Re: New member - need advice

[Guest guest]

Meg,

Welcome to the site. I too, have just recently joined the group, and

I would like to welcome you. I can't really answer any of your

questions, however I would just like to tell you that in the 2 weeks

since I joined this group, I have had tons of questions answered. I

can tell you that you are hooked up with some very knowledgeable

women. will get you a copy of the video, and she will be

able to answer lots of questions, or if she can't she will be able to

at least point you in the right direction. I just wanted to let you

know that you are in good hands here. If you ever need to vent, you

can always come to us. If you would like to email me privately, you

can at www.chesneysmama.com

Sincerley,

Kelley

Also, I am in and out of the site all day, I'm addicted to this group

already. LOL.

> Hi all,

>

> We are new members, my name is Meg, married to and we have

a 2

> years old son Darryl who has congenital defect of scoliosis

> (hemivertebrae and kyphosis). We are living in CO. We are so

grateful to

> find this site because we need to learn a lot from other parents who

> might have similar situations.

>

> Last February 20, 2004, Darryl's X-ray showed that his lumbar curve

> measured 60 degrees and his lower thoracic curve measured 58

degrees.

> When he was 5 months old it was measured 44 degrees for his lumbar

spine

> and 54 degrees for his thoracic curve. We haven't done anything so

far

> to address his scoliosis. We have seen local doctors every 6 months

but

> we also have a Pediatric Orthopedic from the Hospital for Special

> Surgery in New York to watch him. All doctors who we've seen last

year

> said to wait, nothing could be done right now. His doctor in NY

said we

> have to wait at least until Darryl's weight is about 30 Lbs before

we

> can plan for any spinal fusion or surgeries. But we haven't heard

his

> comments for the last X-ray we sent last month. His weight now is

only

> 21 Lbs 10 Oz. He has not gained any weight for more than one year.

He

> has a complex feeding problem where he has been on 100% g-tube

since he

> was 3 months old and has gone through 3 times of Nissen

Fundoplication

> surgeries. We've been struggling ever since with his feeding and

> vomiting.

>

> Last Christmas 2002 he had tethered spinal cord surgery here at

children

> hospital-Denver. His Neurosurgeon told us that his spine started

approx.

> from L3 down to S1 does not have soft tissues or fused bones that's

why

> he had to make a long incision until he found the right location of

his

> fatty filum to be removed or cut. When we heard that we are so worry

> that Darryl won't be able to grow not only because of his scoliosis

but

> also because of his fused bones. At his 2 years of age his height is

> only about 31.5 inch.

>

> Last November 2003, when we did an X-ray for his cervical spine, it

> showed that his c4 and c5 fused together but our Orthopedic said

it's

> common. He will just have a shorter neck.

>

> After reading some stories from this site, it's like receiving a

wake up

> call for us. We are feeling so nervous but we do not know what we

have

> to do for him. If anyone could recommend a Pediatric Orthopedic that

> could provide the best help considering Darryl's condition mentioned

> above, could you please share it with us.

>

> Has anyone ever heard or come across with the issue of fused bones

along

> the spine? If so, what do we have to do to double check whether it

is

> really the case or not. We have done MRI when he was 8 months old

and

> CatScan when he was 14 months old but our Orthopedic in NY were not

able

> to justify it by looking at the CTScan.

>

> We have read about the option of having cast treatments/procedure in

> Utah. Now we have a lot of questions in our mind that we would just

> write it down here in case if anyone has the answer. We are

planning to

> see an Orthopedic soon to ask all of these questions, but we believe

> that some of you have been through this before, so you might also be

> able to give us your feedback on these issues.

> - How many children so far have done this kind of procedure here in

the

> US and what are the general results?

> - What will be the impact of putting weight on the head and wearing

cast

> later on to his/her gross motor skill such as walking, climbing,

cycling

> etc.?

> - Is there any possibility for brain damage or nerve damage or any

other

> negative impact of having that weight on their head for a period of

> time? How long do they put that weight and how often?

