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.

Thank you, that's really nice of you! Don't worry, I can see it seemed a dumb question - I knew she was going to need to be seen, but I thought there's no loss to trying to get her a bit more comfortable before we set off.

I'm fine - just a little frazzled!

Surely the school can set online work like during covid.

You would think.

DD2 collected work for her today and brought it home - super retro!

I’m sorry to hear about your daughter but have been following your post and updates and really glad she is at home and in a more comfortable position right now even if it means she has to keep going back daily for tests and procedures.

I wanted to write that I became sick at 11 which involved basically being inpatient nearly my whole teen life. It got so bad I got open ward access so I didn’t even need to go to A&E, just straight to the children’s ward and if I could have been treated at home via home health then I would have much rathered that so I completely understand your daughter not wanting to be there full stop.

As for actual school I did full back dramatically but that was because I didn’t have such a supportive parent as you are. I had to move to a different school that ultimately decided to put me into online schooling (I was home schooled twice before this) and I know times are VERY different than when I was at school but when I got to college I was able to ask for additional work to be sent home so I can still do work on those days I was recovering which they allowed.

my little brother is about 10 years older than your daughter and he was too far ahead for his school years so they moved him up to the highest level they could in his year and when he was still too high they wanted him to be put in the year above.. My mum refused this as he would possibly have been left behind in the year above so instead they agreed to give a bulk of extra work each term to be submitted at the end of term on top of his school work.

Just wanted to let you know that the school absolutely can facilitate your daughters needs right now so she doesn’t need to stress about falling behind at all and it’s great she now has some work to do at home but if you or she feels she needs more they can 100% do that and I believe she can also get a temporary tutor come to your house for her too.

I hope your daughter is doing OK. I don't post much but have been following this thread, I'm also type 1 diabetic and have some autonomic neuropathy (not affecting the bladder). I also have a child with very high anxiety which sometimes manifests in bizarre and extreme physical symptoms so can completely understand why you wanted to try other options before taking your daughter to the hospital. I'll be thinking of you and your daughter and hope you get answers soon.

How is it going @Jourdain11 , has she still got the catheter

Thank you for your kind posts and for sharing experiences - I really appreciate it! Sorry I have been slow to reply, DD is at home but not back at school yet and I'm trying to juggle work, etc.

She's had all her ultrasounds and urodynamic tests now and all the preliminary indications are that the signals from her brain aren't connecting up properly with the bladder, so she can't pee even though she's full. She still has the catheter in for now because she can't go without it, and also her bladder is a bit stretched, but they've switched it over to a "flip flow" one with a valve, so she can basically empty straight into the loo on a schedule rather than it just draining all the time. The catheter is an infection risk, so ultimately she needs to switch over to the intermittent ones.

She's alright in herself, although still stressing about missed school and SATS! Her teacher had sent her some messages on the online learning site (which is super thoughtful of him) and has set her some work to do. She's been fine with the reading and writing and topic, but got a bit confused with her maths because they were starting something new and she doesn't quite "get it". She's desperate to go back and now she's home and the appointment follow ups are scheduled it's easier, but she's a bit (okay, a lot) anxious about something going wrong with the catheter at school. I can understand her nerves, but she's been fine with it at home, so I think it should be okay!

If she’s feeling confident enough to go in that’s great , perhaps she could just do part time for a bit . ( covering the maths lessons )

My heart goes out to your daughter @Jourdain11 and to you too of course. I'm sure the catheter will be fine at school, but it just seems so bloody unfair that she has to manage this now as well as the type 1 itself.

So nerve issues/ autonomic neuropathy then? Has anyone discussed what the outlook is?

Sometimes neuropathy can be reversed with really tight blood sugar management, I know that's much easier said than done though, especially with hormones kicking in in a pre teen. But the more 'normal' the glucose is, with less variation between soaring highs and dramatic lows - the better the outcomes, typically.

I'd really recommend a Dexcom if your daughter doesn't have it already, preferably in conjunction with a Tandem pump where it will integrate and you can use Control IQ, where they work together to increase basal to combat spikes or cut insulin if she drops too low. Sorry if this is all old hat to you and you have this already! Just thought I'd mention it incase you're still working with a Libre and pens.

Also, have they checked her B12? B12 is essential for nerve function and given the cards are stacked against us with T1D to begin with, it's worth checking that they are optimal. Pernicious anaemia (lack of B12) is also more common in type 1s as it's another autoimmune condition.

Good news, I'm sure we are all pleased.
One word of warning with the flip flow valve. Make sure it is pushed in over all the ridges. If the valve falls out, the bladder empties down ones leg.
Personal experience!

So glad she's home. I am sorry you both have this to deal with, it doesn't seem fair on one so young.

@Bananabreadandcupofcoffeethanks
@MeinKraft
@cormorant5

I'm so sorry I didn't come back and reply to you - I did read your comments and it was lovely of you to be so supportive. Things were a bit crazy those weeks and I just didn't get round to writing out a reply.

DD is doing better; she's regained a little bit of bladder function but it's still hard for her and sometimes she can't. The tests also showed that she wasn't emptying her bladder properly even when she could pee, so she's been taught to self-catheterise and she's got on top of it really quick! It's much better for her because she doesn't have to worry about catheters, people noticing, it coming out OR whether she's going to be able to pee when she needs to.

She's had a full round of blood tests and neurological tests too and one thing they found was that her B12 was really low and she was very anaemic as a result. (Good thought @Bananabreadandcupofcoffeethanks !)

