Private Paediatric Neurologist

[fatzak]

We're so fed up with DS' neurologist and his lack of concern over what we can see is DS' epilepsy spiriling out of control, that we are thinking about seeing a private consultant.

I can 't remember who it was on here (widemouthfrog possibly??)who saw a private neurologist but if anyone has any experience could they let me know please!!

(this post is looking very odd and all over the place - not sure if it will post like this or not!!)

fatzak so sorry you feel like as you know we still not happy with ours and i have a friend whos a doctor and her dd is under the same one as our dd and she to is not happy and asking to see some one else , she as west syndrome and is epilepsy . now we know lots like him and recommend him unless its complicated like our dd so i would not tell you to see him, but there is one at Sheffield been told he is the best about ,

Did you move to Leeds trace? We are really fed up with them - the new meds are obviously not working but he just keeps saying to up them even though he is having more seizures everytime we do increase it.

Transferring to Sheffield is our next plan to be honest Trace but it's the whole waiting thing that's getting to us now. DS is getting more and more SEN and that's the worrying thing as he used to be so bright

Sorry, Fatzak. wasn't me! Haven't posted for ages but I am still lurking occasionally. We are still battling with our neurologist - 48 hr ambulatory EEG done in september and we still have no results! He admits that the medication is a lottery (still on tegretol here) and he doesn't really know what type of epilepsy DS has. We get ping-ponged between our Paed and the neurologist, each disagreeing about what are symptoms of his ASD and what is his epilepsy, with neither taking any responsibility.

I've read some of your recent posts and understand your frustration, but I would be worried about the spiralling cost of private consultation.

we only had a second look at leeds our neuro dont want to lose her cos she different but one of others is best ill send you a message on face book with the name and yes i think he as a wait.

so sorry its happing i remember your ds being bright too but carnt you take him in to hospital at sheffield while hes having one i know some one that did just that!

i thought they was sending him to london?

We had the PET scan done in London Trace but it didn't help to show where the seizures are starting. If there is any evidence that they are frontal lobe they will refer to GOSH with a view to invasive monitoring then poss surgery, but god knows how long that will be

why oh why do they mess with our poor children life's and put us through such worry!

Anyone got any advice on a private paed Neuro in Essex/suffolk/London as my grandad has said he's willing to pay for it for my DD as once a year isn't enough. Also looking to pay for private genetic testing so am looking for a private geneticist that I would pay for.(loooong story, but necessary as the NHS geneticist refused to do ANY tests despite both DD and DS2 having a constellation of similar probs)

hi loudlass we go to Dr Adelaida Martinez at the Portland Hospital. She is really lovely, experienced, and listens to us which I'm sure you will agree is very important. But it is expensive - last consultation cost £280 and then you will have to pay for any investigations on top of that.

EEEEeeeep!!

another vote for Sheffield Neurology