Re: One more hereditary WWYD question

[Guest guest]

In a message dated 1/8/2009 1:37:23 P.M. Eastern Standard Time,

lpizzillo@... writes:

So my ped today said maybe we should call our neurosurgeon and

explain what's going on (the sacral dimple, the crooked crack, the

constipation and now the FTT) and ask how far we should let her go

till we do an MRI. Like wait till she gets a UTI? Wait and see if

she develops walking symptoms, etc.

Unless your family has some hereditary reason they don't do well with

anesthesia or she has airway issues, 20 months is more than old enough to be

safe

for an MRI... And it's not FULL general anesthesia like with surgery where

they totally paralyze you and put you on a breathing machine, she would still be

breathing on her own, just unconscious from IV meds... The only time

they'd put you totally under full anesthesia is if you had airway issues and

they

feared you'd stop breathing with the IV sedation and they wanted full control

of the breathing process.

It's a personal choice, but with those concerns, I'd want to know one way or

the other for my peace of mind.

Connie

Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8

(CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal

fistula imperforate anus (repaired 5/00, managed with daily Exlax), single

kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment

lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06),

extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00,

5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial

torsion

and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux,

DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most

beautiful smile ever)

conni60640@...

Our website: _http://members.tripod.com/conni60640-ivil/_

(http://members.tripod.com/conni60640-ivil/)

VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_

(http://health.groups.yahoo.com/group/VACTERLNetwork/)

TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_

(http://health.groups.yahoo.com/group/LMC-TCS/)

Congenital scoliosis support group

_http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_

(http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/)

Anorectal malformations support - The Pull-Thru Network

_http://www.pullthrunetwork.org/index.php_

(http://www.pullthrunetwork.org/index.php)

S. Jersey

**************New year...new news. Be the first to know what is making

headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

[Guest guest]

I don' t think you are a paranoid mom at all. My 6yr old son has TC and my other

son 4yrs has been checked at every visit to this date to make sure he doesn't

show any signs. My ped told me that if one child has it, there is a higher

chance that your other child could have it. As long as you feel comfortable with

an MRI, then you should have it done. It won't hurt her to have it done and then

you will know for sure.

God Bless you and your family,

Subject: One more hereditary WWYD question

To: tetheredspinalcord

Date: Thursday, January 8, 2009, 1:36 PM

I'm the mother of Emma, who had the tethered cord surgery back in

May. Hers was a thickened filum, one that didn't show up on MRI.

Since the surgery she is 100% improved.

This question however, is about her younger sister, now 20 months

old. She has a sacral dimple (that doesn't go anywhere) and crooked

butt crack. She's never had a UTI (that's how Emma started) they did

a renal and bladder u/s but so far she looks normal (no

hydronephrosis, although Emma didn't get that till age 2 1/2). She

does however have chronic constipation. So now they're putting her

on a daily laxitive. She also now has failure to thrive, like Emma

had. (Not sure if that is related or not).

All her Dr.'s say that we should keep an eye on her for more symtpoms

but they wouldn't rush into an MRI b/c infants/children need general

anesthesia for it. We just saw a GI Dr. last week though and he says

he thinks we definetly should be concerned about her having it and

she SHOULD at some point have an MRI.

So my ped today said maybe we should call our neurosurgeon and

explain what's going on (the sacral dimple, the crooked crack, the

constipation and now the FTT) and ask how far we should let her go

till we do an MRI. Like wait till she gets a UTI? Wait and see if

she develops walking symptoms, etc.

My question is to be blunt: Do you all think she could have this

too? Or do you think this is mommy paranoia since one child had it

so I'm going to think she has it too?

Would you want an MRI now with no real symptoms, or would you be

content to just wait till she got older?

Thanks!

[Guest guest]

I would want testing now.

Subject: One more hereditary WWYD question

To: tetheredspinalcord

Date: Thursday, January 8, 2009, 6:36 PM

I'm the mother of Emma, who had the tethered cord surgery back in

May. Hers was a thickened filum, one that didn't show up on MRI.

Since the surgery she is 100% improved.

This question however, is about her younger sister, now 20 months

old. She has a sacral dimple (that doesn't go anywhere) and crooked

butt crack. She's never had a UTI (that's how Emma started) they did

a renal and bladder u/s but so far she looks normal (no

hydronephrosis, although Emma didn't get that till age 2 1/2). She

does however have chronic constipation. So now they're putting her

on a daily laxitive. She also now has failure to thrive, like Emma

had. (Not sure if that is related or not).

All her Dr.'s say that we should keep an eye on her for more symtpoms

but they wouldn't rush into an MRI b/c infants/children need general

anesthesia for it. We just saw a GI Dr. last week though and he says

he thinks we definetly should be concerned about her having it and

she SHOULD at some point have an MRI.

So my ped today said maybe we should call our neurosurgeon and

explain what's going on (the sacral dimple, the crooked crack, the

constipation and now the FTT) and ask how far we should let her go

till we do an MRI. Like wait till she gets a UTI? Wait and see if

she develops walking symptoms, etc.

My question is to be blunt: Do you all think she could have this

too? Or do you think this is mommy paranoia since one child had it

so I'm going to think she has it too?

Would you want an MRI now with no real symptoms, or would you be

content to just wait till she got older?

Thanks!