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advice about sleep systems please

optimisticoptimistic Member Posts: 8
Hi
My little girl B is 16 months old and was diagnosed with 4 limb spastic CP 2 months ago. She has made good progress with the physio and can sit with minimal support and take a few steps in a walker. She cant roll over yet.
My question is about sleep systems. B sleeps on her front and will sleep for 12 hours at night with no problems (lucky me!) She turns her head and her body so that one knee is up, and then will fidget around and do the same on the other side. Sometimes she sleeps with both legs apart, with her knees turned out.
I have been reccommended to strap her in to a sleep system for night time and I cant seem to get a good answer as to why she needs it. I am suspicious as I feel that the rep was quite pushy, but obvioulsy I would use it if I could understand the benefit.
Thanks

Replies

  • optimisticoptimistic Member Posts: 8
    Thanks for the replies so far.
    When she is asleep, she feels quite relaxed, although her arms default to flexed at the elbows position or down by her side.
    I did show the physio the photos of her asleep as my gut instinct is telling me that she doesnt need this particular contraption, just maybe an orthopaedic cot matress. She was unsure, and bowed to the opinion of the rep from the company.
    I am so confused!!!!!!
    Wonder where I can get a second opinion?
  • mafalamafala Member Posts: 72 Listener
    I think go for your gut instinct. The rep should be taking the lead from the physiotherapist, not the other way around. There are loads of sleep systems out there, so you might have to try a few to see what will work, if any.

    My son has always been candidate for a sleep system. He is 8 now. It just never felt right, as he likes to move around at night. He's just had some orthotics prescribed called V trousers. They keep his legs apart in the night, but he's refusing to wear them.
  • renacahillrenacahill Member Posts: 145
    I so agree about the physio should be leading regarding your daughters sleeping position not the other way round! Is she inexperienced? Our physio definitely calls the shots when it comes to equipment. Would another physio in the department discuss this with you and your current physio? You need to find out what is the optimum sleep position for your daughter. My daughter (elibarebum) was told by physio that they prefer the children to sleep on their backs because on their tummys the head is pushed to one side or the other and they may end up with serious chest deformities. Can you ease your daughter onto her back when she is deeply asleep (she's obviously a good sleeper!). On their backs the childrens abdominal muscles are extended, chest is open and expands well, legs would hopefully be flat to the mattress so extending and the calfs and ankles, ditto arms and hands open and legs in the abducted position. Basically in a position that normally developing toddlers adopt when asleep. I think these sleep systems are for more serious spastic quad and I cant see what it would achieve for your daughter. What are they telling you it will achieve? pin the rep down on what the system will do in terms of preventing deformities, how it will do this? Your daughter obviously doesnt spasm when she is asleep and appears to have good quality sleep. Is she on baclofen? I am all for going with your gut instinct.
  • ElibarebumElibarebum Member Posts: 11
    I think the overall out come for the sleep system, is so that they will eventually be able to sleep on their backs with their arms by their sides. which is a better sleeping position and doesn't encourage contractures etc, it also regulated temperatute, in some fandangled way which I don't understand!

    We were invited to look at a sleep system but as Elliot (still) co-sleeps and is breast fed on a night we thought that it wouldn't be much use for us, and he's such a poor sleeper and would never sleep on his own.

