siblings also having TCS?

[Guest guest]

Question for you all. Our 15 yo ds was diagnosed with TCS and

Scheuermann's kyphosis this spring. WE got our second opinion and are

now scheduled for TCS release surgery for June 27th.

Question is is there a genetic component on this and are siblings at

greater risk of having TCS? I am wondering becuase our youngest is a

big toe walker and I was told by a chiro a few years ago that this is

aassociated with toe walking, and Dr. Crone of Cincy Children's hospital

confirmed that when I spoke with him Wed at that appointment. I didnt'

think to ask him about this question. We aren't seeing any other

symptoms of TCS in the other kids, but then with our 15 yo we saw

nothing until he started developing this curve in his back. We still

thought that chiropractic and exercise would help, and had no clue it

was a physiological thing. Know better now a bit too late, painful life

lessons I guess. So anyway of course we'll be a lot more alert with the

other two kids, as they start really growing. but anyway my point

is..... is this something we should be concerned about specifically, or

just be aware in general obviously.

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

Our Lord refreshes us on the journey with some pleasant inns, but does

not encourage us to mistake them for home. ~~C.S.

[Guest guest]

Yes.. they can be genetic. Type into Google- TCS and genetic.. you will get a

lot. Here is one:

Genetics and Neural Tube Defects

Neural tube defects are considered a complex disorder because they are caused by

a combination of multiple genes and multiple environmental factors. Known

environmental factors include folic acid, maternal insulin dependent diabetes,

and maternal use of certain anticonvulsant (antiseizure) medications. While only

a few environmental factors have been characterized, many different studies

provide evidence that NTDs have a genetic component in their development.

Studies of twins with NTDs have shown both identical twins have NTDs more than

both fraternal twins. Studies of families show that the chance of having a

second family member born with an NTD after one child is born with an NTD

increases. For example, the general population’s chance of having an NTD is

approximately 0.1% (1 in 1000). However, once a couple has one child with an

NTD, their chance of having a second child with an NTD is increased to

approximately 2-5%. Further studies have shown

evidence for a genetic pattern of inheritance for NTDs.

NTDs are a feature (or symptom) of known genetic syndromes, such as trisomy 13,

trisomy 18, certain chromosome rearrangements, and Meckel-Gruber syndrome.

The Duke Center for Human Genetics is currently conducting a genetic study

called “The Hereditary Basis of Neural Tube Defects,†to determine the

causes of NTDs. By studying families with NTDs, we hope to identify the genes

that contribute to the development of an NTD. We hope this research will allow

us to better understand the genetic and environmental causes of NTDs, which will

eventually lead to more accurate genetic counseling and risk assessment,

improved treatments, better prevention methods, and, possibly, a cure.

As a part of our overall NTD genetic study, we are also conducting sub-studies,

including investigations into the genetics of anencephaly and closed NTDs.

Anencephaly is one of the most severe, fatal forms of an NTD. Anencephaly is

defined as the incomplete formation of the skull, which is at the top of the

neural tube. We are particularly interested in helping uncover the cause(s) of

anencephaly, in the hopes of helping families understand this devastating

disorder.

Closed NTDs, such as lipo(myelo)meningocele, lipomeningocele, and tethered cord

occur when skin has grown over the NTD. The genetics of closed NTDs are not

currently understood. For many years, researchers have assumed that the

information about myelomeningocele is the same for the closed NTDs. The aim of

this sub-study is to determine if the same genetic factors that contribute to

causing open neural tube defects, such as myelomeningocele, are also responsible

for contributing to the cause of closed NTDs.

// top //

Subject: siblings also having TCS?

To: tetheredspinalcord

Date: Friday, May 6, 2011, 12:15 PM

 

Question for you all. Our 15 yo ds was diagnosed with TCS and

Scheuermann's kyphosis this spring. WE got our second opinion and are

now scheduled for TCS release surgery for June 27th.

Question is is there a genetic component on this and are siblings at

greater risk of having TCS? I am wondering becuase our youngest is a

big toe walker and I was told by a chiro a few years ago that this is

aassociated with toe walking, and Dr. Crone of Cincy Children's hospital

confirmed that when I spoke with him Wed at that appointment. I didnt'

think to ask him about this question. We aren't seeing any other

symptoms of TCS in the other kids, but then with our 15 yo we saw

nothing until he started developing this curve in his back. We still

thought that chiropractic and exercise would help, and had no clue it

was a physiological thing. Know better now a bit too late, painful life

lessons I guess. So anyway of course we'll be a lot more alert with the

other two kids, as they start really growing. but anyway my point

is..... is this something we should be concerned about specifically, or

just be aware in general obviously.

