Unsure what to do (daughter can't pee)

[Jourdain11]

Not really an AIBU, unless IAU for not taking her straight to A&E, but I'm wondering if anyone has ever come across something like this? My 10-yeqr-old daughter (who has OCD and can get a bit stressed about going to the toilet) has woken up this morning and "can't pee". She feels like she needs to go but nothing is coming out.

Has anyone ever come across something like this and if so, what did you do? She seems otherwise okay - no temperature, etc. She seems uncomfortable, but not in agony or anything.

Maybe I am being unreasonable in not running her straight to hospital - but I suspect it's going to right itself, although I will follow up because it seems very odd. She has T1 diabetes and OCD as I said, but I don't particularly see how this could be related.

Also, this is in the context that DD1 has quite severe OCD which can manifest itself in a number of ways. One is that she'll constantly keep going to the toilet and trying to pee even when she doesn't need to

Actually - who confidently ruled out any physical issues around this?

It sounds like the discomfort and odd sensations around needing to pee could have been happening for a while, and been dismissed as psychological and solely down to OCD.

Whereas it could be neuropathy has suddenly got worse.

Thanks - it's still all very new to us (DD only diagnosed in Dec 21) so we are trying to learn all the time!

Your tip about possible neuropathy in the bladder was helpful, because I was aware that this can happen in other ways, but really hadn't thought about it in terms of the bladder. The doctor mentioned it as a possibility. They also are wondering if there's a psychological root but he (the doctor) felt it's a bit too extreme. Plus, she said sometimes she's been trying to pee and she could only get a trickle after 2 or 3 tries. She needs to have further testing done, but they've ruled out a lot of things today.

Hope you and your daughter are OK OP xx
As a parent of an ASD child with other health issues who has lots of issues surrounding toileting & bowel movements including withholding, I feel your pain and worry. It's not easy having another thing to worry about all day and every day when they already have health issues. Hope it gets sorted out quickly and you dont have to stay in hospital too long!

Good point. This is what we were reassured when DD developed this back and forth to the toilet habit. I was always worrying that it was due to hyperglycaemia but we were reassured that it was likely due to stress adjusting and her OCD and nobody really probed any deeper.

I do feel shit that I didn't realise she was having this difficulty!

Hope you get to the bottom of this. It must be very worrying to have your child in hospital.

For what it's worth I would not have gone to A&E first off either. I would have done the things you did like check with 111 etc

I hope your dd is ok OP and they can figure out the cause quickly 🌷

Realistically, I think we won't get all the answers over the weekend because she needs to have some urodynamics testing which they weren't able to arrange today. On a basic level, she had ultrasounds and it seems her bladder has "stretched" and is holding more than it should. She's been shown various techniques to see if they'd help her to empty her bladder, but they didn't. So for the moment, she has to have an indwelling catheter because she can't pee by herself. Nobody was available to show self-catheterisation but at least for the moment she's comfortable. I'm worried, but trying not to let it show too much.

Are they keeping her in or letting you come home with the catheter .

I wasn't able to pee for a few weeks. I had an indwelling catheter and then I was shown how to self catheterise. It really is not too bad. It takes getting used to but it doesn't hurt. This trained my bladder to work correctly. Feel free to pm if you have any questions. I hope you are all able to sleep

We came home. They were floating keeping her in as they will do a lumbar puncture tomorrow just to check some very unlikely possibilities, but she was desperate to come home and there was no reason for her to need observation so it was agreed that she comes back tomorrow for that procedure. She got very distressed by the catheter being put in and she was absolutely knackered, so she fell asleep like a log. My younger two were high as kites and it took ages to get them to go to bed, but they're sleeping now finally!

@aloris Note the whole comment. The daughter would have a diabetic nurse who she would see regularly. This nurse would have explained things to the mother as a lay person. Do you understand that? There are also self help groups who she could turn to as well as medical professionals all of whom would have greater knowledge than people offering advice even with personal experience. Do you understand now?

@GrisleyR My comment still stands. In the meantime I hope that the daughter recovers quickly.

Hope it goes well tomorrow @Jourdain11

Please ask them to see if she has pots it takes only a few minutes to check her heart rate lying down and again when standing up.

Urinary symptoms are common in many conditions which affect the autonomic nervous system such as PoTS and approximately two thirds of patients with PoTS have been shown to have bladder problems. In our experience, these symptoms often include a very sudden and unpleasant need to pass urine without much prior warning.

@Jourdain11 Is she on major sedative/ antipsychotic medications? Has the dose or type of her OCD meds changed over the last month or so? When I was let out of the psych hospital once, my meds were such that I really had to drag myself to the loo- my instinct was to just sit/lie in one spot. I can see that someone could kind of stretch their bladder that way by just not getting round to going.

But that's just a random thought of mine. I know you say she's usually obsessive about going.

Hope all's sorted soon x

Sorry I should clarify - it has a poor reputation for closures and staffing/capacity issues (eg having to defer places that have been offered at short notice). Anecdotally, I have heard the care is good and the children are happy.

There is no need to be condescending. Clearly the diabetic nurse did not explain this particular thing or else the OP would have known it was a possibility she should consider. As the OP has pointed out, similar (albeit less severe) symptoms were explained to her, by the child's doctors, as OCD.

Hi @Bananabreadandcupofcoffeethanks, I didn't spot this yesterday but thank you for sharing. This is quite interesting because DD does actually have mild gastroparesis. She started getting a lot of stomach aches and bloating around 6 months after her T1 diagnosis and we also realised that her levels weren't quite doing what they should after meals and eating. She had a gastric emptying scan on her consultant's say-so and it showed that she had a delayed, but not massively slow, gastric emptying rate. She doesn't take any medication for it, but she has to have a low residue diet (which is challenging alongside T1...).

Thank you - and yes, I don't think urinary retention came up in any of her appointments and things to watch out for discussions. Urinary symptoms might have been mentioned less specifically, but I would've assumed it was more like the frequency and large volumes she experienced when diagnosed.

She's not on any meds for OCD so I don't think it will be medication-related.

How is she today @Jourdain11

She is okay, thank you! A bit fed up and a bit tired from all the hanging around hospitals but seems alright in herself otherwise. She still has the catheter in but she has to go back into the same day care tomorrow so that a nurse can explain the intermittent type and she also has some additional tests. Pretty much everything has shown up negative so far (although the results from the lumbar puncture won't be back for a while) and the call we had with the diabetes nurse this morning was reassuring. She's very anxious about missing school and is worrying that she's going to fail all her SATS.

SATs mean absolutely nothing and have no bearing on her future education. Please reassure her of that.

SATS are very unimportant especially in comparison with her health , hope she gets well soon

I've absolutely reassured her that no one is ever going to ask about her SATS results (from the day she leaves primary school, most likely!). But she gets anxious about schoolwork and worries about falling "behind". But she's also very worried about going back to school while she can't basically pee by herself, so I hope it's going to be possible to do something. I'm really worried about what has caused it and how/if it will get better, although I'm trying not to show it! Poor kid has too much to cope with health-wise already and she could really do without this added into the mix.

poor kid. fingers crossed they can get to the bottom of it ASAP!

Also, sorry for my rather abrupt first comment - I hadn't read the whole thread, or even the last page, and should not have posted anything before knowing the full facts. Hope you're doing ok yourself, it must be horrendous not knowing what's the matter or what you as a mother can do to help.