spina bifida occulta advice

[hannah_bubbles]

Hi guys, ive just joined the forum today and was just hoping fo some advice or any knowledge anyone has to offer. i was born with SB occulta and have had relatively few problems from it, at the age of 8 i had a tethered cord which was operated on and i still have all feeling etc. i was mainly curious to find out what to expect later in life, im now 20 soon to finish uni and have never really been informed on any problems that i may experience. im currently waiting to see my specialist as i have been suffering back pain for the last few months but just want to make sure its nothing to worry about and im sure ill find out some info from him, but i thought the best place for info was with the people who have experienced it first hand. so if anyone has any info to offer in terms of possible future problems, pregnancy and chances of passing it on to my children etc i would be very grateful. as i said, ive been kept in the dark most of my life and now i feel i want to know more. Thanks

[angel]

Hi Hannah,

I have an 11 year old with SB Occulta. I don't know about later in life but i can say that i expect the best for my son. So far with age he hasn't gotten worse. I know he is only 11 but they told me of things that could go wrong and they haven't yet. He had his tethered cord released at the age of 2 and he had a spinal fusion last year when he was 10.
I have SB myleo so i don't know if i passed it to him or not. From what i have read online and from the people with SB that i know i am the only one so far that i have met that has a baby with any form of SB. All of their babies had zero problems. My best advice would be to talk to a genetics specialist if you are concerned. I dont' plan on having any more children but that would be my first step if i were going to have another. Since my child had occulta i was told my chance of having another child with SB has gone way up. then you add the 5% greater chance (i think that is right) because i have SB as well. I was told by a genetics specialist that he would like to put me on MASSIVE amounts of folic acid (way more than you can get in any store) at least a year before i planned to conceive another child.

Hope that helps you a little,
Angel

[hannah_bubbles]

Thanks Angel, I think a genetics specialist will have to be my first step when I decide to start a family. I hope you and your son continue to keep well
Hannah