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

Our Lord refreshes us on the journey with some pleasant inns, but does

not encourage us to mistake them for home. ~~C.S.

[Guest guest]

:

    My teenage mother had 2 pregnancies with NTDs.  She miscarried a male

anencephalic in 1943, and gave birth to me (L5-S1 spina bifida) in 1944.  After

that, she closed down the baby machine and it cost her a marriage (Dad wanted a

large family).

________________________________

To: tetheredspinalcord

Sent: Fri, May 6, 2011 11:26:30 AM

Subject: Re: siblings also having TCS?

 

Yes.. they can be genetic. Type into Google- TCS and genetic.. you will get a

lot. Here is one:

Genetics and Neural Tube Defects

Neural tube defects are considered a complex disorder because they are caused by

a combination of multiple genes and multiple environmental factors. Known

environmental factors include folic acid, maternal insulin dependent diabetes,

and maternal use of certain anticonvulsant (antiseizure) medications. While only

a few environmental factors have been characterized, many different studies

provide evidence that NTDs have a genetic component in their development.

Studies of twins with NTDs have shown both identical twins have NTDs more than

both fraternal twins. Studies of families show that the chance of having a

second family member born with an NTD after one child is born with an NTD

increases. For example, the general population’s chance of having an NTD is

approximately 0.1% (1 in 1000). However, once a couple has one child with an

NTD, their chance of having a second child with an NTD is increased to

approximately 2-5%. Further studies have shown

evidence for a genetic pattern of inheritance for NTDs.

NTDs are a feature (or symptom) of known genetic syndromes, such as trisomy 13,

trisomy 18, certain chromosome rearrangements, and Meckel-Gruber syndrome.

The Duke Center for Human Genetics is currently conducting a genetic study

called “The Hereditary Basis of Neural Tube Defects,†to determine the

causes of

NTDs. By studying families with NTDs, we hope to identify the genes that

contribute to the development of an NTD. We hope this research will allow us to

better understand the genetic and environmental causes of NTDs, which will

eventually lead to more accurate genetic counseling and risk assessment,

improved treatments, better prevention methods, and, possibly, a cure.

As a part of our overall NTD genetic study, we are also conducting sub-studies,

including investigations into the genetics of anencephaly and closed NTDs.

Anencephaly is one of the most severe, fatal forms of an NTD. Anencephaly is

defined as the incomplete formation of the skull, which is at the top of the

neural tube. We are particularly interested in helping uncover the cause(s) of

anencephaly, in the hopes of helping families understand this devastating

disorder.

Closed NTDs, such as lipo(myelo)meningocele, lipomeningocele, and tethered cord

occur when skin has grown over the NTD. The genetics of closed NTDs are not

currently understood. For many years, researchers have assumed that the

information about myelomeningocele is the same for the closed NTDs. The aim of

this sub-study is to determine if the same genetic factors that contribute to

causing open neural tube defects, such as myelomeningocele, are also responsible

for contributing to the cause of closed NTDs.

// top //

Subject: siblings also having TCS?

To: tetheredspinalcord

Date: Friday, May 6, 2011, 12:15 PM

 

Question for you all. Our 15 yo ds was diagnosed with TCS and

Scheuermann's kyphosis this spring. WE got our second opinion and are

now scheduled for TCS release surgery for June 27th.

Question is is there a genetic component on this and are siblings at

greater risk of having TCS? I am wondering becuase our youngest is a

big toe walker and I was told by a chiro a few years ago that this is

aassociated with toe walking, and Dr. Crone of Cincy Children's hospital

confirmed that when I spoke with him Wed at that appointment. I didnt'

think to ask him about this question. We aren't seeing any other

symptoms of TCS in the other kids, but then with our 15 yo we saw

nothing until he started developing this curve in his back. We still

thought that chiropractic and exercise would help, and had no clue it

was a physiological thing. Know better now a bit too late, painful life

lessons I guess. So anyway of course we'll be a lot more alert with the

other two kids, as they start really growing. but anyway my point

is..... is this something we should be concerned about specifically, or

just be aware in general obviously.

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

Our Lord refreshes us on the journey with some pleasant inns, but does

not encourage us to mistake them for home. ~~C.S.

[Guest guest]

I've got the same thing going on. My first born has the lipomyelomeningocele,

but my second born walks with his feet turned in, one quite significantly so.

I'm thinking of taking him to see an orthopedic doctor or a pediatrist. I hope

he doesn't have this too!

Holly

________________________________

To: tetheredspinalcord

Sent: Fri, May 6, 2011 2:57:34 PM

Subject: Re: siblings also having TCS?

