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Looking to go private for a Cerebral Palsy assessment/diagnosis - recommendations needed.

4 replies

BlackNails · 18/02/2018 09:44

I'm looking for recommendations for a private pediatrician/GP service for a CP assessment/diagnosis. As I currently work in the EU I am not considered permanently resident for NHS purposes. I may be able to get something via our EHIC but am not holding out much hope, so exploring private options. Scotland would be best (we are there every summer) but anywhere in UK is a possibility.
Background: DD has just turned 8. She has epilepsy, speech aphasia and articulation disorder, severe dyslexia and dyscalculia, problems with balance, flexibility, walking long distances, pain when walking, tripping and falling, problems catching/throwing etc, below normal fine gross motor skills. She was late to roll, sit, stand and walk but all was put down to delay as she is adopted. She was late to talk and severely delayed in speech until about 4-5 years old. Neuro said, after clear MRI in November, her best fit was mild CP. She was hospitalised in October for testing to rule out brain tumour, muscular dystrophy etc after she began getting bad pain and had serious issues walking/standing in the morning or after sitting for some time. This resolved after about 6 weeks. However she then walked back on this because there is little birth info and nothing on birth mother's prenatal health. This is typical for where we are living, in that, without a big flashing sign saying 'this is it!!!' there can be a reluctance to 'go out on a limb' and make a firm diagnosis of anything.
I desperately need a diagnosis, so this is our best way to get one.
thanks

OP posts:
mamaryllis · 21/02/2018 01:40

The neuro wouldn't diagnose? Or wouldn't commit?
Does dd have a paediatrician that she sees regularly, and ongoing physio/ SLT etc?
Sometimes consultants are a bit coy and prefer to use 'global development delay' in the absence of anything definitive (and actually, sometimes even WITH definitive brain damage, they sometimes prefer to use GDD - presumably because the brain damage might spontaneously resolve. Not.)
With dc2 (not my cp kid) we found it easier to treat the 'things', as there isn't really a way to get a definitive dx. So if he needed help with sensory stuff, he saw OT, etc. Is there a reason that you need a dx? It isn't possible to access any therapy without one? (Not sure where you are, sorry).
Are there any other possibilities for dd's delays? Dyspraxia etc? FAS? Ehlers Danlos? Has she ever had a genetics screening?
We used the RAH in Paisley but I can't comment on private options. Despite the fact they broke her in the first place, the follow up was very good. She was an outpatient at York Hill for MRIs as the RAH didn't have specialized enough facilities, but apparently that has been replaced by a new children's hospital.
Our neuro was Antonia Clarke at St George's in London. She does private work too I think.

BlackNails · 22/02/2018 07:14

Thanks Mamaryllis. We are currently out of UK but I want to move back to Scotland within the year. Good to hear you felt Yorkhill was good. Neuro won't commit as where we are at the moment, culturally they are hesitant to diagnose anything without twenty billion bits of 'proof' (unless they just want to throw antibiotics at the problem). I want clear diagnosis for coming home so we don't end up having to start all over again with NHS waiting lists etc. I seem to have found someone now in UK who, cost wise, is not going to bankrupt me, and has loads of experience. Via email so far I like what she is saying from the development milestones info and video I have sent, so finally feeling like we are getting somewhere. It's definitely not FAS and we're waiting for results from genetics from October. It could be dyspraxia - such similar presentations, but my feeling is it is likely CP (mild, right sided hemiplegia) given some of the observable symptoms when she was a baby. Fortunately the doc I've contacted agrees birth history isn't needed when you can go over clinical observations. I think a clear diagnosis of why she is different will also help DD, as she gets very upset and frustrated by her speech and the fact she can't do what her peers can do e.g. in PE or on sports day. I also think, having a definitive diagnosis, and so being able to access disability/cp sports groups when we come home will be great for her - she loves swimming and sport but does get sad that everyone else manages everything so easily. Having the chance to meet children with similar difficulties and see what is possible will be a great emotional boost for her I think.

OP posts:
Ariyan20 · 12/11/2023 00:33

Hi please could I ask how you got on with the private appointment did your child receive the mild cp diagnosis. If you don’t mind me asking please could you send me contact details for this specialist I’m looking for a private specialist that diagnosed mild cp, I feel my child definitely is affected so want to help him. Many thanks

kmbx · 20/05/2024 18:22

hi do u have any follow up pls?

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