Over the next week or so we had the x rays redone because a friend of ours who is a vet said she was certain Mandy had at least a bone chip, if not a break. More negative x-rays.
As time dragged on Mandy's pain increased. We asked the pediatrician if she would refer us to an orthopedic surgeon to see if he had any idea why her pain level kept going up and the swelling got worse instead of better. Off we went and the OS ordered an MRI which showed the smallest bone chip. The OS put Mandy in a removable cast and said she should stay off it as much as possible. More Advil.
In 4 weeks we went back with a now very pale Mandy who was not sleeping because of the pain and getting very depressed. Her friends all thought she was faking it because her complaints didn't equal her injury. She was having trouble concentrating or remembering simple things. The OS suggested a permanent cast since Mandy had totally eaten up
the inside of the removable cast, because her foot was sweating like nobody's business! She cried and cried but relented. The OS said the top of the foot is a very hard place to heal. The swelling was getting worse and worse and Mandy's foot was now getting "blotchy". More Advil for the pain and an antidepressant was ordered.
Mandy's regular pediatrician was on maternity leave so we saw an associate of hers to try and find some pain relief for Mandy. She was crying daily, couldn't sleep and was experiencing huge changes in her body temperature and was getting more and more depressed, even with the antidepressant. She was staying inside all day, every day per doctors orders, missing the entire summer with no apparent healing of her left foot. The associate doctor (and I use this term quite liberally) yelled at Mandy and said she should 'quit playing games and let the foot heal'. Rather than go to jail for beating up a doctor (which is what I really wanted to do), I told him to leave the examination room and we left.
We went back to the OS and he suggested no weight bearing at all and 24/7 elevation. He said it could take up to 2 years for this to heal. Unacceptable as this seemed, we felt we had no alternative. Mandy was ordered a wheel chair and had to take the handicap bus to school. Still no playing outside. The doctor wanted us to get her an electric chair because
Mandy was losing muscle mass and was getting weaker by the day.
We declined fearing it was a signal of defeat. He did increase her antidepressants and said to use Tylenol along with the Advil. Mandy was taking 4-6 Advil every 4 hours around the clock and 4 Tylenol in the middle of the Advil dose with NO RELIEF.
Well, after 2 1/2 years and nothing but increased pain, swelling and color changes, Mandy bumped her right hand every so slightly and the exact same thing started happening to her hand. Within a matter of weeks her hand was starting to claw and she had no strength at all. Finally, the OS suggested blood work because I had lupus and perhaps there was something along those lines happening to Mandy. Her Auto Nuclear Antibody test (ANA) was positive so off we went to a Rheumatologist from our children's hospital. (Turned out it was positive because she had had mono earlier that year, not because she had lupus)
This wonderful, sweet, compassionate doctor took 20 minutes examining Mandy and diagnosed her right there. He called it Reflex Neurovascular Dystrophy. He said it was a disease that has no cure but could be helped by physical, occupational and aqua therapy. He told us it was very rare.
He sent Mandy to a physical therapist, a psychologist, and an occupational therapist. PT started her with contrast baths (soaking in ice, then warmth, then ice, then warmth) and Mandy was through the roof with excruciating pain. Next was trying to unclaw her hand without any pain relief. I tried talking, begging, bribing...anything to get someone to help with the pain issue. They taught her biofeedback, tried to teach her imagery and meditation. Bottom line, nothing was helping. She was in too much pain to concentrate, and let's not forget that concentration was a problem on the best of days! She had a tens unit, lidoderm patches and was started on neurontin. She was still taking the Advil and now they added Tylenol 3. A little pain relief.
She started at a 4 week intensive pain clinic for adults because they had nothing for children (yes, this was a children's hospital). Their attitude was 'no pain no gain'. I was looked at as the mother who was trying to make my little girl into an invalid because I stopped everything and insisted on pain relief for my child. Mandy was getting worse, not better.
One of the doctors told Mandy she would never use her right hand again. So, she and my husband began doing things to try to move her hand. They worked slowly, only doing what she could handle, but they worked nonstop. We started seeing improvement and it actually got the doctor angry ! He finally said he didn't know how to handle Mandy's case as she was a child and he only worked with adults. He sent us over to Cleveland Clinic. Thank God!!!!!!!!
The attitude at Cleveland Clinic is pain relief is the #1 priority. Once that is achieved, lots of pt, OT, whatever it takes. The doctor tried a block, but with no results as Mandy had now had RSD for 4 years. She has had a tunneled epidural catheter delivering bupivicaine 24/7. It worked well for the 4 months she had it. Then a trial spinal cord stimulator for 3 months which worked well. Now she has a permanent scs implanted.
She has used neurontin, it worked but totally screwed up her stomach. She has tried every other drug, all of which don't work for her or she has an allergy to. Pain relief is partially accomplished with the scs, partly biofeedback, partly pain meds, but mainly her strong desire to live life to its fullest. Mandy lives in a constant state of pain, just varying degrees. Some days are unbearable but others are livable. Her friends all call her Tigger for more than the obvious reason. One of the wonderful things about Mandy is her spark and zest for life. She lives very passionately in the face of great adversity. Her smile is ever present, even with tears flowing down her face. She loves the Lord and cares deeply for everyone. She pours herself into everything she does and does everything well!
Oh, by the way, she has full use of her right hand and only uses the wheelchair (which is propelled by her arms) for long distance walks. She now has RSD in (starting from top to bottom) behind her left eye, her ears, neck, back, ribs, both arms, and both hands, both legs and both ankles and both feet. Some areas are worse than others, the legs, ankles and feet are constant so the scs is pointed in that direction. She takes medication for muscle spasms, her stomach issues (thanks to neurontin) and reflux, headaches, depression, sleep and pain. She has some minor weight gain from them...perhaps from laffy taffy, too!
Six years into this, Mandy, who is almost 16 years old now, struggles daily with wanting so much to be a normal teen and being restricted by a body that has such severe limitations. She remains positive in her outlook and feels she has strong purpose in her life.
The battle against RSD is not an easy one, as we never get a chance to know our enemy (RSD) and therefore thwart its evil plans...but we are working in that direction! The fact that you took the time to read this says that we may be getting closer to winning through awareness! Thanks for your interest!
You can come visit Mandy at her web page that has been made available through Caring Bridge. The address is http://www3.caringbridge.org/oh/amanda4life/. Be sure to sign the guestbook while you are there visiting!