Ali - is it possible for you to leave the UK and go to another European country for treatment? For instance, Germany has ketamine. They likely offer the multi day long infusions as well as the comas. Perhaps you can find Lidocaine infusions in a nearby country . It seems that you are pretty limited in your choices right now, and your suffering has become more severe since your arm injury last month.

The family of a boy from my state (in the US) that needed financial help getting to Germany for the K coma held numerous fundraisers and collected money through a website.

Sandy

Thank you for the suggestion.

I'm not sure if going to another country would be an option at the moment as we are really stuck for money (as we all are) and most of the neighbouring countries near here have the same health service. It is something to look into though. We have spoken to my doctor about it before and he said that he doesn't know if anywhere else would accept me either because of my age etc.

I think our main problem is my age and the UK's health service. Because I am only 14, I can't have many of the medications and treatments that adults have as the NHS (National Health Service) wont cover them. My Doctor is always having to force things to try and get me some pain relief etc.

The NHS is really bad sometimes. We can't get medications if our insurance will cover them as we have to get a lot of doctors to sign for them etc. We can be waiting months to get an appointment with another doctor (it took me about 3 months to have my consultation to see the doctors at Great Ormond Street Hospital!)!

I'm on oral Ketamine at the moment and I wish that the UK would do Ketamine infusions but apparently they aren't licensed at the moment so that isn't really an option. The Ketamine takes my pain from an 8 on the pain scale to around a 6 usually but since my arm has been in a flare, it doesn't seem to be working as much. My Doctor has increased it so I can take it 3 times a day so hopefully that will help more.

Thanks again for the advice - it is worth looking into.

I saw a documentary about Great Ormond Street Hospital once but that it was so difficult to get into... well, of course they don't mention that part.

Ali,

I wish you the very best in finding something that works. If muscle relaxants won't work, then what? Are you really sure the only thing left is Botox?

From what I've heard not everyone is happy with the NHS, but I don't know that much about the system in the UK, only that the NHS has a sort of a bad rep, as in: limited and bad health care, or am I wrong in supposing that?

I have to say... It's not easy for any of us, but in your situation (being 14) it's even harder and you are handling it all so very maturely!