Spinal tap and wetting?

[mumbychoice]

My daughter is nearly 8 and wets herself 1-7 times a day. None of the health professionals can find an explanation. My daughter had a spinal tap/lumbar puncture on the day she was born. I have just done some reading around it and am wondering if that could be the cause of it all. Has anybody here had experience with this? Is there any hope that this could be treated?

[Hls494]

My daughter is 6 and has urinary incontinence like your daughter, has your daughter suffered with any uti? My daughter had a lumbar puncture at 3 weeks old (query meningitis) I would be interested to know if there is a link,

[mumbychoice in reply to Hls494]

She had a UTI when she was 20 months. I'm having a look at some scientific literature and the link between spinal damage resulting in incontinence is reported. Also that spinal tap can cause spinal shock and damage. I'm going to try and delve into this deeper.

[Helen36]

Hello

I’m so sorry for your daughter. I also have an eight year old daughter that has wetting and soiling and I know how heartbreaking it is to see them hate this. We keep talking about how so many children have bits of theirs bodies and heads that don’t work quite how they are meant to - dyslexia, short sightedness, autism, cerebral palsy - whatever we can see around her to help her feel less different.

So - a few ideas:

I can see you have been on oxybutynin from previous posts. There are other overactive medicines to try - I would. Oxyb doesn’t work for everyone.

Have you ever done a disimpaction? (Where you completely empty the bowel through giving increasing amounts of movicol/other osmotic laxative). Our bladder issues are all caused by what is in the bowel pressing on the bladder. My daughter isn’t constipated any more but I am pretty sure her bowel just presses on it making it twitchy. A disimpaction is horrible to go through but if you get some dryness this might help you understand if there is a link to bowel ‘design’. Or it might help rule it out. I’m a great believer in ruling stuff out!

On the spinal tap thing - i don’t know. I’ve been on this forum for five years and never seen it asked before. One idea - are there any forums out there where there are parents of children who had spinal taps as babies you could ask?

One thought is that there is a physical condition that can cause the messages from the bowel/brain to get blocked in the spine. The NHS clinical pathway for continence shows a first step asking the child to bend over and check the spine. I don’t know why, but I seem to remember that a slight hairy patch (!) on the lower back is part of what they are looking for! Can you ask about this with your paediatrician?

Final thought - I took my daughter to see a chiropractor, and then later an osteopath. They look at spine alignment and trying to focus on getting the messages working to the brain. I was too nervous to go through with it for the chiropractor in case something got cracked about (!) but was all set to start with the osteo when covid hit. We had one session before lockdown and she was dry for about 48 hours after which was amazing for her at the time. Others on this forum have had success too, others not. It’s not cheap and if you go for it - do ‘shop around’ for someone who is trained to do this with kids.

Hope that helps, just ideas. X x

[mumbychoice]

Thank you for taking the time to respond in so much detail. Yes, we have been down the whole constipation/disimpaction route. We did it 3 times and it always only took 3 days or less to get to "rusty tea". She has also been under a constipation nurse. We will have one last appointment with them before being discharged. No constipation treatment has affected her wetting accidents. They seems to be independent of it (or continue regardless).

I thunk the reason they check the spine is to check for spina bifida, which she doesn't have. But it implies that the connection between spine and bowel bladder control is important, so a spinal tap could also be relevant. I'm starting to trawl through the scientific literature and I think it's a possibility. I just don't know how you would diagnose it and most of all if it is treatable.

Your report from the osteopath is encouraging! We have a friend who is a retired osteopath and had put us in touch with one here in Salisbury. I am hopeful (though I and my daughter don't want to be disappointed again!). I'm sure I'm not the only one on this forum clutching at straws! Money is less worrying than all the stress and upset it causes, so I'm willing to try anything!

Are you going back to the osteopath?

[Hls494]

Yes we have been through all the different constipation medication and oxybutynin and desmopressin with no success either. She is on long term antibiotic for uti. I will mention it to the urologist at the next appointment.

[mumbychoice]

Sounds very familiar! Let me know what the urologist says!