Re: wikipidea charge syndrome article

[Guest guest]

Chantelle,

GOOD JOB !!!

Casey

________________________________________________________________________________\

____

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[Guest guest]

excellent information. Thank you.

In a message dated 3/22/2007 5:58:55 P.M. Eastern Daylight Time,

tgluvly@... writes:

Thank you so much! This is exactly what I was looking for when I

first heard the words CHARGE syndrome. This is more helpful then most

things I have found.

Thanks again

Trish

Mom of

DeJay - 4

ah - 3

Sammy - Three weeks CHARGEr

>

> On Wikipedia my username is Catfuzz.caliby I made changes to the

> CHARGE syndrome page.

>

>

> CHARGE is a syndrome not an Association. The reason it is called a

> syndrome is because CHARGE syndrome is set of non random symptoms

that

> occur together due to a genetic anomaly. An association, which is

what

> CHARGE was once considered, is a set of random symptoms that appear

to

> occur together.

>

> In 1981, the name " CHARGE " was an easy way to refer to a newly

> recognized set of features seen in a number of children. Over the

> years, it has become clear that CHARGE is indeed a syndrome and at

> least one gene causing CHARGE syndrome has been discovered. The

> letters in CHARGE stand for: Coloboma of the eye, Heart defects,

> Atresia of the choanae, Retardation of growth and/or development,

> Genital and/or urinary abnormalities, and Ear abnormalities and

> deafness. Those features are no longer used in making a diagnosis of

> CHARGE syndrome, but there are no intentions on changing the name.

>

> ==History of CHARGE==

> Dr. B. D. Hall first described the CHARGE association in the journal

> paper he published in 1979. He had studied 17 children who all had a

> choanal atresia. At about the same time Dr. H.M. Hittner also

observed

> that the group of 10 children in their study all had the choanal

> atresia as well as coloboma, congenital heart defect, and hearing

> loss. Using both a coloboma or choanal atresia and some of the other

> related characteristic malformations, Dr. R. A. Pagon first coined

> the term CHARGE. In choosing this acronym, Dr. Pagon intended to

> emphasize that this cluster of associated malformations occurred

> together. In 1981, the name " CHARGE " was an easy way to refer to a

> newly recognized set of features seen in a number of children. Over

> the years, many people believe it was a recognizable syndrome within

> the umbrella of the CHARGE association. Over the years, it has

become

> clear that CHARGE is indeed a syndrome and at least one gene causing

> CHARGE syndrome has been discovered.

>

> ==THERAPIES AND OUTCOME==

> Children with CHARGE syndrome can have many life threatening issues,

> with advance in medical care these children can survive and become

> healthy and happy individuals. Appropriate therapies and educational

> intervention that is given to individuals with CHARGE syndrome must

> take into consideration hearing, vision and any other medical

> conditions that are present. Early intervention, such as

occupational

> and physical therapy is very important as the intelligence of

> children with multiple health issues such as combined deaf blindness

> is often underestimated. Because of the developmental delay, early

> intervention would play an important role in mobility, improving

> static postures, transitioning towards ambulation, and teaching self

> care skills. Both physicians and parents need to be made aware that

> these children can thrive with the support of a team of medical

> professionals. Management should be by a multidisciplinary team and

> coordinated by a single person, if possible.

>

> ==EDUCATIONAL GOALS==

> Parents of children with CHARGE should be encouraged to become IN

> CHARGE and very active advocates for their children in order to

ensure

> that an educational program is made that will allow each child to

> reach their full potential. All children regardless of their final

> cognitive abilities will require special support in schools to

ensure

> that they maximize their potentials and develop into the most

> productive people that they can be.

>

> In an educational setting all involved must be aware of the special

> needs a child with CHARGE may have. Teachers of children with

CHARGE

> Syndrome have to be aware of all areas affected by the disease.

> Because CHARGE can affect the eyes, ears, and brain it is most

> important that all members of the educational team (teacher of the

> deaf and hard of hearing, teachers of the visually impaired,

> audiologists, pediatricians, parents, etc.) Taking each of these

into

> account is vital to the success of the child and family in an

> educational setting.

