Re: toddler - possible tethered spinal cord

[Guest guest]

Hi ...bless you and your family for having to find your way here.

Does she walk on her toes? They say that is a sign, I did but they

thought I was dancing. My TC wasn't diagnosed until I was 37, so if

they suspect it please let them rule it out and be thankful they even

bothered to notice. Hope all goes well, let us know.

>

> I'm brand new to this forum as of today. Actually, the first time I

had

> even heard of a tethered spinal cord was last tuesday when our 2

1/2

> year old daughter's pediatric urologist ordered up an MRI on her to

> rule out tethered spine (the 25th of Feb.). She is having a urinary

> tract problem (she has patent urachus) and while doing his exam on

her

> he noticed that she has a crooked little bottom-crack. We adopted

her

> when she was 9 months old, and we noticed it right away. We

actually

> just thought it was cute. Anyway, he said it's rare to have a

tethered

> spine, but because she is having an MRI on her bladder anyway, she

may

> as well have one on the lumbar area of her spine at the same time -

> just to rule it out. As you an imagine, we're quite worried that

she

> may have a tethered spinal cord....we're really trying not to worry

> about it, but that's nearly impossible. We have 12 more days to

wait,

> and I'm just trying to gather information " just incase " . She isn't

> showing any deficits other than her crooked behind....would she

> typically be showing more signs by now? Any information would be

> greatly appreciated. Thanks so much,

>

[Guest guest]

Hi ...Keep us posted and if it is Tethered Cord, the younger you find

out may be the better. Please also note that those of us here are the ones who

have had troubles and the majority of children have surgery and go on with

happy, normal lives. Hugs from a Mom to a Mom.

In a message dated 2/14/2008 1:37:53 A.M. Eastern Standard Time,

gina_sakamoto@... writes:

I'm brand new to this forum as of today. Actually, the first time I had

even heard of a tethered spinal cord was last tuesday when our 2 1/2

year old daughter's pediatric urologist ordered up an MRI on her to

rule out tethered spine (the 25th of Feb.). She is having a urinary

tract problem (she has patent urachus) and while doing his exam on her

he noticed that she has a crooked little bottom-crack. We adopted her

when she was 9 months old, and we noticed it right away. We actually

just thought it was cute. Anyway, he said it's rare to have a tethered

spine, but because she is having an MRI on her bladder anyway, she may

as well have one on the lumbar area of her spine at the same time -

just to rule it out. As you an imagine, we're quite worried that she

may have a tethered spinal cord....we're really trying not to worry

about it, but that's nearly impossible. We have 12 more days to wait,

and I'm just trying to gather information " just incase " . She isn't

showing any deficits other than her crooked behind....would she

typically be showing more signs by now? Any information would be

greatly appreciated. Thanks so much,

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

[Guest guest]

Hi

I am sure you must feel very afraid for your child. Be

thankful that someone even know what TC is and that

they are looking for it. My daughter was born with 4

of 5 markers for lipomyelomeningocele and was not

diagnosed until the age of 7.

Has your child been through an MRI previously? I am

assuming they will sedate her, so try to get you appt

first think in the AM bc they aren't allowed to eat

before the thest. Bring snacks -- ask for sedation

that won't cause nausea.

Does your daughter have any other strange marks on her

lower back? Deep dimple, unusual hairy patch, skin

tag, or hemangioma? fatty bump? Could these things

have been cosmetically removed before she was adopted?

(We were told ELlie's could be--thank goodness we

didn't or it may have been found even later)

Do you notice that your child hates being in a

stroller or car seat? screams when you brush her hair?

HATES shoes and socks? Our daughter was a very

sensetivie toddler--lots of tantrums that we

attributed to temperament, but I now think she was in

pain and didn't know how to let us know. I know many

small children w/o NTD's reisit many of the above, but

all of them together could be a red flag.

I hope that your MRI will come quickly and that you

will be able to remain calm while you are waiting.

Being a parent is the world's most difficult job when

your kids are healthy! Just try to remember that your

daughter is too little to understand why you are

stressed, but she can tell. She needs you to be her

biggest fan, her hero, and her best friend, which I am

certain you are. Just don't let the research into

possibilities overshadow that. (I did at first.) You

are smart to get information, but you cannot get back

lost opportunities for meaningful time with your baby

or husband.

Good luck with the docs. I will pray for your family.

mindy

--- Sakamoto wrote:

> I'm brand new to this forum as of today. Actually,

> the first time I had

> even heard of a tethered spinal cord was last

> tuesday when our 2 1/2

> year old daughter's pediatric urologist ordered up

> an MRI on her to

> rule out tethered spine (the 25th of Feb.). She is

> having a urinary

> tract problem (she has patent urachus) and while

> doing his exam on her

> he noticed that she has a crooked little

> bottom-crack. We adopted her

> when she was 9 months old, and we noticed it right

> away. We actually

> just thought it was cute. Anyway, he said it's rare

> to have a tethered

> spine, but because she is having an MRI on her

> bladder anyway, she may

> as well have one on the lumbar area of her spine at

> the same time -

> just to rule it out. As you an imagine, we're quite

> worried that she

> may have a tethered spinal cord....we're really

> trying not to worry

> about it, but that's nearly impossible. We have 12

> more days to wait,

> and I'm just trying to gather information " just

> incase " . She isn't

> showing any deficits other than her crooked

> behind....would she

> typically be showing more signs by now? Any

> information would be

> greatly appreciated. Thanks so much,

>

>

[Guest guest]

Our dd (now 7) didn't have a crooked crack, but it appeared to be more

of an elongated crack - it is actually a sacral dimple just above the crack.

At that age, she was showing signs of constipation.

