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can anyone give me some advice and help for my 17 month old son with severe cp?

maryholmesmaryholmes Member Posts: 8
Hi I could give you a story that will take me till next year but I am using my touch phone and its a nightmare typing! I have a very tall 18 month old son who is extremely heavy to hold and when he is stiff its so hardto hold him. He can't sit or stand and his head control is weak, he can't eat very well, can swallow but cant chew or know how to eat just tastes it, I give him pureed food and he has a gastrostomy and had a niseen operationto stop him vomiting as had severe reflux. His vision is getting better and now has glasses and his fits are well controlled for over a year now. I'm struggling at night as he wakes up frequently and goes stiff and I need some advice if anyone has any experience with this? He has melatonin but its not really doing much. It's like he wants to sleep but can't. Also I am always having to hold him nearly all the time does anyone else have this problem? I don't have hardly any equipment either hospital are a nightmare, been playing hell with them as I don't have a bath aid, buggy, car seat nothing apart from a snug seat which is too small for him and can only use as a seat not feeding or anything as there is no tray and his head falls too far back in it he needs something more advanced as his vision is getting better. He can't reach out properly but he does follow his toys and tries to reach out but its so hard doing anything with him with no equipment and I can't enjoy a day out without the struggle of no supportive buggy. I need someone to talk to so anyone who wants to share anything I would love to hear, thanks

Replies

  • mollymoobarnesmollymoobarnes Member Posts: 107
    Oh hon, that sounds like a nightmare... I have plenty I could rant about with regard to the people who are supposed to help and support my son Tom but at least we have a specialist buggy (from wheelchair services), a chair and table, highchair and bath seat... I didn't think it was even legal for them to withhold such vital equipment?! Our Social Services OT's have always been really good at getting stuff we need for home (although it takes ages to arrive) and the stuff we've had from physio (standing frame, walker etc) again have always taken ages to arrive (3-4 months normally) but at least we've had them. What on earth are they saying to you when you ask them about it? If he clearly needs this stuff it seems criminal that they are not providing it. I would threaten to go to the papers if they aren't doing their job properly - surely they must have a budget for stuff?

    Tom is also tall and hard to hold - he's awkward to hold because he's so stiff, doesn't hold on and doesn't mold to me like his twin sister does. I find it easier to carry him using a 'Hippychick' seat - a belt-type contraption that looks like a bumbag but is actually a little seat on a belt that gives a place to rest the weight of him, leaving my arm free to hold him. It also helps Tom because he has to have his legs round me, keeping his hips open. If I hold him without it he dangles straight down like a pencil, although I guess that is because I can only hold him with one arm as I have to have the other free to hold his twin sisters hand too. I use the Hippychick around the house too - it helps save my back a bit too.

    We haven't got a specialist car seat but I can recommend the Maxi Cosi Axiss because it rotates on a base meaning you can swivel it to face out the door of the car while you put him in and then you pull a level and swivel it round to face forward for the journey. We find it easier to get him positioned properly in it with the seat facing us rather that having to twist round to get him in. I don't know if your little one needs more specialist support but Tom has 4 limb spastic CP and for now at least, it provides him with good support. It's
  • maryholmesmaryholmes Member Posts: 8
    Yeah zac was up all night stiff and distressed last night, like that most nights occasionally has a fairly ok night. Thanks for reply that is very helpful, I don't think they are not getting equipment just taking forever. And most importantly lack of info about what things are useful for zac. Have you got adapted housing yet? I am just renting at moment in Leeds currently getting that sorted. I don't have social work involved maybe I should as child development centre in Leeds haven't been much help. I think zac needs something to help him sleep as both me and Reg -dad are exhausted and he works on trains as conductor with shifts and struggles to stay awake! Zac has not been diagnosed yet as haven't found a cause but birth was a complicated one and staff were not good. They didn't even believe my waters broke till it was 3 visits later and that's just the start. I dont dwell on it though I couldn't imagine zac any other way and we do our best just really hard
    and limited things I can do as I have to hold him whilst feeding and playing as he too like your little one doesn't like floor for long and gets upset. Have you heard about sdr op? Zac has all limbs affected too he can't talk but very vocal and laughs he sounds like chewy from star wars lol. We have been told he won't ever walk but we got told he will never see and that's got better. that's good that he can tell you what's wrong you get more of an understanding as hospital don't explain what he will feel like with cp they just make out its probably something we are doing wrong with him at night but we have tried everything and its got nothing much to do with that its because he has cp! I think mainly we are just trying to get us all a better quality of life as we barely get out because of no equipment and we are all deprived of sleep. They are a bit funny about giving him backlofen as they don't want it to hold him back from developing but he is too very stiff. Let me know how you get on too x
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi hon