>

> ==UNDERSTANDING BEHAVIOURS==

> Parents, teachers and caregivers should understand that all

behaviors,

> weather good or bad, are a form of communication. An important step

in

> dealing with the behavior is understanding why it is occurring in

the

> first place and helping the child learn more appropriate methods of

> communication

>

> ==TRANSITIONING INTO ADULTHOOD==

> Parents should make sure that before their child reaches 18 (or year

> of majority for their country), that they have established doctors

and

> specialists who will follow the child after they have reached

> adulthood. Even if the young adult with CHARGE is independent, it's

> important to help them maintain their independence by helping them

> move from the pediatric doctors to the new doctors who will follow

> them as adults. It is not recommended to rely on hospitals to do

that

> for the parents.

>

> ==External Links==

> * _http://www.mhaspecthttp://wwwhttp://wwwhttp://wwhttp:_

(http://www.mhaspectsofdd.com/abstracts/Vol7Num2/1.htm)

> * _http://www.chargesyhttp://www_ (http://www.chargesyndrome.ca/)

> * _http://www.cdbra.htt_ (http://www.cdbra.ca/)

> * _http://www.austcharhttp://www_ (http://www.austcharge.com.au/)

> * _http://www.charge-hyndrom.de/_ (http://www.charge-syndrom.de/)

> * _http://www.widerworhttp://wwhttp://_

(http://www.widerworld.co.uk/charge/)

>

>

>

>

>

> --

> _http://spacecatsgarhttp://spacechttp_

(http://spacecatsgarden.blogspot.com/) => My blog space

>

> " I let my mind out to wander, and it never came back! " ~ unknown

>

************************************** AOL now offers free email to everyone.

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[Guest guest]

I think wikipedia is cool. I just went back and fixed my headings. I

hope its ok. I dont know how to add citations though so I tried to put

it all in my own words as best as possible.

http://en.wikipedia.org/wiki/Charge_syndrome thats the link

Chantelle

> Chantelle,

>

> GOOD JOB !!!

>

> Casey

>

>

>

>

________________________________________________________________________________\

____

> Be a PS3 game guru.

> Get your game face on with the latest PS3 news and previews at Yahoo! Games.

> http://videogames.yahoo.com/platform?platform=120121

>

>

[Guest guest]

Thank you so much! This is exactly what I was looking for when I

first heard the words CHARGE syndrome. This is more helpful then most

things I have found.

Thanks again

Trish

Mom of

DeJay - 4

ah - 3

Sammy - Three weeks CHARGEr

>

> On Wikipedia my username is Catfuzz.caliby I made changes to the

> CHARGE syndrome page.

>

>

> CHARGE is a syndrome not an Association. The reason it is called a

> syndrome is because CHARGE syndrome is set of non random symptoms

that

> occur together due to a genetic anomaly. An association, which is

what

> CHARGE was once considered, is a set of random symptoms that appear

to

> occur together.

>

> In 1981, the name " CHARGE " was an easy way to refer to a newly

> recognized set of features seen in a number of children. Over the

> years, it has become clear that CHARGE is indeed a syndrome and at

> least one gene causing CHARGE syndrome has been discovered. The

> letters in CHARGE stand for: Coloboma of the eye, Heart defects,

> Atresia of the choanae, Retardation of growth and/or development,

> Genital and/or urinary abnormalities, and Ear abnormalities and

> deafness. Those features are no longer used in making a diagnosis of

> CHARGE syndrome, but there are no intentions on changing the name.

>

> ==History of CHARGE==

> Dr. B. D. Hall first described the CHARGE association in the journal

> paper he published in 1979. He had studied 17 children who all had a

> choanal atresia. At about the same time Dr. H.M. Hittner also

observed

> that the group of 10 children in their study all had the choanal

> atresia as well as coloboma, congenital heart defect, and hearing

> loss. Using both a coloboma or choanal atresia and some of the other

> related characteristic malformations, Dr. R. A. Pagon first coined

> the term CHARGE. In choosing this acronym, Dr. Pagon intended to

> emphasize that this cluster of associated malformations occurred

> together. In 1981, the name " CHARGE " was an easy way to refer to a

> newly recognized set of features seen in a number of children. Over

> the years, many people believe it was a recognizable syndrome within

> the umbrella of the CHARGE association. Over the years, it has

become

> clear that CHARGE is indeed a syndrome and at least one gene causing

> CHARGE syndrome has been discovered.

