Hi there.My 22 month old was recently diagnosed with Mild Cerebral Palsy.I had been to see so many people and all missed the diagnosis. I seen a lady,after researching myself, in the Clementine Churchill Hospital, Sudbury Hill, Harrow, HA1 3RX. Her name is Dr. Chelvi Kukendra-Rajah and she is fantastic.Diagnosed him in first consultation and referred me to a brilliant physio therapist. I did go private with BUPA for this consultation and his MRI but she does work in Hillingdon NHS hospital in a child development centre and thats where I seen the physio too. Im now on NHS system and finally my little man is getting the support he needs. Hope this helps. Would highly recommend her.Best of Luck.

Hi, Thank you for your response.  My grandson was diagnosed with mild CP about 18 months ago - he is 3 years old.  We are not sure if he is receiving the best treatment  (we live in the SE) which is why we want to get a second opinion.  We have spoken to two separate Neurologists who specialise in CP in London and are happy to pay privately for their consultation.  but unfortunately we have been told by both that because we are seeing them privately they would be unable to refer us to an NHS hospital or specialist unit in London for treatment but would send their reports to our GP - then we would have to fight with the local authority to get the treatment that they recommended.  Thats why it was interesting to read your story - will update on the outcome

Does your physio therapist see your little one very often and has he ever had seriel casting.

Thanks

I seen first physio consultation privately(self paid) and he referred me to local NHS services.Physio came to the house on Tuesday gone and is coming back next Thursday with excercises.Im shocked you not getting same. I can give you contact number for my local services in Wembley as they only do CP children and they might be able to help you.

Thank you very much for your help and taking the time to respond.  We are now going to ask for a second opinion and ask to be referred to GOSH.  We will then be confident that we are getting the best treatment and it will put our minds at ease.  I will keep you informed of developments and the outcome.  I would also welcome the contact No for your local services in Wembley that deal with CP children - it could well be useful.  

Our local primary care health trust are not the best in the world and figure at the bottom of all surveys.  Our hospitals are graded as fair, it doesn't give you much confidence.

Thanks

Hello,

I am quite shocked at the difficulty you have had in obtaining a diagnosis and definitive treatment and the lack of support. My grandson had a traumatic birth so perhaps that is why he was followed up and given such a lot of therapies? Anyway he has had physio come to our home, also the OT, speech and language therapist, dietician (low birth weight). We are only waiting for Portage, though is on the waiting list. He has weekly hydrotherapy and sensory room experience. He has a standing frame, and awaiting a special hydraulic chair to help with his hand control/sitting. He's just received his second pair of piedro boots at £100 a time!  

He sees a disability consultant, a neurologist and orthopaedic consultant (for paeds) and he gets DLA at the highest rate because he is affected in all four limbs. The money has been a huge help to my daughter meaning she can work part time so that we can do the maximum amount of physio (disguised as play!) on most days and have done since diagnosis.   He is 20 months old and is relatively mildly affected - he can sit fairly firmly (but loses balance), rolls over both ways and pushes up onto his arms, his legs would happily crawl away but arms are still weak so ends up with carpet burns on his chin,(they are growing stronger though) trunk and neck are weak for his age but not noticeable unless he is tired. He is expected to walk using AFOS and not need botox or operations. His main issues are balance and weakness but our physio says as he gets stronger these will become less noticeable. 

In short the outlook is very good for our little angel.  Before his MRI at 3 weeks his outlook was moderate to severe, downgraded to mild to moderate. Our physio says he has made 2 years progress in 1 year and every week she sees improvements.  I feel sure the early intervention and intensive physio has made all the difference for Elliot, and has made the future for all of us brighter.  Incidentally Elli is as bright as a button, happy and cute. You can see a pic of him on this thread    http://www.scope.org.uk/node/15920 under elibarebum!

You can contact Paediatric Neurology/ICH - Dubowitz Neuromuscular Centre/Dept of Neurosciences & Mental Health/
Faculty of Population Health Sciences ... in London I know Professor Muntoni he is brilliant and helped me with my son who had SMA... Only just joined here sorry if too late but hope it helps.