might find interesting--

>

> " Some of my temporal lobe patients spend hours and hours writing. One

>patient, who moved to another state, used to write me 20 and 30 page

>letters, detailing all of the aspects of her life. As I learned about

>temporal lobe hypergraphia and had her treated with anticonvulsant

>medication her letters became more coherent and were shortened to 2 to 3

>page, saying the same information. "

>

>The major role of the frontal lobes is the regulation of behavior.

>Deficits in frontal lobe processing include:

>

> *

>

>

> Problems of Starting--This may manifest as decreased spontaneity

> and initiation. Such individuals seem to lack motivation and may

> sit silently without apparent interest in or curiosity about

> * surroundings until they are directed to do something.

> Difficulties in Making Mental or Behavioral Shifts--This includes

> rigidity or perseveration on a single idea or a single action.

>Individuals with these problems may be able to successfully

> verbalize solutions to problems, including plans necessary to meet

> goals successfully, yet be unable to put any plan into effective

> * action.

> Difficulties with Attention--Individuals with frontal lobe

> deficits are often captured by extraneous aspects of a task. As a

> result, they may demonstrate behaviors which seem irrelevant, even

> bizarre, to the observer. Because they may be highly

> distractible, they often seem to shift focus continually, never

> * arriving at a point which seems purposeful.

> Problems in Stopping--This may manifest as a more general deficit

> in self monitoring. It may present as impulsivity or a quickness

> * to anger or speaking too loudly.

> Problems with Social Awareness--This category would include

> deficits in the ability to appreciate the impact one makes on

> others, sometimes resulting in rude or insensitive behavior or

> * with a general lack of apparent concern about social conventions.

> Deficient Self-Awareness--Defective self-criticism may be

> associated with a tendency to be self-satisfied, to experience

> little or no anxiety, and to fail to appreciate the existence and

> * practical implications of deficits (limited insight).

> A Concrete Attitude--Some patients with frontal lobe injury retain

> high-level conceptual abilities but demonstrate a day-to-day

> literal-mindedness and loss of perspective.

>

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad,

16, healthy, Caleb, 10, also healthy

_________________________________________________________________

Watch LIVE baseball games on your computer with MLB.TV, included with MSN

Premium!

http://join.msn.com/?page=features/mlb&pgmarket=en-us/go/onm00200439ave/direct/0\

1/

[Guest guest]

;

Maybe your doctor can help you with this by writing a letter to the PRINCIPAL

of your school ...and a copy to the chairperson of your school district (or

whatever you call it down there south of the Canuck border <grin>)

telling them that they can reasonably expect many absences with Colby as

he has severe issues with energy level caused by his Mitochondrial Disease.

He can also tell them that you are parenting Colby responsibly and your

decision making with respect to school attendance should be respected. He

could also (hehehe) tell them that they are being unreasonable under the

circumstances that they are providing services to a disabled child and are

expected, by law, to provide the least restrictive environment for Colby!

I think I would be getting this done sooner rather than later ... and pre-empt

what just could happen .... that this officious school jerk takes the matter

farther and into the hands of the folks who investigate YOUR parenting. You

may also have to assure these folk that your educational expectations from

them are not high from Colby right now. You feel it is better for him to

have social contact, appropriate to his energy level, than to acheive academically.

It could be that modifying his IEP is a good idea ... to let them off the

hook for his academic acheivement, since they have accountability standards

to meet also! ;-) I believe

there are advocates for disabled children (in your area) who would be willing

to help you through this quagmire and help you with his IEP! I would wonder,

not knowing Colby, if this teacher is feeling overloaded with a big class

of kids and a disabled child. Does she need assistance with Colby?

Often this kind of thing is a result of a school "covering their rear guard"

because they are feeling that the IEP is asking too much from them in terms

of acheivement given the attendance!!!! Probably better to work with them,

love because it will reduce *your* stress level!