Jon

toddler - possible tethered spinal cord

I'm brand new to this forum as of today. Actually, the first time I had

even heard of a tethered spinal cord was last tuesday when our 2 1/2

year old daughter's pediatric urologist ordered up an MRI on her to

rule out tethered spine (the 25th of Feb.). She is having a urinary

tract problem (she has patent urachus) and while doing his exam on her

he noticed that she has a crooked little bottom-crack. We adopted her

when she was 9 months old, and we noticed it right away. We actually

just thought it was cute. Anyway, he said it's rare to have a tethered

spine, but because she is having an MRI on her bladder anyway, she may

as well have one on the lumbar area of her spine at the same time -

just to rule it out. As you an imagine, we're quite worried that she

may have a tethered spinal cord....we're really trying not to worry

about it, but that's nearly impossible. We have 12 more days to wait,

and I'm just trying to gather information " just incase " . She isn't

showing any deficits other than her crooked behind....would she

typically be showing more signs by now? Any information would be

greatly appreciated. Thanks so much,

[Guest guest]

Hi ,

We just had an MRI done on our son, and it went smoothly. You may want to prep

her for the IV she will need to have for sedation. They rub on a numbing creme

and then do the IV. After that she'll be asleep quickly and won't remember

anything. If it turns out you do have a tethered cord, there is a great group of

families with young children who have lipomyelomeningoceles. To joinYahoo!

Groups : LMC-TCS and hit the Join button

-Shea

toddler - possible tethered spinal cord

I'm brand new to this forum as of today. Actually, the first time I had

even heard of a tethered spinal cord was last tuesday when our 2 1/2

year old daughter's pediatric urologist ordered up an MRI on her to

rule out tethered spine (the 25th of Feb.). She is having a urinary

tract problem (she has patent urachus) and while doing his exam on her

he noticed that she has a crooked little bottom-crack. We adopted her

when she was 9 months old, and we noticed it right away. We actually

just thought it was cute. Anyway, he said it's rare to have a tethered

spine, but because she is having an MRI on her bladder anyway, she may

as well have one on the lumbar area of her spine at the same time -

just to rule it out. As you an imagine, we're quite worried that she

may have a tethered spinal cord....we're really trying not to worry

about it, but that's nearly impossible. We have 12 more days to wait,

and I'm just trying to gather information " just incase " . She isn't

showing any deficits other than her crooked behind....would she

typically be showing more signs by now? Any information would be

greatly appreciated. Thanks so much,

[Guest guest]

Hi - I wasn't diagnosed until I was 10. My mom kept telling the docs that

something was " off " about me ( I am the youngest of 5). I had was diagnosed

with a bladder problem when I was 5 and they still didn't know what was going on

because as they told my mom, I looked so happy and " normal " . I was very

uncoordinated, had a hard time learning to ride a bike also, I would cry if I

would walk to far or go up and down stairs to much. I would sit at the top of

the stairs and tell my mom she had to carry me down cause my legs were to tired

or I would go down on my bottom. The doc told my mom that I was just a spoiled

child and she needed to make me walk and not to pick me up when I cried that my

legs hurt!!!! I never had any " marks " of having a tethered cord/spina bifida.

This went on for years until my mom finally found a doc that would listen to

her.

I'm glad that you have a doc that found it (if it is it) quickly. She will be

fine either way though!!

S.

Sakamoto wrote:

I'm brand new to this forum as of today. Actually, the first time I

had

even heard of a tethered spinal cord was last tuesday when our 2 1/2

year old daughter's pediatric urologist ordered up an MRI on her to

rule out tethered spine (the 25th of Feb.). She is having a urinary

tract problem (she has patent urachus) and while doing his exam on her

he noticed that she has a crooked little bottom-crack. We adopted her

when she was 9 months old, and we noticed it right away. We actually

just thought it was cute. Anyway, he said it's rare to have a tethered

spine, but because she is having an MRI on her bladder anyway, she may

as well have one on the lumbar area of her spine at the same time -

just to rule it out. As you an imagine, we're quite worried that she

may have a tethered spinal cord....we're really trying not to worry

about it, but that's nearly impossible. We have 12 more days to wait,

and I'm just trying to gather information " just incase " . She isn't

showing any deficits other than her crooked behind....would she

typically be showing more signs by now? Any information would be

greatly appreciated. Thanks so much,

Tom's Electric,Inc

- Fax

www.TomsElectric.com

---------------------------------

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Thank you to everyone who responded! It was all so helpful and

informative, thank you so much for that. I'll definitely give the

other yahoo group a try as well, the one more geared toward parents

with children with tethered spinal cords. Good luck to all of you and

many blessings to each and every one of you.

> I'm brand new to this forum as of today. Actually, the

first time I had

> even heard of a tethered spinal cord was last tuesday when our 2

1/2

> year old daughter's pediatric urologist ordered up an MRI on her to

> rule out tethered spine (the 25th of Feb.). She is having a urinary

> tract problem (she has patent urachus) and while doing his exam on

her

> he noticed that she has a crooked little bottom-crack. We adopted

her

> when she was 9 months old, and we noticed it right away. We

actually

> just thought it was cute. Anyway, he said it's rare to have a

tethered

> spine, but because she is having an MRI on her bladder anyway, she

may

> as well have one on the lumbar area of her spine at the same time -

> just to rule it out. As you an imagine, we're quite worried that

she

> may have a tethered spinal cord....we're really trying not to worry

> about it, but that's nearly impossible. We have 12 more days to

wait,

> and I'm just trying to gather information " just incase " . She isn't

> showing any deficits other than her crooked behind....would she

> typically be showing more signs by now? Any information would be

> greatly appreciated. Thanks so much,

>

>

>

>

>

>

>

> Tom's Electric,Inc

>

> - Fax

> www.TomsElectric.com

>

>

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

>