Hi. In case it helps, I would recommend Dr Adam Pedler (GP), Professor Philp Thompson (neurologist) and Dr Martin Robinson (neurologist). Cheers, David.
I live in Australia and have been searching for a Dr for a long time who knows about EM, my 8 year old daughter has Vulva EM and her dr's in Melbourne don't know a lot about it, they got the diagnosis from America!!! Im definitely going to look into the dr's you mention above:)
Just a quick update - I contacted Dr Adam Pedler, but he no longer deals with EM...I'm going to try Professor Thompson now...
Our Daughter soon to turn 13 developed symptoms of EM 9 Months ago and was eventually diagnosed by Dr Damian Clarke a Neurologist at The Woman's and Children's Hospital in central Adelaide, we live in Adelaide.
He is a specialist in Pediatric neurology and pushed through for various treatments for our Daughter. Dr Clark has also facilitated a blood test to be analysed in Germany to see if the EM is caused by a genetic mutation. It takes a while or the result come back. To move things along we had booked a private appointment with a Rheumatologist who referred us to Dr Clark. If you have a sympathetic GP could ask for a referral.
I see from you profile that you are in NSW so it may even be worth while speaking to the Dept of Neurology at The Woman's and Children's in Adelaide to see if there are any Neurologists familiar with EM closer to you. I believe there are only two Children with reported cases of EM in South Australia our Daughter being one of them. The main number for the hospital is 08 8161 7308 and ask to be put through to Pediatric Neurology.
Schooling has become an issue for us also at the moment , our Daughter was due to start high school in January. We have now had to enroll Her at Marden Open Access College in a distance learning program, at this stage a normal classroom is not viable due to the room having to be at a constant 18 degrees. We have set her up in the Home Office which is air conditioned and the offering from the College is excellent with on line interactive classes. work is sent off for marking.