Hi!

Im Kate, my 9 year old was diagnosed with small fibre neuropathy two months ago. I must mention that he has had type 1 diabetes for 7 years, which has been very difficult to control. His neuropathy is a complication of his diabetes.

Which brings us to NT! I am usually very confident and upbeat, however, with a child of this age with this condition, there is NO ONE who understands or can remotely relate to what is happening. Even doctors can't believe that a child of his age had such a rapid onset of symptoms. I feel so isolated and alone. I am terrified for my boy's future.

He is taking Amitripyline and Lyrica for his pain-he has a reading age of 12+ and is advanced with his schooling but he I am now homeschooling him because he was simply missing too much school. His symptoms are still severe enough that he has 5-6 pain during the day, and then, of course, it is always worse at night.

I think we are both exhausted.

Im so grateful to have stumbled across this valuable little community.

Kate. (Demarco's Mum.)