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[kidsrustx]

My name is Nicole and I have an almost 13 year old son who was diagnosed with SBO on May 23, 2008. He has a lipomyelomeningocele and tethered cord. We are just getting started in this major process and still a little bit in shock.

My son was having problems with his left ankle which prompted a trip to an orthopedic surgeon. He is the one who diagnosed the spinal lipoma through an MRI. I was shocked that this was what was causing the problems with his leg. And more shocked to find out that this was why he had been such a challenge to potty train. He has a hemangioma on a fatty area on his lower spine and a crooked butt crack. Why his pediatrician didn't clue into these simple things as signs of SB, I don't know.

Anyway, I'm thrilled to find this site and I hope that I can find valuable information about my son's condition and iminent surgery.

[mommy2cnj]

Hello and welcome to the site.

I have a son who is 13, a daughter who is 9, both having SB.

As for your son's doctor not being clued in, some pediatricians & GPs do not know enough about SB. My kids had a pediatrician who, when we started going to him, he let me know up front that he could see them for colds, flus, etc, but he didn't know enough about SB to treat for that; at the time, this was fine with us, because we had all of our specialty docs in place, already. It is nice, now, having moved, we see a different set of docs altogether; my children's current pediatrician/GP does know quite a bit about SB, as well as having told us he will be studying more into it, due to my children. He's not one that ever takes a chance with my child's care. There's no question that one of them have flu-like symptoms, he will not hesitate to run the tests needed to know whether it is just the flu or whether it's related to their individual needs.

I'm sure you'll have many questions. I hope you gain much info from this site, and by all means, if you haven't noticed any posts on something you're wanting to know, please ask.

I know on one hand, it's nice to have an actual diagnosis, but on the same hand, it can also seem a bit overwhelming. We're here, if and when you should need us.

Take care!

[angel]

hey i have an 11 year old that has SBO. He was also a challange to potty train and it took years and we still have bad days. These days usually happen when he is having bowel problems.

He was diagnosed at birth because they were looking for it. I have SB myleo and walk with crutches and use a wheelchair to do house work etc... I don't know if they would have found it so soon otherwise. It sounds like we are in the same place as far as the preteen stage with our boys. We have 11 years of knowing about this and you are just learning so if you have any questions just ask.

Angel