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[kerilynn47]

Hi, my name is Kerri and my 3 year old was just diagnosed with SBO with complications. I have been fighting to get help for her since she was crawling however I was repeatedly told that she would "grow out of it" until a few weeks ago when a doctor finally listened. I have known that she had SBO due to a sacral dimple and confirmation on a spinal x-ray at 14 months. I have also known that she was experiencing complications due to it, but trusted the doctors. Luckily we finally were referred to an orthopedist yesterday due to a disturbance in her gait. The orthopedist watched her walk for a while and then told us that it was not an ortho problem but a neurological problem. He then proceeded to take x-rays and showed us the disruption on her s4 vertebrae. She has a partial drop foot on the left side and she internally rotates her left hip, which causes her to walk with a supermodel type swagger. It is very cute at the age of 3, but I don't know how she will feel about it at 13. She has not been able to potty train her and fear that it may be related to the SBO. We are set up to see a neurologist next week and are in the process of getting her in with a neurosurgeon (there are no pedi neurosurgeons on our plan so we have to do a bit of paper work). I don't know if there is anything else that I can do or should be doing at this point. Any advice would be very helpful.

Thank you,

Kerri

[LisaJoy]

Hi, Kerri! There are several of us on here with variations of sbo with cord tethering (which is probably what your daughter has). I have lipomeningocele, split cord malformation, and sacral agenesis. I'm 46; walk with one brace & crutch (but walked without any aides until age 38); and have neurogenic bladder, for which I catheterize and take Ditropan. I'm also a college history professor.

I hate to say this, but a neurologist is going to be pretty much useless. They typically don't treat kids with sb and its variants, because it is a surgical condition (except in the rare cases where the child also has a seizure disorder, which yours obviously does not, or you would know). So be prepared not to find out much until you get to the neurosurgeon. And absolutely INSIST on seeing one. One thing the neurologist can do to speed things up is order an MRI. It needs to be of the head and the full spine -- all the way to the very bottom of the sacrum (this is extremely important -- some radiologists will just image to where the cord is SUPPOSED to end (L1-2), but in tethered cord, it goes a lot lower. My cord ends at S2, six vertebra lower than normal). It is really important to get a FULL scan as a baseline.

The other piece of advice I have for you is to go ahead and make an appointment with a pediatric urologist, because the neurosurgeon is going to send you there anyway (and the neurologist probably will). Your daughter very likely has neurogenic bladder -- inability to potty train is a classic tethered cord/sbo symptom. It is important that she have a urodynamic study to find out if she is retaining urine and/or has reflux of urine back into the kidneys, both of which could be happening without your knowing.

http://www.lpch.org/clinicalSpecialtiesServices/COE/BrainBehavior/Neurosurgery/tetheredCord.html

http://www.medscape.com/viewarticle/562658_6

I'm glad you found us; we're here to help.

[kerilynn47]

Thank you so much for your support. I will be speaking to her pediatrician tomorrow and will also request a urology consult. We were very lucky that the orthopedic surgeon that we saw gave us a disk of her back x-rays which shows where the disruption of the chord is and I will insist upon a full set of MRI's because it is in her sacral area. I am confused about the tethering. If she was tethered, would I have seen a significant decrease in function or is it a more gradual thing? Also would it have stopped her from growing. She was in the 50 - 60% for weight on the chart and is now off the bottom of it and she was in the 75% for height and is now in the 25%. It just seems to be all connected.

Thank you so much for your support and advice,

Kerri

[Dodger67]

Hi Kerri
Welcome! :happy065:
One thing you'll learn quite fast is that you sometimes have to kick butt when dealing with medical professionals, some of them can be really slow on the uptake.
Also want to confirm what LisaJoy said, a complete head and spine MRI is essential as well as a Urodynamic examination.

[LisaJoy]

Sudden neurological changes can definitely happen in children with sb--if they hit a growth spurt it puts traction on the spinal cord. Between growth spurts and after growth stops, slower deterioration is more the norm.

Your daughter's stop in growth could be related, but I would think she'd be beginning to show signs of scoliosis (common in tethered cord because the spine grows, but the cord doesn't move like it is supposed to). Kids can also just grow unevenly though. The MRI will tell all.

[kidsrustx]

Every case of tethered cord is different. My son's is tethered very low, but he didn't really start to have obvious signs of deterioration (other than bowel and bladder that we didn't recognize as signs of a nerve problem) until he was 12. So he went undiagnosed for 12 years!

You definitely need to see a neurosurgeon and get an MRI. You won't be able to tell if she's tethered or if there may be a fatty tumor type (lipomyelomeningocele or fatty filum) aspect to her SBO without it.

Keep us updated.

[sbmama]

Hi and welcome! :) My daughter has tethered cord and a lipomyleomeningocele. You defintely need to see a neurosurgeon and a urologist. Has she had problems with constipation? She may end up needing a bladder and bowel program instead of traditional potty training.

[kerilynn47]

She has never had a problem with constipation. Actually if anything, she poops too easy and never has a clue that she has pooped unless she smells it. I am figuring that as far as the bowels are concerned she most likely has no sensation there. She has had some nasty rashes because of this and doesn't complain. When she was a baby we used to call her a rabbit because she always had poop in her diaper. Now she usually only goes once a day, but she is perfectly content to walk around in it. She will also sit on weird or uncomfortable surfaces and not seem to notice.

Thank you

[n3rdchik]

Belated welcome Kerri!

Where are you located? I am sure someone here can give you names of good neurosurgeons in your area. My 4 month old also has SBO/lipomyelomeningocele. We are trying to get his detethering surgery moved up as we are seeing more issues lately. So {{{hugs}}} - dealing with insurance and referrals and doctors can be frustrating!

[LillyPie]

Keri,
A bowel program really helps with the poop accidents. Before the bowel program Lilly would go all day, anytime she exerted herself. Laughing, walking, running, climbing, crying.. Her poops were never really hard, but were large.. lumps. I never thought she was constipated because she went everyday.... until they did an xray. She was pretty backed up.

We first started off with having her sit on the potty and push, it worked but she still had accidents. Now we have an enema routine. Every other day we do the enema and she has no accidents inbetween. I just started the enemas and do them per instructions from our local spina bifida clinic.

BTW, have you contacted your local spina bifida clinic, they may be able to get you in soon, and you will see many different specialist in one day. Not all cities or states have one but its something to look into.