My two year old doesn't sleep — Scope | Disability forum
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My two year old doesn't sleep

chelseabudworth24
chelseabudworth24 Member Posts: 8 Listener
my daughter is a little over two she has cerebral palsy which has affected her left side. She does not show any signs of talking or speech. But my main concern is her sleep! She sleeps a maximum of 2 hours a night most nights and very rarely sleeps in the day! She always seems to be run down and tired but nothing we do settles her and she she's up all night and when she wakes she screams the house down until I snuggle her up with me then she just lays there and wants to play. Has any one had any similar experiences with this? She's got a gp appointment today but I'm not sure if they will be able to help! So any advice and tips would be much appreciated! 
Thanks 

Comments

  • tiptornado
    tiptornado Member Posts: 2 Listener
    hi, my 11 yr old daughter has learning and behavioyal disablilties and from around 18 months she was very similar to your plight the only difference with her was that she would only have around 2 hrs then after that she would not be tired at all, anyway after many trips to the dr we finally got them to refer us to a pediatrician who then refered us to our local CAMHS (Child and Adolescent Mental Health Service) they were quite helpful with sorting out new sleep routines for us to try and also they tried her on a drug called melatonin (not really what we wanted) but for a short time it did work but i will advise that childrens bodies tend to get used to the medication and then becomes ineffective.
    All comes to all we was with them for around 2 years and we now have a child that gets maybe 5 hours a night, not a big miracle but far better than what we had i will say that it took us at least 18 months to 2 years of constantly pestering our dr before pediatrician referal and from then just a couple of meetings and then to camhs.
    hope this helps and good luck
  • AlexW_Scope
    AlexW_Scope Scope Posts: 216 Pioneering

    Scope offers a sleep solutions service but it is only available in certain areas.

    You can also read our experts’ tips on sleep difficulties at www.scope.org.uk/sleep.

    Below are other organisations and resources that you may also find useful:

    ·       Try the Children’s Sleep Charity

    ·       If your child has a neurological condition, you can contact the Cerebra charity sleep service.

    ·       Contact a Family also has a useful guide that offers parents and carers information on Helping your child sleep.

    Hope this is of use, Alex

  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    The user and all related content has been deleted.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    Hi @chelseabudworth24 welcome to the community! Do you see a health visitor? They can offer lots of support with under 5s including with sleeping.  

    @SleepPractitioners can you offer any support?
    Scope
    Senior online community officer
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    @Jane_Scope can you help at all?
    Scope
    Senior online community officer
  • Stayce
    Stayce Member Posts: 700 Pioneering
    Hi @chelseabudworth24

    I can only really speak from my own experience I have CP myself and with tight muscles sleep can sometimes be difficult due to being in pain, feeling uncomfortable and difficulty in being able to unwind fully because of feeling tight/ uncomfortable . I personally find that visiting an osteopath helps with my sleep pattern as it is relaxing.

    If you do think about visiting an osteopath with your daughter please check they are registered with the General Osteopathic Council. You can search for a registered osteopath in your area here: http://www.osteopathy.org.uk/register-search/

    Hope this helps

    Best


  • Jane_Scope
    Jane_Scope Member Posts: 10 Listener

    Hi @chelseabudworth24

    Sorry you are having such problems with your daughters sleep patterns, you must all be exhausted! General guidelines recommend that a 2-3 year old should sleep for an average of around 11 hours per night and a nap of approx. an hour or so in the day so she is way behind these recommendations.

    I can really mainly only re-itterate what Alex has suggested. If Scope have a Sleep Solutions service in your area then this would be great, but failing that, the Children's Sleep Charity  or Cerebra Sleep service may be able to assist in a similar way with a personalised Sleep Programme.

    The Sleep Tips on Scope's website are quite useful as a starting point.

    If you cannot manage to access a personalised Sleep Programme then you could check with the Scope Sleep Service to discuss about potential Sleep workshops in your area: [email protected]  

    I hope you got on ok with the doctor yesterday. Melatonin can be useful if all else fails. It may also depend on whether your daughter sleeps badly because she is in pain. As Stayce suggested, she could possibly have muscle spasms and if you were interested in seeing if osteopathy might help, another place to look, as well as the Osteopathy.org.uk Register could be The Osteopathic Centre for Children I think they are only based in London but they may also be able to recommend a paediatric osteopath in your area. This would be something you would have to fund yourself. Does your daughter already have regular physio sessions via initial GP/ consultant referral? These should assist with better mobility and less tightness in her limbs, making her more comfortable overall.
    Is she good with feeding or does she maybe suffer from colic or reflux? This can get in the way of a good nights sleep.
    I am wondering though if it may be more behavioural/learnt, if when you pick her up and snuggle her to you she instantly calms down...she feels reassured by you!

    I hope that some of this is useful and that you can get some procedures in place to help with much needed sleep for you all.

    best wishes
  • Zeezee
    Zeezee Member Posts: 78 Pioneering
    I had the same problem with my three year old. It took hours of rocking, singing and patting her. Once she was asleep she would wake instantly at the slightest noise, Zee hardly ate anything, was lethargic and irritable during the day and wanted me in the same room as her all the time.
    People started to suggest that it was behavioural and I should leave her to cry as she had me wrapped around her finger. But I believe that children cry for a reason even if it was learnt behaviour she still needed me.
    It wasn't behavioural. Her hip x-ray came back recently and they are 30per cent dislocated and getting worse, also her muscles are so tight that she has spasms during the night. Although Zee speaks very well she has always been in pain so couldn't tell me what was wrong. We are waiting for a sleep system but she started on a very low dose of Baclofen a couple of months ago and WOW I now have a different child. I had resisted giving her Baclofen for a long time but what a difference it has made, from between 2-4 hours sleep in 24 hours, split up into an hour or two at a time and sometimes 20 mins at a time, usually in my arms and ALWAYS in my bed. Barely eating and movicol being the only thing that would make her bowels work. Also rarely drank any fluids.
    As soon as she started on Baclofen the difference is amazing, Zee now goes to bed (in her own bed) at 8.30 pm after reading her two stories, then a cuddle I put her back in bed and pat her tummy and she goes to sleep. She even falls asleep during the stories sometimes, she has even fell asleep on the sofa after her milk while I have been sorting out getting her room ready to take her upstairs. I now know what the saying "sleeping like a baby" means because when she is asleep now I can move her, make a phone call, go to the toilet etc without her waking up. She now eats 3 full meals a day and snacks, drinks copious amounts of fluid and has at least one dirty nappy everyday without movicol. Her mobility is a lot better, she can roll around the floor and pull herself along with her arms and has even starting to sit unaided for a minute or two and can fall backwards without hurting herself.
    Because she has now realised that constant pain is not the norm she now let's me know when her legs or back is hurting and she is not my Velcro child any longer, I can even leave her playing in her room while I have a shower.
    This may not be the issue with your daughter but I don't think a GP has the experience needed to help, you need your daughter to see a paediatrician.
    Hope this helps and you are able to get some sleep soon xxxx
  • Zeezee
    Zeezee Member Posts: 78 Pioneering
    Sorry I forgot to say that after going to bed at 8.30 she sleeps until 7-7.30 the next morning. Which is the recommended 11 hours.
    I was looking into having her assessed for a sleep disorder before this.
    And trust your instincts, I always knew something was not right and she needed the cuddles, I am so grateful I trusted my instincts and didn't leave her to cry alone in pain.
    Good luck and let me know how you are getting on xx

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