[crunchberry]

Any parents out there with stories on how their kids got RSD and what did they do?

Very new to this, the more my husband and I read about this wonderful disease, the more we are worried that this is what our 11 yr old son has. Have 5 doctors who are clueless on why his pain is so severe and now waiting to see a nuerologist and pain managments specialist.

One nuerologist at a party mentioned that his symptoms sounded like RSD and we should look into it. Then found it on a note from his pediatric Orthopedic doctor to consult a ped nuerologist - and temp diagnosis was RSD.

So have been looking up as much information as we can find. Luckily, he does not have some of the symptoms. Unfortunately, he does have some of the symptoms. Seems like every week though, he gets another symptom. Past week its the pain is turing into burning. Oh - the pain is also constant - never ending.

So would love to hear from other parents - their stories and their ideas.

Happy Holidays
Crunch

[crunchberry]

Yesterday and today bad pain days. Today he complained of being bitterly cold and had me put 4 blankets on him.

Went to his family doctor today and after seeing him and going through everything, told us he has RSD though he will wait for the pediatric pediatrician to "diagnose" him. Seems like doctors now a days refuse to diagnose due to lawsuits. ughhhh......

He told us to get him to physical therapy, to a psychologist,wean him off the pain medicine and get him back to school. Much easier said than done - but we are going to do our best.

He asked me at dinner if this means the pain might last past Christmas. I told him I honestly don't know. Did not have the heart to tell him about this disease - specially to an 11 yr old.

[loretta]

Hi Crunch,

You are very fortunate to find this group that is very caring with a lot of experience.
I'm so sorry your son is going thru this. I'm a mother, and it's me that has RSD/ 12 years now fulll body. I wasn't diagnosed for 4 years. So, you are in a great place getting an early diagnosis.

Yes, I also have heard of great facilities near you for children. There is a website called rsdrx.com puzzles lots of questions and answers. Early treatment for your son, is the best possible chance for remission. I don't agree with the idea of weaning off of pain medicine and getting back to school. Priority now is to get treatment, and yes, Physical therapy is very important,. Sleep is important, keeping calm and relaxed very important.Will the school work with you in homework at home, perhaps picking it up for him. The main thing is not getting additional injuries. Pain meds, anti-anxiety meds, help cope with the pain, and getting rest. School can catch up later, missing this important window of opportunity for remission won't wait. You never want that time to pass you up.

I've heard good things about the Cleveland Clinic and f michael mentioned.Definetly, get experienced anethesiologist for nerve block, should you decide to go that direction. Massage therapy and physical therapy helped me incredibly to get the use of both of my arms back. Had frozen shoulder in one and then the other. Then to one hand, had didn't recover.

Let us know how your son is doing after seeing a specialist in RSD. We really care. It hurts us adults especially to see young people get this. They have so much ahead of them that is new and exciting. To get that cut short is just a tragedy. Your in a great position for that not to happen.

Take care, Loretta