>

> ==THERAPIES AND OUTCOME==

> Children with CHARGE syndrome can have many life threatening issues,

> with advance in medical care these children can survive and become

> healthy and happy individuals. Appropriate therapies and educational

> intervention that is given to individuals with CHARGE syndrome must

> take into consideration hearing, vision and any other medical

> conditions that are present. Early intervention, such as

occupational

> and physical therapy is very important as the intelligence of

> children with multiple health issues such as combined deaf blindness

> is often underestimated. Because of the developmental delay, early

> intervention would play an important role in mobility, improving

> static postures, transitioning towards ambulation, and teaching self

> care skills. Both physicians and parents need to be made aware that

> these children can thrive with the support of a team of medical

> professionals. Management should be by a multidisciplinary team and

> coordinated by a single person, if possible.

>

> ==EDUCATIONAL GOALS==

> Parents of children with CHARGE should be encouraged to become IN

> CHARGE and very active advocates for their children in order to

ensure

> that an educational program is made that will allow each child to

> reach their full potential. All children regardless of their final

> cognitive abilities will require special support in schools to

ensure

> that they maximize their potentials and develop into the most

> productive people that they can be.

>

> In an educational setting all involved must be aware of the special

> needs a child with CHARGE may have. Teachers of children with

CHARGE

> Syndrome have to be aware of all areas affected by the disease.

> Because CHARGE can affect the eyes, ears, and brain it is most

> important that all members of the educational team (teacher of the

> deaf and hard of hearing, teachers of the visually impaired,

> audiologists, pediatricians, parents, etc.) Taking each of these

into

> account is vital to the success of the child and family in an

> educational setting.

>

> ==UNDERSTANDING BEHAVIOURS==

> Parents, teachers and caregivers should understand that all

behaviors,

> weather good or bad, are a form of communication. An important step

in

> dealing with the behavior is understanding why it is occurring in

the

> first place and helping the child learn more appropriate methods of

> communication

>

> ==TRANSITIONING INTO ADULTHOOD==

> Parents should make sure that before their child reaches 18 (or year

> of majority for their country), that they have established doctors

and

> specialists who will follow the child after they have reached

> adulthood. Even if the young adult with CHARGE is independent, it's

> important to help them maintain their independence by helping them

> move from the pediatric doctors to the new doctors who will follow

> them as adults. It is not recommended to rely on hospitals to do

that

> for the parents.

>

> ==External Links==

> * http://www.mhaspectsofdd.com/abstracts/Vol7Num2/1.htm

> * http://www.chargesyndrome.ca/

> * http://www.cdbra.ca/

> * http://www.austcharge.com.au/

> * http://www.charge-syndrom.de/

> * http://www.widerworld.co.uk/charge/

>

>

>

>

>

> --

> http://spacecatsgarden.blogspot.com/ => My blog space

>

> " I let my mind out to wander, and it never came back! " ~ unknown

>

[Guest guest]

its so good that i saved it so if other new parents come in we can fwd this

to them!1

>

>

> excellent information. Thank you.

>

> In a message dated 3/22/2007 5:58:55 P.M. Eastern Daylight Time,

> tgluvly@... <tgluvly%40yahoo.com> writes:

>

> Thank you so much! This is exactly what I was looking for when I

> first heard the words CHARGE syndrome. This is more helpful then most

> things I have found.

>

> Thanks again

> Trish

> Mom of

> DeJay - 4

> ah - 3

> Sammy - Three weeks CHARGEr

>

>

> >

> > On Wikipedia my username is Catfuzz.caliby I made changes to the

> > CHARGE syndrome page.

> >

> >

> > CHARGE is a syndrome not an Association. The reason it is called a

> > syndrome is because CHARGE syndrome is set of non random symptoms

> that

> > occur together due to a genetic anomaly. An association, which is

> what

> > CHARGE was once considered, is a set of random symptoms that appear

> to

> > occur together.

