Anyone have, or have child with spina bifida OCCULTA

[StudentMadwife]

interested to speak to anyone who has or has a child who has-Im not talking about spina bifida im talking about spina bifida OCCULTA
TIA

Yep, DD has spina bifida occulta, aswell as other condition
What did you want to know?

well, here goes. i was born with sacral dimple(inside not visble) and wet the bed until about 15yrs old(still have problems now in that dept) now am undergoing treatment for congenital deformities in 3&4th toes which after some extensive reading could all be related-ortho has never seen my particular deformity so has referred me to someone even more specialised in feet. am seriously thinking of mentioning all this to dr when i go back on wed as they dont know about my sacral dimple, prepared they will fob me off but curious to rule it out. on reading it seems best way for diagnosis is mri, is his right? what problems, if any does your dd have concerning this condiditon?

DD has sacral dimples, but very prominent and visible, which is what prompted investigation and got us a diagnosis at 6 months old. It does sound very much like it's related. My DD has had foot problems since birth, she was born with severe talipes, and although much better now (she's 8) she also has deformities in 3rd and 4th toes.
She is completely incontinent, but she suffered a tethered spinal cord when she was a baby, and there was nerve damage which I suspect was the cause of that, she also walks with a severe gait.
DD also has another ocndition though - sacral agenesis, which is bones missing from the sacrum, which has much of the same syptoms as spina bifida occulta, so it's hard to say which has caused what!
You should be able to diagnose spina bifida occulta with an x-ray as far as I'm aware, it is a spinal deformity so would show on xray.
For further investigations though an MRI would be done yes, DD has one every year to ensure nothing has changed with her spinal cord. (she also has a cyst there that they monitor)

hth
feel free to ask anything else.

sorry, what i meant by not visible is that the sacral dimple IS visible, but the end of the dimple isnt as it curves round

sort of into my back/ spine IYSWIM?

that is v interesting that she has defomities of the exact same toes as me...

Sorry, I get you (am easily confused )

It is isn't it, thats exactly what I thought when I read it.

thanks, Im definately going to mention it to the consultant on wednesday and maybe book to see gp to discuss if he fobs me off. will let you know what happens

bumping in case anyone else can share thier story

bump

My Mum was in her late 20s when a doctor asked her "how does your spina bifida affect you?" "what spina bifida?" that was the first she knew about having spina bifida occulta. As a teenager she had been a hurdler for her school and always been active. When I was 12 I had a fall at school and they thought I had crushed my spine from the x-ray, a specialist said that it is actually deformed (don't know how as I didn't see it, I remember how white Mum's face was when she came to tell me, Dad is a radiographer so they saw the x-ray) I haven't been told if it is SBO or not, I was left alone. I did suffer from incontinence for most of my childhood and no cause was ever put down for it, even now I can have problems.

it does say that 10% of population have it without knowing. Im just curious that it may all connect together-childhood bedwetting, nocturia, abnormalities of the toes etc

The consultants thought that I had SBO but then decided that it was Lumbar diastematomyalia which basically was a piece of vertebra growing through and separating my spinal chord. They hadn't invented MRI scans when I was diagnosed and operated on. However, I'd definitely ask your GP for referral for an MRI.

bump

My DD had a visable sacral dimple at birth, and the doctor that checked her over in the hospital wrote spina bifida occulta on her notes.

However she had no further tests, and when I asked my GP about it at DD's 6 week check he said it was nothing to worry about as loads of peeple have it without even knowing it and they have no problems.

I don't know if DD has any problems with bedwetting / incontinence as she's not potty trained yet (she's only 19 months). However, my MIL told me that both she and by SIL had bedwetting problems until their teens and it seemed to run in the female side of the family. So now I'm wondering if this has anything to do with SBO? Do you know if it's inherited?

Sorry that's not really much help to you. I would definiely mention it to your doctor though.

It is inherited, I had to take a higher dose of folic acid when I was pregnant and it was on my notes to check for during my scans (I refused the test).

Really Tinker? I'm TTC No2 - now I'm worried I should be taking more folic acid. Do you think I should see my GP about this?

DH has this. He is also very sporty, and only found out when he went for a chest x-ray whilst having pneumonia. He's had no real problems at all apart from goes to the loo a bit more often than average. I took folic acid religiously when pg and the boys are fine.

My ds had one, it was operated on when he was 2.

And my cousin's grand daughter has one.

Peppermint, speak with your GP about being a higher risk than normal. It puts you at a higher risk of both types so you should definitely be asking for a higher dose.