:

My teenage mother had 2 pregnancies with NTDs. She miscarried a male

anencephalic in 1943, and gave birth to me (L5-S1 spina bifida) in 1944. After

that, she closed down the baby machine and it cost her a marriage (Dad wanted a

large family).

________________________________

To: tetheredspinalcord

Sent: Fri, May 6, 2011 11:26:30 AM

Subject: Re: siblings also having TCS?

Yes.. they can be genetic. Type into Google- TCS and genetic.. you will get a

lot. Here is one:

Genetics and Neural Tube Defects

Neural tube defects are considered a complex disorder because they are caused by

a combination of multiple genes and multiple environmental factors. Known

environmental factors include folic acid, maternal insulin dependent diabetes,

and maternal use of certain anticonvulsant (antiseizure) medications. While only

a few environmental factors have been characterized, many different studies

provide evidence that NTDs have a genetic component in their development.

Studies of twins with NTDs have shown both identical twins have NTDs more than

both fraternal twins. Studies of families show that the chance of having a

second family member born with an NTD after one child is born with an NTD

increases. For example, the general population’s chance of having an NTD is

approximately 0.1% (1 in 1000). However, once a couple has one child with an

NTD, their chance of having a second child with an NTD is increased to

approximately 2-5%. Further studies have shown

evidence for a genetic pattern of inheritance for NTDs.

NTDs are a feature (or symptom) of known genetic syndromes, such as trisomy 13,

trisomy 18, certain chromosome rearrangements, and Meckel-Gruber syndrome.

The Duke Center for Human Genetics is currently conducting a genetic study

called “The Hereditary Basis of Neural Tube Defects,†to determine the

causes of

NTDs. By studying families with NTDs, we hope to identify the genes that

contribute to the development of an NTD. We hope this research will allow us to

better understand the genetic and environmental causes of NTDs, which will

eventually lead to more accurate genetic counseling and risk assessment,

improved treatments, better prevention methods, and, possibly, a cure.

As a part of our overall NTD genetic study, we are also conducting sub-studies,

including investigations into the genetics of anencephaly and closed NTDs.

Anencephaly is one of the most severe, fatal forms of an NTD. Anencephaly is

defined as the incomplete formation of the skull, which is at the top of the

neural tube. We are particularly interested in helping uncover the cause(s) of

anencephaly, in the hopes of helping families understand this devastating

disorder.

Closed NTDs, such as lipo(myelo)meningocele, lipomeningocele, and tethered cord

occur when skin has grown over the NTD. The genetics of closed NTDs are not

currently understood. For many years, researchers have assumed that the

information about myelomeningocele is the same for the closed NTDs. The aim of

this sub-study is to determine if the same genetic factors that contribute to

causing open neural tube defects, such as myelomeningocele, are also responsible

for contributing to the cause of closed NTDs.

// top //

Subject: siblings also having TCS?

To: tetheredspinalcord

Date: Friday, May 6, 2011, 12:15 PM

Question for you all. Our 15 yo ds was diagnosed with TCS and

Scheuermann's kyphosis this spring. WE got our second opinion and are

now scheduled for TCS release surgery for June 27th.

Question is is there a genetic component on this and are siblings at

greater risk of having TCS? I am wondering becuase our youngest is a

big toe walker and I was told by a chiro a few years ago that this is

aassociated with toe walking, and Dr. Crone of Cincy Children's hospital

confirmed that when I spoke with him Wed at that appointment. I didnt'

think to ask him about this question. We aren't seeing any other

symptoms of TCS in the other kids, but then with our 15 yo we saw

nothing until he started developing this curve in his back. We still

thought that chiropractic and exercise would help, and had no clue it

was a physiological thing. Know better now a bit too late, painful life

lessons I guess. So anyway of course we'll be a lot more alert with the

other two kids, as they start really growing. but anyway my point

is..... is this something we should be concerned about specifically, or

just be aware in general obviously.

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

Our Lord refreshes us on the journey with some pleasant inns, but does

not encourage us to mistake them for home. ~~C.S.

[Guest guest]

I am the first born and I have sb, my half brother has sb occulta.

Sent from my Verizon Wireless BlackBerry

siblings also having TCS?

To: tetheredspinalcord

Date: Friday, May 6, 2011, 12:15 PM

Question for you all. Our 15 yo ds was diagnosed with TCS and

Scheuermann's kyphosis this spring. WE got our second opinion and are

now scheduled for TCS release surgery for June 27th.

