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Behaviour problems

NicolajaneNicolajane Member Posts: 6
My daughter has cp , is reg blind , tube fed , totally dependant on others 24/7 for all of her needs unable to do anything for herself she has epilepsy suffers with spasms , she screams pretty much most of the time nothing seems to settle her , some of the screaming can be settled due to picking her up but not all , she's biting me , pinching , slapping pulling my hair out and hers she gets very angry at a drop of a hat within seconds goes from a happy child to something possessed she sweats profusely hands and feet dripping wet she tries to make herself sick she really is starting to hurt me now I'm at a total loss she's been like this for several years and is getting worse I've tried everything I can think of , her consultant just says it's the terrible 2's at the age of nearly 7 ? Really umm ok , also he says she's a very frustrated little girl understandably but yes so am I , it's a daily nightmare she needs sedation to sleep at night or she won't sleep any advice please so desperate to try n make all our lives a little easier thankyou


  • shelby2003shelby2003 Member Posts: 4 Listener
    Hi Nicola, have you had a camhs assessment? You can self refer if needed
  • NicolajaneNicolajane Member Posts: 6
    Thankyou Shelby , camhs assessment ? Sorry wot is that sounds like self referral it would be due to ignorance of her consultant x
  • shelby2003shelby2003 Member Posts: 4 Listener
    It's the child and adolescent mental health team, they usually have a special section for learning disabilities. They work with children and the whole family to help deal with problem behaviour. They have to come out and assess first and then you'll probably end up on a waiting list but it's worth starting the ball rolling. I can't believe that the school or paediatrician hasn't suggested you try this.
    If you Google camhs for your area you should be able to get the info
  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    Is there a learning disability nursing team in your area? They can provide advice and strategies, usually after doing several visits to see your daughter at home and at school. think you can ask your GP/Paediatrician for a referral. Or, as Shelby said CAMHS are good too.
  • GinaSGinaS Member Posts: 79 Listener
    Hi Nicola,
    I would agree with all the posts above - you need get some specialist to support yourself and your daughter!
    A Behaviour Practitioner should be able to do an assessment, identify when the behaviours you describe above are most/least likely to occur and help you with strategies to manage them effectively.

    Unfortunately it's not one size fits all and you need some bespoke advice!

    How does she communicate with you? Have you found pictures/photographs/signing helpful at all?
    Also you mentioned she has epilepsy - have you noticed an increase in behaviours pre and post seizure?

    Best wishes
  • NicolajaneNicolajane Member Posts: 6
    Thankyou for helping my daughter is blind so no pics ect would work it's all hands on 24/ 7 if she allows this , we communicate through speech n touch mainly or songs not sure how much she understands mind as she has very little speech back to me , can't say I've noticed change in behaviour pre or post sezuire but will watch out for that will be seeing her nurologist on the 16 th so will,ask about a refferal to someone about her behaviour thankyou x
  • GinaSGinaS Member Posts: 79 Listener
    Ok, then I'd suggest to get a Speech therapist involved too. They will be able to help with appropriate ways to communicate with her, possibly some tactile cues and/or objects - usually there is a link between behaviours and communication.

    In terms of the seizures and behaviours, you might already be doing this, but it might be a good idea to make a note in your diary when these occur - this might help when you discuss with the neurologist.

    Please let us know how it goes!
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