Brilliant children's neurologist or epileptologist?

[zippytiptoes]

We are stuck! We have an 8 year old daughter with epilepsy (absence seizures). She has hundreds in a day and it really affects her concentration, mood, relationships with others, behaviour etc etc. The list is endless. After years of drugs which made no difference to the epilepsy and appeared to increase all the negative aspects of her condition, we asked for a second opinion. We felt we'd come to the end of the line with our neurologist.. He'd suggested VNS.

We were referred to GOSH in January 2017 where we had a brief meeting with new neurologist. They didn't seem particularly supportive and we felt as though a letter had probably preceded us from our neurologist. We were promised a repetition of baseline tests, told that VNS was definitely not the way forward.

Despite lots of me calling them up, and writing letters, we haven't been seen by them at all, or indeed any consultant since September 2015. We are left stuck, swimming against the tide in a day to day world of lots of seizures and no support.

Our GP is supportive but doesn't really know where to send us.

We need someone who will support us and understand the difficulties we've experienced over the last six years. We thought we'd found someone, but it appears he's since retired.

Does anyone have any recommendations or suggestions? We are literally stuck! I am determined to sort it. It has such a huge impact on our family life and I'd be really grateful for any suggestions or support. I'd be happy to travel anywhere in the country and really don't want to have to go back to the origin neurologist.

Thanks for any help.

[UnwelcomeVisitor]

Sorry to read about your daughter.

You mention GOSH which has to be the top hospital in the UK for children. Professor Helen Cross is their number one neurologist

I can only thing that I can think of you doing is to go back to your GP for a second visit to GOSH

Here's wishing you well

Richard

[zippytiptoes in reply to UnwelcomeVisitor]

Thanks for this advice Richard. For some reason, communications between Helen Cross' admin team have been horrendous. I have had several attempts to chat and sort an appointment and the last thing they suggested was that we just stick with our original hospital. The idea was that we receive a suitable second opinion as we were not finding any progression or feeling particularly supported. Is there anyone in the North West, North East or Scotland you would recommend? We would really appreciate some support and an understanding consultant. Thanks

[Sherman2006 in reply to zippytiptoes]

I cannot recommend anyone but maybe you could try Tim Martland, the Consultant Paediatric Neurologist at the Royal Manchester Children's Hospital. Good luck

[zippytiptoes in reply to Sherman2006]

Thank you

[joytojoy]

Being both an ex-epileptic myself (now 12 years seizure--free) and a dedicated pre-primary teacher with fifteen years of experience of living in and being treated in different parts of Greater London, I would strongly suggest you take/bring your daughter to a top neurological hospital in Chennai, India- Kauvery Hospital ( kauveryhospital.com) Don't mean to instill fear but supportive caution- I was on the NHS Waiting List for surgery which by the time, my 'turn' would've come, I would've lost my memory for life. The 'temporal lobectomy' surgery was co-performed by the ' amazing nuerosurgeon Dr Prithika Chary- founder of this hospital above.

This visit for a minimum length of a month I should think, can start as a 'family break' if selected at an appropriate time of the year weather and school term break-wise (besides ofcourse appointment dates!) but end with a 'life-long clearance' of the word 'epilepsy' especially if performed during the early years when there would be a much less chance of possible warning 'side-effects'. Faster the better- I promise.,.....out of first-hand self-experience!

Sending lots of support and Daimoku (prayers) from the other side of the word.....hence extra strong for your daughter!