We go on Thursday to the children pain Center here in Atlanta. We are seing a Claudia (cant remember her last name) . I am still trying to figure out why I would need to see a rheumatologist, since my pediatrician mentioned one. I would think a child Neuro might be better. We still have PT today.

Based on my experience, sometimes doctors want referral to rheumatologists to rule out rheumatological issues that can present much like RSD/CRPS, and it's really only a matter of drawing a few tubes of blood, from which they can order literally hundreds of tests.

And for what it's worth, I've seen two rheumatologists since this started, and both were more compassionate than 65% of the neurologists I've run across. Just be careful, if you go there, concerning any suggestions of so-called "anti-TNF[alpha]" drugs. A lot of them work very well and may be able to successfully knock out the illness in a fresh (acute) case; you just want to carefully inquire as to whether there are any special warnings assciated with the drugs, including any unusual impact in kids.

Very happy that you are going to the Children's Pain Center this week. Good move!

Mike

Thank you Marlene for this post, as a parent of a child with RSD, I would never question her pain. I relish the days that she can maneuver through a fun moment without crying in pain. I also pray that she gets sleep in the night, not waiting for her pass out from lack of sleep due to pain. I think this mom needs to take a step back and look at the big picture. I am also upset by the fact that the one doctor said they are categorizing most pain as RSD. I have never heard this. It took six years for the doctors to believe my childs pain, she had to have swelling and discoloration as well as being hospitalized for pain management. I NEVER thought her pain wasn't real and she was 10 years old at the time her pain began. I have gone to the ends of the earth to help my childs pain. It took me a while to post this reply, I was very upset it made me cry for this child.

I don't think a 10 year old could make up this kind of pain, so mom, remember YOU are her only advocate, relish the moments that she can still laugh, sleep and have fun, because they are few and far between with this horrible disease.

I will be praying for you and your daughter.

Sandy

Keep with Pediatric doctors, Pediatrics are a completely different field. Be happy that she was diagnosed this early in the game, Childrens hopsital was a great move, stay with them, they will guide you in the right direction. Everyone has an opinion. Remember she is a baby, she is in pain and you are her mommy, so believe her, listen to her, and let her know that you are on her side. Your daughter has a great chance to go into full remission. Remember I posted for you the contact information for the Cleveland Clinics Pain Rehabilitation program. You should really consider it...It is a holistic approach to pain management. She sounds like a perfect candidate for the program. Remember BELIEVE HER...

Sandy

Sandy,
Thanks for your comments, they're priceless!

I want to add,
about the girl being outside and playing, putting her foot in the leaves...
This is all about "testing", AND MORE IMPORTANTLY Having Fun!
This is what children want to do!
Heck, I would like to, as well!

I remember, 25-20-15-10 years ago, playing with my children, while I had RSD, and TOS.
Oh, I knew that Private detectives were making movies. I didn't give a darn.
I WANTED to have some fun With my Children! (I raised them alone).
And, if I hadto take some breakthrough meds, or get in the whirlpool, that's what I did.
I can't move like that any more. It's been about 26 years now.
(Now, I'm going to have to start some exercise that's NOT FUN)

My point is, that it's absolutely naturally human, for this child to want to have fun! Fun often creates adrenaline, Adrenaline often blocks pain.
Fun = less pain.
But, wait until later!

You've got to let her get "used to" her body, the way it will become.
The more she moves, the better, the more natural, and, let her crash, when she must! Don't, ever say to her, well since you played, now you've got to pay. Encourage her! Encourage her to have fun!
Take care of her when she''s down!

Get her used to this cycle of care, so that later in life, it's what she comes to expect, from whoever her partner is.
These are all ramifications of chronic pain.

She can be a fun, happy, well adjusted person,
or,
become the pain. Don't let the pain become her!

I know that you'll do a swell job!
Don't sweat it, be natural.
By being here, we all know that you're a very loving concerned Mom!

Our prayers for you, your daughter, and your family!


Pete

Sdlevitt,

As Pete and Sandy said, it's a great sign that your daughter is out having fun with her friends and playing like a 'normal' child should!!!!

I've had RSD for 2 and a half years now. For the first 2 years or so, I didn't feel like doing anything because of the pain and mobility issues that I have (I was in a wheelchair) so I didn't go anywhere. I just sat in bed all the time. I lost ALL of my friends from School because I was unable to go and they didn't understand RSD at all which was the hardest thing i've ever had to deal with. I still spend many days now crying about that but if nothing else, since having this illness, I have learnt who my true friends are and am better off for it. It's took me until now to try and go out again. I still have LOTS of pain but have realised that lifes too short, you need to go out and have fun!! My grandad passed away last year and has silly as that sounds, I think that was a big turning point for me - it made me want to try and do him proud and work through the pain as much as I can. He was always a very happy person and I knew that he wouldn't want my life to be ruined any more than it already has been because of this RSD. Yes, it's extremely painful to go out and do 'normal' things and I can't do a lot of things my friends can but as Pete said, some things are worth the pain!!!! I pay for it a LOT afterwards usually but i'd sooner have that then ruin my life altogether.

As Sandy and Pete said, encourage your daughter to go out as much as possible. If she can go out now, the lest chance she will have of losing any friendships, having problems fitting in with school etc like so many of us have.

