Guest guest Posted May 12, 1998 Report Share Posted May 12, 1998 Jackie, will get it immediately. I have talked to Connie about studies they did in correctional institutions with kids and grown-ups with foods and the results they had but the state would not allow that sort of help. I really think they don't want to loose money just like the studies they've done in mental institutions with the same results. It is sad. Thanks for the book info as it will make it a concrete thing. Re: Amy's Dementia history >> >>In a message dated 99-05-11 17:14:05 EDT, you write: >> >><< Hi Lynnie, If you don't mind, could you explain your daughters dementia >>(how >> and when it began)? >> Thanks Becky-daughter 16 mito. disease >> >> >>Dear Becky: >> >>I'd be happy to explain what I can... >> >>Amy was born on her due date. " By the book " baby for the first three >months. >> Then each time she had injections she would become very ill and extreamly >>lathargic. By seven months Amy's schedual had turned upside down and she >>would cry for hours as if someone where sticking pins in her. >> >>Between 7 and 11 months Amy had muscle episodes where her muscles would >lock >>up for an hour or so. Amy was behind developmentally. At 11 months Amy >had >>a feaver and was just coming down from a flue-like episode when she had a >>Generalised seizure... the first of millions! By 5 years old she was >having >>seizures AND " parkinsonisums " so her doc put her on L-dopa. >> >>At 11 years the L-dopa didn't cover the parkinsonisums any more and the >>Neuro. put her on Sinamet thinking it would cover more areas of her brain. >>It worked for a while. Then in the summer after sixth grade we noticed a >few >>strange things. Amy was becoming aggressive, argumenative, contrary. Her >>reading (up until then she was a vorashous reader) stopped all together as >>well, her grades dropped, she couldnt concentrate. It seemed like much of >>this could be attributed to adolesence! >>By the end of her freshman year in High School her teacher called us and >told >>us that she had called in the school Psych., and that Amy was telling them >>that the walls were talking to her! This was definently NOT adolesence! >> >>At home Amy started kicking me in the back when I wasn't looking. She >would >>chase and hit her younger sibs and bonk them on the head for no reason. She >>would leave the house when we wern't looking and get lost. We'd find her a >>block away at the Elementry school in a daze. >> >>One day at about 14 years old we were at a Neuro apt and and the Neuro left >>the room. Amy got mad for no reason (typical of her mind set at the time) >>and Amy turned over a metal tray. When the Neuro heard it she came >running, >>asked me how long that had been going on, asked Amy a few questions to see >>how " current " her thinking was. Well, it wasn't very current. At times >she >>knew who I was and at times she didnt and many other symptoms! The Neuro >had >>a nurse take Amy out for a soda while she informed me that Amy had >>third-stage dementia. She put Amy on hospice services so that we could get >a >>break twice a week and had some help around the house. >> >>Currently, Amy's dementia is managed by a combination of melarill and >>cogentin as well as a VERY protected environment. We have learned what >sets >>Amy's dementia into a tail spin... we avoid going out into public where >there >>is a croud, going into restarants that have a " din " or lots of echo and >>noise, we keep Amy and her two younger sibs (who are Fetal Alcohol Syndrome >>children that we adopted as infants) >>at a distance when they get particularly loud, and we make sure she has >>regular meals with ballenced snacks between. >> >>Well, I hope this has been of some help to you. Feel free to ask >questions! >>Is this similar to your experence? >> >>Lynnie >> >> >> >>__________________________________________________________________________ _ >____ >>__________________________________________________________________________ _ >____ >> > > >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " >http://www.ONElist.com >See homepage for details. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Dear : without writing multi-pages of background, let me recommend a little book called FOOD & BEAHVIOUR by Barbara Stitt . It is $10 bucks and they ship quickly. Her husband is a research biochemist and she was a probabtion officer for many years. I am a nutritionist and I have not read anything that so clearly articulates the relationship between food and behaviour. Our prayers are with you. I, too, am a grandmother who had to raise grandchildren for several years due to very difficult family situation. It is heart wrenching but please do not give up. Each child is worth all that we can give it. This book is an easy read and will give you some clinical ammunition to use with family members as well as direction for dealing with these outbursts. You're not alone in this struggle, Jackie Re: Amy's Dementia history > >In a message dated 99-05-11 17:14:05 EDT, you write: > ><< Hi Lynnie, If you don't mind, could you explain your daughters dementia >(how > and when it began)? > Thanks Becky-daughter 16 mito. disease >> > >Dear Becky: > >I'd be happy to explain what I can... > >Amy was born on her due date. " By the book " baby for the first three months. > Then each time she had injections she would become very ill and extreamly >lathargic. By seven months Amy's schedual had turned upside down and she >would cry for hours as if someone where sticking pins in her. > >Between 7 and 11 months Amy had muscle episodes where her muscles would lock >up for an hour or so. Amy was behind developmentally. At 11 months Amy