    We have our own place in West Sussex and are just looking into modifications because Tom will not be easy to carry upstairs to the bedroom his shares with his sister for too many more years and also will need a disabled access bathroom near to his room. It's a nightmare trying to fit it all in because although we have a room downstairs which could be used as a bedroom (currently we use it as a playroom and somewhere for all his equipment) in order to have a bathroom en-suite we would need to smash down the wall between the playroom and the diner bit of our kitchen, steal some of the diner (making fitting a table in more tricky), smash out a fireplace, put steels in to support our neighbours half of the chimney because we share a chimney with her and smash a new doorway through to our hallway. Its a massive undertaking... We would get a grant to do it but we've just moved in and we love the house and the thought of all that smashing does my head in.

    Yes I have heard if SDR but unfortunately if you have a child whose arms are significantly affected as well as their legs it seems that they are not candidates for the op because the op can only reduce the tone in the legs, not the arms (the rootlets in the spine responsible for the tone in the arms are too high in the spine to be operated on and in any case are too close to the rootlets that control the diaphram and therefore breathing function - not something you could risk getting wrong). They also say that a child's arms have to be able to support their weight well while the legs regain strength after the op and Tom can't support weight through his arms so that would be a problem. Also, I have also been told that they are finding that kids with quad CP who have had the operation are finding that their tone returns - they don't know why but it seems that it isn't the permanent fix for high tone that it is for kids with diplegia.

    I can commiserate with you about the sleep thing - Tom is probably having about equal numbers of good and bad nights so its not all bad. It's hard going without sleep though - my hubby Terry is finding it hard to concentrate at work and often goes downstairs to sleep on the sofa when Tom ends up in with us.

    You wait til your equipment arrives - life will get easier and he'll have a wider range of possibilities open to him. Unfortunately being a mum of a child with CP seems to involve endless chasing and fighting tooth and nail for every little thing your child needs. Flipping nightmare... Why people cant just be helpful, do all the things they say they are going to do promptly, offer you useful services and equipment, tell you all the things that will help your child develop. I guess that would be too easy. That's why talking to other mums is useful - you can see what works for others and what doesn't and then make decisions about what what you think is right for your child. we've found Conductive Education brilliant for Tom and what's more, we do 6 hours a week at 2 different places and its all free!

    Speak soon!

    Maria xxx
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    So sorry to hear you are not getting much support from people who are paid to support you. My son is 25 months, has severe spastic quarduplegic CP, is profoundly deaf and can't speak.

    The not sleeping thing is a nightmare. we have had 6 nights sleep in 2 years. Marten was in the hospital for 5 months, so we prob missed the natural window of opportunity for sleep pattern. then he was too sore with muscle spasms and frightened of involuntary movements. he no longer has them, but is prob completely out of practice of going back to sleep. when he was around 9 months, I took him to homeopath and that helped with falling asleep. But when he wakes up, he won't settle again. taking him in with us used to help when he had no mobility, he felt safe and secure and went back to sleep. Now he has more mobility, he nuzzles in and pushes and shoves until one of us is out of bed. sorry need to go, will watch out for your posts.
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