Please, listen to your daughter when she is telling you what is wrong!! She needs you to believe her right now as she's dealing with all of this. I honestly don't know what i'd do without my mum, if it wasn't for her, I would have never have gone to the intense Physical Therapy Program and got back walking. She's never left my side the whole time that I have had RSD and it's helped so much more than you'd believe!! We NEED people to understand and believe us ... it can get very depressing dealing with this awful condition!! You know your daughter better than anyone else and as everyone else said, I don't think there's any way she would be able to fake RSD!!! IF however, you do think she may be, get a second opinion and see what they say and then get her to see a Psychologist etc - don't give up on her no matter what the issues are!!!!

I wish you both the best of luck with your appt and hope you get the help you need.

Alison

Well said sweetheart...

Sandy

Good luck Thursday! Let us know how it went.

I know it's a horrible diagnosis, but don't lose courage and don't lose hope. There's so much experience on this forum, use that to your advantage, and please know that we mean well and only want to help. I know in your heart you'd prefer a different diagnosis to RSD, something that can be fixed and quickly, but you need to deal with this if it is RSD and other things have definitely been ruled out. RSD is hard on an adult, but it's even harder on a child. Just go the necessary medical route and tune into the forums and other resources. Most of all, stand by your daughter and don't give up on her!!!

Maybe you could check out some support groups:
http://www.rsds.org
http://www.rsdhope.org

Hi Scared Mom with daughter in pain,
I can't imagine what all your are going thru, along with your daughter. Please know you both are in our thoughts and prayers.
It sounds like you want more confirmation for RSD. My diagnostic Ortho Hand Doc I saw in Oregon, sent me to Nuclear Med Dept at the hospital, They use dyes and put your hand (or limb) in a x-ray type machine and the dye shows the RSD spots. Confirmed Then when I flew back home-Phoenix- I went to a good Neurologist who gave me tests for RSD- Some king of machine- He confirmed rsd. Then sent me to hand surgeon-who also had physical therapy- hand Dr. had a student in the room and examined my hand and confirmed rsd and showed student why he diagnosed me. Then his physcial therapy people knew rsd and had treated many people, were in charge of my care and rehab.. They are the ones who had me do it dailey at home in the plastic bowls.
I can say from experience, seeing a psychiatrist who is a neurologist and pharmacologist has been the best for me. I had a very painful and difficult time accepting rsd. I have been seeing him for 5-6 years now. I just switched from once a month to once every 2 months-economy. He doesn't take insurance. He's the one who built 2 clinics with HBOT in them, I'm going to go thru next year. Even though I was 55 at the time I started seeing him-I was water skiing, snow skiing, playing tennis 5 days a week, aerobics, traveling 3-4 big trips a year out of the country, entertained friends a lot, shopped a lot etc. My life was crushed by a very painful disorder. This Dr. helped me get thru it as he knew the pain of rsd.
My parents died when I was 25 and 32 and I saw a psychologist- who was exceptional great for that grief in my life. better than a psychiatrist would be, well maybe not my current psychiatrist- he has experienced close family death.
You are at a GREAT time for remission and great improvement for your daughter. I personally would be heading to the Cleveland Clinic. They often have places from family to stay. I respect SandyS and what she had to say about the clinic and her daughter, Lindsey.
My heart hurts for you, the anxiety and questions you have running thru your mind must be huge. Atlanta is huge, I've been there..I hope you find knowledgable RSD Dr. !!! My mother had cancer and Oregon Drs. said they couldn't help her any more-We flew to Mexico then flew to MD Anderson Cancer Hospital in Houston, TX. I know the desperate feeling and anxiety that fills us when we feel helpless. I was 25...she was 46. Very sad.
Please know we are all thinking of you. I'll call my friends who is head of Nuclear Med Dept at major hospital on west coast today and see if he has any thoughts. He and his wife come and visit everyother year here for 2 weeks. I'll e-mail you with any information. He does the kind of tests that nailed down rsd for me.
Please know you can write here anytime and get ecouragement. Some are straight forward, as they know the criticalness of timing, and don't want you and your daughter to pass the 'window of remission' I remember my two remissions and am so grateful for them. One of them was during my daughters wedding and taking them to Maui for their 1st anniversary. Then another remission the 4 of us went to Italy and France for 4 weeks. Then it came back out of the blue.
I know you are scared-we all share your fears and HOPE. Please let us know how you both are doing. Thans, your friend, loretta with soft hugs

HI SDLevitt,

I wanted to wish you luck tomorrow with your daughter at the pain clinic. First I want to apologize if I seemed a little harsh the other day. I never meant to come across that way. My daughter has been going through a lot lately...and sometimes it takes it toll on you when you don't know how to help them. So I completely understand your questioning her as to whether the pain is real or not. My daughter is going through Ketamine Infusions this week and it is difficult. I am happy that your daughter was diagnosed early and she has such a great chance to go into remission very early and very young. Get a second opinion and a third if it will help you to understand how to cope with this disease. Again, I am praying for you and your daughter. Please feel free to PM me if you have any questions regarding pediatric care for RSD. My love to you and your family.

Sandy