Disability aids and equipment
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What happens when my boy is too big for his hospital buggy ?

myjakeysmyjakeys Member Posts: 21 Connected
Hello, I have a little boy called jake who has cerebal palsy spastic diplegia. He is six in november and can walk (thank god ) but he is very unsteady on his feet and i currently have a hospital buggy its a mclaren. He can walk a good distance but his legs get tired and he want s to get into his buggy or if i have nt got his buggy with us he wants a carry which is getting harder and harder. Jake had a recent hospital appointment about his legs and they said they might have to put him in splints in a year or two. While i was there i enquired about what happens when he gets too big for his buggy and they said said about him getting a wheelchair. I was nt expecting this as he can actually walk so this has never entered my head but it does make sense as
like i said before he does get tired and wants to get into his buggy or a carry from me. Has anyone had any experience of what happens once their little one gets too big for their hospital . I would be grateful for any replies, thanks xxxxxx lesley xxxx

Replies

  • kingboy25kingboy25 Member Posts: 139 Listener
    Hi Leslie He will sometime soon tell you buggies are for babies. When children are in buggies they seem to be treated as younger than they actually are. The transfer to a wheelchair makes then seem more mature and if it is a manual wheelchair they can be more independent as they aren't totaly reliant on someone to move them as they are in a buggy.
    regards
    Rosie
  • jodie24jodie24 Member Posts: 9
    Lesley, reading your report seems that you maybe a step ahead of us but I believe I will be in the similar situation in the future. Our little boy Rees aged 4 has spastic dip and like Jake he can walk. His balance not so good but on good days he can walk for a while. However living near the beach and also being outdoors people we often go for long ish walks. Rees is in a pushchair but is getting too big and heavy for it so I haven't even got to the stage of a hospital buggy. I feel awful saying it but find it hard to get to the stage of buying one if we need it. We have bought rees a trike in the hope he can ride it in a years time but deep down I still believe there maybe a time we do think of a wheelchair for those times when he becomes very tired. Not to mention our daughter nearly 2 also has cp so I try to block out what we do in the future. It was great to read your report and the lovely replies provided. I do think it is more my hang up over the hospital buggy/wheelchair thing and know we are very fortunate. x jodie
  • myjakeysmyjakeys Member Posts: 21 Connected
    Hiya, thank you so much for your reply. I now feel a bit better about the wheechair situation. thanks, lesley xxx
  • forgoodnesssakeforgoodnesssake Member Posts: 308 Pioneering
    Hi, I do think that the issue of children moving onto using wheelchairs (from buggys) is one which can have a much more profound emotional impact on parents than is generally acknowledged by the professionals involved. I completely agree with the above post about kids in buggys being treated more like "babies" and personally we were itching to get my (also non-verbal) son into a wheelchair at 5 for just those reasons.

    However I have freinds who found the first sighting of their child in a wheelchair quite upsetting (even if the child was actually quite happy about it) and I am picking up from the original posters use of the words "thank god" re the fact that your son can walk, that you actually find the whole idea of him needing a wheelchair very difficult.

    Please try not to see his use of a wheelchair as too negative a thing. It will be how he gets from A to B in the most energy-saving way for him, which will then leave his energy etc for doing the things he wants to do... Best wishes
  • hilsflynnhilsflynn Member Posts: 24
    Hi,

    My 3 year old son has just recently got his first wheelchair, and I feel like it has given us so much freedom. He hated his pushchair (and to be honest - so did I, as I did not like overhearing him being referred to as a baby by other people in public). In his wheelchair he is higher up, able to see all the way around him and just feel like he is part of the world. Since getting he I feel like we can go out anywhere accessible for however long we want. Before that, he would tolerate only 20-30 minutes in his pushchair before complaining.

    My son can't walk, although I have high hopes that it will happen. When my OT mentioned wheelchairs on his 2nd birthday it was like a massive bodyblow..but over the intervening year (that is how long it's taken to get it) I have grown used to knowing that he will need to use a wheelchair at least some of time, otherwise he will use up all his energy just getting around instead of doing fun things. In fact, as I say I was so thrilled to receive it, I was ready to throw a party and it has proved it's worth in a few short weeks.

