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Phantom pain and bed wetting in children

NAS72765

Hi, I’m new to this site and just looking for some advice.  
I have a 9 year old son who has been on the neuro developmental waiting list at CAHMS for three years.  They think he may be on the autism spectrum or may have ADHD. He has major barriers to learning and struggles to manage his emotions (especially anger). 
He has been a bed wetter for a long time and I heard that this can be attributed to autism, does anyone know if this is the case?Also, he often complains of pain in his legs and I had also heard that ‘phantom pains’ can also be found with autism.

 I’m sorry if these seem like silly questions but we are stuck in limbo as we don’t have a diagnosis.

Thank you.

  • in reply to M

    I don't know about leg pain but wetting was a problem then returned in later life and it is here to stay.

  • Hi , welcome to the online community and thank you for posting. You may like to contact our Autism Helpline team who can provide you with information and advice on this matter: https://www.autism.org.uk/what-we-do/help-and-support/helpline.

    You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm. Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

    You may also like to contact our Parent to Parent service, which offers emotional support and can direct you to appropriate services for information and advice. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism. They will be re-opening from 17th May.

    You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/what-we-do/help-and-support/parent-to-parent

    I hope this helps.

    Best wishes,

    Anna Mod

  • Hi there,

    I can't help with the bed wetting but the phantom pains i might be able to relate too.

    Around the same age I had SEVERE growing pain in my legs I literally woke up in the night screaming my legs felt like I was plunged into boiling oil and I ended up in a wheelchair for about 3/4 days I can't really remember and it turns out that for some reason I had a huge random spike in lactic acid build up in my legs.

    It might be something completely different with your son but I thought I'd share that incase you wanted something to ask a doctor or look up it might be something similar.

    O

  • in reply to M

    I worry that as I age I will need one again.

  • in reply to BJS

    That is an enuresis mat but you can also have them as a clip on alarm that you clip onto the underwear or pyjamas depending on what is most suitable. 

    I brought it up in my assessment as a developmental delay but it wasn't written in my assessment report, but I had read that it is a common occurrence for autistic children. 

  • This post has made me remember that I wet the bed until about 10 or so, we used some kind of mat with an alarm on it which scared the life out of me when it went off.  This never came up in my assessment earlier this year.

  • I'm female but I wet the bed until I was 10 or 11 years old. I also had growing pains in my legs and would cry a lot at night. I was generally a very sensitive child and although not angry, often I was crying and upset with frustration. 

    To be honest even into adulthood I've struggled with my bladder control. I cant even just attribute it to having now had children because it predates motherhood for me! Fortunately not wetting the bed now though. Eventually a doctor gave me some kind of medication that stopped me doing it but I don't think they like to do that because it isnt good for your kidneys. Have you tried an enuresis alarm? It might be pretty distressing for an autistic child because I used one with my daughter who is now 7 and it would make ME jump out of my skin in the next room, never mind her. She hated it so much though that she seemed to take her routines around drinks and bedtime a lot more seriously because she really didn't want me to keep using the alarm!

  • I attribute my childhood bedwetting to being abused sexually as a child. It was a huge cause of shame, especially for a boy.

  • I don’t have any advice about bed wetting because my daughter is generally dry at night (she’s only 4 so any accidents can be put down to only being recently potty trained ) with the leg pains is it possible he’s sensitive to growing pains? I remember my legs aching at various stages of my childhood. I think they’re more common at night