My little boy just been diagnosed with CP. Any advice on how I can get the best support for him?

NicNakWak

Hi everyone, I’m nee to the page and just getting used to what I need to do! 

My little boy who is 3 has just (Friday) been diagnosed with cerebral palsy and I’m just trying to get to grips with what I need to do to get the best support in place for him. 

Any advice would be massively appreciated:)

chiarieds

Hi @NicNakWak - & welcome to this friendly & supportive community. Thank you for joining for your little boy. I imagine there's a lot going through your mind right now with just having got a diagnosis, but it's great you're looking already as to how best help him. There's some general info here about Cerebral Palsy: https://www.scope.org.uk/advice-and-support/cerebral-palsy-introduction/    & about treatments that can help: https://www.scope.org.uk/advice-and-support/cerebral-palsy/therapies-treatments/

You will see in the 2nd link that physiotherapy is mentioned, & having worked in that capacity with young children with CP, I can only say that it can be very helpful, so try & get a referral from your GP or specialist  to see a neurophysiotherapist.

I will also ask @Richard_Scope to chat with you; he's Scope's Specialist Information Officer on CP. (Richard, the link on 'CP therapies & treatments' in the first link above, is bringing up an error message). Richard has a wealth of information & advice, which I'm sure you'll find helpful. Please know members of our community will also be here to support you at any time.

NicNakWak

Thank you so much @chiarieds…I really appreciate it! He’s seen a physio a couple of times so I called them Friday and they will hopefully call me this week. Waiting for a community paediatrics referral, but feeling very overwhelmed tbh.

chiarieds

You're very welcome @NicNakWak - I'm pleased your son is already seeing a physio & that they will hopefully call you next week. I'm sure you are feeling overwhelmed; it's a lot to take onboard, but, you will get there as Teddybear12 says. Your joining Scope I also feel will be helpful, especially Richard's input, & he will be there for any queries you have. I'm pleased you've joined us all, & I hope the community Paediatrics referral doesn't take too long. Please let us all know how you get on. My best wishes.

NicNakWak

Thank you all so much  

Richard_Scope

Hi @NicNakWak

We have some Cerebral Palsy and diagnosis information on our website: 

 
Cerebral Palsy - Introduction 

Coming to Terms with a Diagnosis 

 
There are also lots of books for parents on the subject, here are the better ones: 

Cerebral Palsy A Parents Guide 

Cerebral Palsy from Diagnosis to Adult Life 

Cerebral Palsy - Complete Care Giving 

Books to read with your child: 

Storybooks featuring disabled children | Disability charity Scope UK 

Xander's Cerebral Palsy Superpowers (One Three Nine Inspired): Amazon.co.uk: Yarborough, Lori Leigh, Freeland, Lori, Oslizlo, Roksana: 9781732638150: Books 

Max and the Magic Wish eBook : Clifton, Gavin, Thomas, Clare: Amazon.co.uk: Kindle Store 

10 Brilliant Picture Books For Young Children With Disabled Characters | Son Stories by Jessica Moxham (son-stories.com) 

Don't Call Me Special: A First Look at Disability (First Look At...Series): Amazon.co.uk: Thomas CMI, Pat, Harker, Lesley: 8601300475998: Books 

NicNakWak

Thanks @Richard_Scope I will have a look at that information. I think I will feel better once the next step is in place and we have some plans.

syeda123

Hj @NicNakWak. I know how you arw feeling. My daughter was disagnosed  with CP in January . I couldnt get my head around it. i know how overwhelmed you must feel. Be adamant for occupational therapy and pyhsiotherapy. @chiarieds whats the difference between pyshiotherapist and neurotherapist?

syeda123

@Richard_Scope Any natural ways to tackle muscle stiffness in the legs?

chiarieds

Hi @syeda123 - A neurophysiotherapist will have specialised in neurological problems such as CP. Having said that a physiotherapist that is interested in working with children is also good. How are you & your daughter getting on now?

syeda123

Can I request a neurophsiotherapist on the NHS?

Me im overwhelmed alot of the times. Up and down days. My daugher is ok thank you.Going at her own pace bless her.  its her gross motor which was affected. She was diagnosed with spastic displegia. Her last pyshiotherapy was 7 months ago . So my amazing mum gave her a gift to do some private physio. at a centre called c pontenial. 
Now awaiting NHS physio.

chiarieds

Hi @syeda123 - oh, you do have a lovely Mum, as does your daughter. Yes, you should be able to request a neurophysiotherapist with the NHS. I'm sorry your daughter hasn't had physio for 7 months, as it can certainly help. Hope it doesn't take too long for her to be seen. Take care of yourself too.

syeda123

Aww thank you @chiarieds. Thats nice of you to say. Im trying everything possible. Hopefully we see some improvement.

Richard_Scope

syeda123 said:

@Richard_Scope Any natural ways to tackle muscle stiffness in the legs?

Hi @syeda123
One natural method that I use is to bathe in a warm bath with Epsom salts, which are high in magnesium. I find that it relieves the stiffness in my legs. 

SaraC_Scope

Hi @NicNakWak My name is Sara and I work for Scope's Navigate team.  We provide emotional and practical support to parents who have just received a diagnosis for their child over 6 sessions.  If you are looking for guidance and support alongside the online community, we are here to help. Here is the link 
https://www.scope.org.uk/family-services/navigate/

Kind Regards

NicNakWak

@SaraC_Scope that looks really helpful…I will apply for this as I think it would be useful.