    I hope you and your son get as much pleasure from a wheelchair, if and when you get one.
  • myjakeysmyjakeys Member Posts: 21 Connected
    Hiya there, thank you so much for your reply. I know exactley what you mean. We are lucky in that our boys can walk but its still so hard cause you wish they did nt have the cp but we would nt change them for the world. I had to go and see my jakes specialist the other day as he s been falling a lot lately and losing his balance. I was told he would now have to wear splints. They have been mentioned before but they previously said he would nt need them for a few years but cause he keeps falling their gonna see if they will loosen his stiffness. Thanks again for your lovely reply and good luck for the future xxx
  • myjakeysmyjakeys Member Posts: 21 Connected
    Hello there, thanks for your reply it makes it easier knowing your not alone in this situation. It was hard when they mentioned the wheelchair but like you say its gonna be better as the less tired our children are the more fun they can have. Thanks again for your lovely reply and take care xxxxx
  • ellesysellesys Member Posts: 2
    Hi Leslie,

    I can empathise with your plight. I have a 5 year old with the same condition as your son. He unfortunately cannot walk indepdendently and has a range of support. We have a K walker, tripod sticks and a very cool flashing wheelchair which he can independently push along. I didn't want my son still in a buggy because, he didn't want to feel like a baby!

    Our problem comes when we go on school walks on uneven ground. Wheelchairs, or buggies for the most cannot cope with rough terrain. So we end up using a mix of the walker and me carrying. Which isn't really great now that he is getting heavier, something we have to address when the time comes.

    I would agree though that having a wheelchair for those time when he gets tired would be a good thing. We only get positive comments on the chair and it is practical.

    I hope that helps.

    Natasha
  • JDWilsonJDWilson Member Posts: 90
    We found moving from buggy to wheelchair really hard and faught to keep her buggy. Now I feel rather Silly It was hard accepting your child is DISABLED especially when they can walk a bit. My daughter has had braces for years now She has Spastic Diaplegia too and was very unsteady She has become a bit steadier But still needs her Chair. She is 11 now and uses her chair occasionally she has a Trike which she uses a lot and she swims really well. The wheelchair situation as you said was difficult for us But she felt So much better in it. Has your child ever said the buggy hurts his back? This is what happened to our child so we had no choice but to get her measured for a chair. She was able to choose the colour she wanted which she was happy about.YOU will get used to it But it will take time. People do treat them different in chairs but watch they don't talk down to him. I love it when she gets out of the chair and walks the look on peoples faces is SO funny haha.
  • myjakeysmyjakeys Member Posts: 21 Connected
    Hello there, thank you for replying. You have put everything i m feeling in a nutshell and you have made me smile and chuckle as well so thanks very much ha ha . I found out last week that jake needs to have splints, are they the same as braces ? I m not even 100 per cent sure what splints look like and cause i was nt expecting the doctor to say this i had no questions prepared and then as soon as i walked out her office a million questions came to me, typical eh ha ha. How old was your daughter when she was measured for a chair, my jake is 6 next month and he does look so uncomfy in the buggy. Do i buy it myself or do the hospital get it for you ( i have nt got a clue) jake has a hospital buggy at the minute and its battered ha ha. Does your daughter still have braces . I don t know how long jake will need the splints on for the doctor never said and i never asked. Its been lovely talking to you (if thats the right word ha ha) and i ll keep a look out for your reply. xxx ps hope your little girl is ok xxx
  • JDWilsonJDWilson Member Posts: 90
    Braces Splints AFO's all the same. Samantha still wears hers She had a break for 6 months but her ankles were sore. She has new ones now. Be careful to check his legs for marks or blisters they can rub.He may complaine they hurt or are uncomfortable It could be that he needs to get used to them but Always listen to him even if you don't give in and let him away with not wearing them.(easier said than done) Samantha actually walks better without hers But her ankles are weak and need support. She has Bunnions and contractures on her feet But would they have been worse had she not worn them? I don't how long Sam will have to wear them I think for a few years yet. I have heard of adults choosing to wear them for comfort. When they havent them on they put pressure on different parts of their foot which can cause pain.
    The wheelchair You should get a hospital issue one from appliance dept. They are heavier than the buggy but stronger and Samantha says better. I think Sam was about similar age it seems a long time ago now lol. We bought stickers for the sides. There is a group on Facebook called helpkidswithcerebralpalsy. It is really helpful at answering questions or concerns. We are all mothers looking out for our kids.It has been lovely to reply to you. It takes me back. Good luck with everything it WILL all work out. Hope to speak to you again soon. XXX
  • fox111fox111 Member Posts: 6
    My little boy Jack got too heavy for a normal buggy and we looked into other options we bought a very expensive buggy ideal for beach, grass etc but took up the whole of our boot and i couldnt see over the top!!

    so i bite the bullet and enquired about a wheel chair, holding back the tears he was measured, but he loves his chair! and uses it when and if needed.

    he gets less stared at in his chair than a buggy!

    go for it, its an emotional rollorcoaster but worth it.

    xx
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