CPT-1

[Guest guest]

Hi,my name is Ben, I'm new here and we have a problem we'd like to

discuss with the group. Our bqaby boy, David was taken from us in June

of this year from the hospital. He was medevac'd on the 1st and taken

from the hosptial on the 3rd two days later when he was still being

treated for vomiting, breath8ing problems and seizures. Only after my

daughter signed medical release papers, they claimed that our son was

not fed for 36 hours at least. The doctor diagnosed him as CPT-1 in

January of 2008. Now, our baby was fed similac, then changed to

Enfamil this summer, as there was a change in contract with the WIC

program, or was it because of the contamination of baby formula? In

any case, we would like our baby boy retured unscathed from these

peoples grip. Can anyone help? Thanks. Ben and Daisy Henry

[Guest guest]

Ben please can you give us a few more details regarding the diagnosis of

your son and details about the abbreviations for those of us who may not be

au fait with the terminology and also give us an idea of who has taken him

and precisely why this has happened and whereabouts you live? Are we to

gather that you have been accused of not feeding him for 36 hours? If you

could take it step by step it would be clearer for us to understand exactly

what has happened.

 

Best,

 

Jane

 

" Qapuk " <cranium_stretched

 

 

Hi,my name is Ben, I'm new here and we have a problem we'd like to

discuss with the group. Our bqaby boy, David was taken from us in June

of this year from the hospital. He was medevac'd on the 1st and taken

from the hosptial on the 3rd two days later when he was still being

treated for vomiting, breath8ing problems and seizures. Only after my

daughter signed medical release papers, they claimed that our son was

not fed for 36 hours at least. The doctor diagnosed him as CPT-1 in

January of 2008. Now, our baby was fed similac, then changed to

Enfamil this summer, as there was a change in contract with the WIC

program, or was it because of the contamination of baby formula? In

any case, we would like our baby boy retured unscathed from these

peoples grip. Can anyone help? Thanks. Ben and Daisy Henry

[Guest guest]

Genetic Fact Sheets for Parents

Fatty Acid Oxidation Disorders

 

Disorder Name: Carnitine palmitoyl transferase deficiency, type 1AAcronym: CPT-1A

 

What is CPT-1A deficiency? What causes CPT-1A deficiency? If CPT-1A deficiency is not treated, what problems occur? What is the treatment for CPT-1A deficiency? What happens when CPT-1A deficiency is treated? What causes the CPT-1A enzyme to be absent or not working correctly? How is CPT-1A deficiency inherited? Is there genetic testing available? What other testing is available? Can you test during pregnancy? Can other members of the family have CPT-1A deficiency or be carriers? Can other family members be tested? How many people have CPT-1A deficiency? Does CPT-1A deficiency happen more often in a certain ethnic group? Does CPT-1A deficiency go by any other names? Where can I find more information?

This fact sheet contains general information about CPT-1A deficiency. Every child is different and some of this information may not apply to your child specifically. Not all is known about CPT-1A deficiency and, at present, there is no standard treatment plan. Certain treatments may be recommended for some children but not others. Children with CPT-1A deficiency should be followed by a metabolic doctor in addition to their primary doctor.

What is CPT-1A deficiency?CPT-1A deficiency stands for “carnitine palmitoyl transferase - type 1A deficiency”. It is one type of fatty acid oxidation disorder. People with CPT-1A deficiency have problems breaking down fat into energy for the body.

 

 

 

 

Fatty Acid Oxidation Disorders:

Fatty acid oxidation disorders (FAODs) are a group of rare inherited conditions. They are caused by enzymes that do not work properly.

A number of enzymes are needed to break down fats in the body (a process called fatty acid oxidation). Problems with any of these enzymes can cause a fatty acid oxidation disorder. People with FAODs cannot properly break down fat from either the food they eat or from fat stored in their bodies.

The symptoms and treatment vary between different FAODs. They can also vary from person to person with the same FAOD. See the fact sheets for each specific FAOD.

FAODs are inherited in an autosomal recessive manner and affect both males and females.

What causes CPT-1A?CPT-1A deficiency occurs when an enzyme, called “carnitine palmitoyl transferase 1A” (CPT-1A) is either missing or not working properly. This enzyme’s job is to help change certain fats in the food we eat into energy. It also helps break down fat already stored in the body. This is what he is diagnosed to have. Ok, we are Inupiaq ( Alaskan Eskimo) our daughter conceived a baby boy in September of 07. He was given to my wife and I at birth. He was in the hosptial twice before for pnumonia. This time, in june of this year, he was admitted into the emergency room for difficulty breathing, vomiting and seizures. While my wife was spoon feeding him, two agents from the Office of Children's Services came into the room and demanded the baby be turned over to them as they were taking emergency

custody of him. My wife refused, they came back with a policman and threatened to arrest her if she did not give up the baby. My wife fears jail so she gave him up. I'm not usre of the time span of his diagnosis, but they claim that we knew about his condition, we didn't. We have been through a few court hearings without assistance of counsel, now they threw my wife and I and my daughter, the mother of the baby out of further court hearings. I suppose they can't and won't answer my brief, in fact, the judge made her own recommendation to take us out of the future court hearings. I'm not sure what is happening now since we are not involved in the legal battle for our son. We need prayers and mor prayers. Thank you for responding. Ben and Daisy Henry--- On Sun, 11/30/08, Jane MacRoss <highfield1 wrote:

