Michelle and Anna

     My daughter, Anna, broke her right ankle. The weird part was it was a year earlier, 2001. Almost 1 year to the day later, she severally sprained the same ankle and symptoms of RSD appeared almost immediately. No one could figure out why this time it was so much worse and "cold". Her foot was like frozen hamburger. Because they thought it was a bad sprain I was told over and over again, it will just take time to heal. Her foot and up her calf didn't look like a sprain. It mottled, was frozen cold almost all the time and we could actually watch it turn from an ash color to bright red to deep purple to black over the course of 5 minutes. THIS WAS NOT NORMAL for a sprain no matter how bad it was. The local doctors were tired of seeing me and taking my calls and sent us to PT. Her therapist was concerned and perplexed over this and mentioned it looked like something he had only read about, RSD. I started looking on the Internet for more information. The information I we found was not hopeful or positive. I prayed it isn't RSD but Anna's symptoms are looking pretty classic. Anna's pain was moderate at that time but became increasingly worse with use. 

    Approximately 3 weeks into this, Anna would have moments where her ankle/leg would seem perfectly fine. For no apparent reason, poof, the cold, pain and discoloration would start again. My breaking point was when the Middle School Dean of Students took her crutches away from her (even though she had a doctor's note to use them) stating Anna was "faking" it. To defend the Dean of Students JUST a bit, Anna went from a straight A student to a C student in a month. She started flunking exams, not paying attention in class and was rather depressed. So the Dean of Students thought it was a "teen" thing. To make matters worse, the school NEVER contacted me on any of this. At that point is when I started pressuring the doctors. I had Anna at the doctor so much, I got the feeling they were putting me off as an over protective mother that needed to calm down. The day the crutches were taken away from Anna at school she had a bad flair. Anna had PT after school that day. I thought finally the PT would be able to see a "bad" time. Anna sat with her shoe and sock off, dangling off the end of the exam table. Over the course of 30 minutes we watched her foot/leg change from deep purple/black to bright red to ash grey, never changing temperature. Anna's PT called all the other PT's over to watch while he made phone calls. No one would see us. I have never prayed so much in my life. It was 5pm on Friday; the on call Doc's said we should wait to see out regular Doctor on Monday. That was the turning point. The PT said Go to the ER and don't leave until they give you a diagnosis. I was scared and ready for the battle of my life, my child's life. 

     At the hospital we came across a very compassionate, humorous physician's assistant who ran a ton of tests. He did Doppler's and x-rays and MRI's. He thought it might have been RSD. I told him Anna's PT thought it may have been that also. To confirm the diagnosis he had the Doctor come in to verify. We were blown off. The Doctor said this is severe ankle sprain and go home. The PA made some more calls to neurologist, physiologists and Doctors specializing in adolescent growth, in the middle of the night, against the on call Doctors orders. NO one would come in to the hospital to see us. Some did suspect RSD but didn't know enough about it and told the PA to send us on our way. Due to insurance coverage, all he could do at that point was send us off with a referral and kind words. I feel that night and PA saved my daughters life. The PA told me to be VERY persistent and not just "take" what ANY doctor told us. He said if it is RSD, it is very hard to diagnose. Doctors in our area don't see it so they don't know about it and don't know how to deal with it. He said we needed to get to Children's Hospital of Wisconsin - Milwaukee or Children's' Hospital of Wisconsin-Madison and FAST. These facilities were going to give us the best luck at Doctors knowing how to help us and treat Anna. He kept reminding me to push the Doctors and "the insurance system". 

     I called Anna's family doctor the next business day, explaining what happened and asking that we be sent to Milwaukee or Madison. She said we had to follow the insurance rules and needed to send us to a local neurologist. I kept throwing the letters RSD out to every medical person I talked to. The neurologist couldn't see us for months. I started yelling at the poor receptionist saying, do you know what RSD is? Do you know what it does to someone? Do you realize my daughter could be DEAD before you could see her?! We got into the neurologist 2 days later. After a very brief appointment, he agreed this was beyond anything he was comfortable treating and finally a referral to Children's Hospital of Wisconsin was given. We had to go back to the family doctor again for that referral to be handled. I called them almost every hour wanting to know when we could go down there. The appointment secretary and I had a few run ins over this. She actually asked me to stop calling she had other work to do and was doing her best. Again I said, do you have any idea what RSD is? What it is doing to my daughter?! Life became hell. The fear of the unknown and the horrible things I had found on the Internet made a "normal" life seem like a dream. I was bound and determined to NOT let this disease, whatever it was WIN! 