> >

> > In 1981, the name " CHARGE " was an easy way to refer to a newly

> > recognized set of features seen in a number of children. Over the

> > years, it has become clear that CHARGE is indeed a syndrome and at

> > least one gene causing CHARGE syndrome has been discovered. The

> > letters in CHARGE stand for: Coloboma of the eye, Heart defects,

> > Atresia of the choanae, Retardation of growth and/or development,

> > Genital and/or urinary abnormalities, and Ear abnormalities and

> > deafness. Those features are no longer used in making a diagnosis of

> > CHARGE syndrome, but there are no intentions on changing the name.

> >

> > ==History of CHARGE==

> > Dr. B. D. Hall first described the CHARGE association in the journal

> > paper he published in 1979. He had studied 17 children who all had a

> > choanal atresia. At about the same time Dr. H.M. Hittner also

> observed

> > that the group of 10 children in their study all had the choanal

> > atresia as well as coloboma, congenital heart defect, and hearing

> > loss. Using both a coloboma or choanal atresia and some of the other

> > related characteristic malformations, Dr. R. A. Pagon first coined

> > the term CHARGE. In choosing this acronym, Dr. Pagon intended to

> > emphasize that this cluster of associated malformations occurred

> > together. In 1981, the name " CHARGE " was an easy way to refer to a

> > newly recognized set of features seen in a number of children. Over

> > the years, many people believe it was a recognizable syndrome within

> > the umbrella of the CHARGE association. Over the years, it has

> become

> > clear that CHARGE is indeed a syndrome and at least one gene causing

> > CHARGE syndrome has been discovered.

> >

> > ==THERAPIES AND OUTCOME==

> > Children with CHARGE syndrome can have many life threatening issues,

> > with advance in medical care these children can survive and become

> > healthy and happy individuals. Appropriate therapies and educational

> > intervention that is given to individuals with CHARGE syndrome must

> > take into consideration hearing, vision and any other medical

> > conditions that are present. Early intervention, such as

> occupational

> > and physical therapy is very important as the intelligence of

> > children with multiple health issues such as combined deaf blindness

> > is often underestimated. Because of the developmental delay, early

> > intervention would play an important role in mobility, improving

> > static postures, transitioning towards ambulation, and teaching self

> > care skills. Both physicians and parents need to be made aware that

> > these children can thrive with the support of a team of medical

> > professionals. Management should be by a multidisciplinary team and

> > coordinated by a single person, if possible.

> >

> > ==EDUCATIONAL GOALS==

> > Parents of children with CHARGE should be encouraged to become IN

> > CHARGE and very active advocates for their children in order to

> ensure

> > that an educational program is made that will allow each child to

> > reach their full potential. All children regardless of their final

> > cognitive abilities will require special support in schools to

> ensure

> > that they maximize their potentials and develop into the most

> > productive people that they can be.

> >

> > In an educational setting all involved must be aware of the special

> > needs a child with CHARGE may have. Teachers of children with

> CHARGE

> > Syndrome have to be aware of all areas affected by the disease.

> > Because CHARGE can affect the eyes, ears, and brain it is most

> > important that all members of the educational team (teacher of the

> > deaf and hard of hearing, teachers of the visually impaired,

> > audiologists, pediatricians, parents, etc.) Taking each of these

> into

> > account is vital to the success of the child and family in an

> > educational setting.

> >

> > ==UNDERSTANDING BEHAVIOURS==

> > Parents, teachers and caregivers should understand that all

> behaviors,

> > weather good or bad, are a form of communication. An important step

> in

> > dealing with the behavior is understanding why it is occurring in

> the

> > first place and helping the child learn more appropriate methods of

> > communication

> >

> > ==TRANSITIONING INTO ADULTHOOD==

> > Parents should make sure that before their child reaches 18 (or year

> > of majority for their country), that they have established doctors

> and

> > specialists who will follow the child after they have reached

> > adulthood. Even if the young adult with CHARGE is independent, it's

> > important to help them maintain their independence by helping them

> > move from the pediatric doctors to the new doctors who will follow

> > them as adults. It is not recommended to rely on hospitals to do

> that

> > for the parents.