Jane MacRoss <highfield1Re: CPT-1 Date: Sunday, November 30, 2008, 9:22 PM

 

 

Ben please can you give us a few more details regarding the diagnosis of your son and details about the abbreviations for those of us who may not be au fait with the terminology and also give us an idea of who has taken him and precisely why this has happened and whereabouts you live? Are we to gather that you have been accused of not feeding him for 36 hours? If you could take it step by step it would be clearer for us to understand exactly what has happened.Best,Jane"Qapuk" <cranium_stretched@ >Hi,my name is Ben, I'm new here and we have a problem we'd like todiscuss with the group. Our bqaby boy, David was taken from us in Juneof this year from the hospital. He was medevac'd on the 1st and takenfrom the hosptial on the 3rd two days later when he was still beingtreated for

vomiting, breath8ing problems and seizures. Only after mydaughter signed medical release papers, they claimed that our son wasnot fed for 36 hours at least. The doctor diagnosed him as CPT-1 inJanuary of 2008. Now, our baby was fed similac, then changed toEnfamil this summer, as there was a change in contract with the WICprogram, or was it because of the contamination of baby formula? Inany case, we would like our baby boy retured unscathed from thesepeoples grip. Can anyone help? Thanks. Ben and Daisy Henry

[Guest guest]

Yes I will certainly have as many people praying for you and your baby - write to me privately if you wish with more details - miracles will not happen without prayer.

 

Best,

 

Jane

 

-

ben jackson

Monday, December 01, 2008 5:46 PM

Re: CPT-1

 

 

 

 

 

 

 

 

 

Genetic Fact Sheets for Parents

Fatty Acid Oxidation Disorders

 

Disorder Name: Carnitine palmitoyl transferase deficiency, type 1AAcronym: CPT-1A

 

What is CPT-1A deficiency? What causes CPT-1A deficiency? If CPT-1A deficiency is not treated, what problems occur? What is the treatment for CPT-1A deficiency? What happens when CPT-1A deficiency is treated? What causes the CPT-1A enzyme to be absent or not working correctly? How is CPT-1A deficiency inherited? Is there genetic testing available? What other testing is available? Can you test during pregnancy? Can other members of the family have CPT-1A deficiency or be carriers? Can other family members be tested? How many people have CPT-1A deficiency? Does CPT-1A deficiency happen more often in a certain ethnic group? Does CPT-1A deficiency go by any other names? Where can I find more information?

This fact sheet contains general information about CPT-1A deficiency. Every child is different and some of this information may not apply to your child specifically. Not all is known about CPT-1A deficiency and, at present, there is no standard treatment plan. Certain treatments may be recommended for some children but not others. Children with CPT-1A deficiency should be followed by a metabolic doctor in addition to their primary doctor.

What is CPT-1A deficiency?CPT-1A deficiency stands for “carnitine palmitoyl transferase - type 1A deficiency”. It is one type of fatty acid oxidation disorder. People with CPT-1A deficiency have problems breaking down fat into energy for the body.

 

 

 

 

Fatty Acid Oxidation Disorders:

Fatty acid oxidation disorders (FAODs) are a group of rare inherited conditions. They are caused by enzymes that do not work properly.

A number of enzymes are needed to break down fats in the body (a process called fatty acid oxidation). Problems with any of these enzymes can cause a fatty acid oxidation disorder. People with FAODs cannot properly break down fat from either the food they eat or from fat stored in their bodies.

The symptoms and treatment vary between different FAODs. They can also vary from person to person with the same FAOD. See the fact sheets for each specific FAOD.

FAODs are inherited in an autosomal recessive manner and affect both males and females.