I think you need a HUG! Sometimes the system gets so caught up in protecting

themselves from legal action that they forget that they are dealing with

human beings who have needs ... and, in your case, special needs! GRRRRRRR!

Jean

CARRIE CLARK wrote:

Thanks for the

great e-mail

I am printing it now to give to Colby's teachers. We are having all kinds

of trouble with his teacher.I received a nasty note about his absents.

Never has any teacher questioned this. They threatened to report this to

the

state of KS District Attorney. Let them try! They want a doctors note

for

every absence. I told the Vice-Principal that when it is snowy and Icy

I do

not send him, I don't call the Doctor for that, I told him when Colby is

too

tired to get out of bed, I don't call the Dr, for that, and etc. etc...

You

guys know what I mean. So O I am really bummed and my anxiety level is

at

an all time HIGH! He has missed 39 out of 60 days of semester. I told them

maybe Colby should not be going at all. So back to the IEP table. Sorry

to

unload.

Colby's mom

>

>Reply-To: Mito

>To: mito <Mito >

>Subject: how lack of brain energy impacts behavior

>Date: Tue, 30 Mar 2004 17:04:40 -0600

>

>I am including some info that I shared with Evan's teachers about the

>impact of mitochondrial disorders on different areas of the brain.

This

>information helped me to understand how Evan's lack of energy impacts

his

>brain functioning and behavior. The basal ganglia, the frontal lobe,

and

>the temporal lobe are the three areas of the brain that are especially

>vulnerable. After reading the info, his teachers really appreciated

how

>important it is for Evan to avoid fatigue.

>

>1. Problems with the basal ganglia often present with tremulous, perhaps

>illegible handwriting, soft monotone rapid speech, headaches, and/or

>anxiety.

>

>2. Functions of the frontal lobe that are often impacted include impulse

>control and the ability to deal with frustration, decision making and

>planning, and maintaining attention to relevant tasks.

>

>3. The temporal lobe is important in language development and personal

>social interaction. Hypergraphia (a tendency toward compulsive and

>extensive writing) has also been reported in temporal lobe disorders.

>

>

>

>P.S. Here are two excerpts from websites on temporal lobe and frontal

lobe

>dysfunction that you might find interesting--

>

>"Some of my temporal lobe patients spend hours and hours writing. One

>patient, who moved to another state, used to write me 20 and 30 page

>letters, detailing all of the aspects of her life. As I learned about

>temporal lobe hypergraphia and had her treated with anticonvulsant

>medication her letters became more coherent and were shortened to 2

to 3

>page, saying the same information. "

>

>The major role of the frontal lobes is the regulation of behavior.

>Deficits in frontal lobe processing include:

>

> *

>

>

> Problems of Starting--This may manifest as decreased spontaneity

> and initiation. Such individuals seem to lack motivation and

may

> sit silently without apparent interest in or curiosity about

> * surroundings until they are directed to do something.

> Difficulties in Making Mental or Behavioral Shifts--This includes

> rigidity or perseveration on a single idea or a single action.

>Individuals with these problems may be able to successfully

> verbalize solutions to problems, including plans necessary to

meet

> goals successfully, yet be unable to put any plan into effective

> * action.

> Difficulties with Attention--Individuals with frontal lobe

> deficits are often captured by extraneous aspects of a task.

As a

> result, they may demonstrate behaviors which seem irrelevant,

even

> bizarre, to the observer. Because they may be highly

> distractible, they often seem to shift focus continually, never

> * arriving at a point which seems purposeful.

> Problems in Stopping--This may manifest as a more general deficit

> in self monitoring. It may present as impulsivity or a quickness

> * to anger or speaking too loudly.

> Problems with Social Awareness--This category would include

> deficits in the ability to appreciate the impact one makes on

> others, sometimes resulting in rude or insensitive behavior or

> * with a general lack of apparent concern about social conventions.

> Deficient Self-Awareness--Defective self-criticism may be

> associated with a tendency to be self-satisfied, to experience

> little or no anxiety, and to fail to appreciate the existence

and

> * practical implications of deficits (limited insight).

