Hi again everyone

Wow...Iīm truely overwhelmed by the response to my letter, itīs a new feeling to be understood in all this. Thank you all for giving all of your information and sharing your stories, I have been reading a lot. Its not because I dont appreciate since the long time since, but its takes me quite a while to write this. It might get shorter and easyer in time!
By the way, Oliver is just turned 13. At the moment he is not interested in talking with others on the net like this, mayby he will change his mind in time. Sad, because he is a lot alone and with his mother, because he is not in scool!! (not the way it is supossed to be)

I have been researching myself, quite a lot, i think, and I have also found the swedish hospital and I can see that it seams to be a highly recomended hospital when it comes to RSD in children. I have looked at the possibilities in the medcare system and itīs not an option to be covered in another country at the moment, Iīm affraid. We can go to a bigger hospital but it requires a reference from a doctor but there is a waiting time and we have to start all over. Oliver was admitted for 7 weeks to begin with and it was very hard for him and to the whole family (Oliver has got a 8 year old sister). What I want the most, is Oliver to be seen by the pain management doctor and I know there are quite good ones at the hospital, where we are seeing the ped.neuro.doc., but the ped. Doc. is the one to make the reference (the right word??) to the pain specialist we cant just go see him on our own. I think maybe you can? The ped. Doc. Is the one who diagnosed RSD in Olivers leg but thinks that the back pain is all in his head, I don,t think that he is in the believe that you can have RSD in the back. At the moment we are trying to work with the psycoligist, together trying to get the ped.neur.doc. To reconcider his oppinion to get the reference, but again it is weeks ago I last heard from them again itīs so frustraiting to have to keep on calling and calling with no result. The time goes by and itīs not getting easyer. This is why I try to get all the information that I need too convice the doctor. I have been writing a very long letter to the doctor, wich I hope will have some effect.
Oliver has not gotten any other treatment than Lyrica and then physical therapy and it was hard to watch to begin with because at first he was in so much pain using his leg and he was crying in pain just putting his foot down, but I am sure you all can know how he has been feeling.
By the way we have nottised Oliver several times complaining of dizzines when standing up too quickly. He is allways complaining about feeling hot, he is never cold. I have been taking his temperature a couple of times when its the worse and his cheeks looks like they are burning and he has been running a fever at almost 38 C (dont know in F) with no other symptoms (like flu and other stuff) With that temperature you will normally feel quite sick, but not Oliver, he is just felling hot. Does any of you have theese symptoms. Is it a nervesystemdysfunktion and if it is why does it show up now?? I know that the Lyrica can make you feel hot, but actually make your temperature to rise??
Thank you so much all for taking your time with this.

Gitte – Olivers mum