What causes CPT-1A?CPT-1A deficiency occurs when an enzyme, called “carnitine palmitoyl transferase 1A” (CPT-1A) is either missing or not working properly. This enzyme’s job is to help change certain fats in the food we eat into energy. It also helps break down fat already stored in the body. This is what he is diagnosed to have. Ok, we are Inupiaq ( Alaskan Eskimo) our daughter conceived a baby boy in September of 07. He was given to my wife and I at birth. He was in the hosptial twice before for pnumonia. This time, in june of this year, he was admitted into the emergency room for difficulty breathing, vomiting and seizures. While my wife was spoon feeding him, two agents from the Office of Children's Services came into the room and demanded the baby be turned over to them as they were taking emergency custody of him. My wife refused, they came back with a policman and threatened to arrest her if she did not give up the baby. My wife fears jail so she gave him up. I'm not usre of the time span of his diagnosis, but they claim that we knew about his condition, we didn't. We have been through a few court hearings without assistance of counsel, now they threw my wife and I and my daughter, the mother of the baby out of further court hearings. I suppose they can't and won't answer my brief, in fact, the judge made her own recommendation to take us out of the future court hearings. I'm not sure what is happening now since we are not involved in the legal battle for our son. We need prayers and mor prayers. Thank you for responding. Ben and Daisy Henry--- On Sun, 11/30/08, Jane MacRoss <highfield1 wrote:

Jane MacRoss <highfield1Re: CPT-1 Date: Sunday, November 30, 2008, 9:22 PM

 

 

Ben please can you give us a few more details regarding the diagnosis of your son and details about the abbreviations for those of us who may not be au fait with the terminology and also give us an idea of who has taken him and precisely why this has happened and whereabouts you live? Are we to gather that you have been accused of not feeding him for 36 hours? If you could take it step by step it would be clearer for us to understand exactly what has happened.Best,Jane"Qapuk" <cranium_stretched@ >Hi,my name is Ben, I'm new here and we have a problem we'd like todiscuss with the group. Our bqaby boy, David was taken from us in Juneof this year from the hospital. He was medevac'd on the 1st and takenfrom the hosptial on the 3rd two days later when he was still beingtreated for vomiting, breath8ing problems and seizures. Only after mydaughter signed medical release papers, they claimed that our son wasnot fed for 36 hours at least. The doctor diagnosed him as CPT-1 inJanuary of 2008. Now, our baby was fed similac, then changed toEnfamil this summer, as there was a change in contract with the WICprogram, or was it because of the contamination of baby formula? Inany case, we would like our baby boy retured unscathed from thesepeoples grip. Can anyone help? Thanks. Ben and Daisy Henry

 

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.12/1821 - Release 11/30/2008 5:53 PM

[Guest guest]

Ben what recourse do you have to legal aid? And why were you banned / thown out from further court discussions?

 

Clare in Tasmania

 

-

[Guest guest]

We told the court judge that we were on the world internet and they immediately cut us off.--- On Mon, 12/1/08, Clare@GOOGLE MAIL <theclaremcharris wrote:

Clare@GOOGLE MAIL <theclaremcharrisRe: CPT-1 Date: Monday, December 1, 2008, 9:37 PM

 

 

 

Ben what recourse do you have to legal aid? And why were you banned / thown out from further court discussions?

 

Clare in Tasmania

 

-

[Guest guest]

Let me clarify. We are Eskimo and the Indian Child Welfare Act says that a native child has to be returned to the native people. The OCS attorney's wants us, the grandparents to be disenfranchised from this case so that they can overrun my daughter who is diagnosed with A.D.D. . I do have the discovery cd that the OCS sent us, I was told that the Discovery has no probable cause for taking our child. The OCS lied when they told the court that our baby boy had no one in the village that wanted him or was qualified to take him, so they sent him to fairbanks to a non native home. I met the foster mother, she is a black woman, seems nice, but the point is, we want him home where he belongs. thanks for asking. Legal Aid? We don't have legal aid, but we do have legal recourse, and that is a kidnaping charge in

federal court.--- On Mon, 12/1/08, Clare@GOOGLE MAIL <theclaremcharris wrote:

Clare@GOOGLE MAIL <theclaremcharrisRe: CPT-1 Date: Monday, December 1, 2008, 9:37 PM

 

 

 

Ben what recourse do you have to legal aid? And why were you banned / thown out from further court discussions?

 

Clare in Tasmania

 

-

[Guest guest]

and Ben.... what help are you receiving via legal aid..... a solicitor? someone to represent you in your absence?

Do you know where your child is currently being held?

 

 

 

 

 

We told the court judge that we were on the world internet and they immediately cut us off.

 

 

 

 

Ben what recourse do you have to legal aid? And why were you banned / thown out from further court discussions?

 

Clare in Tasmania

 

-

[Guest guest]

I hope that you do follow up even if it means going to federal court

and sueing the state. Florida tried to do that to my family. I stood

up to them and finally got a judge that told CPS to leave me and my

family alone and to NEVER contact us again, unless it was through our

lawyers. A child belongs with it's family especially in your case so

that you can teach him cultural/heritage history. Something the other

lady wouldn't put her heart into it. I wish you the best and you and

yours will be in my prayers. Folks who think they know things hate it

when us educated folks do our research and make u our own minds.

 

Diann