Colorado TM Support Group
Lamar and Danise Burkes

Our daughter, Kailey, (age 3) was diagnosed with TM on May 20, 2006.  Approximately five weeks prior to her diagnosis, Kailey started complaining of periodic back pain. Gradually, over the course of a week or two, the complaints became more frequent, so we took her to the doctor where we were told it was probably just growing pains or a viral illness that had caused some pain in her joints.  A few days later she was still in pain and refusing to walk.  We took her to the ER at The Children's Hospital in Parker.  The ER doctors sent us home after an X-Ray revealed she had quite a bit of bowel backed up and defined this as the cause of her pain. 

Three days later she was still in pain and not wanting to walk.  We also noticed that she was periodically running a low grade temperature.  We took her again to the ER.  We finally found a wonderful doctor (Dr. Mandt) who listened to our story and really began to look for something more.  He ran a CBC, did a CT-Scan (which revealed swollen lymph nodes up and down her back) and they attempted an MRI, but they were unable to sedate her properly.  We left the hospital late that night.

The following Monday we went to The Children's Hospital in Denver.  Kailey was able to get a good MRI, but it did not reveal any significant findings.  All urine tests for cultures and infections were also negative.

The following week she seemed better for a few days and then started complaining of her back hurting.  We traveled with our family to Houston for a wedding.  Kailey continued to complain about back pain so we took her to our old pediatrician; we had moved to Colorado about a year before.  After examining Kailey, he recommended we take her to Texas Children's Hospital.  This was on May 18th.

Texas Children's Hospital first screened for an infectious disease and then they started looking for a neurological problem.  After two MRIs, they diagnosed Kaiely with TM. They performed a spinal tap and ran numerous other tests.  They also performed a brain MRI which came back clean.  They put her on a heavy dose of steroids for five days in the hospital along with some pain medication.  We were sent home with a four-week taper of oral prednisone and Tylenol and Motrin for pain management.  In the hospital they also noted her temperature fluctuated between 102.3 and down to 95.6; it seemed to stabilize when she was discharged.

Kailey continued to have back pain and experienced periodic temperatures over 100.  Our pediatric neurologist wanted to wait until she was entirely off of the steroids before proceeding with any more testing or lab work.  We began doing research on transverse myelitis and found Dr. Douglas Kerr.  We wanted our neurologist to get in touch with Dr. Kerr because we were concerned about Kailey’s back pain and her problems with walking.  The neurologist was reluctant to get in touch with Dr. Kerr.  We began discussing Kailey’s case directly with Dr. Kerr.  We relayed what we learned to our local neurologist and convinced him to do another MRI on Kailey.  She was experiencing weakness, pain and bowel and bladder difficulties. 

We were quite frustrated with having to fight the neurology team to get things done.  We met with the head of the neurology department who helped facilitate getting several neurologists to review her case and they recommended follow-up MRIs. These MRIs from Children's Hospital came back clean.  The neurology team began to suspect that Kailey's original MRIs from Texas Children's Hospital had not actually enhanced and that Kailey did not have TM or any other neurological problem.

We felt as though we were back to square one from a diagnostic perspective and were very disappointed and frustrated.  The neurology team then referred us to a rheumatologist.  The rheumatologist ran a large number of tests and ruled out any rheumatologic disorder.  That left us with a three-year-old little girl with back pain, intermittent fevers, bowel and bladder problems, weakness on her right side and no explanation or diagnosis.

In our frustration, we contacted Dr. Kerr again at Johns Hopkins.  It was not easy, and it took most of our savings, but we traveled to Baltimore and saw Dr. Kerr on August 8th.  Dr. Kerr was, by far, the most amazing neurologist we had seen during our problems with Kailey.  He reviewed all of her charts, blood results, MRIs, CT-Scans, and other tests and concluded that Kailey did have TM in the lowest region of her spine.  He determined that most of her pain was related to muscle spasms and muscle tension in her lower back.  He recommended a more intensive physical therapy regimen and continued monitoring of her bladder and bowels.  Dr. Kerr was very encouraged by Kailey's progress and felt she has the ability to almost fully recover. 

Kailey has slowly progressed but she continues to have back pain and bladder problems.  She can’t tell when she is urinating and then when she does, she struggles to empty her bladder.  Our pediatrician is discussing these issues with Dr. Kerr.  He feels as though Kailey may experience some intermittent episodes of inflammation over the next couple of years.  These symptoms may reoccur and she may need some boost therapies with steroids for a few months to keep things moving in a positive direction.  He is still very positive about her outlook and feels very strongly that a full recovery is quite possible for Kailey.  We continue daily with her physical therapy and our prayers that she will keep progressing and will slowly return to full strength.

From our experience with Kailey, we’ve learned about the importance of sharing information and support.  We are excited to be starting a TM Support Group in Colorado for people with TM, ADEM and NMO.  We know that this group is needed in our state and we are looking forward to hearing from you! 
 
Lamar and Danise Burkes
ldburkes@hotmail.com
(720)851-8520