In November, 2003 Lindsay was a normal 14 year old teenager. She loved to dance, skate, ride her bike, ride horses, and hang out with her friends. Her friends had just thrown her a surprise birthday party in October and school was going well. She was very happy. During the first week of November she complained of a sore on her right thigh. Our family doctor assessed it and said that she had been bitten by a brown recluse spider. She was immediately started on antibiotics, steroids to decrease the inflammation, and given the first of many narcotics to alleviate the intense pain.
Throughout the entire month of November, the pain became worse. Lindsay said that if she closed her eyes and didn't know any better, she would swear that someone was stabbing her. It was a horrible time. She was frequently missing school or, if she did manage to make it there, was sent home when the pain became too much. Our doctor sent her to DuPont Hospital in Delaware in the first week of December. It was there that she was diagnosed with RSD. Lindsay was fortunate to be diagnosed so quickly. I know that many people go years without a proper diagnosis. By the time she entered DuPont, she was walking with crutches because she could not put pressure on her right leg. In fact, at this point she already had the many signs of RSD. Fabric touching her leg was excruciating . There was skin discoloration, mottling.
After ten days in the hospital, five of them in physical and aquatic therapy, Lindsay went home using the crutches only occassionally. Her pain level decreased by half once the anti-seizure medicine, Neurotin had been increased. She was also taking Elavil, an antidepressant, in the evening. It is used to treat neuropathic pain..
Throughout January Lindsay went to school three days a week while still going to therapy at DuPont two days a week. Four to five days a week her teachers came to our home to work with her one to two hours, in order to help her catch up on missed school work. This was not an easy time for her. She was emotionally drained as she insisted on trying to maintain some normalcy in her life. Her pain level increased and decreased from day to day, making coping with normal activities extremely difficult.
In early February things started looking up. Lindsay's gait became stronger and steadier. We decided to find a physical therapist closer to home to make things easier. Her pain level stayed at a steady "4" on the O to 10 scale. Unfortunately, halfway through the month, the RSD spread from just her right thigh to both of her shins. Lindsay was then admitted to Hahnemann Hospital in Philadelphia under the care of Dr. Robert Schwartzman. First an epidural catheter was placed in her back for a bupivicaine infusion (type of anesthetic used as a nerve block). Within 24 hours there was minimal relief, but we were hopeful. Her skin was looking better at this point. The next day, the catheter was removed when Lindsay developed a fever of 101.7. We were told that it was meningitis, even though there was less than one percent chance of getting it with an epidural catheter. During the next seven days she was on IV antibiotics. The next treatment tried during this time was a lidocaine infusion. This was stopped after just three days because Linsday's blood pressure bottomed out. (somewhere in the 60s/30s range) Her pain started to spread throughout her body, especially her back. Needless to say, we went from hopeful to feeling hopeless.
When Lindsay was finally discharged, she left in a wheelchair. The pain in her back where the catheter had been was now believed to be RSD pain as well. She could barely stand on her own. Her arms were also now affected due to multiple IVs and blood draws. Her doctor was just as devastated as we were. Within a week of discharge, the RSD was from her neck to her toes. The pain was burning, throbbing, stabbing. She cried all the time. So did we. Her skin became extremely hypersensitive and she developed lesions on her face, thighs, and ulcers in her mouth. By the middle of March we had to find a physical therapist that would come to our home, and Lindsay was still in a wheelchair. At the end of April I took a leave of absence from work to care for her full time. By now we knew that we would take her to Germany for a controversial treatment known as ketamine-coma. Lindsay was also under the care of Dr. Philip Getson during this time. We were referred to him by Dr. Schwartzman, to help coordinate Lindsay's care. He prescribed Actiq (Fentanyl "lollipop") which is used for cancer pain. Lindsay got about 20 minutes of relief from this. That's more than from any other pain medication.
With the ketamine-coma treatment, the doctors infuse very high doses of ketamine, an anesthetic, to induce a coma. They have found that many RSD patients awaken with no RSD pain. We felt we had nothing to lose. Lindsay had already lost her life as she knew it. What I heard on a daily basis was, "I hate my life". "I want to die". So did I. I couldn't imagine going on much longer as we were. It was really no life. Through it all I just kept telling her, "Lindsay, just breathe. Somehow everything will get better." The whole family was so depressed. The only hope we felt she had now was to go to sleep and wake up a new person. So we prepared for Germany. And prayed a lot. Our faith is what got us through all of those dark days and sleepless nights.
We are fortunate to have wonderful family and friends, and live in a terrific community. Many fundraisers were thrown to pay for the trip to Germany. We had neighbors that we didn't know we had, knocking on our door to make donations of money, time, and prayers. SO MUCH positive energy. This had to work! Finally, on June 5, 2004 we boarded a plane for Germany. Lindsay's treatment started on June 9. The ketamine is infused with Versed, another anesthetic. Lindsay was given an additional bolus of ketamine on the first day. We were told that she was trying to wake up! Two days into the treatment they added Propothol, another anesthetic. She was still trying to wake up! Well, Lindsay woke up on day 6, as scheduled. She had no clue who my husband and I were. One of the side effects of the ketamine. She wasn't exactly very nice at this time. But who would be if you didn't recognize anyone and you were hearing a different language spoken around you? After 24 hours the effects were starting to wear off a little. She recognized us but was still very scared and confused and weak. There were a few days when she had to be restrained in her bed because she was very combative. (not normal for her!) We found out from her soon after that she also had been hallucinating during the coma and a little after. Another expected side effect. Not everyone goes through it , though.
On the fourth day after coming out of the coma, Lindsay was herself when we arrived back at the hospital. I cried again, this time for joy! "I feel so refreshed", is what she said on that day. What a blessing! The only pain she was feeling at that time was muscular, due to the fact that her muscles were atrophied. She felt NO RSD pain! She was in remission!
We returned home to a house full of family. They were thrilled to see Lindsay smiling and walking, although she still held onto me for support. Mentally, she had not allowed herself to let go yet. That would take another week before she let go. Throughout the summer, she received low-dose ketamine boosters and continued with aquatic and occupational therapy. Her eighth grade teachers from Kingsway Regional School (they are the best!!) came to our home to help her complete her eighth grade studies. One week before ninth grade started, Lindsay completed eighth grade!
Right now Lindsay is no longer in full remission. Her right leg and arm have since relapsed. Fortunately, not to the degree as pre-Germany! Recently, she spent five days in the hospital for a continuous low-dose ketamine infusion and gets weekly booster infusions now. It is the only thing that works for her. She is being home-schooled for the rest of this year, but looks forward to starting 10th grade with her friends.
One year ago, Lindsay could not sit or stand independently. This year she is preparing to do her solo in her dance recital! With the exception of last year, Lindsay has been dancing since she was four years old. Besides her solo, she will be dancing in the opening act and another routine. The ironic thing is, the music she picked for her solo is called Breathe!
There is still more to this story, but I will add on at another time. Anyone with RSD knows that the story always continues since there is no cure yet.
© 2005 Elaine and Lindsay
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