Hi there

I had a lovely welcome from the introduction committee. Thank you so much. My 9 year old son, Demarco has had type 1 diabetes for 7 years. 12 months ago, I found him holding his feet up to a fan before bed. When I asked him what he was doing, he said it felt like he had lava flowing through his feet.

If you live with type 1 diabetes, you can't help but learn about long term complications. So when I saw what I saw and I heard what I heard, my blood ran cold.

12 months later, and his condition has been officially diagnosed as Small Fibre Neuropathy. He takes Amitripyline and Pregabalin, however there is still a very big pain window open throughout the day. He can't go to school anymore, so he is doing distance education/home school.

We have seen every paediatric specialist in Australia that can possibly help Demarco. The fact that his nerve conduction study came back normal, and that he was 8 at the time made every single doctor rubbish the idea that this could possibly be related to his diabetes.

One paediatrician told us that it was because his ligaments were growing and stretching and to take paracetamol 4 hourly.

When I came across NT, I had tears running down my face. I finally felt like we had found people who spoke our language.

We have a long way to go with managing the pain. The pain management specialist says "exercise, exercise, exercise" yet poor Demarco can barely last 2 minutes with shoes on. He can't even deal with a sheet over him at night. He is doing hydrotherapy which he loves, but sends his blood sugar plummeting.

I just wanted to tell you a bit about our situation. We are well and truly alone when it comes to support from the medical profession in Australia. I spend every spare moment researching neuropathy and various treatments.

Has anyone tried Benfotiamine?

I will be reading through as much as I can here on the Neuropathy page for the next few days. Thank you so much for contributing what you have, because it's the most wonderful feeling to discover that we really aren't as alone as I thought.

kate.