> A Concrete Attitude--Some patients with frontal lobe injury retain

> high-level conceptual abilities but demonstrate a day-to-day

> literal-mindedness and loss of perspective.

>

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad,

16, healthy, Caleb, 10, also healthy

_________________________________________________________________

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Premium!

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Please contact mito-owner with any problems or questions.

[Guest guest]

Thanks Jean

The funny thing is we have doctors letters and no one has ever given any trouble until this year. Colby is MR, and does not look 14. I constantly get asked if he a downsyndrome child, he has dysmorphic features, and is very short. So he does not look like, my most hated word, "normal". But the teacher did call and apoligize after I wrote her a note this morning. She complains when he is at school, that he is off task and blah blah blah. But today she was saying I just love him so much, and I know when you keep him home there is a reason. So I don't know who to believe. I have fought so hard thru the years at our lovely IEP meetings, but now I pick and choose my battles. It is just to hard for me now. I just want him to have the best quality of life, he brings us so much joy, and he really is a smart little guy, he just can't talk. Thanks for your input!

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy> >Reply-To: Mito >To: Mito >Subject: Re: how lack of brain energy impacts behavior/ >Date: Thu, 15 Apr 2004 07:26:52 -0700 > >; > >Maybe your doctor can help you with this by writing a letter to the >PRINCIPAL of your school ...and a copy to the chairperson of your >school district (or whatever you call it down there south of the >Canuck border <grin>) telling them that they can reasonably expect >many absences with Colby as he has severe issues with energy level >caused by his Mitochondrial Disease. He can also tell them that you >are parenting Colby responsibly and your decision making with >respect to school attendance should be respected. He could also >(hehehe) tell them that they are being unreasonable under the >circumstances that they are providing services to a disabled child >and are expected, by law, to provide the least restrictive >environment for Colby! > >I think I would be getting this done sooner rather than later ... >and pre-empt what just could happen .... that this officious school >jerk takes the matter farther and into the hands of the folks who >investigate YOUR parenting. You may also have to assure these folk >that your educational expectations from them are not high from Colby >right now. You feel it is better for him to have social contact, >appropriate to his energy level, than to acheive academically. It >could be that modifying his IEP is a good idea ... to let them off >the hook for his academic acheivement, since they have >accountability standards to meet also! ;-) I believe there are >advocates for disabled children (in your area) who would be willing >to help you through this quagmire and help you with his IEP! I >would wonder, not knowing Colby, if this teacher is feeling >overloaded with a big class of kids and a disabled child. Does she >need assistance with Colby? > >Often this kind of thing is a result of a school "covering their >rear guard" because they are feeling that the IEP is asking too much >from them in terms of acheivement given the attendance!!!! Probably >better to work with them, love because it will reduce *your* stress >level! > >I think you need a HUG! Sometimes the system gets so caught up in >protecting themselves from legal action that they forget that they >are dealing with human beings who have needs ... and, in your case, >special needs! GRRRRRRR! > >Jean > > > >CARRIE CLARK wrote: > >>Thanks for the great e-mail >> >>I am printing it now to give to Colby's teachers. We are having >>all kinds >>of trouble with his teacher.I received a nasty note about his >>absents. Never has any teacher questioned this. They threatened to >>report this to the >>state of KS District Attorney. Let them try! They want a doctors >>note for >>every absence. I told the Vice-Principal that when it is snowy and >>Icy I do >>not send him, I don't call the Doctor for that, I told him when >>Colby is too >>tired to get out of bed, I don't call the Dr, for that, and etc. >>etc... You >>guys know what I mean. So O I am really bummed and my anxiety >>level is at >>an all time HIGH! He has missed 39 out of 60 days of semester. I >>told them >>maybe Colby should not be going at