Question is is there a genetic component on this and are siblings at

greater risk of having TCS? I am wondering becuase our youngest is a

big toe walker and I was told by a chiro a few years ago that this is

aassociated with toe walking, and Dr. Crone of Cincy Children's hospital

confirmed that when I spoke with him Wed at that appointment. I didnt'

think to ask him about this question. We aren't seeing any other

symptoms of TCS in the other kids, but then with our 15 yo we saw

nothing until he started developing this curve in his back. We still

thought that chiropractic and exercise would help, and had no clue it

was a physiological thing. Know better now a bit too late, painful life

lessons I guess. So anyway of course we'll be a lot more alert with the

other two kids, as they start really growing. but anyway my point

is..... is this something we should be concerned about specifically, or

just be aware in general obviously.

Thanks,

--

Jamison Griebenow, skookie@...

Blessed with husband Greg, Zachary c/s 8/95,

Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

~~~~~~~

Learn more about recovery from a difficult birth here:

http://www.midwiferytoday.com/articles/healing_trauma.asp

Our Lord refreshes us on the journey with some pleasant inns, but does

not encourage us to mistake them for home. ~~C.S.

[Guest guest]

My daughter was born with 2 forms of TCS. Her release was 4/18/11 at Duke. Her

pediatric neurosurgeon, Dr. Fuchs told us there is no genetic link with TCS when

we mentioned our concern with possibly having another child in the future. Just

wanted to share my info!

>

> Question for you all. Our 15 yo ds was diagnosed with TCS and

> Scheuermann's kyphosis this spring. WE got our second opinion and are

> now scheduled for TCS release surgery for June 27th.

>

> Question is is there a genetic component on this and are siblings at

> greater risk of having TCS? I am wondering becuase our youngest is a

> big toe walker and I was told by a chiro a few years ago that this is

> aassociated with toe walking, and Dr. Crone of Cincy Children's hospital

> confirmed that when I spoke with him Wed at that appointment. I didnt'

> think to ask him about this question. We aren't seeing any other

> symptoms of TCS in the other kids, but then with our 15 yo we saw

> nothing until he started developing this curve in his back. We still

> thought that chiropractic and exercise would help, and had no clue it

> was a physiological thing. Know better now a bit too late, painful life

> lessons I guess. So anyway of course we'll be a lot more alert with the

> other two kids, as they start really growing. but anyway my point

> is..... is this something we should be concerned about specifically, or

> just be aware in general obviously.

>

> Thanks,

> --

> Jamison Griebenow, skookie@...

> Blessed with husband Greg, Zachary c/s 8/95,

> Helena Joy HBAC 8/00, and Beren Gustav HB 4/04

> ~~~~~~~

> Learn more about recovery from a difficult birth here:

> http://www.midwiferytoday.com/articles/healing_trauma.asp

>

> Our Lord refreshes us on the journey with some pleasant inns, but does

> not encourage us to mistake them for home. ~~C.S.

>

[Guest guest]

I'm the youngest of 7 and have Spina Bifida. My two youngest brothers (3 1/2 and

2 years older than me) have Spina Bifida Occulta. 

Jodi

>I am the first born and I have sb, my half brother has sb occulta. 

>Sent from my Verizon Wireless BlackBerry 

[Guest guest]

Thanks to all for input. sounds like there probably is an increased incidence

in siblings. I will take that into account. Blessings to all.

>

> I'm the youngest of 7 and have Spina Bifida. My two youngest brothers (3 1/2

and 2 years older than me) have Spina Bifida Occulta. 

> Jodi

> >I am the first born and I have sb, my half brother has sb occulta. 

> >Sent from my Verizon Wireless BlackBerry 

>

>

>

>

[Guest guest]

While they are not sure what causes NTDs, there is a genetic component. You

probably want to talk to your OB before you start planning your pregnancy

about taking Rx Folic Acid for a minimum of 30 days before you try to

conceive. One of the possibilities they are researching is a defect in the

absorption of FA - but there appears top be a threshold that you can

overcome (since in some people it takes such a high dose to be effective).

Taking the Rx dose of folic acid (4G as opposed 400mg of the nonRx dose) can

decrease the incidence of NTDs)

Jenn

>

>

> Thanks to all for input. sounds like there probably is an increased

> incidence in siblings. I will take that into account. Blessings to all.

>

>

>

> >

> > I'm the youngest of 7 and have Spina Bifida. My two youngest brothers (3

> 1/2 and 2 years older than me) have Spina Bifida Occulta.

> > Jodi

> > >I am the first born and I have sb, my half brother has sb occulta.

> > >Sent from my Verizon Wireless BlackBerry

> >

> >

> >

> >