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Sleep problems, trying Melatonin,....I’m desperate.

livliv Member Posts: 16 Listener
Hi, I'm really hoping that someone might be able to help as I feel utterly desperate as I type this. I daren't go to bed as I just know that the minute I manage to doze off my little one will wake.
One of my twins (nearly 3 yrs) had quad cp and his sleeping has got gradually worse over the last 6 months. He has a diagnosis of epilepsy which is recent and has had no fits since being on a low dose of medication. We have spent a lot of money on support cushions which were not available through our services in the hope that it may help as we have been told that it could take a year to get a sleep system/bed approved. Our physio is also not convinced that a sleep system will help due to the way our little one moves and pushes against things. The cushions seemed to help when we trialed them but are proving hopeless now, he has a very strong extension reflex and seems to get 'stuck' in an uncomfortable position, a bit like a banana when lying on his side. We end up having to put him on his tummy, something which we were trying to get him out of.
On our last visit to see our consultant, I collapsed in a heap of tears when he asked how things were as we are up nearly every hour through most nights and my partner works shifts which just makes it more exhausting. He suggested that we try melatonin which we have and initially the liquid seemed to help for a few night but then the waking started again. We then tried slow release Melatonin...it sounded too good to be true! It seems to have made things worse and he is just waking constantly. I feel like giving up. I have even considered splitting up with my partner so that we can share the care of our twins and each get a little bit of rest. I am so exhausted that I know I can sound irrational at times but the lack of rest is killing me. I feel completely desperate, any suggestions would be gratefully recieved.
Thank you, a very tired mummy.

Replies

  • goingstronggoingstrong Member Posts: 5
    hi liv, i have a little lad, who is twelve now and has your childs diagnosis and downs syndrome
    and have been there and sympathise with you but there is lots of light at the end of the tunnel believe me
    have you got or have you tried a memory foam mattress/ pillow yet? sleep system done nothing for our son apart from giving us more work with it through the night, i have got other ideas to try and help you but dont want to bombard you with too much regards steve.
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hi Liv

    Sorry to hear how hard things are for you and your family at the moment. Have you seen our information about sleep difficulties on the website? You can find it here - http://www.scope.org.uk/help-and-information/cerebral-palsy-and-associated-impairments/sleep-difficulties-children.

    If you would like to contact Scope Response we can make a referral for you to Sleep Solutions and a sleep counsellor may be able to help you with your son's sleep difficulties. Please contact us on tel: 0808 800 3333, or email [email protected]

    Kind regards

    Scope Response
  • kingboy25kingboy25 Member Posts: 57 Listener
    Hi Liv
    Had the same problem with mine at the same age. Eventually gave him a good talking to and told him I was very tired and if I didn't get enough sleep I wouldn't be able to look after him properly. I then told him I was only going to get up to him three times thereafter I would ignore him. Each time I got up to him I told him this is the first time, then the second time then the last time and I wasn't getting up again. It was very hard on both of us but amazingly after a few days it worked.
    I assume you and your husband are taking it in turns to get up and if he does a night shift he gives you an opportunity to sleep in the day.
    If your twins don't have a nursery place get on to social services, at least then you could rest when they are at nursery.
    The memory foam mattress sounds like a good idea.
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Liv, bless you, what an amazing mum you are! Please don't even contemplate splitting up your lovely family over this - that would be an awful thing for all of you. It may seem like nothing will ever change right now, but it will.

    I have 17 month old twins,one with CP, and a 4 year old little girl. My baby son Tom now sleeps well but this wasn't the case for the first 10 months and oh God, do I remember what HELL it was. He used to sleep on his front too but that, whilst more comfortable for him, worried the hell out of me because his breathing is noisy anyway (his airways are a bit compromised) and he breath-holds sometimes so even when he WAS asleep (which wasn't for long) I used to lay awake listening to him snoring away, waiting for each breath to come. I slept in with the twins, on a really uncomfortable sofa bed, until they were 9 months and I was up and down like a yo-yo all night - he would cry so hard he's wake his sister and then I'd have both babies wailing. Then their older sister would wake too and I'd just want to cry with them all.

    I just wanted to let you know that I am thinking of you and know from experience how hard it is to be a twin mum but to have the additional pressures of having a child with additional needs on top of that. And then sleep problems too - it's just overwhelming. Is there anyone who can give you any respite? Can your doctor suggest any other solutions for you?

    If nothing else I hope this message just gives you a positive lift - you are doing a great great job. Maria xxxxx
  • livliv Member Posts: 16 Listener
    Hi, thank you all for your kind words and advice. Things are just really tough at the moment but I know we'll make it through. It really helps to know other people are having similar experiences. Having a disabled child is so draining at times, emotionally and physically and you can't really understand it unless your 'in it'!!

    On the up side, we have looked at the Jenx Dreama sleep system and I feel that it may help...has anyone used this? Please feel free to share any advice..it's much appreciated.

    Liv :-)
  • laujoka3laujoka3 Member Posts: 3
    Hi Liv, I have girl/boy twins, who are 2 and a half and my daughter has cp, hyrdocephalus and other bits and pieces and like you we were getting very little sleep. Other parents had suggested a sleep system but the physio didnt seem to think it would make any difference. I was also concerned about her body shape at night as she was unable to change her position. To cut a long story short, following the advice of other parents and getting my paed to write to the physio I then got assessed for the symettrikit sleep system and we havent looked back since...Laura sleeps all night now with the odd exception and funnily enough its her twin brother who wakes us up looking to come into our bed!! Get a rep from a sleep system company to come out and do an assessment and see if there is something that would suit you. Then let the physio know!!Good Luck.
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