Help me figure this out?

[Alfiemama2]

A newbie here. Completely lost with what's wrong with my daughter.

Bit of backstory. She is 7 and when she was 2 had chicken pox and has never been right since. She started having absences and wetting. They found activity on one side of brain after EEG and slew induced EEG. Then did a brain scan to rule out a tumour. Thankfully all clear.

Absences have settled but she is now incontinent. She has daytime and nighttime enuresis and has wears pull-ups at night as we've been told not to tackle night time yet.

She is under hospital who prescribed oxybutin but since found she has UTI's every month without fail, after an investigation by an incontinence specialist. They took her off oxybutin suspecting it was this but she also had a lot of flushing from the tablets.

She has now been referred to a specialist hospital (Alder Hey) ultrasound was clear but she was busting and I was told she was only 60% full. But yet she went to the loo 10 times after completely emptying (full wees)

They have now scheduled a renal DMSA test and have put her on a daily antibiotic. But I'm lost really as to what it can be. I asked about reflux but they said unlikely at her age (7)

I'm even debating autism as her brother (13) has asd.

I'm sorry for all the waffle. I'm just completely lost. In a weird way, I want them to find something so we can help her. She says every night when will this wee problem go and it breaks my heart.

Any ideas? Thank you

[Littlecabbage]

I'm sorry that I can't offer any useful advice. It's hard to know whether everything is connected or not. All I can say is, we all know how it is to battle with these problems on a daily basis, and fully sympathise with you.

I guess just keep going back to the medical professionals, pushing for further investigations when you feel it's necessary.

Has your daughter had uroflow tests to measure the speed of her urine flow? After having these, and then an ultrasound scan straight after emptying, it was determined that my son was retaining urine in his bladder after supposedly emptying it, and that the speed of flow was too slow, indicationg an obstruction of some kind. He also had US scans which showed that he did have reflux (he is only 6) and therefore urine was accumulating around his kidneys. Has your daughter had a kidney scan, or just her bladder? Like your daughter, my son only has a small bladder capacity, even when desperate for the toilet.

Interestingly, my son also had absence seizures from age 6 months till about 3 years old, but that is probably just a co-incidence. We were advised that he would probably grow out of them, and he does seem to have done so.

I hope you get the answers you are seeking eventually.

[Alfiemama2 in reply to Littlecabbage]

Thank you, littlecabbage.

She had an US at Alder Hey (this will be her third now as they also scanned her at incontimence specialist) they have checked kidneys and size of bladder and whether she retains. But said only a small percentage and not enough to make a difference.

I've just spoke to the hospital about the DMSA but they said really it's just to check for scarring and not the cause. The specialist said if this is all clear they won't do anything else. Which surely isn't right?

Wow, that is a huge coincidence about the absences and sorry your son has similar issues. What is the plan for him?

Will he have bladder training for the capacity?

[Littlecabbage in reply to Alfiemama2]

Hmm, it doesn't sound right to me either that they will leave it there for your daughter. Are they saying she has an overactive bladder? If so, there are other medications available for this - tolterodine, solifenacin, which others on this forum may have experience of using. It sounds as if the oxybutinin hasn't suited her.

If they can't help your daughter get a confirmed diagnosis, maybe you should consider asking for referral to the Evelina in London? We are not there, but people on here seem very happy with their care. They have a specialist children's bladder and bowel clinic, led by a consultant called Anne Wright. I know you mentioned autism, but from your description of your daughter's issues, it sounds like a genuine medical problem to me, rather than a psychological or behavioural one.

I'm not sure of the plan for my son yet. It seems he has "voiding dysfunction" and the urologist at Birmingham Children's Hospital has booked him in for a spinal cord MRI to check for underlying causes, but says it is very unlikely to be abnormal. Then he seems to be implying there is not much more they can do. But I have been reading that the Evelina offers biofeedback training for precisely this problem, so will ask to be referred there if we hit a brick wall here.

[Littlecabbage in reply to Littlecabbage]

I meant to say, if you want any more detail about my son's tests etc, see my own posts. But it sounds as though your daughter and my son have a different underlying cause for their wetting problems.

[Alfiemama2 in reply to Littlecabbage]

Thanks littlecabbage. Yes it does sound like different issues. I really hope you get to the bottom of it and get some help. It's awful our little ones have to go through this. The fact that they just seem to go - nope don't know what it is so let's leave them to get on with it is awful.

I agree about the medication and wish they had offered an alternative. I'm willing to try anything. Maybe the incontinence bladder training team will offer this.

That sounds a good plan about the London Hospital.

We are having issues with her school so I think that is compounding the issue more. We are actually looking at a different school tomorrow.