Hi, I'm Sahrash! Opinions wanted about how useful a walking frame is for my son.

Sahrash

Please can someone advise from their past or current experience will a walking frame help overtime? My son is 4 and a half and doesn't move at all in the walking frame which he uses at school only. 

Cher_Inactive

Hello @Sahrash and welcome to our online community   I'm glad you found us.

If I could just ask a few questions to help us better offer support, was your son given the walking frame as a result of an assessment by a physiotherapist or similar?  And if so, what was their advice about long-term use? 

Also, if you don't mind sharing, what condition does your son have that requires this aid? 

Take care and I'm looking forward to speaking again soon.

Tori_Scope

Welcome to the community @Sahrash Thanks for reaching out to us. Please do let us know a few more details so that we can do our best to help, if you feel comfortable doing so. 

Sahrash

Hi @Cher and @Tori and thanks for the reply 

Yes the Physio and my son's doctor recommended the walking frame. So that he can build on strenghting his legs. Also to encourage my son to try and take steps. 

My son was diagnosed when he was just under 2 with Spastic Celebral Palsy. This was confirmed through a MRI scan which showed PVL. 

If you require any more information please let me know. Speak soon 

Richard_Scope

Hi @Sahrash
Thanks for posting. I have CP too and when I was younger I used many types of walking frames. It is important that your son is helped by the physiotherapist and you to use the frame as you said by helping him to learn how to take steps. This needs to be done daily as part of his physiotherapy regime. so he gains muscle memory.

Sahrash

Hi @Richard lovely to hear from you. It's great to get advice from someone that has CP. Are you able to walk now? Has the walking aids etc helped?
We will start using the walking frame everyday now as I have brought this equipment home from school. How many hours in the day should he be in a walking frame? Is there anything else we can do to encourage him to stand or weight bear? 

My son isn't getting much help from the Physio. They haven't seen him now over a year. 

Richard_Scope

I walk very rarely now. I prefer the speed and safety of my wheelchair. The key is to try and make it fun and incorporate it into the daily routine. Unfortunately, the pandemic has had a huge effect on physiotherapy services. There are some organisations that you could contact:
Specialist movement therapy UK, Childrens Physiotherapy (the-movement-centre.co.uk)
and
Holistic therapies to help children with movement disorders (cpotential.org.uk)

WestHam06

Hi @Sahrash, 
                       Welcome to the community and thank you for joining us. How are you? I have Cerebral Palsy and used a walking frame for a short while when I was younger. Physiotherapy is really important as it helps with muscle memory and it's important to encourage walking in the frame as part of this. It's also important to make it fun and enjoyable though I appreciate at times this may be difficult. Please do ask any questions you may have and I am happy to try to answer. All the best, thank you. 

Sahrash

Hi @Richard
That's perfect, I have had my little boy in the walking frame today. He started moaning after 15 minutes. I will start to use this consistently everyday for at least an hour a day. Thanks for mentioning a couple of organisations. I have just made contact with them.

Sahrash

Hi @WestHam06,
Thanks for the reply 
I'm good thanks and hope you are well too! It's very difficult to look after my little boy as he is getting bigger as time goes on. I will continue using the walking frame. At school he has his standing frame too. I want to start some physio on his legs by either massaging the stiff muscles or applying pressure. Is there anything in particular you would recommend? Thank you

WestHam06

Hi @Sahrash,  
                        I'm pleased to hear that you are well. I can imagine it must be difficult to adjust as your little boy grows but hopefully professionals will be able to support you with advice and guidance in relation to different challenges as they arise. I know when I was younger, and please can I stress this is personal experience and opinion, my Mum adapted and found ways around different things often through trial and error, finding what worked  best for me as an individual and as a family. You know your son best and so with professional advice and your instincts, it's possible they will meet in the middle and you will find things that work for your son and you. Remember, no two people with CP are affected in the same way, we're a fantastically unique group of individuals   I would recommend speaking with your son's physio in relation to massage and applying pressure. I would recommend physio as this is a really benefical way to support muscle stiffness and tone. Though currently not possible, swimming is another really benefical form of exercise as well as being fun. Physio is something I resisted as a child and even more so as a teenager causing long-term problems as a result. I now do it daily. I hope this is helpful and please do ask anymore questions. Thank you.

WestHam06

Hi @Sahrash, 
                        How are you and your family? How is your little boy getting on with regards to using his walking frame? Thank you. 

Sahrash

Hi @WestHam06,

Sorry for the delay in replying. I'm back at work from furlough since early March hence the delay  

I'm good thanks and family too. Hope you're well? Little boy is doing well started to take a few steps in his walker. I have asked about Botox injections so just waiting for a referral. I contacted Rainbow Hub to see what support is out there. I will start taking him swimming soon, hoping to start by next weekend. 

Hopefully slowly but surely we will get there. I'm just finding it hard currently to transfer him to the car every morning when we are off to school. He's just getting heavier everyday it feels like! 

WestHam06

Hi @Sahrash, 
                       Please don't apologies, I hope going back to work has been a positive transition. I'm pleased to hear that you and your family are doing well and I hope that you are able to start to take your son swimming at the weekend as this is both fun and good physio It's also great to hear that your little boy has taken a few steps in his walker and I hope the referral for the Botox injections isn't too much of a wait. Please may I ask, does your son have an OT as they may be able to support with the current difficulty you are experiencing when transferring to the car? I'll tag @Richard_Scope in to this to see if he is please able to make any suggestions? Many thanks. 

Richard_Scope

Hi @Sahrash
@WestHam06 is right. It might be a good idea to get an OT assessment from your local authority. There may be a wait time for this though. In the meantime here are some ideas that might help you to get your child in and out of the car. When you do get your assessment you can then discuss these potential solutions with the OT.

WestHam06

Hi @Sahrash, 
                       How are you? How are things with your son and transferring to the car? I hope that the link @Richard_Scope provided has been of some use. Thank you.