Our journey with Complex Regional Pain Syndrome began nearly one year ago in December of 2014. Our daughter Scarlet, then 10 was pushing her little sister on a rope swing and twisted her left foot in a little rut on our dirt road. She said it hurt and was hopping around to keep weight off it. We had her ice it, elevate, take some ibuprofen, wait it out- “don’t worry, it will get better”. Two days later she’s still unable to put any weight on it at all so off to the doctor we go. He puts her in a walking boot, does an MRI and diagnoses plantar fasciitis.
He moves her from a boot to a cast for six weeks. Since she also has a wrist injury she uses a scooter to get around.
While in the cast she still complains of pain, it’s throbbing, it hurts she says. Elevate, rest, it will get better we continue to say. The cast comes comes off in January 2015 and she’s still unable to walk so back to the boot and crutches. After three days of that one of her friends tripped and fell into her knocking her down onto her foot. The intensity of her reaction to the pain from that was so high we thought she must have broken something. Her foot is now swollen and a strange shade of purple.
Back to the doctor who does an X Ray which reveals a normal looking foot. Whenever he touches it though she hits the ceiling. Must be a small fracture that we can’t see he says just based on her pain, back in a cast for three weeks. Two days into this she says it hurts so much she can’t stand it. It’s throbbing inside the cast. Back to the doctor who removes the cast and looks more closely at her now swollen, cold and purple foot. He had recently been to a seminar on Complex Regional Pain Syndrome, he says I think you may be dealing with CRPS. Whatever you do DON’T google it. Just know it’s serious, hurts a lot and the sooner we start treating it the better her outcome will be. Basically her foot was fine but her brain was sending intense pain signals to it. Much higher than the initial injury. He referred us to an anesthesiologist who couldn’t see her for a week. Well I tried to follow his advise but I needed more info while we waited so I did look it up and it was scary! But it certainly sounded like what Scarlet had. She continued to resist using her foot and stayed on crutches but did attend school some while waiting to see the anesthesiologist. She slept with a cocoon of pillows around her foot so the sheets wouldn’t touch it. She couldn’t take a shower because the water stream would hit her foot and be too painful, plus standing was difficult. She took baths but kept it out of the bath water because even just the water hurt. At last the appointment where we would get answers came. The anesthesiologist is an adult doctor, not a pediatrician but has treated CRPS. He diagnosed her with it in about two minutes. He checked the temperature of her foot with a laser thermometer and it was 3 degrees Celsius colder then the right foot. His treatment plan was to immediately remove the crutches and walk, get a spinal block the next day followed by another one the following week, and begin intensive physical therapy and medication. While this is part of the protocol for adults this was all a little sudden and scary for a 10 year old. Walking was intensely painful so without her crutches she was hopping which seemed dangerous. Dan and I were nervous to have her get a spinal block. I called our pediatrician who immediately got in touch with the Pediatric Pain Clinic at Stanford. They advised to not do the spinal, use the crutches for support so she was stable but to try putting weight on it gradually, do lotion massages, warm water soaks, apply different textures to the foot to begin desensitizing it and get up there as soon as possible. We were relieved to have found this gentler child based approach and got right on the referral process to get her up there. While we waited for the appointment she mostly stayed out of school. It was too much to take with all the anxiety and pain. A week or two later we went to Stanford and met Dr. Naidu, who specializes in pediatric CRPS. He along with Summer Hayhurst, a nurse practitioner and Dr. Feinstein, a pain psychologist spent a couple hours with us testing her temperatures, reaction to stimulus, asking both of us questions about her life. It was very thorough. At the end they did confirm the diagnosis and helped us find local therapists to begin her treatment of physical, occupational and pain psychology therapies. They worked out a medication plan with Gabepentin. Although the diagnosis hadn’t changed the treatment plan was much more clear, and the spinal block was no longer on the table. The approach was much friendlier and more comfortable for a young person. We tried many of the local recommendations and were able to get a regular physical therapy routine going but couldn’t find the other two components. Her physical therapist was so wonderful and compassionate but didn’t want to push her too hard and she couldn’t