    I suppose the rep is there to be pushy, but do what you think is best for your daughter, after all you know her the best!
  • renacahillrenacahill Member Posts: 145
    Hello optomistic (yes optomism is always good!) Congratulations on how well your little girl is doing developmentally, if she has spastic quad,she is doing very well and is very mild. I have posted in this section regarding a similar diagnosis for my grandson so you might find it interesting to compare their progress and similarities and differences as my daughter and I are not sure the diagnosis is correct, though it was made at a much earlier time?
    Regarding the sleep system - they are designed to prevent contractures in children with quad spasticity by keeping the limbs in a good position overnight, in much the same way as a good SN chair or buggy holds the feet, legs, trunk etc in good positions to prevent deformities. Your daughter sounds as though she is sleeping in a lovely relaxed open position (particularly the open knees). When she is sleeping do her limbs feel loose and floppy? If she is moving in and out of different positions overnight, tho not rolling over I gather, I would personally say, if it aint broke dont fix it! Ask your physio her opinion. If poss take photos of the different positions you daughter gets herself into to ensure they are appropriate and not leading to contractures. Dont be pressurised particularly as you are in the very fortunate position of having a CP child who sleeps well.
  • optimisticoptimistic Member Posts: 8
    Thanks for all the advice.
    Was quite surprised to hear about all the benefits of B sleeping on her back, and have snuck into her room just now and rolled her over in her sleep. Will be interesting to see if this helps as she is tight in the chest and biceps.
    Overall, we have been really happy with our physio, we have just disagreed on this matter, but I just needed more explaination. Also, the sleep system that we have been given for a trial is a hideous thing, its like a little wooden coffin with padding! I hated it on sight and feel that it is a bit of sledgehammer to crack a nut.We only had a diagnosis of CP 2 1/2 months and there has been such a lot of things to get our heads around and this seemed one step too far.
    On a positive note, I have been on the web and looked at other much nicer looking systems and have arranged for the rep to come around.
  • b8sb8s Member Posts: 33
    Hi,
    My daughter is nearly four, she has been using a sleep system for 18mths. She has four limb cerebral palsy, and sleeps well. She is relaxed when asleep. Before the sleep system she moved around in her sleep but mainly slept with knees turned out, this lead to scissoring at her ankles. The sleep system has prevented this getting any worse, and I only wish I had known to ask about it earlier as this may have been prevented. The sleep system has not changed her sleep pattern at all, and if I readjust it during the night (she can wriggle out if she doesn't go straight to sleep) she sleeps through that aswell! It is certainly worth talking about it with your physio or OT, so that you fully understand why it is being recomended, but I hope our experience helps.
    charlotte
  • andyhainesandyhaines Member Posts: 2
    Hi,
    I am sorry to hear you have experienced some difficulty with a rep.
    The prime reason for any sleep therapy equipment is to try to prevent any malformations occurring with growth and over time.
    The only time a user has to be 'strapped down', heaven forbid, is if they are a danger to themselves in any way.
    Sleep positioning is relatively new to the physio world, there are some specialist PT's out there who have a great insight (I know quite a few who are exceptionally knowledgeable) but a physio only knows what he/she wants the body to do and why, it is the equipment specialists job to try to fit the equipment to the desired outcome.

    In 80+% of the cases I have dealt with, the physio has been guided by, but not coerced by, what components will do what and what wont work based on my experience. The physio, remember, deals with myriad cases not all dealing in any one piece of equipment, therefore it may be 6 months or more before they see a sleep system case again.

    What you first must establish before going down the route of any mechanical intervention is the desired outcome, then the intrinsic complications - the what, why, and where any piece of kit should, shouldn't and may possibly be used.

    Most physio outcome is rooted in the desire to rectify or prevent or a complex mix of both. One of the first things they try to create mid-line in supine (back lying) and try to create symetry. This creates less strain on the body and allows relaxation, therefore allowing joints etc to relax and repair.
    There is no instant fix for postural issues, and it is a gradual game of patience, trial and error. Sleep systems are there to try to prevent as well as correct - just because there isn't an issue yet, doesn't mean there wont be. In fact experience now shows that by getting the sleep symetry right, the effectiveness of all other associated equipment and therapies is vastly increased.

    If B is indeed sleeping on her front for 12 hours, whilst it may be bliss for a good nights sleep for mum - there may be trouble ahead.
    As the body get's heavier and the muscles set, B could end up with a curvature of the spine, rotating pelvis and other nasties that will require heavier handed physioterror to rectify.
    The idea for a sleep system is to encourage (not restrict/force) the body to conform to what it needs, and that is to be in a relaxed and symetrical position.
    If the body can't be in a symetrical position for what ever reason (e.g. contractures) and it can't be fixed, then the job of the positioning device changes to one of accommodation and pressure relief.

    If B needs to be on her back from a physio perspective it may be to relieve pressure on the knees, feet and pelvis, the lower back and the face all of which are at risk of deformation if B is left unchecked and lying on her knees for the growth phase of her life.
    It may be that she will object at first to being in an alternative position, and so would I.
    Imagine that you are blissfully happy in a position, it is lovely, and you don't know or care what it is doing, you just know it is great - then some hulking great 'rep' and a physio come and upset all this for the greater good - yes it is tough love but honestly - the alternatives are terrifying.
    Having worked in childrens rehab and adult rehab equipment for so long, I can see the direct correlation to the postural effectiveness of the body earlier on to the way our body behaves on through to adulthood and old age.

    So, long essay, but the decision making process when it comes to this type of equipment is long and complex, and as equipment specialists, we try to assist the clinical specialist, and mum/dad (the user specialist) in that choice. The specialist should not try to usurp the parents nor the clinician in terms of their specialty, he/she is merely there as the equipment specialist - his/her expertise is in what effect the equipment will have on the body and condition of the user, and he/she should be prepared to hold their hands up and say "I don't know" if that is the case. "I don't know the answer B's mum, but we will try to find a solution" is a better stance than "this is the kit you need, definitely, it will work, honest" we aren't selling windows.

    I hope this has helped in some small way - there is more information at www.snooooooze.com, where I am adding new information all the time.

    Good luck
    Andy

  • JRajeshJRajesh Member Posts: 2
    Hi There
    If your child started taking few steps at the age of 16 months ,we should really ask ourselves whether she has cerebral palsy and whether she needs sllep system.what is your aim of providing sleep system to your child?That is important.
  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hello JRajesh

    We have to point out that many children with cerebral palsy walk, so the fact that a child walks at 16 months in no way negates a diagnosis of cerebral palsy.