> - By stretching the body/spine don't you think could damage or

affect

> the spinal cord along with the nerve system inside the spine?

> - Do you think that cast procedure could also be used to help with

his

> hemivertebrae and kyphosis?

> - Do you know anybody with G-button on his stomach using that kind

of

> cast?

> - How long do they have to wear that cast and how often is the break

> time? Does anyone know any other kind of procedure or treatment

apart

> from the cast treatment or fusion that could be considered?

> - In case if anyone knows any good resource and research material or

> website that we should visit or read, please share. We are still

> searching from the internet.

>

> We apologize if we are asking so many questions; we need to learn as

> much as we could on this issue, because we don't want to make a

wrong

> decision.

>

> Any advice and opinion are very much appreciated. BTW, how can we

put an

> order of the video offered in this website?

>

> Best regards,

> Meg

[Guest guest]

Hi ,

Thank you very much for your response.

It’s always nice to know there are

some people out there who can relate to what we are going through.

I am glad to be part of this wonderful

group. Whenever I have something to share or to ask I will definitely post it

here.

You are also welcome to email me privately

at mdco@....

Keep in touch,

Meg

Re:

New member - need advice

Meg,

Welcome to the site. I too, have just

recently joined the group, and

I would like to welcome you. I can't really

answer any of your

questions, however I would just like to tell you

that in the 2 weeks

since I joined this group, I have had tons of

questions answered. I

can tell you that you are hooked up with some very

knowledgeable

women. will get you a copy of the

video, and she will be

able to answer lots of questions, or if she can't

she will be able to

at least point you in the right direction. I

just wanted to let you

know that you are in good hands here. If you ever

need to vent, you

can always come to us. If you would like to

email me privately, you

can at www.chesneysmama.com

Sincerley,

Kelley

Also, I am in and out of the site all day, I'm

addicted to this group

already. LOL.

> Hi all,

>

> We are new members, my name is Meg, married

to and we have

a 2

> years old son Darryl who has congenital

defect of scoliosis

> (hemivertebrae and kyphosis). We are living

in CO. We are so

grateful to

> find this site because we need to learn a lot

from other parents who

> might have similar situations.

>

> Last February 20, 2004, Darryl's X-ray showed

that his lumbar curve

> measured 60 degrees and his lower thoracic

curve measured 58

degrees.

> When he was 5 months old it was measured 44

degrees for his lumbar

spine

> and 54 degrees for his thoracic curve. We

haven't done anything so

far

> to address his scoliosis. We have seen local

doctors every 6 months

but

> we also have a Pediatric Orthopedic from the

Hospital for Special

> Surgery in New York to watch him. All doctors

who we've seen last

year

> said to wait, nothing could be done right

now. His doctor in NY

said we

> have to wait at least until Darryl's weight

is about 30 Lbs before

we

> can plan for any spinal fusion or surgeries.

But we haven't heard

his

> comments for the last X-ray we sent last

month. His weight now is

only

> 21 Lbs 10 Oz. He has not gained any weight

for more than one year.

He

> has a complex feeding problem where he has

been on 100% g-tube

since he

> was 3 months old and has gone through 3 times

of Nissen

Fundoplication

> surgeries. We've been struggling ever since

with his feeding and

> vomiting.

>

> Last Christmas 2002 he had tethered spinal

cord surgery here at

children

> hospital-Denver. His Neurosurgeon told us

that his spine started

approx.

> from L3 down to S1 does not have soft tissues

or fused bones that's

why

> he had to make a long incision until he found

the right location of

his

> fatty filum to be removed or cut. When we

heard that we are so worry

> that Darryl won't be able to grow not only

because of his scoliosis

but

> also because of his fused bones. At his 2

years of age his height is

> only about 31.5 inch.

>

> Last November 2003, when we did an X-ray for

his cervical spine, it

> showed that his c4 and c5 fused together but

our Orthopedic said

it's

> common. He will just have a shorter neck.

