The In Their Own Words articles in this newsletter have been written by parents of children with TM. We are too frequently contacted by parents whose children have been recently diagnosed. Our goal is to provide them with as much information and to get them into a network of support as quickly as we are able. We know that the articles that appear in this newsletter about these very special children will offer invaluable information to parents of children with TM; and to parents who will contact us in the future. In writing these articles, we asked parents to provide the information they would have wanted to know when they were going through these very difficult experiences with their own children.

I am forever grateful to these parents for taking the time and energy to write about these experiences. Most of us can't know the emotional energy that was required for them to revisit these extremely difficult and personal issues. We greatly appreciate their willingness to share in their childrens' and their families' experiences.

You may submit your stories for the In Their Own Words column by sending them either by e-mail or through the postal service to Sandy Siegel.

February 28, 2000

My granddaughter, Kristen, has Transverse Myelitis. I would like to tell Kristen's story.

Kristen had her six months baby shots four weeks before her illness and the flu two weeks before her illness. The morning of January 21st 1998 at 7:30, Kristen's mother, Teresa, took her to the babysitter and went to work. Kristen appeared fine. Each day after my daughter, Heather, got out of school, she would pick Kristen up from the sitter's. When Heather picked Kristen up that day at 3:30 p.m., she immediately noticed that Kristen did not raise her arms to greet her or move her body when she put her in the car seat. Heather called Teresa at work. Teresa immediately came home and took Kristen directly to a local hospital. Due to Kristen's age and condition she was immediately flown to Arkansas Children's Hospital in Little Rock. Kristen had no movement from her neck down.

Upon arrival at Arkansas Children's Hospital, Kristen was initially diagnosed with Guillian Barre Syndrome and treated with immunoglobulins. Three to four days later, after an MRI, this diagnosis was retracted and we were told that an unknown virus had attacked her spine destroying nerves on the inside and outside of her spinal cord. Her immune system had also become confused and attacked her body. Kristen had been on a ventilator since her arrival at the hospital and now was given large dosages of steroids. Kristen spent the winters of 1998 and 1999 at Arkansas Children's Hospital. Thankfully, this winter she has not been in the hospital at all. Kristen's diagnosis for the future - she can be functional.

Until this occurred in January of 1998 Kristen appeared healthy. She rolled everywhere, sat up and had even begun to attempt to crawl. To date, Kristen has moved every part of her body except her left hand. She will roll over, although she doesn't do so without encouragement and it requires a lot of effort to accomplish. She will sit by herself if you place her in a sitting position, although she slumps forward (this is improving). Kristen does not crawl, stand or walk. She feeds herself fairly well using her right hand for grasping and her left hand for support. Kristen's right hand has loosened from a tight fist and she has fairly good control of it. Her left is very floppy. She is extremely active with her arms and can move her legs, although she does not do so with much frequency. She is very weak and can only lift light objects.

Kristen's mother has begun to try to potty train her. Kristen will use the potty, but we don't see a controlled function. Bowel movements are extremely painful for her.

Kristen is a delightful child. Last winter at Arkansas Children's Hospital, she learned all her nurses' names so she could get extra attention! She is very forgiving; even after painful medical procedures she is still affectionate with her doctors and nurses. And she is very loving. Because she is so young, we are hoping to see improvements in her condition as she grows. At age two she could recite her ABC's, count to 10 and sing several songs.

We feel blessed to have our Kristen and pray that a cure will be available for Kristen and everyone affected with Transverse Myelitis.

Sincerely,
Donna K. Hibbs

Maria 6 Months
Pennsylvania

Our daughter was 6 months old when she was diagnosed with TM. During the morning of the onset, she had been her usual self, happy, rolling on the floor, rocking back and forth in a crawling position, and sitting up by herself. After lunch, she became irritable and fussy; she nursed and fell asleep in her mother's arms. We continued to rock her and comfort her through the afternoon. We noticed something was not right while changing a diaper. Her arms and legs were limp and she was looking at us. She was able to move her head from side to side but there was no movement from her neck down. Our pediatrician did not understand what was going on when we spoke to him over the phone but he did agree that she needed to be seen. We were not aware of any previous illness such as cold, flu, or anything else. She did have a mild diaper rash a couple of days before that had healed. Our daughter had double hernia surgery at four months old with general anesthesia and a caudal block. She also had immunizations at four months of age.

