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.

Hello Sandy and all TMA members! This is Roland et Pascale Erhel. We are French thus, first of all, we must ask your indulgence for the broken English we are writing in. We live in Chantepie, a little town near Rennes, in the west of France. We have two daughters: Aurélie, aged 9, and Coline, aged 3 ½. We live in a very beautiful area with the sea nearby and we could have been perfectly happy if Transverse Myelitis didn't come and turn this quiet stability upside down. Myelitis: we never even have heard about this disease before July 97.

July 97: Coline is a pretty little girl aged nine months. She just begins to stand up in her playpen but she still doesn't walk.
On the 17th of July, her mother picks her up from her nanny's home. Coline is very grouchy, she looks as if she has pain. The GP comes to our home and only finds that her ears are lightly red, nothing more.

When Coline woke up on the morning of the 18th July, she had a fever (39 °C) and we noticed she was a bit limp. The GP comes again and thinks she is weak because of the fever (he finds a double otitis plus a laryngitis). Coline sleeps all this day long. She sometimes has her eyes opened, but she doesn't cry. At the end of the afternoon we keep her out of her little bed and we discover at this time that she is completely limp, without any reaction. After a phone call to our GP, we go and take her to the pediatric emergencies at the Hospital.

She cannot move her legs, her hands, nor her arms. She only can move her head from right to left when lying on her back on the bed. In the space of a few hours, Coline has become almost totally vegetative!

From then on, the medical team performs the following procedures:

A lumbar puncture (meningitis?);
An Electroencephalogram (convulsion when she was asleep? We were concerned about poisoning from medications that she might have gotten into at her nanny's home. This hypothesis was abandoned).
A brain scanner (normal);
A MRI, which finally confirmed the diagnosis of Myelitis made by the neuropediatric of the medical team. It's an acute cervical myelitis in C1 - C4.
An echography of the bladder: the bladder is full and Coline is unable to empty it; this, again, confirms the diagnosis.

Coline stayed for three weeks in this vegetative state. She received different treatments:

An IV for rehydratation;
Antibiotics (CLAFORAN, NETROMYCINE);
Antipyretics (PRODAFFALGAN, ASPEGIC);
Morphine (SKENAN), because Myelitis is often painful;
A daily session of Physical Therapy (passive mobilization of the four limbs).

There is actually no real treatment for Myelitis. A medical protocol is usually used in this case to try to attenuate the inflammation of the spinal cord. Coline received this treatment during these three first weeks of hospitalisation:

A bolus of Corticoids (a great dose of corticoids given in a very short time -- in French we say a dose de charge -- during three days);
Immunoglobulines, one IV or perfusion, lasting two hours, over a three day period;
Corticoids (little doses) per os (oral -- by mouth) during 10 days.

On the 11th of August 97, Coline is transfered to Paris for a super-consultation with the French specialist of children's neurological diseases, Pr Pierre Landrieu. He gives us a great deal of information about a disease we didn't know until then, but he stayed very careful concerning the possibility of recovery for Coline, insisting upon the fact that there is an enormous individual variability in these neurological problems.

I can't describe the state we were in during this awful period. From one day to another, Coline was reduced to a vegetable state. We didn't know how it happened (perhaps a gastroenteritis she made at the end of June; they didn't succeed in finding out the virus responsible for this). And we also didn't know how she would recover. In fact, we didn't know the reason it came to be, and we didn't know where we were headed ..

At the end of the third week of hospitalisation, the recovery began very progressively: support of the head, movements of arms, folding the right arm, getting her right hand to her mouth ....
Coline went back home on the 14th of August. After a few weeks at home, the improvements tended to slow and then apparently stopped.

From August 97 until today, we haven't stopped trying to find anyone able to help her, to help us: the best and the worst, serious and honest people, but also charlatans (in desperation, we go and see anybody pretending to be helpful for us. Love makes blind, but sorrow too ...).

Coline today is a very pretty little girl aged 3 ½. Very happy to live, always smiling (which is a great help for us, her parents, her sister and relatives). Damages caused by TM are unfortunately visible and deeply disabling: Coline cannot normally maintain her chest, she stoops and has to lean on armrests or her thighs to support her back. She wears as often as possible, a surgical corset which extends from her hips to the armpits. Essential to prevent her spinal cord from any distortion, this corset limits to a certain extent the movements of her arms (when she plays, when she draws ...) and turns out definitely bothersome in certain situations (when it's warm, during our holidays in Corsica, for example ...).

Coline can use normally her right arm and right hand but her left hand has remained partially handicapped. In the beginning she could only use her two fingers, thumb and forefinger; she could use the pliers with the thumb and the forefinger, but the three other fingers remain more oftenly folded and inactive. She has yet to succeed in opening her hand, very slowly, for sease (for example, she can hold normally the handlebars of her scooter -- open, then close all her fingers on it -- I transformed it so that the accelerator could be activated by hand and she uses this little electric scooter to drive around the neighbourhood). Coline is recently able to open her hand, but not in a quick normal way.

Coline can't use her legs, even if those are sometimes animated by voluntary movements, mainly in the way of pushing. We have in our home a verticalisator, that we call le debout (the stand up), a mobile device in which we install her in order to fortify her legs (to avoid demineralization and weakening of her bones). Seeing our little girl strapped up tight in her corset and attached in her debout is a heartbreak. But we must get her in it. She, herself, feels quite good in it because of her unusual vertical position which provides her a different perception of her own body and her environment.