>

> After reading some stories from this site,

it's like receiving a

wake up

> call for us. We are feeling so nervous but we

do not know what we

have

> to do for him. If anyone could recommend a

Pediatric Orthopedic that

> could provide the best help considering

Darryl's condition mentioned

> above, could you please share it with us.

>

> Has anyone ever heard or come across with the

issue of fused bones

along

> the spine? If so, what do we have to do to

double check whether it

is

> really the case or not. We have done MRI when

he was 8 months old

and

> CatScan when he was 14 months old but our

Orthopedic in NY were not

able

> to justify it by looking at the CTScan.

>

> We have read about the option of having cast

treatments/procedure in

> Utah. Now we have a lot of questions in our

mind that we would just

> write it down here in case if anyone has the

answer. We are

planning to

> see an Orthopedic soon to ask all of these

questions, but we believe

> that some of you have been through this

before, so you might also be

> able to give us your feedback on these

issues.

> - How many children so far have done this

kind of procedure here in

the

> US and what are the general results?

> - What will be the impact of putting weight

on the head and wearing

cast

> later on to his/her gross motor skill such as

walking, climbing,

cycling

> etc.?

> - Is there any possibility for brain damage or

nerve damage or any

other

> negative impact of having that weight on

their head for a period of

> time? How long do they put that weight and

how often?

> - By stretching the body/spine don't you

think could damage or

affect

> the spinal cord along with the nerve system

inside the spine?

> - Do you think that cast procedure could also

be used to help with

his

> hemivertebrae and kyphosis?

> - Do you know anybody with G-button on his

stomach using that kind

of

> cast?

> - How long do they have to wear that cast and

how often is the break

> time? Does anyone know any other kind of

procedure or treatment

apart

> from the cast treatment or fusion that could

be considered?

> - In case if anyone knows any good resource

and research material or

> website that we should visit or read, please

share. We are still

> searching from the internet.

>

> We apologize if we are asking so many

questions; we need to learn as

> much as we could on this issue, because we

don't want to make a

wrong

> decision.

>

> Any advice and opinion are very much

appreciated. BTW, how can we

put an

> order of the video offered in this website?

>

> Best regards,

> Meg

[Guest guest]

Meg,

I gave you the wrong email address. It's chesneysmama@... or

pinkky@...

Thanks kelley

> > Hi all,

> >

> > We are new members, my name is Meg, married to and we

have

> a 2

> > years old son Darryl who has congenital defect of scoliosis

> > (hemivertebrae and kyphosis). We are living in CO. We are so

> grateful to

> > find this site because we need to learn a lot from other parents

who

> > might have similar situations.

> >

> > Last February 20, 2004, Darryl's X-ray showed that his lumbar

curve

> > measured 60 degrees and his lower thoracic curve measured 58

> degrees.

> > When he was 5 months old it was measured 44 degrees for his

lumbar

> spine

> > and 54 degrees for his thoracic curve. We haven't done anything

so

> far

> > to address his scoliosis. We have seen local doctors every 6

months

> but

> > we also have a Pediatric Orthopedic from the Hospital for Special

> > Surgery in New York to watch him. All doctors who we've seen last

> year

> > said to wait, nothing could be done right now. His doctor in NY

> said we

> > have to wait at least until Darryl's weight is about 30 Lbs

before

> we

> > can plan for any spinal fusion or surgeries. But we haven't heard

> his

> > comments for the last X-ray we sent last month. His weight now is

> only

> > 21 Lbs 10 Oz. He has not gained any weight for more than one

year.

> He

> > has a complex feeding problem where he has been on 100% g-tube

> since he

> > was 3 months old and has gone through 3 times of Nissen

> Fundoplication

> > surgeries. We've been struggling ever since with his feeding and

> > vomiting.

> >

> > Last Christmas 2002 he had tethered spinal cord surgery here at

> children

> > hospital-Denver. His Neurosurgeon told us that his spine started

> approx.

