Our story in short
Jed who was 10...is now 12..Sat in a chair...and then just could not get up...no pressure on his leg for months...no diagnosis on any tests...all normal...we went to this 80 year old pediatrician who had heard of the disease ...called it Sudeck...which is CRPS original name and we fought to find someone who could help Jed...we searched worldwide. This doc had never seen it before but for some unknown reason he knew that kids have a good prognosis...so we kept fighting while Jed became more and more debilitated...eventually he could not get out of bed...we had a diagnosis...but no one knew where or how to treat... Eventually someone said go to Red Cross...our local government children's hospital...and lo and behold they have a pain clinic and had seen CRPS and treated the kids...Jed was no 10 treated in Africa... They use ketamine infusion... A slow infusion...Gabapentin, clonidine tablets...Jed was on 32 tabs a day for almost a year...and intense therapies while he was an inpatient undergoing the ketamine... The reason they can perform the miracles they do is because they use a holistic, empathetic approach...they have managed to get into the mind of each child and family and treat each family as an individual...this holistic approach plus the meds...and ketamine...seems to work...as the family and patient all work together to positively fight the CRPS as they cannot let CRPS win...and they don't let it win as the kid and family conquer the CRPS with the 'help' of the medication...it has to be an entirely positive approach...no negativity...and everyone must be one unit as they fight CRPS...trust of the clinic and their protocol is very important as one hands over our children to mature and fight the disease as only they can make that decision to conquer it with the support of all around them.
. When a mother from another country says ..but they have had ketamine and it does not work...I say..you can not just habe ketamine...you have to have the whole team / support working as one at the same time to bring our kids back.... That is the miracle.....not the meds