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My little girl sleeping problems

Saffy22Saffy22 Member Posts: 6 Connected
edited June 2014 in Parents and carers
Hiya

I am new to this site

Lily has quad cp, diagonosed six months ago. She gets very stiff and she is a stong girl especially as she is growing, she is now 22 months. We have physio, OT, portage. The main problem i have is her sleeping, she goes to sleep lovely but its staying asleep which is the problem. She wakes up anytime from midnite onwards and she can be awake sometimes up to 3 hours, she is not in pain she gets stiff and is uncomfortable.

She has a sleeping system but its not a difference, i have turned her in her bed, had her in my bed trying to find a comfortable positon for her, given her a drink, i don't what else to do. The docs have given us melatonin and baclofen to try but its not made much of a difference, i have left messages for them to call me back but no luck as of yet.

Lily is a twin so life here is very busy, i am so tired, i don't have much help from our families cause they live quite far away at least 8 hours away:( we may be move closer this year but we are not sure yet, it depends on my husbands job.

Any advice would be most appreciated.

From a very tired mummy

Replies

  • ScopeHelplineScopeHelpline Member Posts: 210 Courageous

    Can I suggest that you contact scopes sleep solutions service, the aim of Sleep Counselling is to improve sleep patterns. Families and counsellors explore various techniques together, including behaviourial modification, sleep history and sleep diaries.

    For more information about Sleep Counselling and to discuss its appropriateness for you contact the Sleep Solutions Co-ordinator:

    Tel 01432 355308 or Email [email protected]

  • jenster22jenster22 Member Posts: 9
    its like reading about my life!!

    I am a mum of 3 boys, the eldest is 7 and twins of 3.

    one of my twins has quad CP and severe visual imparement and we have been battling with his sleep for 3 years. Sometimes he is up every 30-45 minutes at night.


    We have been on baclafen and melatonin but also dont make much difference, drives me mad as melatonin is meant to be the wonder drug but it made Joe worse at night.

    My husband is a head chef so works every night and every weekend, sometimes not getting in till 1am so all the bed/bath and get ups in the night are my job. I have just started working part time rather than full time to be with him more.

    unfortunatly, I dont have any advice as im in totally the same position as you but i do hope it helps to know you arent alone?

    if you feel you need to rant or talk things through i dont mind at all, helps to speak to someone who understands, my family also dont live close and they try to sympathise but if you arent living it 24/7 you dont get it ... however much they want to help they cant.

    We need places like this for support.
    Good luck and pass on any tips you get!! Xx
  • Saffy22Saffy22 Member Posts: 6 Connected
    Hi

    Thanks for your posts, it is appreciated. Its not nice that you guys are suffering too, but at least you understand what we mums have to go through.

    A quick update, we have finally spoken to the community doc and she says now she will prescrible slow releasing meltonin. Sometimes they do not listen to what i say i have said to her before that bed time is not a problem, i feel like i waste time trying different meds for nothing. We have Lily's MRI results and yet again the docs don't give u much info he says lily's brain is so to develp but we have the report and there are lots of long medical words which i don't understand but he says he will discuss on our next app in 3 months. Sorry for the rant.

    Lily's sleeping has been worse lately, its very tiring, i envy these mums who say there child sleeps through. I don't have any tips of yet, if i do hear of anythiing i will pass them on.

    Hoping your nights improve, take care x x x x
  • catherine2catherine2 Member Posts: 26
    My 3 year old son has Quad CP and we have managed to radically improve his sleep and turn our lives around. (see http://www.mill-pond.co.uk/)

    For a year or so after birth William screamed pretty much all the time, and woke 15+ times a night. Our health visitor suggested putting a bed alongside his cot and sleeping in the room with him - it helped enormously. The timing coincided with a slight improvement in his contentment but we got his waking down to around 5-8 times a night. However by the time he was 2 the lack of sleep combined with pretty full days took a real toll.

    I exhausted all medical options. He had a sleep study at GOSH, we got a clean bill of health from ENT etc - there seemed to be no medical reason for William's waking / unsettled behaviour in the night (his body would squirm / muscle tone increase and you couldn't comfort him or even hold him that easily).

    Anyway, I was recommended a company called Millpond. It is not specifically for special needs families - it's a typical sleep advisory service but the lady that runs it was head of "sleep" for the NHS for 5 years so she knows her stuff.

    We paid
  • eviesmumeviesmum Member Posts: 13 Listener
    I have exactly the same issues. I am exhausted with hourly or more often waking through the night. My 17month little girl has 'evolving CP signs' mostly developmentally delayed at present but some mild hamstring and calf increased tone.