The formal diagnosis is autonomic neuropathy (and I think I mentioned that she has mild gastroparesis too). The hope is that it will improve with tight blood sugar control and improved B12. Unfortunately she's down with Covid and isn't very well at all this weekend (cough, temperature) and her levels have been a bit all over the place.

But she's doing amazingly well on the whole and I'm really proud of her. It's a lot to contend with!

I do feel quite upset about it because (from what I've read) it's not really reversible, despite the attempts to improve it through diet and B12. It's rubbish that she might have to deal with these things forever. (I didn't go into much detail about her gastric issues, but there are a lot of foods which give her really bad stomach pains and she can't really eat more than tiny meals or she just vomits it back up.) I'm also quite anxious that she might get further issues like sensory neuropathy or irregular heart beat. I feel that I should have spotted these things sooner - I'm her mum and I should be able to protect her from these things!

You’re doing an amazing job OP and it sounds like she’s managing really well. Hope things start to look more positive for you and your DD.

@Jourdain11 has she been checked for Ehlers Danlos? A lot of these issues seem very familiar to me except I had more gastric issues growing up than anything else, later learned all my conditions are linked and can trigger one another. So I have EDS type 2 which can cause many of the bladder issues your daughter is experiencing as well as gastric issues, I also have Gastroparesis (was so bad when I was younger they wanted to place a gastric pacemaker but I refused), Cyclical Vomiting Syndrome, Mast Cell Activation Syndrome, GERD and possibly PoTs. Every single one of these can be present with EDS and so many more conditions like Diabetes. None of these conditions will ever go away but you do learn to adapt to them as your daughter is already managing. I have bladder issues but never to the extent your daughter has, but having a collagen disorder can cause all sorts of issues body wide. Just thought it’s worth a look into as many of these conditions don’t have official tests to diagnose them that will say positive or negative like Gastroparesis and PoTs, some are a process of elimination which is harder to manage as things can crop up in later life without realising. I was born with EDS and had tell tale signs but it was missed until I was a late teen!

@Jourdain11 it is NOT your fault and we cannot protect our children from everything.

I know, but I still feel like I should have done better!

She's anxious about missing school if she's not better by tomorrow (she missed quite a lot before the holidays), and I can't even manage to convince her that her chances of life success don't depend on SATS! She's been slogging at her maths every day during the holiday - odd child.

Thanks for this - they did raise EDS when her gastric issues were diagnosed but she didn't meet the criteria on other points. She gets in such a lot of pain with her stomach problems sometimes and a knock on is that she gets very constipated too. She's had endless cycles of getting constipated and then having to go through laxative treatment which is quite unpleasant. And like I mentioned, she's not always very good at telling me about things because she's embarrassed and hopes it'll get better on its own. But I get it - she's an almost 11 year old and obviously starting to feel a bit more self-conscious about body things (although in some ways, and certainly physically, she's not getting teenagery). It just means I need to be really vigilant!!

I forgot to say also, thanks for this! Although she has been able to return thankfully, and has coped quite well, it is good to be aware of the options.

Hi Op!

Thanks to a neurological condition I have a bladder where my brain and bladder don't connect properly but I was unable to self cath.

I saw you were looking at long term as its irreversible, mine is neurogenic/neuropathic bladder and just over a year ago I had a sacral nerve stimulator placed, it has been life changing.
I actually pee normally, except I charge my bladder once a week.

I just wondered if this info might be of use, mine is by medtronics.

I found Caths and self caths petrifying, as well as hospitals so please tell your daughter I think she is wonderful and so very brave!

Oh, that's really interesting to know it works so well! Thanks for sharing, especially since it's about your own condition. I had read about sacral nerve stimulation online but it's hard to get a sense of how well it works for people. So it's good to hear that it has been positive for you!

We did have about 2 days of tears and "can't do it" with the self-catheterisation, but then she's just got on with it. I am full of admiration to be honest! I do think partly it's been that she hates hospitals so much that she's happy to do anything to minimise the visits (and I did shamelessly push that point).

One unexpected positive side effect is that it's really helped her to get over one of her OCD fears. She had a big phobia about going to the toilet outside the house in case they were dirty (I assure you that our toilet at home is not spotlessly clean), but now because she has to self-catheterise on a schedule, she has to - and she's coping.

I don't know if it's the same for you, but she still has some sensation and she can feel when her bladder is full but she just can't 'go'. I found out that in the fortnight leading up she'd have to try 3 or 4 times to be able to wee and she was pressing on her tummy to try and squeeze it out. I just feel bad (and a bit cross) that she did not tell me. But she "didn't want to go to the hospital"...

I've no clue on any of the medical stuff being discussed here. But you are 100% doing a great job as her mum. I'm a stranger on the internet and I can see that from your posts your truly are doing a fantastic job

That's amazing!

I'm happy to talk more about it, There's quite a few of us out in the SNS community.

My neurological damage is quite substantial (was paralysed, now almost 90-95% recovered) so although my bladder is stretched, I will never know I need a wee myself. I monitor it myself and when I first had the sns fitted I'd get to around 3pm and look like I was about to go into labour and you'd see me physically shrink after going to the loo.
My urodynamics showed my spinal cord injury (not caused by trauma but a reaction) have caused me to have no.detrouser function at all, so whilst it took 30 min I might get a few drops out, but I'd never wet myself as my spinster was just shut too tight.

She sounds an incredible little girl and you sound great too. It does sound like she's handled it so well and that the hospital have been good too

It sounds like your daughter is managing extremely well and you have done all you can @Jourdain11 , absolutely no need for you to be berating yourself .