Paediatric neurologist (private sector)

[Anonymouse2019]

Hi,

I'm looking for a consultation for my 4 year old daughter with a paediatric neurologist on the private sector (getting nowhere with NHS services - very long and painful story!). Her NHS GP has already written a referral letter at our request so we just need to find a specialist now.

My daughter has diagnosed periventricular leukomalacia and developmental venous anomaly but NHS doctors are not taking our concerns seriously. She has difficulty with walking, balance, coordination, core strength, gait, gross and fine motor skills, overall development, obsessiveness and challenging behaviour.

We are concerned that she shows signs of a number of things including ataxia, ADHD, autism, dystonia and cerebral palsy and want a specialist to consider every factor in order to work out what is going on, work towards a diagnosis IF there is one to be made and more importantly, how we can find ways of helping her which work for our little girl.

I'm really stuck. Any guidance would be hugely appreciated!

I think a community paediatrician would be more appropriate, one who specialises in neuro disability. I can't recommend anyone specific.
In the meantime have you had physio, OT and SALT assessments which would offer support and guidance

In which city are you looking?

It's the community (developmental) paediatricians who say the PVL is not affecting her but I've done weeks of research (not Google but medical textbooks, research articles and so-on) and believe it is BADLY affecting her. We've been on a 3-year merry-go-round in the NHS with this. I'm getting off it for the sake of my child.

We're in the midlands but willing to travel pretty much anywhere.

Birmingham Children's Hospital have a private paediatric neurology service which might be helpful to look at

You can use the Bupa consultant finder to find someone suitable.

I can recommend Dr Maria Kinali - we saw her privately at the Portland in London about 6 years ago, I don’t know where she sees patients now, it may be the same.

She is very, very thorough and while she immediately formed a working conclusion about DD’s condition based on observing her, she also ordered a whole bunch of tests to rule out other possibilities.

IME the neurologist is great for diagnosis and overall overview but not really the person who helps with practical advice - they will refer you to occupational therapists, physios, SALT etc who do that. You may be best off with NHS for that suite of people? But would recommend Dr Kinali for the diagnosis process absolutely.

I would contact the neurology department at Great Ormond Street Private patients, GOSH is excellent with providing treatment spanning different specialties.

Bit late to the party with this one but hope you have made progress. I would also recommend Maria Kinali. The Evalina hospital in London has a very good team of neurologists at the same expert level as GOSH. They have an A&E so you could just take her in if you were worried and get people to look at her there.