> > from L3 down to S1 does not have soft tissues or fused bones

that's

> why

> > he had to make a long incision until he found the right location

of

> his

> > fatty filum to be removed or cut. When we heard that we are so

worry

> > that Darryl won't be able to grow not only because of his

scoliosis

> but

> > also because of his fused bones. At his 2 years of age his height

is

> > only about 31.5 inch.

> >

> > Last November 2003, when we did an X-ray for his cervical spine,

it

> > showed that his c4 and c5 fused together but our Orthopedic said

> it's

> > common. He will just have a shorter neck.

> >

> > After reading some stories from this site, it's like receiving a

> wake up

> > call for us. We are feeling so nervous but we do not know what we

> have

> > to do for him. If anyone could recommend a Pediatric Orthopedic

that

> > could provide the best help considering Darryl's condition

mentioned

> > above, could you please share it with us.

> >

> > Has anyone ever heard or come across with the issue of fused

bones

> along

> > the spine? If so, what do we have to do to double check whether

it

> is

> > really the case or not. We have done MRI when he was 8 months old

> and

> > CatScan when he was 14 months old but our Orthopedic in NY were

not

> able

> > to justify it by looking at the CTScan.

> >

> > We have read about the option of having cast treatments/procedure

in

> > Utah. Now we have a lot of questions in our mind that we would

just

> > write it down here in case if anyone has the answer. We are

> planning to

> > see an Orthopedic soon to ask all of these questions, but we

believe

> > that some of you have been through this before, so you might also

be

> > able to give us your feedback on these issues.

> > - How many children so far have done this kind of procedure here

in

> the

> > US and what are the general results?

> > - What will be the impact of putting weight on the head and

wearing

> cast

> > later on to his/her gross motor skill such as walking, climbing,

> cycling

> > etc.?

> > - Is there any possibility for brain damage or nerve damage or

any

> other

> > negative impact of having that weight on their head for a period

of

> > time? How long do they put that weight and how often?

> > - By stretching the body/spine don't you think could damage or

> affect

> > the spinal cord along with the nerve system inside the spine?

> > - Do you think that cast procedure could also be used to help

with

> his

> > hemivertebrae and kyphosis?

> > - Do you know anybody with G-button on his stomach using that

kind

> of

> > cast?

> > - How long do they have to wear that cast and how often is the

break

> > time? Does anyone know any other kind of procedure or treatment

> apart

> > from the cast treatment or fusion that could be considered?

> > - In case if anyone knows any good resource and research material

or

> > website that we should visit or read, please share. We are still

> > searching from the internet.

> >

> > We apologize if we are asking so many questions; we need to learn

as

> > much as we could on this issue, because we don't want to make a

> wrong

> > decision.

> >

> > Any advice and opinion are very much appreciated. BTW, how can we

> put an

> > order of the video offered in this website?

> >

> > Best regards,

> > Meg

>

>

>

> _____

>

>

[Guest guest]

Kelley,

Thank you for your email address.

Talk to you soon,

Meg

Re:

New member - need advice

Meg,

I gave you the wrong email address. It's

chesneysmama@... or

pinkky@...

Thanks kelley

> > Hi all,

> >

> > We are new members, my name is Meg,

married to and we

have

> a 2

> > years old son Darryl who has congenital

defect of scoliosis

> > (hemivertebrae and kyphosis). We are

living in CO. We are so

> grateful to

> > find this site because we need to learn

a lot from other parents

who

> > might have similar situations.

> >

> > Last February 20, 2004, Darryl's X-ray

showed that his lumbar

curve

> > measured 60 degrees and his lower

thoracic curve measured 58

> degrees.

> > When he was 5 months old it was measured

44 degrees for his

lumbar

> spine

> > and 54 degrees for his thoracic curve.

