Lesannett1

Thank you but actually the query was for Wombat140. The problem is for people based in the UK who Skype with professionals in the USA. Getting the doctors in the UK to work those in the USA is a problem usually. In the UK we struggle to get diagnosis and treatment. Hopefully this will start to change soon.

I have asked how the ones who have been dealing with her have managed and they have all been to the US at least once a year to make it legitimate. I know as a group that they are trying to organise for Amy to come to the UK to enable us to see her without us all having to travel to the US. Apparently the gp could still refuse to follow Amy's advice even with a letter. Some managed to get the gp to cooperate but this is after a face to face consultation. At least one of them travels to the states to get the tests and prescriptions there. The fb group is a closed/private group so you could set up a fb account not even using your real name if you didn't want people to contact you. It has been really useful for us and I am not a huge fan of social media myself. I have learnt so much and some people are managing to finally start getting diagnosis and treatment. Have you asked your gp for a referral to a paediatric neurologist?

Hi there is a UK PANS/PANDAS Facebook group which might be of interest to you. We are all mostly in the same boat when it comes to getting a diagnosis or treatment in the UK but this may offer some support and ideas. A few also Skype with Amy. Let me know if you want to join and I can pass your name on. Whereabouts are you in the UK?