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15 month old being assessed for Cerebral Palsy

paulgosling

My son who is 15 months old who was 8 weeks premature, he had his initial assessment today as we were concerned with his development and they have mentioned Cerebral Palsy. He has to go back in 3 months to be assessed again, in the mean time he needs lots of physiotherapy, hydro pool sessions and we have been told to send him to nursery. Any advcie out there from people who have been in a similar situation?

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Comments

Adrian_Scope

Hello @paulgosling and a warm welcome to the community.

It must be a lot to take in at the moment but it's great that they are taking your concerns seriously. How do you feel about sending your son to nursery?

From what I've learnt from our information officer @Richard_Scope, the average age for a Cerebral Palsy diagnosis is around 18 months, so I'm sure lots of people have been in or are currently going through a similar situation. Hopefully some will able to share their experiences with you.

I'm also going to tag in @Kate_Scope and @Emma_Scope to tell you a bit about our Navigate service which may be of some use to you.

[Deleted User]

Hi @paulgosling

Welcome to the Scope Community! As @Adrian_Scope mentioned the Navigate service may be helpful to you at the moment and I can tell you a bit more about it.

Navigate is free, digital mentoring service, that provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional needs. Navigate is open to any parent or carer that lives in England or Wales and has a child under 18 who has either received a diagnosis of disability in the last 12 months or are currently being assessed.

Navigate is a 6 week programme that puts you in touch with a Parent Adviser, who will help you talk about your feelings and concerns. You will have weekly catch ups by phone or online and they will support you in organising your thoughts and feelings, give practical advice and suggestions and explore your needs and personal goals.

If you feel this is a service you would like to access please follow the link below to make an online self referral or call 0808 8010510.

https://www.scope.org.uk/family-services/navigate/

I hope this helps.

Emma

Richard_Scope

Hi @paulgosling
It's good to meet you.

By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.

I'm really happy to talk further with you. Please try not to worry (easier said than done)

ayomide76

hi I went through the same with my son. He is now 22. The only way to tell if it is cerebral palsy is to check the brain from what I was told. Did your son have brain scans in hospital? My son was 13 weeks early. If your son did you can ask them to check the brain scans again. I did this and this is when the cerebral palsy was picked up. He was nearly 3 by this time. If they had checked properly when doing the scans they would have seen it. Hope this helps.

emmarenshaw

Hello @paulgosling a warm welcome to the community. I’m Emma, one of the Community Champions. I have CP myself, and I am happy to help if you need anything at all. I know it must be a lot for you, but please know we are all here if you need us.

Chloe_Alumni

Hi @paulgosling and a warm welcome to the community, how are you?