all. So back to the IEP table. >>Sorry to >>unload. >> >>Colby's mom >> >> >> > >> >Reply-To: Mito >> >To: mito <Mito > >> >Subject: how lack of brain energy impacts behavior >> >Date: Tue, 30 Mar 2004 17:04:40 -0600 >> > >> >I am including some info that I shared with Evan's teachers about >>the >> >impact of mitochondrial disorders on different areas of the >>brain. This >> >information helped me to understand how Evan's lack of energy >>impacts his >> >brain functioning and behavior. The basal ganglia, the frontal >>lobe, and >> >the temporal lobe are the three areas of the brain that are >>especially >> >vulnerable. After reading the info, his teachers really >>appreciated how >> >important it is for Evan to avoid fatigue. >> > >> >1. Problems with the basal ganglia often present with tremulous, >>perhaps >> >illegible handwriting, soft monotone rapid speech, headaches, >>and/or >> >anxiety. >> > >> >2. Functions of the frontal lobe that are often impacted include >>impulse >> >control and the ability to deal with frustration, decision making >>and >> >planning, and maintaining attention to relevant tasks. >> > >> >3. The temporal lobe is important in language development and >>personal >> >social interaction. Hypergraphia (a tendency toward compulsive >>and >> >extensive writing) has also been reported in temporal lobe >>disorders. >> > >> > >> > >> >P.S. Here are two excerpts from websites on temporal lobe and >>frontal lobe >> >dysfunction that you might find interesting-- >> > >> >"Some of my temporal lobe patients spend hours and hours writing. >> One >> >patient, who moved to another state, used to write me 20 and 30 >>page >> >letters, detailing all of the aspects of her life. As I learned >>about >> >temporal lobe hypergraphia and had her treated with >>anticonvulsant >> >medication her letters became more coherent and were shortened to >>2 to 3 >> >page, saying the same information. " >> > >> >The major role of the frontal lobes is the regulation of >>behavior. >Deficits in frontal lobe processing include: >> > >> > * >> > >> > >> > Problems of Starting--This may manifest as decreased >>spontaneity >> > and initiation. Such individuals seem to lack motivation >>and may >> > sit silently without apparent interest in or curiosity >>about >> > * surroundings until they are directed to do something. >> > Difficulties in Making Mental or Behavioral Shifts--This >>includes >> > rigidity or perseveration on a single idea or a single >>action. >Individuals with these problems may be able to >>successfully >> > verbalize solutions to problems, including plans necessary >>to meet >> > goals successfully, yet be unable to put any plan into >>effective >> > * action. >> > Difficulties with Attention--Individuals with frontal lobe >> > deficits are often captured by extraneous aspects of a >>task. As a >> > result, they may demonstrate behaviors which seem >>irrelevant, even >> > bizarre, to the observer. Because they may be highly >> > distractible, they often seem to shift focus continually, >>never >> > * arriving at a point which seems purposeful. >> > Problems in Stopping--This may manifest as a more general >>deficit >> > in self monitoring. It may present as impulsivity or a >>quickness >> > * to anger or speaking too loudly. >> > Problems with Social Awareness--This category would include >> > deficits in the ability to appreciate the impact one makes >>on >> > others, sometimes resulting in rude or insensitive behavior >>or >> > * with a general lack of apparent concern about social >>conventions. >> > Deficient Self-Awareness--Defective self-criticism may be >> > associated with a tendency to be self-satisfied, to >>experience >> > little or no anxiety, and to fail to appreciate the >>existence and >> > * practical implications of deficits (limited insight). >> > A Concrete Attitude--Some patients with frontal lobe injury >>retain >> > high-level conceptual abilities but demonstrate a >>day-to-day >> > literal-mindedness and loss of perspective. >> > >> >> >> >>mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. >>Chad, >>16, healthy, Caleb, 10, also healthy >> >>_________________________________________________________________ >>Watch LIVE baseball games on your computer with MLB.TV, included >>with MSN >>Premium! >>http://join.msn.com/?page=features/mlb & pgmarket=en-us/go/onm00200439ave/direct/01/ >><http://join.msn.com/?page=features/mlb & pgmarket=en-us/go/onm00200439ave/direct/01/> >> >> >> >>Please contact mito-owner with any problems or >>questions. >> >> >>------------------------------------------------------------------------ >>

