Re: tethered cord help needed.

[Guest guest]

WOW I really got something started here.. Sorry my reply is late but I

work to many hours. Jeanie The reason for the MRI was because

had double hip dysplasia surgery a little over 2 yrs ago ( maybe 3 I

have to check ) the same surgery that W. daughter had and he

quit bareing any weight on his legs and feet after he got out of

casting. We went to see genetics and they were concerned that

may have nerve issues with his legs and feet due to all of his ortho

issues and they wanted his dimple checked out that is on his lower

back. They sent us to Nero and they said he needed a MRI to rule out

tethered cord. Well they could not rule it out. 's hips are

also coming back out of the sockets so we don't know what to do for

that since the last surgery did not help. The Tethered cord is a big

issue but I think they are really concerned with is C1 since this is

were the head sits on. From what I have been told it's not formed

right and not in one solid piece and that is scary. I am not sure

what is going to take place but I hope it's not as bad as it sounds.

As for others who spoke about symptoms that are not Charge related

well is the King of that. He has many Charge related issues,

Coloboma, renal, gential, hearing, feeding issues, stenosis of the

nose passages, growth issues a very high palet and much more.

also has alot of issues that has nothing to do with Charge also.

Sever clubfeet, joint disease in his ankles, short bones in arms and

legs, a larger head, hip and spine issues and a Marker Chromosome

disorder they cant figure out among others. I just try to take things

day by day and pray for the best as parents that is all we can do.

What really makes me so mad is that I have ask PCP about having

this dimple checked out a number of times and he would say it nothing

to worry about and now here we are maybe facing a major surgery I just

wish that the doctors would listen more to the parents and just do the

checks maybe if they did that we would avoid some major issues down

the road.

mom to 12yrs April 29th..

>

> ,

> I'm afraid I don't have any answers, but a couple of questions. Why

did

> have the MRI , were there symptoms or issues with his spine?

If so,

> did this just develop? My 8 year old daughter will soon need

scoliosis

> surgery and there has been talk of a tethered cord, which may be

> contributing to urinary incontinance. Hope you get answers and best

of luck.

>

> Jeanie Colp

> mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

>

[Guest guest]

WOW I really got something started here.. Sorry my reply is late but I

work to many hours. Jeanie The reason for the MRI was because

had double hip dysplasia surgery a little over 2 yrs ago ( maybe 3 I

have to check ) the same surgery that W. daughter had and he

quit bareing any weight on his legs and feet after he got out of

casting. We went to see genetics and they were concerned that

may have nerve issues with his legs and feet due to all of his ortho

issues and they wanted his dimple checked out that is on his lower

back. They sent us to Nero and they said he needed a MRI to rule out

tethered cord. Well they could not rule it out. 's hips are

also coming back out of the sockets so we don't know what to do for

that since the last surgery did not help. The Tethered cord is a big

issue but I think they are really concerned with is C1 since this is

were the head sits on. From what I have been told it's not formed

right and not in one solid piece and that is scary. I am not sure

what is going to take place but I hope it's not as bad as it sounds.

As for others who spoke about symptoms that are not Charge related

well is the King of that. He has many Charge related issues,

Coloboma, renal, gential, hearing, feeding issues, stenosis of the

nose passages, growth issues a very high palet and much more.

also has alot of issues that has nothing to do with Charge also.

Sever clubfeet, joint disease in his ankles, short bones in arms and

legs, a larger head, hip and spine issues and a Marker Chromosome

disorder they cant figure out among others. I just try to take things

day by day and pray for the best as parents that is all we can do.

What really makes me so mad is that I have ask PCP about having

this dimple checked out a number of times and he would say it nothing

to worry about and now here we are maybe facing a major surgery I just

wish that the doctors would listen more to the parents and just do the

checks maybe if they did that we would avoid some major issues down

the road.

mom to 12yrs April 29th..

>

> ,

> I'm afraid I don't have any answers, but a couple of questions. Why

did

> have the MRI , were there symptoms or issues with his spine?

If so,

> did this just develop? My 8 year old daughter will soon need

scoliosis

> surgery and there has been talk of a tethered cord, which may be

> contributing to urinary incontinance. Hope you get answers and best

of luck.