> >

> > ==External Links==

> > * _http://www.mhaspecthttp://wwwhttp://wwwhttp://wwhttp:_

> (http://www.mhaspectsofdd.com/abstracts/Vol7Num2/1.htm)

> > * _http://www.chargesyhttp://www_ (http://www.chargesyndrome.ca/)

> > * _http://www.cdbra.htt_ (http://www.cdbra.ca/)

> > * _http://www.austcharhttp://www_ (http://www.austcharge.com.au/)

> > * _http://www.charge-hyndrom.de/_ (http://www.charge-syndrom.de/)

> > * _http://www.widerworhttp://wwhttp://_

> (http://www.widerworld.co.uk/charge/)

> >

> >

> >

> >

> >

> > --

> > _http://spacecatsgarhttp://spacechttp_

> (http://spacecatsgarden.blogspot.com/) => My blog space

> >

> > " I let my mind out to wander, and it never came back! " ~ unknown

> >

>

> ************************************** AOL now offers free email to

> everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

>

[Guest guest]

Hey Ellen, thanks, thats a good idea saving it for them. I am glad

that everyone is likeing it. I have to go back and figure out how to

add citations thoough. I need to include a few references as well. I

did a lot to rephrase my own miami conference paragraph (became the

stepping into adulthood part of the wikipidia article) and a project i

did years ago.

I wanted to put more on behaviours but the additions needed to be

around 200 words so I left if for now. Since I do have a wikipidea

account I will go back and learn a little more so I can incluse more

references. I didnt know how to do that and I know there was the

education part I had the hardest time putting into my own words and I

really need to put the citation on that but I dont know how.

Chantelle

--

http://spacecatsgarden.blogspot.com/ => My blog space

" I let my mind out to wander, and it never came back! " ~ unknown

[Guest guest]

Chantelle, great job! I am glad you are going to learn about putting the

references in; I think that's really important for everything to be credible

to the wider population. When I edited a wiki a while back, I just went in

and looked at the code of how the other references were added and replicated

it with the appropriate information for my new reference. Hope this helps!

Looks great darling!

www.chargesyndrome.info

>

> Hey Ellen, thanks, thats a good idea saving it for them. I am glad

> that everyone is likeing it. I have to go back and figure out how to

> add citations thoough. I need to include a few references as well. I

> did a lot to rephrase my own miami conference paragraph (became the

> stepping into adulthood part of the wikipidia article) and a project i

> did years ago.

>

> I wanted to put more on behaviours but the additions needed to be

> around 200 words so I left if for now. Since I do have a wikipidea

> account I will go back and learn a little more so I can incluse more

> references. I didnt know how to do that and I know there was the

> education part I had the hardest time putting into my own words and I

> really need to put the citation on that but I dont know how.

>

> Chantelle

>

> --

> http://spacecatsgarden.blogspot.com/ => My blog space

>

> " I let my mind out to wander, and it never came back! " ~ unknown

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Chantelle-

You did a fabulous job! I really appreciate the time and effort it took to

put that together so beautifully. It's clear and accurate and concise. It

will be a such a wonderful tool for folks searching for information.

Michele W

[Guest guest]

In case you have not found this, here is the link in Wikipedia on how

to do citations:

http://en.wikipedia.org/wiki/Wikipedia:Citation_templates

If you have any questions, I can hopefully help as we use wikis at

work to develop documentation. When I first heard our daughter might

have CHARGE, wikipedia was one of the first websites I went to. The

changes and additions you have made our excellent and really well

done. Thanks for spending the time to do this.

Jeff

>

> Hey Ellen, thanks, thats a good idea saving it for them. I am glad

> that everyone is likeing it. I have to go back and figure out how to

> add citations thoough. I need to include a few references as well. I

> did a lot to rephrase my own miami conference paragraph (became the

> stepping into adulthood part of the wikipidia article) and a project i

> did years ago.

>

> I wanted to put more on behaviours but the additions needed to be

> around 200 words so I left if for now. Since I do have a wikipidea

> account I will go back and learn a little more so I can incluse more

> references. I didnt know how to do that and I know there was the

> education part I had the hardest time putting into my own words and I

> really need to put the citation on that but I dont know how.

>

> Chantelle

>

>

> --

> http://spacecatsgarden.blogspot.com/ => My blog space

>

> " I let my mind out to wander, and it never came back! " ~ unknown

>