Kayla is an eleven year old girl who is extremely active and musically talented. She loves playing lacrosse, basketball and cheering for her schools football and basketball teams. Her passion for music is unending. Kayla plays piano, sings and enjoys composing her own songs. In 2010 Kayla was diagnosed with a condition called Ehlers-Danlos Syndrome (EDS). The diagnosis came after multiple dislocations and slow healing. Once Kayla healed and began sports again, she built up her muscles around the ligaments and was on her way to a normal life. On February 25, 2013 Kayla thought she tore her Achilles during lacrosse practice. After two MRI's and a second opinion it was found that there was no injury to her leg, Kayla was diagnosed with RSD which is a neurological condition that misfires pain receptors. Kayla's brain is continually sending pain to her left foot even though there is no injury. She began physical therapy for her foot, which is the only known therapy for this condition. Therapy is extremely painful. One of the worst parts of RSD is it can spread and pain medication doesn't help so there is no relief. Within the first week of therapy Kayla's pain spread to every joint in her legs from the hips down. Kayla was hospitalized for ten days in attempts to understand what was happening to her and to attempt pain control. Neither really was accomplished, as both the conditions (EDS and RSD) she has are uncommon to have much less to have together in addition children are not usually impacted. Both conditions usually attack adults in their forties and fifties. Since Kayla has been diagnosed with these she is in a wheel chair all day and unable to stand for any more that 10 seconds. This is all done with 24/7 pain and she can never get comfortble. After two care plan meetings in the hospital it was decided that Kayla needed to be treated in a pediatric pain clinic in order to give her the best chance of recovery. Cleveland Clinic’s Children’s Hospital in Cleveland was contacted and Kayla has an evaluation on May 14, 2013 for their in-patient pediatric pain rehabilitation program. This is the closest pain rehab clinic that treats children with these disorders. If she is excepted, she will be in an impatient program for several weeks which will involve eight hours of intense overall rehab to get her up and walking again. This program is extremely painful and because Kayla had a complicated case, her body may require a longer stay. Insurance is going to be a fight and does not cover the evaluation, which is $1800 alone. If insurance does not cover the treatment it will be approximately $42,000 for her to attend the first two weeks. This cost does not cover any of the travel expenses for her or the rest of our family. Every Doctor involved agrees that this is Kayla's best chance at walking again. She is currently in aqua rehab multiple times a week with little progress. Along with physical therapy, Kayla is attending acupuncture, therapy and bio feedback. All of these treatments have given her little to no relief. The longer she is in a wheelchair the more difficult her recovery. We pray for a full recovery and look forward to seeing her walk again soon.
Thank you for taking the time to read this and God Bless,
The Smith Family
Click on the link below to see more information on what Kayla is going through and what lies ahead.
Here is the program information:
Version of the McGILL Pain Index