had >a feaver and was just coming down from a flue-like episode when she had a >Generalised seizure... the first of millions! By 5 years old she was having >seizures AND " parkinsonisums " so her doc put her on L-dopa. > >At 11 years the L-dopa didn't cover the parkinsonisums any more and the >Neuro. put her on Sinamet thinking it would cover more areas of her brain. >It worked for a while. Then in the summer after sixth grade we noticed a few >strange things. Amy was becoming aggressive, argumenative, contrary. Her >reading (up until then she was a vorashous reader) stopped all together as >well, her grades dropped, she couldnt concentrate. It seemed like much of >this could be attributed to adolesence! >By the end of her freshman year in High School her teacher called us and told >us that she had called in the school Psych., and that Amy was telling them >that the walls were talking to her! This was definently NOT adolesence! > >At home Amy started kicking me in the back when I wasn't looking. She would >chase and hit her younger sibs and bonk them on the head for no reason. She >would leave the house when we wern't looking and get lost. We'd find her a >block away at the Elementry school in a daze. > >One day at about 14 years old we were at a Neuro apt and and the Neuro left >the room. Amy got mad for no reason (typical of her mind set at the time) >and Amy turned over a metal tray. When the Neuro heard it she came running, >asked me how long that had been going on, asked Amy a few questions to see >how " current " her thinking was. Well, it wasn't very current. At times she >knew who I was and at times she didnt and many other symptoms! The Neuro had >a nurse take Amy out for a soda while she informed me that Amy had >third-stage dementia. She put Amy on hospice services so that we could get a >break twice a week and had some help around the house. > >Currently, Amy's dementia is managed by a combination of melarill and >cogentin as well as a VERY protected environment. We have learned what sets >Amy's dementia into a tail spin... we avoid going out into public where there >is a croud, going into restarants that have a " din " or lots of echo and >noise, we keep Amy and her two younger sibs (who are Fetal Alcohol Syndrome >children that we adopted as infants) >at a distance when they get particularly loud, and we make sure she has >regular meals with ballenced snacks between. > >Well, I hope this has been of some help to you. Feel free to ask questions! >Is this similar to your experence? > >Lynnie > > > >___________________________________________________________________________ ____ >___________________________________________________________________________ ____ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Dear : without writing multi-pages of background, let me recommend a little book called FOOD & BEAHVIOUR by Barbara Stitt . It is $10 bucks and they ship quickly. Her husband is a research biochemist and she was a probabtion officer for many years. I am a nutritionist and I have not read anything that so clearly articulates the relationship between food and behaviour. Our prayers are with you. I, too, am a grandmother who had to raise grandchildren for several years due to very difficult family situation. It is heart wrenching but please do not give up. Each child is worth all that we can give it. This book is an easy read and will give you some clinical ammunition to use with family members as well as direction for dealing with these outbursts. You're not alone in this struggle, Jackie Re: Amy's Dementia history > >In a message dated 99-05-11 17:14:05 EDT, you write: > ><< Hi Lynnie, If you don't mind, could you explain your daughters dementia >(how > and when it began)? > Thanks Becky-daughter 16 mito. disease >> > >Dear Becky: > >I'd be happy to explain what I can... > >Amy was born on her due date. " By the book " baby for the first three months. > Then each time she had injections she would become very ill and extreamly >lathargic. By seven months Amy's schedual had turned upside down and she >would cry for hours as if someone where sticking pins in her. > >Between 7 and 11 months Amy had muscle episodes where her muscles would lock >up for an hour or so. Amy was behind developmentally. At 11 months Amy had >a feaver and was just coming down from a flue-like episode when she had a >Generalised seizure... the first of millions! By 5 years old she was having >seizures AND " parkinsonisums " so her doc put her on L-dopa. > >At 11 years the L-dopa didn't cover the parkinsonisums any more and the >Neuro. put her on Sinamet thinking it would cover more areas of her brain. >It worked for a while. Then in the summer after sixth grade we noticed a few >strange things. Amy was becoming aggressive, argumenative, contrary. Her >reading (up until then she was a vorashous reader) stopped all together as >well, her grades dropped, she couldnt concentrate. It seemed like much of >this could be attributed to adolesence! >By the end of her freshman year in High School her teacher called us and told >us that she had called in the school Psych., and that Amy was telling them >that the walls were talking to her! This was definently NOT adolesence! > >At home Amy started kicking me in the back when I wasn't looking. She would >chase and hit her younger sibs and bonk them on the head for no reason. She >would leave the house when we wern't looking and get lost. We'd find her a >block away at the Elementry school in a daze. > >One day at about 14 years old we were at a Neuro apt and and the Neuro left >the room. Amy got mad for no reason (typical of her mind set at the time) >and Amy turned over a metal tray. When the