Thakyou everyone, Chloe is being readmitted to the CHildrens hospital in Melbourne on Monday for a week to see her gyno, pead, pain specialist, neurologist and who knows who else, more tests are being done, im hoping that this time they can finally figure out a plan to help her. Ive been doing lots of research and have found lots of great info so ill be taking all of it with me to the hospital.
I was diagnosed with erythromelalgia today and have spent the evening reading up on it online when I came across your post. I wanted to respond to your post right away as I can't imagine how awful it must be to watch your little girl in pain. I hope that you have found some answers since your original post but I just wanted to pass on the details of the doctor that diagnosed me.
Dr Pete Smith of Allergy Medical in Brisbane diagnosed my erythromelalgia. He also has a clinic in Southport on the Gold Coast. To give you a quick run down of my condition, I had chronically painful and itchy hands and feet for about a year. I spent the year in the care of rheumatologists who could not come to a conclusive diagnosis. They eventually referred me to an immunologist who could not diagnose me and advised I take large doses of antihistamine, instead of the steroids I had been taking to manage the pain. The antihistamines worked and I was cured! I recently had a relapse and went to Allergy Medical for testing while I was symptomatic to see if a trigger could be diagnosed. The allergist I saw there said the Medical Director of the practice, Dr Pete Smith, has an interest in strange immunological problems and advised me to see him. It took about two months to get an appointment but I saw him today and explained my symptoms and he straight away diagnosed erythromelalgia. I've never heard of it before but from what I've read and pictures I've seen tonight on the Internet, I think he's right.
Anyway, i hope this may be of some help to you and Chloe. i just wanted to pass on my story to you as Dr Smith is most definitely familiar with erythromelalgia. If you have any questions about my experience, please don't hesitate to get in touch.
I am sadden to read that someone so young is suffering so much pain but with also so much confusion and worry attached to it. I hope that with the visit to hospital and the new set of tests they are able to confirm the diagnosis and have a treatment that will help.
My thoughts and wishes are with you both.
There is always a SMILE
in your day,
you just need to find it!