Transverse Myelitis Association
Volume 4 Issue 1
March 2001

Page 15
In Their Own Words

 

In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Bonnie Rebuck
Mt. Joy Pennsylvania
BGNSP37[AT SIGN]aol.com

 

My most frightening time of my life began on May 11, 1999. Everything had gone so normal all day and into the night, when around 9:45 PM, my fingers on my left hand started tingling and I thought they were just going to sleep and they would wake up. Then I just tried to go to sleep, and it was the weirdest feeling, the tingling went to my right fingers and then started up my arms. I started then to feel sick in my stomach and started to feel weak. I called my husband at work around 3 AM, and he immediately came home. We called the doctor and he told me to take some advil and call the office in the morning, if I did not feel better. Well I didn't sleep all night. Around 7 AM, we got ready to go to the doctor's. By then I was so weak, my husband almost had to carry me. As soon as the doctor saw me (not the one I talked to on the phone), he immediately told the nurse to call an ambulance. We got to the emergency room almost right away. I could not breathe on my own, so I was put on a respirator right away. After a few days, they decided to do a tracheotomy, or else the tube down my throat would ruin my vocal cords. I was effected at the C-2 level. I remained in the Hospital paralyzed from the neck down and on a vent until June 1999. Then I was transferred to a Rehabilitation facility called HealthSouth, Mechanicsburg until September 1999. I went through extensive therapy and around July 25th I was able to wean myself off of the vent, which was very hard to do. The whole time I was hospitalized all the doctors were saying I had MS. Well, in November 1999 I went for a few more opinions and was re-dx with TM.

I keep getting better day by day. I use a wheelchair for long distances and a walker for short distances. I did get a little bit of foot drop while I was laid up and that is hindering my walking also. I just received Botox injections in my left leg on January 9, 2001 to try and get more movement in my ankle and I have a good feeling about it. As of right now, January 25, 2001 I am being serial casted and have already gained about 15 degrees in my ankle. So I know in time I WILL be walking on my own. I have gotten this far, and plan on getting the rest of the way better. I really don't know where I would be today if it weren't for my family and friends' support. They were right by my side through this whole scary ordeal. I look back now and I can laugh at them trying to read my lips. They were not good at it, and it cracks me up today, but back then it was very frustrating. I have made some very good friends through all this. I know there was a reason for this happening to me. I may not ever know the reason, but I plan on keeping strong and keeping my great attitude, and I will get through this with GREAT results and with a smile on my face.


Why

As I sit here and wonder why,
tears fill up in my eyes.
One day full of life and vibrant,
next day flat on my back
and on a vent.
Next four months went very slow,
out of the hospital I did not go.
Therapy was my daily routine,
wanting to walk was my dream.
Day by Day I am getting stronger,
But days of therapy are no longer.
In my daughter's wedding I will be,
Matron of Honor,
and an honor that will be.
Walking on my own that day,
Is my dream that I pray.
So as I sit here and wonder why,
I hold back the tears that I might cry.

    ~ Bonnie Sue Rebuck


Dillon Lee Richards
Hilliard Florida

 

I am the mother of a child diagnosed with TRANSVERSE MYELITIS (TM) and I would like to share my experience with you and other parents of children with TM. I recently received my first newsletter from TMA by way of my father, who recently contacted you for some information on the association. I was touched by the stories shared by others and tearful over the suffering my baby endured during his ordeal.

You see, my son was 7 months old when he was diagnosed with TM. He could not tell me what hurt where or how much. I thank God for my "mother's instinct".

My son, Dillon Lee Richards, was born June 25, 1997. He was 7-½ weeks premature and weighed 5lbs 7 oz. He was healthy as a horse and slept through the night at 4 weeks of age. He only cried when hungry. He was smart, active and an angel!

On Thursday, February 5, 1998, we began our day like any other, only I noticed he was unusually fussy. He didn't seem to have any cold symptoms and he ate a good breakfast, so I chalked it up to a "bad mood". Throughout the day he became lethargic and extremely whiney. By dinnertime I was becoming increasingly concerned. His father, Darryl, came home from work and agreed that Dillon was "not right". We phoned our pediatrician who said that as long as he was eating and not running a fever, vomiting or having diarrhea, we shouldn't panic. He said Dillon could have an ear infection or is cutting teeth.

I remained by my son through the night, checking his temperature and basically worrying, as he cried out in his sleep. Darryl got up at 5:30 AM to go to work, at which point Dillon's temperature began to rise. I then called the pediatrician again, and was told to bring him at 8:00 AM that morning. I made him a bottle and immediately noticed that he was unable to hold it himself, a skill he'd mastered several months previous. He was moaning. I bent over him and begged him to "touch mommy's face" or "pull mommy's hair", as he so loved to do. He simply stared at me, his right arm drawn up to his chest, his left arm stiff at his side.

A wave of panic swept over me and I called "911". When the paramedics arrived, his temperature was 104° and his breathing labored. They life flighted Dillon to University Hospital in Jacksonville, Florida, a well known trauma hospital and home to many residents and doctors in training. I was forced to drive the 50-minute drive alone, as they refused to let me accompany Dillon on the helicopter.

My parents and Darryl arrived at the hospital before I did. When I saw my son lying on that emergency room table, I knew we were close to losing him. I had told the medics and the "911" operator that I suspected Spinal Meningitis, an illness I had experienced first hand at the age of 15. The doctors in the emergency room were milling about, most of them residents, trying to determine where to begin in reaching a diagnosis. By 12:00 PM Friday, February 6th, they had done a CT Scan and had taken him into x-ray twice. Dillon's breathing was becoming increasingly labored and he wasn't moving a muscle.

