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We want to hear from you: please tell us about your experience of the online community.

Looking for advise and support

Paige34

Hi I'm Paige, My youngest daughter has CP that mostly just affects her left ankle - so she tip toes. Although she is almost 3 and a half developmentally I would say she is about 2 and a half, so sometimes this is difficult. Looking for advise and support I thought it would be a good idea to join. As GP etc have not been that helpful in fact the GP has never spoken to me regarding the CP.

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Comments

Richard_Scope

Hi @Paige34
A very warm welcome to the community. It's great to meet you!
I live with CP myself and work for Scope. We are a really friendly community with lots of knowledge and real-life experiences of living with a disability.

Really sorry to read that your G.P hasn't been very helpful.
Has your little one received a formal diagnosis of CP? She should also be under the care of a paediatrician.

steve51

Hi @Paige34

Good Afternoon it’s great to meet you today.

I am one off a team of Community Champion’s here at Scope.

We have got some info that will hopefully be useful:

https://www.scope.org.uk/advice-and-support/cerebral-palsy-for-young-people/

https://www.scope.org.uk/advice-and-support/cerebral-palsy-introduction/

Hi @Richard_Scope

I have just come across this post & I was hoping that you can offer me some help/advice?????

Thanks

@steve51

Paige34

Yes she has a paediatrician, not that I have found her to be very helpful. She has physio but no face to face appointments at the moment due to COVID.

janer1967

Hi @Paige34 Welcome to the community its great to have you on board. I don't have any wise words of advice but hope you find help and support here.

There is a section for CP which you may find useful

Richard_Scope

Paige34 said:

Yes she has a paediatrician, not that I have found her to be very helpful. She has physio but no face to face appointments at the moment due to COVID.

It's disappointing that the paediatrician hasn't been helpful either. Unfortunately, COVID has had a real knock-on effect on services like physiotherapy. Are you able to carry with the stretches at home? I completely understand it's never easy with a little one!

steve51

Hi @Paige34

I am very very sorry to read about your struggles in terms of health care for your son.

We have got some more info that may be helpful for you & your son.

I will be very very happy in looking through these if that would be helpful????

Where do you live if you do mind me asking.

I can see if there’s any further help/support

@steve51

Ails

Hi @Paige34 and welcome to the Community. It's nice to meet you. I'm sorry to hear about your daughter's CP and that your GP and Paediatrician aren't very helpful. I see that you have had very good already from members and I don't have anything to add as I just wanted to welcome you. I hope you have found the advice/info provided to be helpful though. You will receive great support from members on the Community as there are some members who have CP and some other parents who have children with CP also so I'm sure many will want to reach out to you and maybe share their own experiences with you. I hope you find the forum useful and enjoy your time with us. I look forward to seeing you on here anyway. If you need any help/support with anything then please just ask. All the best.

chiarieds

Hi @Paige34 - Welcome to our community from me too. As far as advice goes, with any questions about CP, you will be able to rely on Richard's understanding.

I'm sorry to read that her GP & Paediatrician don't seem helpful. With her GP, if you want to ask questions about your daughter's CP, then do so. It's a 2-way process, & they should work with you. As a parent, you are the most important person in any team. Once you get your GP onboard, you could always ask for a referral to see another Paediatrician should you wish.

As far as support goes, I'm pleased you've joined. Altho most of us have medical issues, or a close relative with them, we do try to help each other as much as we can. So please do use this forum to ask questions, or just chat here any time.