[Guest guest]

Thanks Jean

The funny thing is we have doctors letters and no one has ever given any trouble until this year. Colby is MR, and does not look 14. I constantly get asked if he a downsyndrome child, he has dysmorphic features, and is very short. So he does not look like, my most hated word, "normal". But the teacher did call and apoligize after I wrote her a note this morning. She complains when he is at school, that he is off task and blah blah blah. But today she was saying I just love him so much, and I know when you keep him home there is a reason. So I don't know who to believe. I have fought so hard thru the years at our lovely IEP meetings, but now I pick and choose my battles. It is just to hard for me now. I just want him to have the best quality of life, he brings us so much joy, and he really is a smart little guy, he just can't talk. Thanks for your input!

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy> >Reply-To: Mito >To: Mito >Subject: Re: how lack of brain energy impacts behavior/ >Date: Thu, 15 Apr 2004 07:26:52 -0700 > >; > >Maybe your doctor can help you with this by writing a letter to the >PRINCIPAL of your school ...and a copy to the chairperson of your >school district (or whatever you call it down there south of the >Canuck border <grin>) telling them that they can reasonably expect >many absences with Colby as he has severe issues with energy level >caused by his Mitochondrial Disease. He can also tell them that you >are parenting Colby responsibly and your decision making with >respect to school attendance should be respected. He could also >(hehehe) tell them that they are being unreasonable under the >circumstances that they are providing services to a disabled child >and are expected, by law, to provide the least restrictive >environment for Colby! > >I think I would be getting this done sooner rather than later ... >and pre-empt what just could happen .... that this officious school >jerk takes the matter farther and into the hands of the folks who >investigate YOUR parenting. You may also have to assure these folk >that your educational expectations from them are not high from Colby >right now. You feel it is better for him to have social contact, >appropriate to his energy level, than to acheive academically. It >could be that modifying his IEP is a good idea ... to let them off >the hook for his academic acheivement, since they have >accountability standards to meet also! ;-) I believe there are >advocates for disabled children (in your area) who would be willing >to help you through this quagmire and help you with his IEP! I >would wonder, not knowing Colby, if this teacher is feeling >overloaded with a big class of kids and a disabled child. Does she >need assistance with Colby? > >Often this kind of thing is a result of a school "covering their >rear guard" because they are feeling that the IEP is asking too much >from them in terms of acheivement given the attendance!!!! Probably >better to work with them, love because it will reduce *your* stress >level! > >I think you need a HUG! Sometimes the system gets so caught up in >protecting themselves from legal action that they forget that they >are dealing with human beings who have needs ... and, in your case, >special needs! GRRRRRRR! > >Jean > > > >CARRIE CLARK wrote: > >>Thanks for the great e-mail >> >>I am printing it now to give to Colby's teachers. We are having >>all kinds >>of trouble with his teacher.I received a nasty note about his >>absents. Never has any teacher questioned this. They threatened to >>report this to the >>state of KS District Attorney. Let them try! They want a doctors >>note for >>every absence. I told the Vice-Principal that when it is snowy and >>Icy I do >>not send him, I don't call the Doctor for that, I told him when >>Colby is too >>tired to get out of bed, I don't call the Dr, for that, and etc. >>etc... You >>guys know what I mean. So O I am really bummed and my anxiety >>level is at >>an all time HIGH! He has missed 39 out of 60 days of semester. I >>told them >>maybe Colby should not be going at all. So back to the IEP table. >>Sorry to >>unload. >> >>Colby's mom >> >> >> > >> >Reply-To: Mito >> >To: mito <Mito > >> >Subject: how lack of brain energy impacts behavior >> >Date: Tue, 30 Mar 2004 17:04:40 -0600 >> > >> >I am including some info that I