Spina bifida occulta - any symptoms?

[murphys]

If you know your dc has spina bifida occulta, do they have any symptoms that you know about?

Dd (12) has been having tests for backpain that will not go away, which they cannot find the source of. On the x-ray, they found a transitional vertebrae and spina bifida occulta.

The doctor is sure it isn't linked to any of the pain she is having now, but we know she has muscle weakness on one side (same side that opening in spine faces), the leg on that side measures much smaller than the other, as a baby she couldn't wear disposable nappies due to the elastic which caused welts, now I see that latex allergy is quite common in spina bifida cases. She has also had a lot of injuries to her weaker side of her body, simple things like being pulled up by her arm have pulled all the muscles etc. She is currently in a lot of pain with backache, as i said they cant find a cause for this, it started after she was running in pe a few weeks ago so could very well be muscle related.

It has been very frustrating, each test comes back fine but this poor child is getting no better. They keep saying its an incidental find and most people with it never know about it and have no symptoms.

She doesn't have any dimples or patches of hair which sometimes are a sign as well.

I don't know anyone else who has been diagnosed or their child has been diagnosed, so i don't have anyone to chat to about this.

Its upsetting. She has been off school for weeks and is currently having to walk with crutches the pain is so bad. She is reacting to a lot of the pain medication she being given (making her vomit). She is being treated by a specialist so you would think he would be the best man to be able to find out what is wrong.

Anyone?

[Coffeethrowtrampbitch]

I'm sorry I can't help much but my older sister has spina bifida.

She experiences lower back pain and it is made worse by standing for long periods.

She was told it was due to arthritis as her lower back was strained from compensating the weakness from her upper back, but was referred to Physio by one GP as she started a job where she was standing a lot and it got worse. She said the Physio definitely helped with the pain, they are good at dealing with pains caused by weakness or imbalance in one side. She did say if she forgot to do her exercises it got worse, so you would need to make sure dd continued to do them even if she feels better.

Good luck, spina bifida and associated conditions are rarer now and it can be hard to get support and information. Could the hospital refer you to a charity group which might have more information?

[Schulte]

I have spina bifida occulta and have had permanent back pain since I was 25 or so. I was told the back pain is due to another deformation of my spine though. Not sure if that's true.

One thing I was told is that when you have SP occulta, the risk of you having a baby with SP is much higher. So I had to take very high levels of Folic Acid during pregnancy.

[ghostwritter]

Phyio should be helpful as they will look at alignment issues, and have them check for a leg length difference. Not gp they simply do not do it often enough. In a 12 year old, any difference should be addressed, although older drs someti es say not worth it unless its more than cm, this is not true.

[OddBoots]

Have they done an MRI?

I have SBO and a related problem 'tethered spinal cord syndrome' which usually shows up on an MRI and can cause the symptoms you describe.

[Waitingonasunnyday]

I have spina bifida occulta but only found out during scan due to sciatica/back pain. Apparently 1 in 20 people has it. And is prob why I am left handed and a bit clumsy, but other than that hasn't affected me.

I am so sorry to hear of your DDs troubles and hope you can keep pushing for answers.

[Besta]

Dh has SBO and sd had a small dimple at the top of his bum as a baby which I was told was SBO.

Dh had all sorts of back problems as a child, lots of physio etc. 8 Yeats ago he had spinal surgery - disc fusion and bone graft from pelvis to strengthen his spine, pins and bolts etc. He's fine after surgery, but feels back pain if he does too much or the weather is cold.

No symptoms in ds as yet (he's 16).

[RueDeWakening]

My mum, me, my sister and all 3 of my kids have SBO, none of us have any symptoms afaik - I have some backpain, but I'm 40 with 3 small children, goes with the territory I think :o

I took prescription-only levels of folic acid during pregnancy, made no difference to the SBO but I was taking it to help with other stuff anyway so I wasn't really expecting it to.

[Waitingonasunnyday]

I had no idea about the extra folic acid thing, tbf it was after having children that I learnt I had SBO. I do get a lot of back ache but the consultant said 'it's gravity what do you expect?!' And I just put up with it.

Am wondering if I should have DC checked in some sort of way. They are far too grown up at 10 & 8 to allow bum dimple checking though!