     I contacted the head of my HR department, in anticipation of needing to take a leave of absence. I was preparing to take off 1, 2, 3 years to spend that last bit of time with her, enjoying life as much as we could. I am a single parent, I didn't have a clue how we would manage but that wasn't at the top of my priorities yet. Once I explained what I did know about RSD to the head of HR and she asked if she could make some calls on our behalf. I said a tearful yes and was very grateful. Later that day I received a call from our liaison at Touchpoint, my insurance carrier. She asked me some general questions and asked if the Head of the Medical Department at Touchpoint could call me personally. I didn't know what to think at this point. The next day, I had a voice mail from Touchpoint asking specific questions as to whom Anna had seen and her symptoms. I left a return voice mail for him with the information he requested. Before the end of the next day I was paged at work by Children's Hospital of Wisconsin. They said they didn't know whom I knew, but welcome and when could we come in. We were on our way to Milwaukee 4 days later. The staff at Children's Hospital of Wisconsin were WONDERFUL!!! 

     Anna and I were scared to death not knowing what to expect. The doctor did many more tests. In one test he barely touches Anna with a cotton swab. She screamed in pain saying it felt like hot searing pokers were being jammed into her. At the end of the exam it was confirmed that Anna has RSD and we were being sent to the pain clinic at Children's Hospital. Before leaving Anna and I were given oversized business cards with the Doctors phone numbers and his staffs phone numbers. We were also given an after hours number incase we had problems and needed to reach them. The following week we were at the Pain Clinic. The staffs, at the pain clinic, Jane B. Pettit Pain and Palliative Care Center, at Children's Hospital of Wisconsin are angels!!! We spent the majority of a day there. A team of Doctors, Physical Therapists, Occupational Therapists, Nurses and Neurologists evaluated Anna. Children's Hospital of Wisconsin treats RSD as a family disease and with a ton of humor. In fact they say RSD stands for, Really Stupid Disease. =) They explained what has been happening with Anna's body and why. They have also explained what is known about RSD and what isn't known. They gave us hope saying that 98% of their patients, children, are in remission with NO reoccurring symptoms severe enough to require medical attention. We were told this is Anna's disease. She is old enough to be in control of her body. If she wanted to be off crutches SHE had to do the work to get off of them. She also was going to experience the pain. She knows her limitations. I was told my job was to be Mom. I was to make sure she had meds and that she got to the PT appointments or other Doctor appointments and to love and support her. It was not up to me to make sure she did her exercise or her homework or anything else on that order. For the first time in several months we had hope. Anna felt in control of her disease. Anna and I left a Children's Hospital of Wisconsin with so much. A new PT regime was faxed to Anna's PT and primary care physician; conference calls were set up with all hands on medical personal. Anna was taught a new med routine and how to do relaxation therapy. We were given unending support and guidance. I have a phone number I can call day or night with questions. 

    We haven't had to go back to Children's Hospital of Wisconsin in some time now. Anna has control of her body and has been in remission for about three (3) years now. She has had some minor flare ups but we know how to treat it. This past school year Anna played Volleyball and basketball without pain! A few months ago she wore high heels to her first homecoming high school dance! This time I cried tears of joy. There isn't a day that goes by or a bump or a bang that doesn't scare us. With each passing day it is a bit less and less.

© 2005 Michelle and Anna

Overcoming the Pain: Page 1
Oshkosh Northwestern - Oshkosh, WI, USA

Overcoming the Pain: Page 2
Oshkosh Northwestern - Oshkosh, WI, USA

Update May 2007: Anna is now 17 and a junior at our local high school. I would call her in remission. She still takes meds when needed, for example when stress is high or she has an injury as a precaution. Anna plays golf on the varsity team and looking at colleges to attend in the fall of 2008. Anna has had ups and downs, injuries and two severe bee stings a day apart. We have found out she is allergic to bees. =) Anna has never given up hope for another day. Some days have been a challenge and pain filled. Those days are easy to deal with in comparison to the medical community at times. Many ER visits have resulted in frustration with staff not understanding or wanting to understand RSD/ CRPS. This is not an absolute. As Anna has occasion to visit we try to educate staff. Life for Anna is now pretty typical for a 17 year old. She has great days and bad days. I hope relief for all RSD suffers soon!

Update July 2008: Anna is now 18 almost 19 years old. She has graduated high school with honors from our local high school. I would call her still in remission. Anna encountered some challanges this year. She faced the reality that she has a whole life ahead of her. As Anna applied for colleges the possibilities of a future became reality. Anna has been accepted to a state college in Biology/ Biochemistry working towards her pre-med certificate. Anna is thrilled to have an oppertunity to start doing research as a freshman and making a difference in the world. We hope relief for all RSD suffers!

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