Dearest Caraleigh,

My warmest welcome and most heartfelt sympathies go out to you. I am so sorry you had to come join us. It is heartbreaking when a child must suffer so. You will find good support here and many caring, understanding individuals. We have an active group on the RSD/CRPS forum, including some young patients and parents.

Hold on to hope. Dr. Michael Stanton-Hicks, a CRPS bigwig at Cleveland Clinic states 80% of people improve over time. Studies indicate Children have a higher rate of remission than adults. This disease is a monster but it is not the death sentence some places on the internet would have you believe. You will have to be careful of where you get info.

BTW, Do they have an idea what caused this? It does sometimes arise without injury but it is less common. It sounds like he is getting adequate workup and that is positive. CRPS is a diagnosis of exclusion and all treatment possibilities should be exhausted. FYI, ice is not recommended with CRPS though I personally have found cool packs helpful. I either use gel packs from the fridge NOT freezer or frozen peas which aren't really that cold with a barrier.

Many of us recommend the following video by Dr. Pradeep Chopra. It is two hours of info and treatment dos and don'ts from a highly regarded, compassionate specialist. I believe he dedicates some time on it to pediatrics. "CRPS Diagnosis and Management."

http://youtube.com/watch?v=s3LKhOZ8mAM

Please come see us and let us know how your son is doing. Progress takes time and often comes slower than anyone wants but it DOES come. Be kind to yourself and know that we are rooting for your family.
You are in my thoughts and prayers.