push herself through the pain to advance. When we went back to Stanford 6 weeks later she was worse. We started going up there weekly to see their physical and occupational therapists. She began a modified school program attending only two days per week so she could focus on doing the required home exercises and get to the pool regularly. Several weeks of this and still she was getting worse. Her pain was now all the way up to her hip and her left leg was an inch and a half smaller than the right due to atrophy. Her foot was so locked up she couldn’t even lift a toe or bend her ankle. Her medication changed from Gabepentin to Lyrica and Elavil. Finally they advised that she do an intensive pain rehabilitation program up there. She would be there every weekday for 9 hours for 6-12 weeks. She would begin her day in the pool with occupational therapy, then attend school at the hospital, short lunch break with family, followed by a full afternoon of physical, occupational and pain psychology therapies and groups. Fridays we would meet with the medical team for a check up, the physical and occupational therapists for weekend exercise instructions, a family pain psychologist to learn skills for supporting her at home and do a care conference with the entire team of practitioners to see how they felt she was doing. They take three kids at a time and Scarlet was first on the wait list. We looked for housing and made arrangements to relocate to the Bay Area. About 3 weeks later a spot opened up for her! Dan and Zach would stay home so Zach could finish out 7th grade and I would bring baby Alexis and pull Frankie out of preschool so they could be with me. Housing proved to be difficult to find but thankfully I have relatives in the area that offered us their guest rooms which was very sweet of them. I had spent holidays with them growing up but it had been a while since we had been in touch. It was an ideal set up, we had two bedrooms and a bathroom on our own floor of the house. The house was beautiful with a swimming pool and trampoline (both great for therapy) and they were the sweetest people, taking us in with open arms. My aunt and uncle (really we are cousins, his first cousin was my grandmother) had 6 children and 16 grandchildren so the commotion from our little brood was a welcome addition to their home which was a big relief. It began as a temporary solution while we searched but quickly became the permanent solution as we all loved being there. This was a huge silver lining in this whole endeavor.
So with housing established, Scarlet began the program. It was HARD! She was exhausted, and it HURT even more but they kept pushing her to work harder. Although it was so difficult she really enjoyed being in the company of other kids going through the same thing. She made several good friends and I too enjoyed sharing our experience with the other moms. We began seeing improvement in week 4. She could walk without limping if she really focused on it but needed constant reminders. If she limped walking or crossed her legs sitting (to avoid weight) we would say “waffles” to remind her to correct it.
She wound up doing the program full time for 8 weeks. At the end she was about 75% better. She was nearly fully functional and her pain was at a 3 out of 10 vs the 7-9 out of 10 that she started with. The full time program was followed by 6 weeks of modified program where we had daily appointments, followed by 4 weeks of bi-weekly appointments until school started when she went to weekly appointments. She made the transition into 6th grade very well. She said for a while she was fully better and we tried going to monthly appointments but the pain came back. We have settled into a good routine now where she sees her original local Physical Therapist, Will weekly, her Stanford Pain Psychologist, Dr. Griffin every other week, her Stanford occupational therapist, Sarah monthly, and Dr. Naidu for medical every 6 weeks. She still has increased sensitivity on that foot and calf but only feels pain if she over exerts herself. She does regular PE at school and keeps up with all her friends. We still love to go and see our beloved Auntie Bea and Uncle Chuck as often as we can when we are up there. Scarlet has dealt with this better than anyone could ever expect or imagine, particularly considering her age. Though she was pushed to her limits and in unbearable pain she managed to still smile most of the time and think of others. She had a very good understanding of what she was dealing with and what she needed to do to get better. She helped motivate the other girls working the program and they formed a wonderful support system. Now that they don’t see each other they have mail slots behind the physical therapy check in desk so they can leave each other post it notes. She even will stop to talk to a new person she sees there with CRPS and offer encouragement. We are eternally grateful to everyone who has helped in Scarlet’s recovery!