To these already heavy handicaps go in addition, as if it was not enough, a whole trail of secondary problems (secondary but also hard to cope with). The dysfunction of her bladder which compels us to practise three urinary catheterizations per day (at her awakening, at midday and in the evening). We, of course, have learned to do ourselves this nursing act whose daily repetition for more than two years would seem unbearable for many, but it's now for us a part of our routine. Despite these catheterizations, or maybe because of them, Coline often develops urinary infections which need to be treated. Echographies of the bladder are regularly done, and soon, a scintigraphy of the kidneys will take place.

Each ORL (Oto-Rhino-Laryngologique -- ear, nose and throat problems) infection brings complications because Coline hasn't got a cough effective enough to clear the phlegms. Her daily session of physical therapy is then replaced by breathing physiotherapy, which occurs several times each winter.

Coline is being seen by Dr. Nicolas (Rehab) in Rennes. He deals with all the problems related to her handicap, especially all that concerns the corset, different orthesis and devices aimed to avoid distortions of her spinal cord, her hips and inferior limbs. Three times a week she has a visit from Yves, her physical therapist, and two times a week we go and see Marie-Claude, a PT too, but specialized in children with motor problems.

Coline has been precocious as regards language, she speaks very well and a lot (she is not a girl for nothing)! Perhaps her intellectual development has come and compensates for the motor insufficiency. She now goes to nursery-school three mornings a week. Annie, her teacher, is assisted by Delphine, who's job is exclusively to look after Coline at school. (These Youngs in France are called auxiliaires d'intégration -- Integration auxilary. I don't know if this exists elsewhere). A little non-mobile chair was created especially for Coline, for her activities in the classroom.

That was, until today, the story of Coline (which is also, of course, the story of us, her parents and all her relatives). The poor little story of a poor little girl that had badly begun with life. Sorry, we don't believe in God. It's certainly a pity, because if we believed, it would be, without any doubt, of some help for us. But you just can't obligate yourself to believe.

We do hope that life will be better for Coline in the future -- we believe in the progress of science; and a great deal of our time and energy will be devoted to her. Before TM, we had no particular aim in life, now we have one, and it is a magnificent challenge!

Roland et Pascale Erhel
E-mail: rolerhel[AT SIGN]aol.com
Website address: http://hometown.aol.com/rolerhel/rolerh.htm

Roland and Pascale ERHEL
7, rue de Molène
35135 Chantepie
France

Danielle 9 Months
Tennessee

It has been four years since Danielle was diagnosed with tm. I will start from the beginning, the best that I can remember. Danielle was 9 months old when she was diagnosed in February 1996.

On February 14th, I picked her up from the baby-sitter's house. She looked a little flushed to me. She did not seem happy when she saw me. When I picked her up, I could tell that she had a fever, but thought it was maybe a cold or something. I only lived a few miles from the sitter's house, so I waited to take her temperature until I got home.

When I did get home and took her temperature, it was about 100. She had a rash on her tummy. Again, I was thinking it was a virus or cold. Her temperature was going up and up for the next few hours. Tylenol was not helping with the fever. It had gotten to 102.5. So, I called her doctor, and was told to give her a little more Tylenol to see if the fever would come down a little. While I was talking to the doctor, Danielle started to have trouble breathing and could not swallow the Tylenol.

We met the doctor at the hospital. When we got to the hospital, Danielle's fever was 105. She was not crying or swallowing anything. She refused a bottle and the breast. At this time we had x-rays done and bloodwork. When the x-rays came back and were read, we were told that she had pneumonia. We were then sent to the local children's hospital. We were there for 21 days.

After being in the hospital for three days, Danielle went limp from her neck down. She cried all the time. We had been seen by so many doctors. We were tired of them coming into the room and pocking and picking on my daughter. No one could tell me what was going on. I questioned whether a spinal tap should be done and was told that there was really no need to be doing a spinal tap. The doctors at the hospital were going to diagnose her with something that (I can't remember the name) was a temporary form of paralysis.
  
I talked to my doctor about it. The spinal tap was done the next day and they found out that she had spinal meningitis. So, antibiotics were started. Well, to say the least, Danielle got worse. Danielle was still not eating and was swelling up like a balloon with all of the meds that she was on. The doctors did an MRI and CT and found that there was fluid on the spine from c3--c7. At this time they thought that her ears had drained from an ear infection to her spine.

We had an intern assigned to her case. He came into our room about 3 am one morning and said that he knew what Danielle had. He said that it was so rare that he did not know how or where she may have come in contact with it. Then told me it was acute tm. He said that he had never seen or heard of a case before. Now that we were diagnosed, I asked, "now what?"

Physical therapy was started while we were in the hospital. The neurologist started her on an i.v.i.g.g drip that lasted two days and dripped for 12 hours at a time. Steroids and breathing treatments. There are so many meds that she currently takes and that she has taken, that I couldn't possibly begin to start listing them all.

After we were sent home from the hospital, we started seeing the neurologist and pulmonologist on a weekly basis. There was PT three times a week for the first three months. We then went for PT twice a week and currently it is once a week. Danielle has been in and out of the hospital several times with her lungs and not being able to breathe properly. Her lungs are getting stronger.

She is now only paralyzed from the waist down. She does have problems with being able to control going to the restroom, so we have her in pull ups. She started going to pre-kindergarten this past year and has made a lot of friends. Everyone says she is special. I believe them; she is special. She has proven all of the doctors wrong; they told me that she would not live two months after being diagnosed.

The out come of all of this is that Danielle is a typical five-year-old in a wheelchair. She loves her wheelchair; it gives her freedom! She also has braces and a walker that help her when she wants to go walking. She loves to swim and play with her babies and barbies.
She is still in PT and will be attending kindergarten this up coming school year.

Mary Troup
work7days[AT SIGN]aol.com