    She has been in our bed out of necessity since birth and we are currently trying to gradually get her into her own. I have discussed behavioral training with our health visitor, and we are supposed to be on a gradual plan of gentle sleep training. Reducing gradually physical comforting methods (sshhing and rocking) leaving her a little longer before attending her, gradually reducing night time breast feeding...

    I feel like I am in a nightmare - I have always held a strong belief system not to let my baby cry, I dont understand how reducing comforting and her getting distressed 'teaches' her to self soothe. I just dont get it. If frequent waking is a CP issue for whatever reason - has behavioural training worked for anyone?

    I dont have hundreds of pounds to spend on courses and individual assessments.

    Has anyone found this approach worked for them? I need some hope to keep it going as it reduces me to tears on a daily basis.

    All sleep deprived mums of Cp children - I'm with you. xx
  • eviesmumeviesmum Member Posts: 13 Listener
    Thank you for this. I've looked on the website and bought the book immediately. I think I still need to give myself permission to put evie through the distressing bit of changing the routine - as thats what tears me up.

    With a recent cp diagnosis she feels even more vulnerable to me - even though others would say shes a hardy little thing!

    Good luck to all with the sleep issues - I shall let you know how we get on.

    K xx
  • renacahillrenacahill Member Posts: 145
    Hi
    It seems my daughter little boy (2.5) is not the only one to be a poor sleeper, despite melatonin syrup. She has also tried baclofen and phenergan, both failures. He doesnt get stiff at night but is such an incredibly light sleeper, even if he's fast asleep in our arms as soon as he is placed in his cot he wakes. He can wake several times a night or just a couple. Sometimes he is difficult to settle, but often will just drop off with a cuddle. He still co sleeps, as like evies mum, my daughter cant bear to let him cry. He gets so distraught, its not just a tired baby cry, its absolute terror!

    He was very ill following a traumatic birth and fitted etc, needing all sorts of horrible painful interventions. My daughter thinks its one of the reasons he gets very anxious if left. The point is her gut tells her that a toddler needing extra reassurance and comforting is not going to feel secure and confident left to cry and get distressed. So far this approach has meant Elli has grown in confidence and is less wary of strangers and happier in strange environments. It isn't easy but the alternative isn't an option for them ie 'controlled crying'.

    When she and her brother were babies they were neither particularly good sleepers and co slept for varying times, but it never bothered me as they quickly dozed off and so did I. It didn't go on for ever and I never had the trauma of listening to my babies cry. I just accepted that was my choice and they eventually trotted off to their own beds and were generally happy children.
  • blueeyesblueeyes Member Posts: 2
    Omg the relief at knowing we are not the only ones going through this is immense, we now have had only 10 full nights sleep in 6 1/2 years since our daughter was born, she has quad cp but has got away lightly as really her main problem is that her legs don't work and so is in a wheelchair, but luckily mentally she is very advanced for her age.
    We have managed to overcome almost all problems we have faced so far but the sleeping issue is making me desperate, after speaking to health visitors, physio, ot etc etc everyone has just smiled and said poor you! As all of you have said unless you have lived this life you have no idea how hard it is, why has nobody suggested melatonin or other medications to us?
    She wakes a minimum of 4 times a night but it can be every 30 minutes, but goes to sleep at 7.30pm totally fine, I cannot bring myself to leave her when she shouts for us as I worry the one time we don't go will be the one time something horrendous happens and she is the most precious thing in our lives! But at the same time our family life sometimes feels so hard as we are constantly exhausted from both lack of sleep and then managing to physically lift and carry her throughout the day from chair to toilet or bath or into her car seat, at this age she is pure muscle and feel like she weights a ton!
    Anyway rant over I just wanted to say in a strange way thank you for knowing what we are going through at least I know we arnt alone!

    Xxx
  • livliv Member Posts: 16 Listener
    Hi tired mummy,

    I completely understand how you must feel. I have 2 yr old twin boys, one of whom has quad cp. He has never slept well and on the odd occasion we think we've cracked it, we're back to square one. He too seems to get to sleep but then wakes from 11:30 onwards for no obvious reason.He has always suffered with terrible wind and reflux which I don't think helps him, but he also gets stiff at night time. It must make them ache and wake them up.

    I'm not really sure I can give you any advice as we keep trying things but nothing works. I just wanted to say that you are not alone (I know that probably doesn't help much) and I feel for you. We have no family close by to help......I sometimes dream of a full nights sleep! Maybe then we would feel a little stronger!

    Maybe it might be worth looking at a different sleep system? It' s disappointing that the docs haven't got back to you....it is even more frustrating to have to fight for everything when you are so tired yourself, but keep at them, they have a duty to help you.

    I really hope you find something that helps. :-)
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