Aibu to make a gp appointment because I panicked myself with Google

[pelicantown]

My dd is nearly 7and has never been able to use the toilet consistently. She does use it but has multiple accidents a day and has no bladder control at all at night (so we are not talking a single accident at night - it's constant wetting through the night like a baby).

She has some behaviour issues and the gp referred us for assessment for autism but I'm told the wait is long for an appointment.

Anyway. Recently I was googling for suggestions of how to help her with daytime wetting. I am so lost what to do - nappies don't really fit anymore and the nighttime pants just don't hold enough.
Our house is wrecked and tbh we are running out of money to replace and repair things - both from her wetting and her destructive behaviour.

While googling I found a post by someone with spina bifida occulta who describes a gap in the bones of their spine which you can feel . She also had similar incontinence issues .

My dd has a gap like that - so bumps down her spine gap which is smooth then the rest of the bumps . You can feel it and also see it since it's clearly a gap in the bumpy bits of her spine that none of my other children have.

I have always noticed it but tbh not thought about it I just assumed it was just how her spine was and always has been. After reading that I'm starting to wonder if the two things could be linked.

BUT I feel a bit stupid taking something I googled to the doctor - my gp was pretty upset when I googled the medication I was prescribed when pregnant so I can't imagine this will go down well.

Aibu to call up for an appointment based on a 5 year old post I found on an obscure forum on google? Seriously have I gone mad in desperation?

I have spina bifida occulta and it wasn't picked up until I was 14. I had lots of back pain and it was confirmed with X-rays. I've been lucky that I haven't had any other symptoms but it can easily be missed by doctors.

I would definitely be going to the GP and you should make a fuss if you aren't taken seriously. It must be so difficult and draining for your family! Hope you get somewhere with the doctor and get some help and answers.

I did a fair bit of reading up on Spina Bifida last year (my dd was diagnosed with it at her 20 week scan, sadly at the very extreme severe end of the scale & so we took the very tough decision to terminate). From what I learned at the time Spina bifida occulta is the most common and least severe form, it is unknown how common it is as it can go completely undetected (often only picked up if the person has an unrelated back problem). Spina bifida is often accompanied by hydrocephalus (excess fluid on the brain), which can have a range of impacts both physical & mental. On this basis I don't think your concerns are unfounded - I would defo see the GP, go with an open mind though (there's probably hundreds of other things that could be going on!) and if you feel that the GP is being dismissive don't be afraid to seek a second opinion or insist on a referral to pediatrics (in fact I think that is what I would be doing anyway). Also worth contacting Shine (the spina bifida charity), they will be able to give you loads more info on the condition, and support if you need it. Best of luck, I really hope you get the answers you need soon x

I run research on congenital bladder issues that lead to either the inability to pee or the inability to hold. I am specifically looking at neurological, rather than structural, defects that cause these issues. The very first slide in every presentation I give is to highlight the apparent overlap between patient symptoms and those often seen in spina bifida (as an example of a congenital spinal column lesion). In addition, injury to the sacral spinal column (the very lowest part), accidentally in humans or induced in animal models, routinely leads to incontinence.

So, from my POV, you could well be on to something, OP. Please don't be worried too much about the idea of spina bifida - occulta (meaning = hidden, so wouldn't be picked up in routine newborn or childhood screens) is usually very mild and often asymptomatic. So don't extrapolate anything from the single issue that your child has, into anything more serious (and that's not to minimise what you're going through with her).

What to say to your GP: The issue is serious harming your child's (and your) daily life. Having talked to a friend who researches congenital bladder disorders, the possibility of a neurological cause was suggested as a possibility. would something like spina bifida occulta be plausible, given that I've also noticed she appears to have uneven vertebrae, which might be relevant.

Where is the "gap" in her spine?

A paediatric referral is appropriate no matter what any underlying cause turns out to be. Perfectly reasonable to make a routine GP appointment (obviously not urgent/ emergency) to discuss your concerns. [DOI I'm a GP]

I'm just astounded she hasn't been referred for this already. You are not talking about a child who sometimes wets herself or cannot be bothered to use the loo, she actually has no control.

See GP, be firm you want a specialist opinion, preferably with a paediatric urologist.

Really hope you get help. She may well qualify for DLA and equipment from the local incontinence services so time to push for help.

Allanda UK do child / adult nappies by mail order.

Thanks everyone - maid the gap you can feel is just below her waist level. I will be making an appointment next week and I will ask for a referral about this.

There are all sorts of potential reasons. Yes definitely insist on referral to general paediatrician and discuss concerns. A referral to paediatric continence service should follow shortly afterwards.

I have a ds who has spina bifida (the most severe type, although he has not been as severely affected as we were told to expect) and continence issues (is dry and clean with intervention), and a dd with a different complex health condition who is still in nappies at 8.

As pp have said, spina bifida occulta is thought to be really common, as it's not usually detected at all unless the patient needs an x ray for other reasons. I don't think it's unreasonable to ask the questions you're asking, but I wonder if you'd feel more confident talking to the gp after a chat with Shine, the spina bifida charity - I'd think they'd give you some pointers.

www.shinecharity.org.uk

Is it possible to get a referral to nhs continence services?

Ds is under these as he is 6 and still in nappies.

They can supply nappies or pads on the nhs, as your ad has ongoing issues with this, they would also be able to talk to school about care plans.

My friends ds has large pads that go in his pants, and a little girl I know uses tena style pants, so there are suitable products out there.

I had suspicions that ds has a tethered cord

Good luck