    The use of a sleep system is something that the health professionals involved in a childs care, and the childs parents, can discuss on an individual basis.

    For more information on sleep issues in children with cp please go to http://www.scope.org.uk/help-and-information/families-and-parenting/sleep-difficulties-children/sleep/about-sleep.

    Kind regards

    Forums Moderator
  • mollymoobarnesmollymoobarnes Member Posts: 107
    What a daft thing to say! My son also has quad cp and took his first few few supported steps at 16 months - his brain scan shows 2 big dead areas so I'm pretty sure he has cp! People are coping to the best of their abilities with supporting their children in the best way they know how and comments like that really aren't helpful.

    Maria
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hiya

    The person who posted initially said her daughter wad taken a few steps in a walker at 16 months - not unaided. My son took a few steps at 16 months while holding onto a walking ladder from his Conductive Education class. Hwever, if I let my son go while he was stepping he would fall over because his hips are tight, his ankles are too close together so his legs can scissor, his arms are tight so he can't hold onto something and support his weight for long and his trunk muscles are a little weak. Our kids are not walking, they are just starting to experiment with weight-bearing and self mobilisation.

    You don't need to explain to me what cp is thank you - I have a clerar understanding of what it is and the degrees of severity. We as parents have to become experts quickly once our precious children have their diagnosis. You can't tell a aprent on the basis of their post on a forum that they have the severity of their child's disability all wrong. We know how badly affected our kids are by living with their difficulties every day. My son has a twin so we have a direct comparison in terms of his and her development.

    My point is that is is ENTIRELY unhelpful on a forum like this to question if a child really has CP, or how severe it is. We don't come here to post just for fun you know! We, as parents, go through a very hard time coming to terms with our children's difficulties. It is a hard thing to know that your child has a brain injury and to have that diagnosis questioned by a stranger is irritating.

    My son doesn't use a sleep system currently because he has not been told to use one but I would assume that just because a child is not totally immobile in a bed all day does not mean that a sleep system is not neccesary. Our youngsters can sleep for 10 - 12 hours at night and if they are sleeping in a position that is harmful to their posture then a sleep system may well be a good idea.

    Maria
  • livliv Member Posts: 16 Listener
    Hi Maria,
    I couldn't agree more with what you say and am shocked that such unhelpful comments were actually posted...by someone who calls themselves a professional! It has actually made me feel quite angry!

    I have twin boys, one of whom has quad cp...he too can take a few steps in a pacer (fully supported) with a lot of encouragement and he tries extremely hard to achieve a lot of things. We too are looking into a sleep system to help him remain comfortable at night as he extends a lot and gets 'stuck' in uncomfortable positions and gets upset.....this will also as I understand it maximise positioning time through the night which can only be good for his growth.

    I do feel that things should not be said 'lightly' at times as having and living with a disabled child is extremely stressful and at times heartbreaking and as you say, we parents are doing everything we can and often have no other choice that to trust the professionals....and we do become experts very quickly!

    Well said Maria......
  • livliv Member Posts: 16 Listener
    Hi,

    I wondered if you had looked at the Jenx Dreama sleep system? We have just looked at it and we were quite impressed...we obviously won't know if it will work until we try it but the system seems to offer what we would like without 'strapping' our son down. Obviously I don't know the extent of your little girls cp, but one of my twins has quad cp with varrying tone and extends a lot. We are hoping that it may help him to sleep through the night (he wakes a lot) as he wakes when he extends into a poor position and that it will also help to maximise good positioning during those sleeping hours.

    My advice would be to look around if you can....even if it means looking without your OT to start with and then asking their advice. We have done this with certain pieces of equipment and it has been very helpful as I found that our services only used certain companies (and the reps can be pushy) and there is a lot more out there. We even found a bath chair which our son could sit up in rather than lie down which is great as he has a twin brother and they love to share a bath. Our Physio and OT have been supportive but I did have to push to start with.

    Good luck, take care

    Liv
  • JRajeshJRajesh Member Posts: 2
    Sorry if my comment was not helpful.I am a childrens physio practising in UK.Cerebral Palsy means nothing more than they have some kind of brain injury before the age of 2 yrs.I know children with CP will walk because that is what is Iam doing daily.But they will be very delayed (especially 4 limb involvement)and the delay depends on the level of brain injury.Cerebral palsy is a spectrum of disorders which can vary from very mild to very severe.If a child walks at the age of 16 months,as physios we think it is not delayed.But then again we have to think of her other symptoms.She cant be a severe form of CP if she is walking at 16 months.Then why are you thinking of a sleep system to prevent contractures???A walking child is not at risk of contractures because of the time she/he spends in the bed.
    Hope this is clearer.....
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