Tethered cord/spina bifida occulta

[Superhanz]

I apologise for posting in AIBU I'm hoping it'll get more traffic here.

I fell pregnant naturally with DD after infertility, it was a huge shock and at the time I was on medication which could possibly cause neural tube defects.

She was born healthy and met all milestones til around 9 months when started to fall behind in gross motor skills. She didn't crawl til almost 11 months and didn't pull to stand til almost 13 months, she still isn't cruising or standing unaided at 13 months. It was something I was going to raise with the HV at her 1 year review which is this week. The other night while bathing her I noticed she has a sacral dimple, it is very tiny just a little shallow crease, no hole or anything, it's barely there. I only know what it is because a friend had a baby with a very pronounced one.

Here's why I'm concerned, she's been constipated since about 9 months so is on daily movicol. She also turns her toes in a really strange angle, her toes are often curled up. I thought they'd straighten up over time as its not like she can't straighten them but they often are curled in that strange position. She has never walked in the baby walker, never kicked her legs in the bath or jumped in her jumparoo. She's always been able to bear weight fine but has never bounced when her hands were held like you typically see babies do. I thought this was possibly some kind of SEN as she never had any weight bearing issues but now I've got massive concerns, especially about tethered cord.

Could someone please tell me their experiences and who is it I need to see, after what I've read I'm scared it's so urgent that I feel like trying to get in with a private specialist ASAP.

Thanks

Doctor here.

First of all, stay calm. Even if your suspicion is correct, at this stage, this is not an emergency, and a week or a month isn't going to make any difference to your daughter's future health.

Next thing is that she needs to be seen and assessed by a doctor. This will be the GP at first, and if necessary, they will refer to your local paediatric services. They may also arrange additional tests. If you're desperately keen on going private, they can refer to a paediatrician privately as well, but few see private patients, at least in the UK.

Finally, back to number 1 above, stay calm, it'll be fine.

Good luck.

My daughter had spina bifida occulta. It wasn't diagnosed until she was 12. She had an operation to cut the tether and another to straighten her foot. She is now 40 and although one leg is slightly shorter and one foot smaller, she is fine. I hope you get your dd diagnosed soon and she gets the help she needs.

One of mine has a sacral dimple and severe constipation. The MRI showed no tethered cord. Good luck.

My little one had bad constipation, refused to weight bear through her legs, can't remember when she cruised but she was flagged by the HV at her 12 month check. She walked at 15 months (which is within normal development)

She's 22 months now and as far as we aware she has no issues with her gross motor development.

The constipation started to settle once she got moving too - no longer on daily movicol although she still needs the occasional suppository

My Dd Has the dimple, and was later than average to gross motor milestones - didn't walk til 20 months. No concerns from any health professionals as she was constantly developing.
She's 5 now and can't do buttons to save her life and still struggles a bit with dressing

Thanks so much for all your replies. In the cold light of day I'm feeling a bit more pragmatic but it is something I'll raise with the HV/GP. I think because of the medication I was on in early pregnancy there is a lot of guilt that I'm dealing with and I do think it may have affected her. It's pretty soul destroying thinking I've potentially harmed her.

Could someone advise if it's a neurologist or a neurosurgeon that we'd need to see to check her over? Thanks

Sorry, posted under other name.

I had a tethered cord and had the untethering this year. I was sent to a neurosurgeon who then sent me for an MRI.

I have a sacral dimple and one leg longer than the other. I’m in my 50s and didn’t even know this was a thing!
Come to think of it I think one of my grown up children might have too. It was never raised as an issue.
What does it mean?

My son has a sacral simple he's 4 no problems as far as I'm aware