Frustrated and scared, I finally demanded they do a spinal tap because I knew he didn't have anything wrong with his bones. They agreed and then made arrangements for a room in ICU. Upon arriving at the room, I noticed that we were directly in front of the nurse's station and was somewhat thankful to have them so close. As we settled in the room, I also noticed that there were cameras in our room and that our room was the only room in ICU being monitored. I still didn't catch on.

That evening, the doctor arrived to give us what we had hoped would be a diagnosis. He began questioning Darryl and I about the previous day's events, wanting to know if Dillon had been dropped, hit or picked up by his arms. and it hit me.they suspected abuse. I became angry and frightened all at once. I was an at-home mother who's life revolved around her child. I knew there had been no physical abuse. It also dawned on me that they had been running him back and forth to x-ray and doing every test possible to prove physical abuse instead of finding the source of the problem. I was fearful my son would die, and that if he didn't, HRS would step in and take him from me.

The doctor said Dillon had "nurse-maid's" elbow and that they thought an infection had set in as a result, causing high fever and paralysis. I became irate and told the doctor that I knew he was wrong, that I suspected meningitis.

That night, our first night in the hospital, I held my son in my arms and rocked him, all the while being watched closely by the nurses and cameras. I was afraid, tired and frustrated at the obvious steady decline of my son's health. At some point a nurse came in and told me that the spinal tap had not revealed meningitis, however the protein levels in the fluid were suggestive of some other problem. They had a neurologist arriving at 8:00 AM the following morning from the local children's hospital.

When the neurologist, Dr. William Turk, arrived, he began examining Dillon. He seemed worried, and after 10 minutes of thoroughly examining Dillon, he told me to begin gathering our belongings because he would have an ambulance arriving to take Dillon and I to the ICU at Wolfson's Children's Hospital just down the road. He told me that Dillon did not have "nurse-maid's" elbow and that he was scheduling Dillon for a MRI.

As promised, we were taken to Wolfson's Children's Hospital where we waited several hours for the MRI, as it was Saturday and a radiologist had to be called in. They put Dillon on a feeding tube, a breathing tube, antibiotics and other monitoring equipment.

I was exhausted and petrified, but at least I felt as if my son was getting the treatment that he needed. About 10:30 PM that night, Dr Turk arrived and told us that the MRI confirmed Transverse Myelitis (TM). We had never heard of it. He gave Dillon a 30% chance of surviving the next 72 hours because the disease had paralyzed him from the chin down and there was already some brain swelling. He said that if Dillon did survive, there was only a 40% chance he'd recover use of his arms and legs. His breathing was labored, but they wanted to keep him off of a respirator, if possible. They began steroid treatment to combat the swelling and hoped the steroids would work before he was unable to breathe on his own.

That night was the worst night of my life. The doctors told me to go home and get myself some belongings. They told me to get things of Dillon's that would make him feel more comfortable, as he would be staying in the hospital a while. He said it would be a "biblical event" if Dillon were out of ICU in less than two weeks. I didn't want to leave him, but Dr. Turk insisted that he wouldn't let me stay in the room with Dillon because I had already been up with him for two days. Walking out of that room and leaving my son with my sister and mother in that hospital was the hardest thing I ever had to do.

We went home and gathered my things and Dillon's and tried to get a couple of hours sleep. We were up again at 5:00 AM and ready to get back to our son. I walked out of Dillon's nursery with a bag full of toys and clothes and pictures.when I saw a plaque hanging from the wall that I'd received as a shower gift. It read:

Now I lay me down to sleep, I pray the Lord my soul to keep, watch me safely through the night and wake me with the morning light.

That plaque remained above Dillon's hospital bed for the duration of our visit.

Dillon's recovery was underway. Within five days he was released from ICU and moved to a regular room where he remained for eight days. He was released from the hospital one day shy of two weeks and he had already begun to move his arms and head.

Dillon will be three years old June 25th. At 2 ½ years old, he is still unable to walk, however, he attends two sessions each of speech, physical and occupational therapy per week, in addition to his specialist's appointments. He has recently tested at age level in his fine motor skills, with some problems, but some advanced skills. He has an above average vocabulary with his only speech problem being the inability to pronounce certain sounds properly due to a weakness in his tongue. He is "socially" advanced for his age and has a delightful and determined personality. He has recently taken his first steps with the use of a walker and has become good enough at it that we were able to get approval to order one for home use.

The opthamologist said there were no long-term effects on his eyes, although the disease could cause gradual blindness. The urologist says he'll be able to control his bladder and bowels normally. Dr. Turk has warned me to be "cautiously optimistic" and that Dillon is writing his "own book" in his recovery.

In two years time we have been told Dillon would never walk; then he'd never walk fast; that he'd never run; and now they are shrugging their shoulders and letting him decide what he's going to do.

The past two years have been emotionally draining and rewarding. I am so proud of my son's determination and I feel so lucky that the right doctor was able to make the correct diagnosis.

We have a long way to go in his recovery, however we feel blessed to have come this far. Since the ordeal, I have often wondered what would have happened had Dillon's neurologist not been well informed of TM and I wonder how many children have been mis-diagnosed as a result of uninformed physicians. How many parents have been blamed for symptoms related to this little-known disease? What can I do to educate people?

I would be interested to hear from any parents of children with TM, as I have never spoken to anyone who has the disease or is even remotely familiar with it. I would also be curious to know how many children this disease affects each year and what the youngest known age of onset is.

I can be contacted at:
(904) 845-1196. Correspondence can be sent to:
Candace Courson
RR1 Box 1895
Hilliard, FL 32046

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