At the hospital, the emergency doctor examined her. We were asked many times about how this happened to her. Making us feel very frustrated and guilty, like we had done something to her. We knew that our story was very vague. Finally, the emergency doctor consulted with a neurologist and a MRI was ordered and done. They had to intubate and sedate her for the MRI. Within six hours of entering the hospital, the neurologist was telling us that our daughter had TM, which was completely unknown to us. She was admitted to the Pediatric Intensive Care Unit for high doses of steroids and a dose of immunoglobulins. When we saw her, she was on a respirator, had two intravenous lines, and a foley. She stayed on the respirator for three days. The pediatric doctors and the neurologists ran many other tests trying to determine the cause of her illness, which ended up not telling us anything. We were told that the cause was autoimmune, something within her immune system attacked her spinal fluid. Initially, her MRI showed the area of swelling in the Cervical 4-6 and then continued down her entire spine. A week later there was a mild decrease in swelling when compared to the first MRI. We saw her first movement within the first 48 hours when she lifted her left arm up and down.

On the fourth day, she developed a urinary tract infection that required antibiotics. A spinal tap was done a week into the stay. The doctors expected to see signs of the infection but only found normal fluid. She remained hospitalized for 18 days in the pediatric intensive care unit. Two days before we came home, she had a cookie swallow done. She was able to chew and swallow normally so she started to eat some baby food and take her bottle again. We had to catheterize her two times a day, because her bladder did not empty completely. The medications prescribed on discharge were prelone (steroids), suprax (preventive), and oxygen. The equipment prescribed on discharge was an oxygen concentrator (nasal cannula), suction supplies (weak gag reflex), a pulse oximetry monitor, bladder catheters, and bilateral hand and feet/ankle splints.

She started outpatient rehabilitation three times per week for occupational and physical therapy. We saw very slow improvement. We tried to motivate any kind of movement through play and toys. At one point, we also had the Early Intervention Program come into our home for occupational and physical therapy. We felt that this was too many therapists with too many opinions. So we concentrated on the center for therapy. Our goal and hope is for her to have a complete recovery. Even though it's been two and a half years, we still believe this to be possible. She presently has great upper body strength. She can crawl dragging her lower body without difficulty. She can get into the proper crawling position with belly off the floor and knees under her hips, yet only rocks in that position. She feeds herself with either finger foods or feeding utensils. She sits on a bench with usually one hand down to stabilize herself. We do see muscle activity in her legs. Her legs were floppy up until two years of age (post one and a half years). Then we noticed she had her knees flexed in while sleeping and they were hard to relax. With the guidance of therapists, we made nighttime cloth leg splints to keep her legs extended. She can stand with minimal help at a bench for a brief period of time.

Presently, we use the following equipment for her daily routine; electric stimulation for her upper legs, air splints for her legs while she is standing, ankle/feet splints while she is standing or sleeping, night-time cloth leg splints, day-time hand splints to help keep her fingers extended, night-time resting hand splints for muscles/joints to relax, catheterize her three times per day, and a pony gait-trainer to get her upright several times per day. We are researching the type of wheelchair that would be best for her. And looking for out-door toys that are hand pedaled to give her the independence that she needs.

Her therapies consist of occupational therapy two times per week and physical therapy three times per week. She started hydro (water) therapy at 32 months old and equestrian (horseback riding) therapy at 35 months old. She loves them both and seems to be doing better in each activity.

Presently, she takes one dose of bactrim daily to prevent bladder infections. She also takes one dose of detrol daily to help her bladder to expand and hold urine. She sees a urologist one to two times per year. She sees a neurologist one time per year. She sees her pediatrician on a normal schedule, although our visits may be longer and we request extra time.

It has been tough as parents to see our child so ill with no definite reason why and so many unanswered questions. And not being sure what her future holds. Where will we be? Who will take care of her? In addition, trying to care and love siblings that are too young to understand why their sister does not walk or run. It's been a long two and a half years.

We are not sure how we got through the last two and a half years but we did. We talked a lot, cried a lot, and hugged a lot. We have had good days and bad days. We still hope and pray for complete healing to take place. Yet, we do want His will to be done. Our three-year-old is a very happy and loving child and we thank G-d that she has the mind of a three-year-old.

Pam and Morgan Hoge