>

> Jeanie Colp

> mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

>

[Guest guest]

lisa ru right all drs need to listnen i remember when i was younger the

people at emergency would say its up to you wne mum rang hmm glad they did

leave ti up t her coz often her decision was better than theres LOL

>

> WOW I really got something started here.. Sorry my reply is late but I

> work to many hours. Jeanie The reason for the MRI was because

> had double hip dysplasia surgery a little over 2 yrs ago ( maybe 3 I

> have to check ) the same surgery that W. daughter had and he

> quit bareing any weight on his legs and feet after he got out of

> casting. We went to see genetics and they were concerned that

> may have nerve issues with his legs and feet due to all of his ortho

> issues and they wanted his dimple checked out that is on his lower

> back. They sent us to Nero and they said he needed a MRI to rule out

> tethered cord. Well they could not rule it out. 's hips are

> also coming back out of the sockets so we don't know what to do for

> that since the last surgery did not help. The Tethered cord is a big

> issue but I think they are really concerned with is C1 since this is

> were the head sits on. From what I have been told it's not formed

> right and not in one solid piece and that is scary. I am not sure

> what is going to take place but I hope it's not as bad as it sounds.

> As for others who spoke about symptoms that are not Charge related

> well is the King of that. He has many Charge related issues,

> Coloboma, renal, gential, hearing, feeding issues, stenosis of the

> nose passages, growth issues a very high palet and much more.

> also has alot of issues that has nothing to do with Charge also.

> Sever clubfeet, joint disease in his ankles, short bones in arms and

> legs, a larger head, hip and spine issues and a Marker Chromosome

> disorder they cant figure out among others. I just try to take things

> day by day and pray for the best as parents that is all we can do.

> What really makes me so mad is that I have ask PCP about having

> this dimple checked out a number of times and he would say it nothing

> to worry about and now here we are maybe facing a major surgery I just

> wish that the doctors would listen more to the parents and just do the

> checks maybe if they did that we would avoid some major issues down

> the road.

>

> mom to 12yrs April 29th..

>

>

> >

> > ,

> > I'm afraid I don't have any answers, but a couple of questions. Why

> did

> > have the MRI , were there symptoms or issues with his spine?

> If so,

> > did this just develop? My 8 year old daughter will soon need

> scoliosis

> > surgery and there has been talk of a tethered cord, which may be

> > contributing to urinary incontinance. Hope you get answers and best

> of luck.

> >

> > Jeanie Colp

> > mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

lisa ru right all drs need to listnen i remember when i was younger the

people at emergency would say its up to you wne mum rang hmm glad they did

leave ti up t her coz often her decision was better than theres LOL

>

> WOW I really got something started here.. Sorry my reply is late but I

> work to many hours. Jeanie The reason for the MRI was because

> had double hip dysplasia surgery a little over 2 yrs ago ( maybe 3 I

> have to check ) the same surgery that W. daughter had and he

> quit bareing any weight on his legs and feet after he got out of

> casting. We went to see genetics and they were concerned that

> may have nerve issues with his legs and feet due to all of his ortho

> issues and they wanted his dimple checked out that is on his lower

> back. They sent us to Nero and they said he needed a MRI to rule out

> tethered cord. Well they could not rule it out. 's hips are

> also coming back out of the sockets so we don't know what to do for

> that since the last surgery did not help. The Tethered cord is a big

> issue but I think they are really concerned with is C1 since this is

> were the head sits on. From what I have been told it's not formed

> right and not in one solid piece and that is scary. I am not sure

> what is going to take place but I hope it's not as bad as it sounds.

> As for others who spoke about symptoms that are not Charge related

> well is the King of that. He has many Charge related issues,

> Coloboma, renal, gential, hearing, feeding issues, stenosis of the

> nose passages, growth issues a very high palet and much more.

> also has alot of issues that has nothing to do with Charge also.

> Sever clubfeet, joint disease in his ankles, short bones in arms and

> legs, a larger head, hip and spine issues and a Marker Chromosome

> disorder they cant figure out among others. I just try to take things

> day by day and pray for the best as parents that is all we can do.