Neuro heard it she came running, >asked me how long that had been going on, asked Amy a few questions to see >how " current " her thinking was. Well, it wasn't very current. At times she >knew who I was and at times she didnt and many other symptoms! The Neuro had >a nurse take Amy out for a soda while she informed me that Amy had >third-stage dementia. She put Amy on hospice services so that we could get a >break twice a week and had some help around the house. > >Currently, Amy's dementia is managed by a combination of melarill and >cogentin as well as a VERY protected environment. We have learned what sets >Amy's dementia into a tail spin... we avoid going out into public where there >is a croud, going into restarants that have a " din " or lots of echo and >noise, we keep Amy and her two younger sibs (who are Fetal Alcohol Syndrome >children that we adopted as infants) >at a distance when they get particularly loud, and we make sure she has >regular meals with ballenced snacks between. > >Well, I hope this has been of some help to you. Feel free to ask questions! >Is this similar to your experence? > >Lynnie > > > >___________________________________________________________________________ ____ >___________________________________________________________________________ ____ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Dear : without writing multi-pages of background, let me recommend a little book called FOOD & BEAHVIOUR by Barbara Stitt . It is $10 bucks and they ship quickly. Her husband is a research biochemist and she was a probabtion officer for many years. I am a nutritionist and I have not read anything that so clearly articulates the relationship between food and behaviour. Our prayers are with you. I, too, am a grandmother who had to raise grandchildren for several years due to very difficult family situation. It is heart wrenching but please do not give up. Each child is worth all that we can give it. This book is an easy read and will give you some clinical ammunition to use with family members as well as direction for dealing with these outbursts. You're not alone in this struggle, Jackie Re: Amy's Dementia history > >In a message dated 99-05-11 17:14:05 EDT, you write: > ><< Hi Lynnie, If you don't mind, could you explain your daughters dementia >(how > and when it began)? > Thanks Becky-daughter 16 mito. disease >> > >Dear Becky: > >I'd be happy to explain what I can... > >Amy was born on her due date. " By the book " baby for the first three months. > Then each time she had injections she would become very ill and extreamly >lathargic. By seven months Amy's schedual had turned upside down and she >would cry for hours as if someone where sticking pins in her. > >Between 7 and 11 months Amy had muscle episodes where her muscles would lock >up for an hour or so. Amy was behind developmentally. At 11 months Amy had >a feaver and was just coming down from a flue-like episode when she had a >Generalised seizure... the first of millions! By 5 years old she was having >seizures AND " parkinsonisums " so her doc put her on L-dopa. > >At 11 years the L-dopa didn't cover the parkinsonisums any more and the >Neuro. put her on Sinamet thinking it would cover more areas of her brain. >It worked for a while. Then in the summer after sixth grade we noticed a few >strange things. Amy was becoming aggressive, argumenative, contrary. Her >reading (up until then she was a vorashous reader) stopped all together as >well, her grades dropped, she couldnt concentrate. It seemed like much of >this could be attributed to adolesence! >By the end of her freshman year in High School her teacher called us and told >us that she had called in the school Psych., and that Amy was telling them >that the walls were talking to her! This was definently NOT adolesence! > >At home Amy started kicking me in the back when I wasn't looking. She would >chase and hit her younger sibs and bonk them on the head for no reason. She >would leave the house when we wern't looking and get lost. We'd find her a >block away at the Elementry school in a daze. > >One day at about 14 years old we were at a Neuro apt and and the Neuro left >the room. Amy got mad for no reason (typical of her mind set at the time) >and Amy turned over a metal tray. When the Neuro heard it she came running, >asked me how long that had been going on, asked Amy a few questions to see >how " current " her thinking was. Well, it wasn't very current. At times she >knew who I was and at times she didnt and many other symptoms! The Neuro had >a nurse take Amy out for a soda while she informed me that Amy had >third-stage dementia. She put Amy on hospice services so that we could get a >break twice a week and had some help around the house. > >Currently, Amy's dementia is managed by a combination of melarill and >cogentin as well as a VERY protected environment. We have learned what sets >Amy's dementia into a tail spin... we avoid going out into public where there >is a croud, going into restarants that have a " din " or lots of echo and >noise, we keep Amy and her two younger sibs (who are Fetal Alcohol Syndrome >children that we adopted as infants) >at a distance when they get particularly loud, and we make sure she has >regular meals with ballenced snacks between. > >Well, I hope this has been of some help to you. Feel free to ask questions! >Is this similar to your experence? > >Lynnie > > > >___________________________________________________________________________ ____ >___________________________________________________________________________ ____ > Quote Link to comment Share on other sites More sharing options...
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