Is it Ataxic CP? - Help!

Allhelpisappreciated

Hi everyone,

We had a traumatic delivery, which resulted in our son being cooled for a brain injury (HIE).  He’s four and is about two years behind with his motor skills.  He’s wobbly on his feet, poorly coordinated, can’t really jump or heel toe walk.  When tired he veers around like he’s drunk or on a boat. 

We’re based in the UK. We’ve seen our GP, community paediatrician, neonatologist and by consultant paediatric neurologists - from both our local hospital and our nearest children’s hospital.

Because he is mobile and not profoundly affected, everyone is a bit muddled about whether this is ataxia.  Because he has low tone and the team cant elicit any reflexes, in their mind that doesn't fit with cerebral palsy or ataxia.

We’d really appreciate any advice on where people are diagnosed and treated for ataxic CP.  Are we in the right place to find out what's wrong with him?  We're debating whether to ask our GP to refer us to one of the ataxia UK centres for a second opinion.

Did any other UK parents explore diagnosis at an ataxia centre?  Can you give us any feedback on your experience?  From my research they appear to be in London, Oxford and Sheffield.  We’re happy to travel for the right team – particularly a team which has specialist physios who can maximise the motor skills he does have. 

Thanks so much!

Adrian_Scope

Good afternoon @Allhelpisappreciated and a warm welcome to the community.

I'm going to ask our Cerebral Palsy programme lead @Richard_Scope to take a look at your post, and see if he can offer any support or advice with your query.

He doesn't weekends so it may be a couple of days before he gets back to you, but please don't think you've been forgotten.

Richard_Scope

Hi @Allhelpisappreciated

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 effects 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 would definitely speak to your GP about a referral to the Oxford Adults and Children Ataxia Centre

Allhelpisappreciated

Dear Richard and Adrian,

Thanks so much for getting back to me and for signposting so beautifully, I really appreciate it!

Thanks for the information and suggested next step.  I'll get in touch with my GP.

Can I ask - is there a reason you suggested Oxford over the other centres?

Thanks so much, really appreciate it!x

Richard_Scope

Hi @Allhelpisappreciated

I'm happy to help! I mentioned the Oxford Centre because it is one that I have heard mentioned in conversations. I'm certain they will all be of a high standard though.