> What really makes me so mad is that I have ask PCP about having

> this dimple checked out a number of times and he would say it nothing

> to worry about and now here we are maybe facing a major surgery I just

> wish that the doctors would listen more to the parents and just do the

> checks maybe if they did that we would avoid some major issues down

> the road.

>

> mom to 12yrs April 29th..

>

>

> >

> > ,

> > I'm afraid I don't have any answers, but a couple of questions. Why

> did

> > have the MRI , were there symptoms or issues with his spine?

> If so,

> > did this just develop? My 8 year old daughter will soon need

> scoliosis

> > surgery and there has been talk of a tethered cord, which may be

> > contributing to urinary incontinance. Hope you get answers and best

> of luck.

> >

> > Jeanie Colp

> > mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11

> >

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

,

You really hit it on the head. I can't tell you the number of times

that I have asked about things only to be told " oh don't worry about

it " and then later on it's quite the opposite. My son was sent home

after he was born with a clean bill of health by the neonatologist,

without a mention to any abnormalities (I mean, even *I* noticed the

coloboma). I remember asking my son's first neurologist way back

when if my son was mentally retarded and he said " no, he is not

retarded, I can tell because he's got a sparkle in his eye. " What is

THAT supposed to mean? He was great in all other aspects, but that

comment really bugged me. It irritates me that my concerns are not

taken seriously sometimes. Occasionally I've had to resort

with " name-dropping " , making the comment that my sister is a ped.

neurologist and I spoke to her about such-and-such or mentioning

that my dad is a doctor, then suddenly they are SO interested in

what you have to say, like you are now on their level by-proxy.

In any case, sorry for the rant and I hope everything turns out for

!

[Guest guest]

,

You really hit it on the head. I can't tell you the number of times

that I have asked about things only to be told " oh don't worry about

it " and then later on it's quite the opposite. My son was sent home

after he was born with a clean bill of health by the neonatologist,

without a mention to any abnormalities (I mean, even *I* noticed the

coloboma). I remember asking my son's first neurologist way back

when if my son was mentally retarded and he said " no, he is not

retarded, I can tell because he's got a sparkle in his eye. " What is

THAT supposed to mean? He was great in all other aspects, but that

comment really bugged me. It irritates me that my concerns are not

taken seriously sometimes. Occasionally I've had to resort

with " name-dropping " , making the comment that my sister is a ped.

neurologist and I spoke to her about such-and-such or mentioning

that my dad is a doctor, then suddenly they are SO interested in

what you have to say, like you are now on their level by-proxy.

In any case, sorry for the rant and I hope everything turns out for

!

[Guest guest]

chris im getting off here as quick as i can coz im tired and one of my

friends is involving me with her probs with our other firends which is

annoying me coz dont wanna be involved but i wanna tell u both my mums

brothers r nruses ones in aged care professor phd other ones physc nurse in

the blue mountains comunity health team and mum has said on times oh hohns a

phd in aged care and he says this or mark is a physc nurse and hes said that

anumber of times my paed allways listend to her shes even met them once and

goes yes i agree with wat they say in fact both my uncles wives were and r

nurses so lol lynnes acutaly a dress maker now and her mum was a nurse so

big history in my fam LOL ellen who is going to bed now and georgis stopped

talking and sevies offline and shes gonan sort ti out sorry for rambling but

im jsut a bit annoyed

>

> ,

> You really hit it on the head. I can't tell you the number of times

> that I have asked about things only to be told " oh don't worry about

> it " and then later on it's quite the opposite. My son was sent home

> after he was born with a clean bill of health by the neonatologist,

> without a mention to any abnormalities (I mean, even *I* noticed the

> coloboma). I remember asking my son's first neurologist way back

> when if my son was mentally retarded and he said " no, he is not

> retarded, I can tell because he's got a sparkle in his eye. " What is

> THAT supposed to mean? He was great in all other aspects, but that

> comment really bugged me. It irritates me that my concerns are not

> taken seriously sometimes. Occasionally I've had to resort

> with " name-dropping " , making the comment that my sister is a ped.

> neurologist and I spoke to her about such-and-such or mentioning

> that my dad is a doctor, then suddenly they are SO interested in

> what you have to say, like you are now on their level by-proxy.

> In any case, sorry for the rant and I hope everything turns out for

> !

>

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>