Changes in behavior with co-factors?

[Guest guest]

Whitney

this happened to us pretty much. Although I don't think we had agression but we definitely have what I named 'negative energy' and we didn't see any health benefits. We didn't stay on them very long. However, Carnitor, was very helpful for him.

One thing you might think about is trying him off for a while and seeing what happens with the behaviors because is it not uncommon for mito kids to end up on the autism spectrum. So its possible the behaviors are mito related. So I would do a trial off and if they go away then keep him off CoQ. If they stay then you might considered talking with his early intervention team about writing behavior goals.

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!

[Guest guest]

We just started the co-factors about six weeks ago, and to tell you

the truth, other than diarrhea, I haven't noticed much of a positive

difference in our one-year-old. The main difference I have noted is

he is much more aggressive. He went from being a very cautious,

tentative baby to hitting, pulling hair, and throwing temper

tantrums. He is just 13 months, so while I know this is typical

toddler behavior, it seems very early and quite severe (especially

for a child who was very calm). It has gotten to where I cannot

leave the room if he's with his 3 year old sister, because he will

get into some sort of confrontation with her where he winds up

hurting her. He has pulled chunks of hair out of her head and thinks

it's funny.

The only thing I can figure is that this behavior began showing up

with the addition of the co-factors (he has been on Carnitor since

June and has had no problems with that). I did speak to the

pharmacist who said aggressive behavior can be common because of

increase of energy levels. But I haven't really noticed his energy

increased in other ways--just in this very unpleasant way. Has

anyone else experienced this? I am thinking of taking him off the

medication as he seems to be doing well currently and perhaps re-

start it the next time he gets sick (knock on everything, he's been

well for the last few weeks).

Thanks in advance for your answers/experiences.

Whitney

mom to --complex I/FOD

[Guest guest]

Too much too soon- I would say the dosages are too high- and his body has no clue what to do with it. Cindy-GA

Changes in behavior with co-factors?

We just started the co-factors about six weeks ago, and to tell youthe truth, other than diarrhea, I haven't noticed much of a positivedifference in our one-year-old. The main difference I have noted ishe is much more aggressive. He went from being a very cautious,tentative baby to hitting, pulling hair, and throwing tempertantrums. He is just 13 months, so while I know this is typicaltoddler behavior, it seems very early and quite severe (especiallyfor a child who was very calm). It has gotten to where I cannotleave the room if he's with his 3 year old sister, because he willget into some sort of confrontation with her where he winds uphurting her. He has pulled chunks of hair out of her head and thinksit's funny.The only thing I can figure is that this behavior began showing upwith the addition of the co-factors (he has been on Carnitor sinceJune and has had no problems with that). I did speak to thepharmacist who said aggressive behavior can be common because ofincrease of energy levels. But I haven't really noticed his energyincreased in other ways--just in this very unpleasant way. Hasanyone else experienced this? I am thinking of taking him off themedication as he seems to be doing well currently and perhaps re-start it the next time he gets sick (knock on everything, he's beenwell for the last few weeks).Thanks in advance for your answers/experiences.Whitneymom to --complex I/FOD

[Guest guest]

There are geneticists and others in the medical field who feel there is a link

between autism and mitochondrial disorders. My cousin is autistic and his

parents(his dad is my first cousin) is part of a research study being done at

Duke. I was at an autism fund raiser this weekend and there were people there

talking about it too. There are private labs who are now pursuing this research.

Jill Fisch

SCAD Family

Edgemont, NY

Re: Changes in behavior with co-factors?

The DSMV for autism does not allow for physical/neurological/ genetic as causes

right at the moment. So, if you have a problem such as mito, or epilepsy or

brain atrophy, you cannot be autistic. You can have autistic like behaviors, but

not autism. Carnitine deficiency can cause autistic like behaviors for example.

" Similar Disorders: There are also a number of other disorders that can

sometimes mimic autism and can cause misdiagnoses to occur. Unlike autism,

many of those other conditions and disorders are curable. Some of these

include: early childhood trauma, deafness, glactosemia, Heller’s Disease, LKS,

PKU, Tourette’s Syndrome, obsessive-compulsive disorder, schizophrenia,

semantic-pragmatic speech disorder, childhood aphasia, Celiac’s disease,

fragile-x syndrome, ADD and ADHD, hyperlexia, manic depression (bi-polar

disorder), Angelman syndrome, -Magenis Syndrome, developmental apraxia of

speech, lactic acidosis, Irlen Syndrom, ’s syndrome, Carnitine

deficiency, and numerous others may cause some or most of the symptoms that

are seen in autism. You should be careful to make sure that these other

possibilities are ruled out when a diagnosis of autism is considered. "

Cindy-GA

Re: Changes in behavior with co-factors?

Whitney

this happened to us pretty much. Although I don't think we had agression but

we definitely have what I named 'negative energy' and we didn't see any health

benefits. We didn't stay on them very long. However, Carnitor, was very

helpful for him.

One thing you might think about is trying him off for a while and seeing what

happens with the behaviors because is it not uncommon for mito kids to end up

on the autism spectrum. So its possible the behaviors are mito related. So I

would do a trial off and if they go away then keep him off CoQ. If they stay

then you might considered talking with his early intervention team about

writing behavior goals.

deb...mom to three great kids and wife to one amazing guy!

http://www.lifeofloveproject.org/

http://www.heartliftersgallery.com/

Crazy Lizzies!! PURSES!

Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions.

[Guest guest]

The DSMV for autism does not allow for physical/neurological/ genetic as causes right at the moment. So, if you have a problem such as mito, or epilepsy or brain atrophy, you cannot be autistic. You can have autistic like behaviors, but not autism. Carnitine deficiency can cause autistic like behaviors for example.

"Similar Disorders: There are also a number of other disorders that can sometimes mimic autism and can cause misdiagnoses to occur. Unlike autism, many of those other conditions and disorders are curable. Some of these include: early childhood trauma, deafness, glactosemia, Heller’s Disease, LKS, PKU, Tourette’s Syndrome, obsessive-compulsive disorder, schizophrenia, semantic-pragmatic speech disorder, childhood aphasia, Celiac’s disease, fragile-x syndrome, ADD and ADHD, hyperlexia, manic depression (bi-polar disorder), Angelman syndrome, -Magenis Syndrome, developmental apraxia of speech, lactic acidosis, Irlen Syndrom, ’s syndrome, Carnitine deficiency, and numerous others may cause some or most of the symptoms that are seen in autism. You should be careful to make sure that these other possibilities are ruled out when a diagnosis of autism is considered. "

Cindy-GA

Re: Changes in behavior with co-factors?

Whitney

this happened to us pretty much. Although I don't think we had agression but we definitely have what I named 'negative energy' and we didn't see any health benefits. We didn't stay on them very long. However, Carnitor, was very helpful for him.

One thing you might think about is trying him off for a while and seeing what happens with the behaviors because is it not uncommon for mito kids to end up on the autism spectrum. So its possible the behaviors are mito related. So I would do a trial off and if they go away then keep him off CoQ. If they stay then you might considered talking with his early intervention team about writing behavior goals.

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!Please contact mito-owner with any problems or questions.

[Guest guest]

Yes I know. My children are involved with Yale, and The Congressional Committee for Autism. But, as the DSMV stands right now, that is not what is stated. Problem is, some kids with mito develop these behaviors , some don't. Some with autism respond to GFCF diet, some don't. Some have perfectly normal panels, perfect chromosomes, some don't. There are subsets upon subsets, and some doctors lump them all together due to "behaviors". Apraxic kids with speech delays are often misdiagnosed as autistic as well.

Cindy-GA

Re: Changes in behavior with co-factors? Whitney this happened to us pretty much. Although I don't think we had agression but we definitely have what I named 'negative energy' and we didn't see any health benefits. We didn't stay on them very long. However, Carnitor, was very helpful for him. One thing you might think about is trying him off for a while and seeing what happens with the behaviors because is it not uncommon for mito kids to end up on the autism spectrum. So its possible the behaviors are mito related. So I would do a trial off and if they go away then keep him off CoQ. If they stay then you might considered talking with his early intervention team about writing behavior goals. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Have you heard anything about the study at Duke? Maybe that could help you too.

If you are interested I can find out about it. Jill

Re: Changes in behavior with co-factors?

Yes I know. My children are involved with Yale, and The Congressional Committee

for Autism. But, as the DSMV stands right now, that is not what is stated.

Problem is, some kids with mito develop these behaviors , some don't. Some with

autism respond to GFCF diet, some don't. Some have perfectly normal panels,

perfect chromosomes, some don't. There are subsets upon subsets, and some

doctors lump them all together due to " behaviors " . Apraxic kids with speech

delays are often misdiagnosed as autistic as well.

Cindy-GA

Re: Changes in behavior with co-factors?

Whitney

this happened to us pretty much. Although I don't think we had agression

but we definitely have what I named 'negative energy' and we didn't see any

health benefits. We didn't stay on them very long. However, Carnitor, was

very helpful for him.

One thing you might think about is trying him off for a while and seeing

what happens with the behaviors because is it not uncommon for mito kids to

end up on the autism spectrum. So its possible the behaviors are mito

related. So I would do a trial off and if they go away then keep him off

CoQ. If they stay then you might considered talking with his early

intervention team about writing behavior goals.

deb...mom to three great kids and wife to one amazing guy!

http://www.lifeofloveproject.org/

http://www.heartliftersgallery.com/

Crazy Lizzies!! PURSES!

Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions.

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[Guest guest]

I have heard about it- my 12 yr. old was one who was misdiagnosed originally. I kept pushing for answers- he has atypical Partial Complex 1 w/secondary carnitine deficiency. If his older brother had not developed a hand tremor @ puberty, I may have never gotten a correct Dx. It is amazing what a bit of carnitine can do!

Cindy-GA

Re: Changes in behavior with co-factors? Whitney this happened to us pretty much. Although I don't think we had agression but we definitely have what I named 'negative energy' and we didn't see any health benefits. We didn't stay on them very long. However, Carnitor, was very helpful for him. One thing you might think about is trying him off for a while and seeing what happens with the behaviors because is it not uncommon for mito kids to end up on the autism spectrum. So its possible the behaviors are mito related. So I would do a trial off and if they go away then keep him off CoQ. If they stay then you might considered talking with his early intervention team about writing behavior goals. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES!Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor ADVERTISEMENT Yahoo! Groups Links To visit your group on the web, go to:http://groups.yahoo.com/group/Mito/ To unsubscribe from this group, send an email to:Mito-unsubscribe Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Sent via BlackBerry - a service from AT & T Wireless.