Re: Adam's Story

[Guest guest]

Welcome Barbara,

Marlee takes the Miralax as well. We have found that she tolerates it much

better that the others we tried. She too has bladder concerns (residuals), but

we are not yet cathing....although they continue to threaten...he he!

Marlee has retethered at just a year since her surgery, but nrsgn and we think

we are best to manage syptoms (bowel, bladder, ortho, back pain) vs. surgery

since we are not yet sure what of these syptoms she brought from birth....that

combined with the fact that she is walking (with afo's/smo's) made us think we

should wait and see.

As far as any other concerns with retethering, I am not sure. Most of us have

been told the way the body heals causes all tcs to retether...the biggest

question then becomes.....are there symptoms? and in our case she had concerns

prior to surgery........ we are New to this too!

Mom to Marlee 17 mos. Lipomyelomeningocele, TSC

AFO's, and the longest eyelashes I have ever

seen! Also Mom to Macy 4 (fatty filum)..the

future's first female president and 9

a good student, cheerleader and the best

helper in the world! : 0 )

Adam's Story

Hello,

My son, Adam, who just celebrated his 6th birthday last week was born with a

dermal sinus tract/tethered cord. He was born with a small bump on his lower

spine which led to his first MRI at less than 24 hours of age and detection of

the tethering. (My Mom called the bump " God's little post-a-note " because we

wouldn't have known otherwise.. He had his first and so far, only, surgery at

1 week of age - talk about heart wrenching - handing over your newborn ( &

firstborn) for spinal cord surgery! Anyway, the only issues we've faced so far

is some difficulty with bladder/bowel continence. He is doing extremely well

with bladder control but has had many BM " accidents " due, I think, to reduced

sensation probably from the surgery itself. The only professional advice we've

received so far is a prescription for a Miralax and to increase fiber. Any

additional tips anyone can offer? Is it worthwhile, for example, to get a

Pediatric Gastroenterologist involved in my son's ongoing follow-up treatment?

Also, I'd appreciate any insights at what I should be aware of and looking for

as time passes other than gait changes/bowel & bladder function changes? I've

been searching for a support group for TCS for some time so that I can,

hopefully, be prepared should his cord re-tether in the future. Thanks for being

here!!

Barbara