2 1/2 year old son with Spina Bifida (Myelomeningocele) Hydrocephalus & clubbed feet.

Jamey - posted on 07/13/2012

Gini, you can also stay in touch with me. I have never really found too many moms with SB kids either! We most certainly need to stick together and help one another.

Jamey - posted on 07/13/2012

My daughter is 6 and sounds a lot like your son! LOVES to crawl, USED to stand on outter feet, bowl and bladder issues. . etc.!

It is not an easy issue but I have found so many ways to make life a bit more manageable.

Speak with your Ortho doctor abour a pair of KFO's. No one can expect your son to wear full braces all the time IF he is in them. BUT, for standing on the sides of their feet, as they get heavier, this can cause issues or broken bones. KFO's only go up to the ankle and it is open toe. It adds a bit of support so they can be as free as the other kids!

As for bowel, laxatives just tore my daughter up and also made it hard to control when she does and doesn't go. She was constantly passing small bits of bowel all day everyday. . So we do normal saline enemas twice a week or when needed. I can always tell when it is time for one. She will say her tummy hurts or she will get slight bloating around her vesicostomy site.
A vesicostomy is a hole they make under the naval that allows my daughter to pee freely, it just comes out when there is something in there. We dialate it once a day and no longer have UTI's. The only issue is we are STILL in diapers! Keeping her from leaking onto her clothes is sometimes a task. I have started using pads like cumberbuns and attaching them to the upper part of her pants for extra protection. We also wear scented powders to try and mask the smell of urine. I am 28 and had her and 21. I am no expert and learning something new every day! My daughter also has a shunt and we haven't had any problems with it as of yet. I am hoping that we don't. My daughter has a wheel chair, walker and is learning to walk with crutched. STRONG SPIRIT! Her feeling starts to fizzle out mid calf but I think sometimes she feels a little something. Her feet just dangle ( They were also clubbed) but I just make sure she watches them when she tries to stand barefoot, she now knows how to position her feet. If I see her going for an ankle stand, I say "foot" and she corrects it! =)

I most certainly know what you are going through and I know how it makes you feel at times. We are young, we are in a foreign zone of child care and we are learning as we go. Sometimes frustrating, sometimes overwhelming, sometimes rewarding... We were given special angels for a reason. You just got to roll with the punches ya know!

I would love to stay in touch with you and help you along the way. Maybe you can help me as well! It is a learning experience everyday and it takes a LOT of fight to get what you want from doctors, PT, etc. sometimes! Our kids sound so similar, I am sure we could relate on so many levels.

I also have an 8 year old, so I know what it is like when other siblings are involved. It takes a toll on everyone! There are ways you can deal with that as well to make it a bit easier for everyone. Best of luck to you! and please, keep in touch!

Gini - posted on 07/05/2012

Hey....I'm Gini....thought I'd reply since your situation sounds similar to mine.....I'm 29 with 3 kids as well....2 girls that are 9 & 10 & a son, Dayton who's 3. He has myelomeningecele which was diagnosed at my 1st obgyn visit at around 18 weeks. All the dr's told me I needed to terminate the pregnancy, that he would only live for a couple days before he'd die of infection. They said that his defect was too high, T8-9, and they weren't going to close his back or place the shunt. Then when they delivered him they said he was doing better than they'd expected and they did both. He's paralyzed from the chest down and they say he'll never walk. But he's all over the place!! He just had the surgery to correct the club feet (only so he can wear shoes) and got his braces. He had his first urinary tract infection and was hospitalized for 4 days last week. They thought it was the shunt at 1st but then found the UTI. But they decided to go ahead and replace the shunt in the next couple weeks cause its not working very effectively. Glad we caught it in time. As for the bladder and bowel issues Dayton will always have trouble. They've mentioned "bowel training" which is where you give them stool softeners at the same time every day and the bowel learns to go at that time daily. Hasn't worked for us though......