Advice please

DC_Mum

My daughter is 12 nearly 13. She has always had problems learning difficulties , Austim (was diagnosed 2021) she always masked even now so I understand why this diagnosed late. When she was a baby she barely smiled, fully say up at 4 months missed crawling and rolling over and was told this is being skipped at 10 months she stood up a week later she was pulling her self up and using funiture to walk by 11 moths she was fully walking. She always been clumsy, her left side of her body has always been shorter, always chose her right hand and I was always told that this was normal. When she as about 10 I took my concern to doctor and said it was quite normal and if things get worse then go back. Than last year we went to paediatrician who reaffed her for MRI the results came back that she had a small cyst and we we reafered to physio, orthopaedics and nueroglist and I was told the cyst was porencephalic cyst?, this came about as stroke/brain bleed either in womb or just after and also told that she had mild celbral palsy. Has another one else gone through this or any ideas how it was missed I only found this out at nueroglist appointment on 22/8/23.

SaraC_Scope

Hi @DC_Mum

Welcome to the community and thank you for sharing recent news. I hope you're doing ok after receiving such a recent diagnosis. Do you have support for yourself?

Are you receiving medical support from your daughter's pediatrician? If you have any questions around the diagnosis, I would say, write these down in a notebook and raise them at her next appointment. It's ok for you to advocate and get the answers you're looking for.

If you're looking for some community support, Action CP is a good organisation to contact. Cerebral Palsy UK and Families of children with CP are family groups on Facebook. Scope have the CP Network for support.

I've tagged @Richard_Scope the CP Specialist at Scope.

The online community is here to answer any other questions you might have.

Sara

Family Services Advisor