Hello and welcome to NeuroTalk. I am SO sorry to hear that your daughter also has RSD, especially at such a young age. Poor child

I have had RSD since I was young also (12 years old). It started in my left leg and then spread to my right arm after an injury. I spent 13 months in a wheelchair after a nerve block caused me to lose all co-ordination. No medications worked for me except oral Ketamine which gives me minimal relief. I have tried intensive PT and it learnt me to walk again but I didn't lose the pain. I am now 20 years old.

Like your daughter, I was also home schooled. My school wasn't disabled friendly and wouldn't let me go even on good pain days as I was a 'health and safety hazard'. It was horrible and a very lonely time, especially when my 'friends' were out and about doing normal things and I couldn't. I really feel for your daughter.

I wanted to say that no matter how hard it is, do not give up hope. I'm by no means cured, I still have severe pain on a daily basis BUT I am in university studying to be a Psychologist. Its hard but thankfully my university lecturers are understanding and let me work from home if i'm ill. Your daughter will get there. I'm not sure where your daughter has RSD but if it affects her hands, one programme that might help her is the Dragon software. It really helped me as you talk to the computer rather than having to type.

Its been proven that the younger you develop RSD, the more chance you have of going into remission so that works in your daughters favour. Tell her to keep up with the PT and moving the affected limb(s) as much as possible. I KNOW it hurts but I was always told 'use it or lose it'. Of course, there is also a fine line between doing too much and doing too little and its hard to find the right balance.

I'm in the UK so not sure what hospitals in the US are best for RSD. I know some do inpatient PT services which may be something to look into. I'm currently waiting to hear back from one in the UK that advices you on how to manage RSD round every day life... it doesn't 'cure' things but can help.

I know RSD affects the whole family and I really admire you for searching to get the best help. My mum was great with that also and without her help and support I wouldn't be where I am now and dread to think how I would have coped. I'm sure your daughter really appreciates everything you are doing for her. Don't forget to look after yourself too though.

If you ever need anyone to talk to who understands what its like having RSD at a young age, feel free to message me. I'm also happy to let you speak to my mum if you like in terms of being a carer.

I hope things look up for your daughter and wish you all the best.