shared with Evan's teachers about >>the >> >impact of mitochondrial disorders on different areas of the >>brain. This >> >information helped me to understand how Evan's lack of energy >>impacts his >> >brain functioning and behavior. The basal ganglia, the frontal >>lobe, and >> >the temporal lobe are the three areas of the brain that are >>especially >> >vulnerable. After reading the info, his teachers really >>appreciated how >> >important it is for Evan to avoid fatigue. >> > >> >1. Problems with the basal ganglia often present with tremulous, >>perhaps >> >illegible handwriting, soft monotone rapid speech, headaches, >>and/or >> >anxiety. >> > >> >2. Functions of the frontal lobe that are often impacted include >>impulse >> >control and the ability to deal with frustration, decision making >>and >> >planning, and maintaining attention to relevant tasks. >> > >> >3. The temporal lobe is important in language development and >>personal >> >social interaction. Hypergraphia (a tendency toward compulsive >>and >> >extensive writing) has also been reported in temporal lobe >>disorders. >> > >> > >> > >> >P.S. Here are two excerpts from websites on temporal lobe and >>frontal lobe >> >dysfunction that you might find interesting-- >> > >> >"Some of my temporal lobe patients spend hours and hours writing. >> One >> >patient, who moved to another state, used to write me 20 and 30 >>page >> >letters, detailing all of the aspects of her life. As I learned >>about >> >temporal lobe hypergraphia and had her treated with >>anticonvulsant >> >medication her letters became more coherent and were shortened to >>2 to 3 >> >page, saying the same information. " >> > >> >The major role of the frontal lobes is the regulation of >>behavior. >Deficits in frontal lobe processing include: >> > >> > * >> > >> > >> > Problems of Starting--This may manifest as decreased >>spontaneity >> > and initiation. Such individuals seem to lack motivation >>and may >> > sit silently without apparent interest in or curiosity >>about >> > * surroundings until they are directed to do something. >> > Difficulties in Making Mental or Behavioral Shifts--This >>includes >> > rigidity or perseveration on a single idea or a single >>action. >Individuals with these problems may be able to >>successfully >> > verbalize solutions to problems, including plans necessary >>to meet >> > goals successfully, yet be unable to put any plan into >>effective >> > * action. >> > Difficulties with Attention--Individuals with frontal lobe >> > deficits are often captured by extraneous aspects of a >>task. As a >> > result, they may demonstrate behaviors which seem >>irrelevant, even >> > bizarre, to the observer. Because they may be highly >> > distractible, they often seem to shift focus continually, >>never >> > * arriving at a point which seems purposeful. >> > Problems in Stopping--This may manifest as a more general >>deficit >> > in self monitoring. It may present as impulsivity or a >>quickness >> > * to anger or speaking too loudly. >> > Problems with Social Awareness--This category would include >> > deficits in the ability to appreciate the impact one makes >>on >> > others, sometimes resulting in rude or insensitive behavior >>or >> > * with a general lack of apparent concern about social >>conventions. >> > Deficient Self-Awareness--Defective self-criticism may be >> > associated with a tendency to be self-satisfied, to >>experience >> > little or no anxiety, and to fail to appreciate the >>existence and >> > * practical implications of deficits (limited insight). >> > A Concrete Attitude--Some patients with frontal lobe injury >>retain >> > high-level conceptual abilities but demonstrate a >>day-to-day >> > literal-mindedness and loss of perspective. >> > >> >> >> >>mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. >>Chad, >>16, healthy, Caleb, 10, also healthy >> >>_________________________________________________________________ >>Watch LIVE baseball games on your computer with MLB.TV, included >>with MSN >>Premium! >>http://join.msn.com/?page=features/mlb & pgmarket=en-us/go/onm00200439ave/direct/01/ >><http://join.msn.com/?page=features/mlb & pgmarket=en-us/go/onm00200439ave/direct/01/> >> >> >> >>Please contact mito-owner with any problems or >>questions. >> >> >>------------------------------------------------------------------------ >>