11 yr old diagnosed at 7 weeks - What Doctor to go to?
 

Ok - 3 doctors who say my son has RSD. Accident happened on October 19, pain started getting worse a week later. Been downhill since then.

Have heard RSD is curabel for kids (and adults) if caught in first 12 weeks.

If location is not a problem or hospital - Which doctor is best for treating this and gets the best remission results?

Do not have time to go thru all the threads, my internet keeps going down at home which is frustrating - writing this at work. Family doctor says physical therapy and psychologist and says no cure.

Very scared mother over here. Every week he comes down with another symptom.

Please Help.:grouphug:

Crunchberry,
You have a PM

Hi there. Your psychologist has given you lousy advice. Basically, it's undisputed that in the first months of CRPS/RSD, sympathetic nerve blocks (SNB) make a HUGE difference. Here's a link to a .pdf file of the "Interventional Therapies" section Treatment Guidlines of the of the Reflex Sypathetic Distrophy Syndrome Association (RSDSA): http://www.rsds.org/3/clinical_guide...rventional.pdf

While we're at it, here's another .pdf file on Helping Children with CRPS Succeed at School: http://www.rsds.org/4/resources/pdf/...g_children.pdf

But that said, the most important thing right now is to find a good pain management specialist for the administration of SNBs immediately. I would look for a major university hospital in your area, if you can get an appointment quickly. Otherwise, find someone. (I just noticed from your thread yesterday that you already have an appointment with a pain mainagement doctor, so that's good.)

Good luck!

Mike

I would suggest that you also check into hyperbaric oxygen treatments as that is the one treatement that helped my daughter.

Best Wishes,

Jeanne

thank you
 

We are located near Cleveland Clinic and University Hospitals (Rainbow Babies and Childrens).

Seeing a Oediatric Nuerologist on Monday to verify or give us another diagnosis. RSD is not listed on his resume at all - but at least he is a PN that we can see NOW. Otherwise have to wait over a month which is too late.

Has anyone heard of RSD in the back? What else could it be if the doctors are wrong - any ideas?

The question is, can s/he do blocks. If not, keep the appointment if need be but continue the search. Having said that, the Cleveland Clinic has one of the finest RSD programs in the country. (You win.) I would call their Pain Management Department today to see what hoops you have to jump through in terms of referrals, etc.) Perhaps the doc you're seeing on Monday could get you in there.

Hi Crunchberry,

I'm sorry to hear that your son has RSD :hug:. I also suffer from RSD type 1 in my left leg and right arm, I developed it when I was 12 years old and am now 13. I know we have PM'd eachother so I wont go into that many details has i've already told you most of them - if you have any questions that you need answering, please let me know as I know how scary it is dealing with such an horrible condition at such a young age.

About what sort of Doctors to treat RSD, you would probably be better seeing a Pain Management Doctor as they often prescribe pain meds and things that can help. Neurologists don't seem to know that much about RSD so they usually refer you to another doctor (that's what i've found anyhow).

The most important thing is that you see a doctor who knows about RSD and is compassionate. The worse thing you can do is see a doctor who claims he/she knows about RSD when they actually don't as they can often make things worse. PT's are also good at treating RSD but again, you really need one who treats RSD and other chronic pain conditions.

If your son's doctor wants to do a nerve block, make sure he knows what he is doing and that he DOESN'T inject into your sons back and limbs that are affected.

I have heard that Cleavland do an inpatient PT program that can be useful sometimes so maybe that is something for you to look into. Also Dr Sherry in Philedelphia has good results - I have spoken to a lady who's 11 year old son had RSD in his stomach and Dr Sherry's program made his RSD go into remission!

I hope you find a suitable Doctor real soon and that your son gets to feeling better. The good thing for you is that if your son has RSD (and I really hope he doesn't), it was caught easily and he is also still a child.

Take care and if you need anything, me and my mum are here.

The best doctor (most knowledgeable) I have seen for RSD was Teresa Dews, part of Cleveland Clinic. She runs the Pain Managment dept. at Hillside Hospital in Gates Mills. She has worked with Dr. Stanton-Hicks, and still part of that pain management group. Stanton-Hicks treated my sister, and didn't give her much hope, and I did not get the impression he was very easy to talk to, so when I got RSD, I went to Hicks. A friend who lives in Gates Mills was engaged to a physician, who knew Dews, and said she had a great reputation... so I went to her. Also, it would have been months to get into Stanton-Hicks and Dews office had me in within 2 weeks. I was very impressed. I think Dr. Dews would be an excellent place to start. Tell the nurse when you call it's an RSD appointment and they will work you right in.

Unfortunately, my insurance no longer covers Dr. Dews, they would if she was at the main clinic. But now that she runs this satellite office, they won't. Every couple years, I go and pay myself, and she writes a protocol for my family doctor to follow. I have the greatest respect for her.

Dr. Dews could get your son started with blocks and meds while you search for a doctor who specializes in children. Also, she could treat him while you wait for an appointment with someone who works with kids. I would not be surprised if Dr. Dews would be able to help him herself though. She was very good.

I will PM you with her info.

Good evening,

Your son should be seeing a Pain Management doctor. He has the extra training in pain conditions and knows the different treatments for each. RSD is easier to put in to remission (there is no "CURE" just remission) if he gets spinal blocks and oral meds to get his brain to turn off the trigger that is causing the RSD. RSD is all in the brain and what the brain is doing is thinking that the part of the body that is effected is alway hurting or being traumatized in some way. Any other person that would like say stub a toe there brain would say ok send some signals down there and send it back and then turn that circuit off once the toe felt better over time. With RSD that never happens and is a never ending circuit for us. With Spinal blocks it is very help full in the begining to interrupt that circuit and the meds also in the block and usually takes a couple or soo to get the full effect of it and if your doc is aggressive with it. Also phyical therapy is highly suggested to keep the part effected by RSD moving, bc RSD is known to cause limbs to deform and not be moveable at all ! Not to scare you more.

I have RSD in my lower back which came from my RSD which started in my foot. It sucks and have good and bad days. I suggest if he has trouble wearing clothing on his back to get lidocaine patches , these numb the area and help with the clothing issues.

Any other questions please ask away. there are many good doctors at the clevlend clinic that are Pain management docs. Also some neurologists deal with RSD.

Good luck and give your boy a gental hug for us!!

Just to relay my experience.
My daughter was diagnosed at 13 after an injury to her knee. Fortunately, Dr. Shapiro and Kevin McHorse a physical therapist with Central Texas Pediatric Orthopedics in Austin, TX had experience in the dealing with RSD.
My daughter was given an intensive protocol of physical therapy and desensitization treatments that we followed meticulously for six weeks. It wasn't easy, but our mindset was that we had no other option than to follow this course of action.
If you have a moment please take a look at my daughters website:


Let me know if you have any questions. My prayer for you is a speedy recovery for your daughter.

Joe