Reflex Sympathetic Dystrophy (RSD)

[loveferrets]

My 14 year old has been diagnosed with RSD She hit her left second toe on one of our dining chairs and fractured her toe, this was on a Friday night in December. Her pain seemed more like a broken toe then just a stubbed toe, so on Monday I called her doctor and asked for orders to have her foot X-rayed. I called the office two days later to find out the results. They said she just stowed her toe. I took her back to the office on Friday, because the pain she was feeling was still really bad, and I felt that maybe the X-rays didn't show the break at first. Her doctor looked at her foot, didn't even touch it, and said yep, she stowed her foot. I fired him. Meanwhile, I was looking for something to help with her foot pain. I stopped at the local medical supply store to see if they had a boot she could put on her foot. The woman tried the smallest one they had, but it was still to big. We started talking about what had happened, and about the pain she was in, how sensitive her foot was to the touch, and how cold her foot was then the other one. The woman suggested that we go to the emergency room. So we did. (A different hospital from the first one that we got the X-ray from the first time) This emergency room found a small fracture on her toe. So they referred us to an Orthopedic. When we got there, my daughter was wearing 5 pairs of fluffy socks on her left foot, and one fluffy sock on the other one. When the nurse took of the socks and felt the temperature difference of the two feet. (The 5 pairs of sock foot was at least 1-2 degrees colder then the other one with just one sock, and it's the middle of December.) We were so lucky to have found an Orthopedic doctor that actually knew what she has, RSD. He referred us to a pain management doctor, who has put her on Lidoderm patches and Neurontin along with soaking in as hot as she can handle water, and exercises she does with her foot. So far this has worked. Her RSD is gone for good, but when it comes back, we repeat the same instructions, and it seems to help her.

My question (finally) is has anyone ever heard of someone with RSD also getting Raynaud's disease? The reason I'm asking is that, this last Easter, our community had a flashlight Easter egg hunt for the teenagers in one of their animal refuge learning centers (a barn). We brought along one of her few true friends, and they both had a great time, other then being cold. (We live in PA) So as soon as they emptied their plastic eggs into their bags and returned the plastic eggs for next year, they wanted to go home. So, we did. We dropped off her friend first, and as soon as her friend was inside her house door, my daughter started crying so bad, that it scared me to death. I couldn't figure out what could have possible of happened in the 1-2 minutes it took her friend to get to her door. My daughter said her hands and feet were hurting really bad, really bad. We drove home. I had to carry her in the house because she couldn't walk anymore. I took of her shoes and socks, and her feet along with her hands were blue blue. I carried her upstairs to her bathroom and put her in the bathtub with some hand towels to cover her feet and hands with. We warmed the bathtub up slowly so that we didn't damage her skin. Her feet and hands turned from blue, to white, to bright red. And of course, her RSD started up again in her feet and legs. Is this normal for RSD and coldness, or could this be Raynaud's disease too? I asked her pain management doctor, and he didn't seem to concerned about it, he just wanted her to keep doing her normal routine, and said that once the pain was gone, she could go back to her regular exercises.

Here is another question, everytime she does her normal (to her, because she is very active) exercises, her RSD acts up again. Sometimes it only takes a walk in the mall to activate it. She was on a gymnastics team when we lived in Florida, but we stopped after she hyperextended her elbows, and we found out we were going to move. She still wanted to get back into gymnastics, but I'm afraid she's going to make her RSD worse. Just resently she was practicing some of her stuff on our trampoline, and she kicked her own arm. We thought she might have injured or fractured it because of the pain she was having. The doctor said it looked like she just bruised the muscles. We waited about two weeks, in which she was ok for a bit, and then it hit. The pain of the century. I took her back and insisted on an X-ray. No fracture or break... that means it's RSD. The other symptoms started up afterward... coldness, tightness, severe pain, sensitivity to touch and loud noise, excessive sweating, color changes and temperture changes.

[AuntSuzyMouse]

you can have RSD and reynauds plus a multi-list of other ailments. this is what has happened to me. Feel free in contacting me directly should you wish any further information. [moderator note: e-mail address has been removed]

[loveferrets]

Thank you for your response. I will probably contact you more, after my daughters appointment at Hershey's Childrens Medical Center in September. The Raynaud's disease hasn't been official diagnosed as yet. It's her pain management doctors opinion that she may have this too. There were only two places that will see someone so young, and both are a distance away from us, and neither had appointments until September. So, I took the one with the closest appt date. The other one wasn't until the end of September. Hopefully, we can figure this out and get her back on track with school. This past school year really threw her for a loop, due to missing so many days to doctor appointments and bad days with sensitivity and pain in her legs. I'm sure you know what she's going through. It's a new experience and a way of life. It has really changed her attitude and how she sees others with disabilities and differences. She has lost a few friends, because they feel she's "faking" it, and their jealous because she's on crutches (off and on), and she gets a ride to and from school on the days she's on crutches, and she gets to go down the hallway to her locker before anyone else in the morning, because she's on crutches or because I'm with her carrying her book bag. On the positive side, and we like to think positive, she's found her true friends. They help her when she needs help at lunch, or with opening the heavy doors in the hallways, and they are just there. They really haven't changed the way they treat her.

Well, thank you again for your response. I will pray for you too.

Sincerely,

Shari

[AuntSuzyMouse]

Shari - Dr. Tony Fitzpatrick at Univ. S. FL in Tampa works specifically with children with rsd and has been very successful getting them back on track into remission and maintaining their pain and lifestyle. You may want to contact him - he is very, very good. Remember your daughter is entitled to education 24/7 - she is eligible for at home teaching when she is unable to attend, the school needs to accommodate to her needs - with teachers, elevators, classroom access, etc. That's the law. You can work directly with your child study team to arrange her in school and at home schooling. Keep in touch! Suzy - also, please do your homework to make sure you truly have doctors who understand what RSD really is. It is NOT in your daughter's head - that's a known fact.