We haven't done anything

so

> far

> > to address his scoliosis. We have seen

local doctors every 6

months

> but

> > we also have a Pediatric Orthopedic from

the Hospital for Special

> > Surgery in New York to watch him. All

doctors who we've seen last

> year

> > said to wait, nothing could be done

right now. His doctor in NY

> said we

> > have to wait at least until Darryl's

weight is about 30 Lbs

before

> we

> > can plan for any spinal fusion or

surgeries. But we haven't heard

> his

> > comments for the last X-ray we sent last

month. His weight now is

> only

> > 21 Lbs 10 Oz. He has not gained any

weight for more than one

year.

> He

> > has a complex feeding problem where he

has been on 100% g-tube

> since he

> > was 3 months old and has gone through 3

times of Nissen

> Fundoplication

> > surgeries. We've been struggling ever

since with his feeding and

> > vomiting.

> >

> > Last Christmas 2002 he had tethered

spinal cord surgery here at

> children

> > hospital-Denver. His Neurosurgeon told

us that his spine started

> approx.

> > from L3 down to S1 does not have soft

tissues or fused bones

that's

> why

> > he had to make a long incision until he

found the right location

of

> his

> > fatty filum to be removed or cut. When

we heard that we are so

worry

> > that Darryl won't be able to grow not

only because of his

scoliosis

> but

> > also because of his fused bones. At his

2 years of age his height

is

> > only about 31.5 inch.

> >

> > Last November 2003, when we did an X-ray

for his cervical spine,

it

> > showed that his c4 and c5 fused together

but our Orthopedic said

> it's

> > common. He will just have a shorter

neck.

> >

> > After reading some stories from this

site, it's like receiving a

> wake up

> > call for us. We are feeling so nervous

but we do not know what we

> have

> > to do for him. If anyone could recommend

a Pediatric Orthopedic

that

> > could provide the best help considering

Darryl's condition

mentioned

> > above, could you please share it with

us.

> >

> > Has anyone ever heard or come across

with the issue of fused

bones

> along

> > the spine? If so, what do we have to do

to double check whether

it

> is

> > really the case or not. We have done MRI

when he was 8 months old

> and

> > CatScan when he was 14 months old but

our Orthopedic in NY were

not

> able

> > to justify it by looking at the CTScan.

> >

> > We have read about the option of having

cast treatments/procedure

in

> > Utah. Now we have a lot of questions in

our mind that we would

just

> > write it down here in case if anyone has

the answer. We are

> planning to

> > see an Orthopedic soon to ask all of these

questions, but we

believe

> > that some of you have been through this

before, so you might also

be

> > able to give us your feedback on these

issues.

> > - How many children so far have done

this kind of procedure here

in

> the

> > US and what are the general results?

> > - What will be the impact of putting

weight on the head and

wearing

> cast

> > later on to his/her gross motor skill

such as walking, climbing,

> cycling

> > etc.?

> > - Is there any possibility for brain

damage or nerve damage or

any

> other

> > negative impact of having that weight on

their head for a period

of

> > time? How long do they put that weight

and how often?

> > - By stretching the body/spine don't you

think could damage or

> affect

> > the spinal cord along with the nerve

system inside the spine?

> > - Do you think that cast procedure could

also be used to help

with

> his

> > hemivertebrae and kyphosis?

> > - Do you know anybody with G-button on

his stomach using that

kind

> of

> > cast?

> > - How long do they have to wear that

cast and how often is the

break

> > time? Does anyone know any other kind of

procedure or treatment

> apart

> > from the cast treatment or fusion that

could be considered?

> > - In case if anyone knows any good

resource and research material

or

> > website that we should visit or read,

please share. We are still

> > searching from the internet.

> >

> > We apologize if we are asking so many

questions; we need to learn

as

> > much as we could on this issue, because

we don't want to make a

> wrong

> > decision.

> >

> > Any advice and opinion are very much

appreciated. BTW, how can we

> put an

> > order of the video offered in this

website?

> >

> > Best regards,

> > Meg

>

>

>

> _____

>

>