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.

19th October 1998

Natasha got up for school as normal feeling fine. I dropped her off and went to work. At lunchtime (12.00 noon) I went for a sandwich. While I was out Natasha's school had telephoned and asked me to call back. I arrived back to the office at 12.30 PM. I telephoned the school immediately to find out what was wrong and their answering machine was on; half an hour later I managed to get through.

I was told that she had been running around in the playground with her friends when she suddenly felt a pain in her chest and felt sick. She was told to go and play and not to be silly. Five minutes later she felt very sick and went indoors. She was sick three times downstairs and twice upstairs. At that point the school decided to telephone me. Whilst they were ringing me, Tash was left alone. She started to get a funny feeling in her body and the pain in her chest was still there. She stood up and immediately fell to the floor and banged her head on the corner of a table. When the dinner ladies got back to her, they realised what had happened.

I arrived at school thinking that Tash had a stomach virus and would be fine. When I saw her lying on the bench, I called to her so I could pick her up and give her a hug. She told me she couldn't move. I had no idea. The school had told me none of this. Then I saw a huge lump and bruise on her head.

I thought the loss of use in her legs was a symptom of concussion due to her bang on her head. I decided to take her to our local hospital to check her out. We arrived at 2.15 PM. On the way and when we arrived at Casualty, Tash was complaining of excruciating pain in her back. She was extremely distressed, as was I.

The nurses and doctors in A&E were appalling. They had no idea what was going on and thought that Natasha was having them on. One nurse said, "Oh don't worry, we've had loads of children in this week with the same symptoms, wanting time off from school. They all got sent home with the same answer - go to bed, you will be fine in the morning."

In Tasha's case, they were sadly wrong.

We were left alone in A&E for five hours not knowing what was going to happen. She had not been sick since I had picked her up, but from her chest down, she was getting strange feelings. One minute she could feel everything and the next she felt nothing. It was ever so strange.
 
They decided they would admit her to the Children's Ward (5.30 PM) and monitor her. When we arrived, a Doctor examined her. He had no idea what was wrong, so he called the Consultant. At this point Natasha's breathing was quite quick. She was getting very breathless. They thought they knew what it was but they were not sure. They mentioned performing a lumbar puncture.

They decided to contact the specialised Children's Hospital (9.30 PM) about 10 miles away to see if they could admit her. Their main worry was whether her breathing would deteriorate further while she was being transported from one hospital to another.

We managed to get there OK (midnight). She was checked by a House Doctor, who again thought she knew what it was but was not completely sure. A lumbar puncture was performed and she beeped the Consultant for further diagnosis. We were then taken to the High Dependency Unit for monitoring (2.00 AM).

At 2.30 AM I tried to put my head down for a while. Natasha had gone to sleep. At 2.45 AM I was told that the Consultant had arrived and she needed to speak to me. She had immediately requested a MR Scan and told me she would know further after seeing the scan.

4.00 AM in the scanner. I could see the reaction on the Consultant's face. It was starting to dawn on me that something was seriously wrong.

5.00 AM. I was told what was wrong; it was TM. Natasha had contracted a stomach virus that had convinced her immune system that the virus was in her spinal cord. The immune system destroyed part of the cord.
We did not completely understand the total severity of the situation until the Doctors drummed it into our heads the next day. We were told that if she didn't start to regain anything within the next few days that she would be like this for the rest of her life; not being able to be touched because the slightest movement causes more pain than you could possibly imagine; not being able to move from the chest down; not being able to give your mum a hug.

We are now 18 months down the line. She can sit up with a straight spine for a short period. She can stand, although not for very long. And she can walk with a frame for about ten steps before she gets too tired. She can feel from the chest down although it does not feel right. The base of her feet are still incredibly sensitive and she would rather you didn't touch them but they are much better than 18 months ago. She has private physio three times a week and NHS physio once a week, and she works incredibly hard. She set a goal last year to walk a step and she did it. This year her goal is to replace the walking frame with crutches. She has such a strong will. I know she will do it.

Natasha is a remarkable child. She is brave and extremely strong willed. She always has a smile on her face and whenever I find that I can't cope and it gets to be too much, she gives me a huge hug and tells me everything will be OK.

I will never forget those first few days. I will never forget the traumatic three months in the hospital. I have been scared for life. It still brings tears to my eyes every time I think about it. Writing this has been extremely hard.

It was difficult not being able to talk to parents who have had children with TM that were attacked so quickly. It only took 20 minutes for Natasha to go from a fully abled child to becoming a child paralysed from the chest down. It hits you like a ton of bricks and your life is turned upside down. It's only time that heals and life does get better; even though the future is uncertain. Natasha will walk again on her own; she has me to make sure of that and her determination.

Andrea Allen
giu22[AT SIGN]dial.pipex.com

Rachel 6 ½ Months
Ohio

It was Saturday, October 9, 1999, a day our family will never forget. It was on that day that our daughter, Rachel, woke up and could only move her neck. She had exhibited cold symptoms for two days prior and we felt she was probably coming down with an ear infection (she had two previously) so we had planned on taking her to the Pediatrician on Saturday morning anyway. Rachel looked very sick, and had a high fever and very weak cry when she woke up, although she was alert and responsive. We were obviously very concerned and called her Pediatrician right away. When we took her there about three hours after she woke up, he did find a double ear infection and gave her two shots of antibiotics, one in each leg. She didn't cry when she got the shots (which, of course, concerned us) but the doctor felt that her muscles shut down due to the flu. After all, you don't go to bed with a cold and wake up with a neurological disorder, right?? Anyway, that was the beginning of such sadness and mourning for our daughter who had been developing so normally up until that day. She was just beginning to lift up a little on her knees and could pretty much sit up without falling over when all of that changed literally overnight last October.

We took her back to the Pediatrician's office the next two days and they continued with the shots of antibiotics. She didn't cry for any of them. Rachel did improve and began to look better and during these three days, she began to move her arms, first the right one and then the left in large sweeping movements. When she showed no signs of leg movement by Tuesday, the doctor arranged for us to go to Rainbow, Babies and Children's Hospital in Cleveland so the large staff of pediatric specialists could adequately access Rachel's condition. We entered through the emergency room and left 18 days later. We were asked a lot of questions about Rachel's immunization history and she did, in fact, have immunizations for Diphtheria, Acellular Pertussis, Tetanus (DtaP3) and Haemophilis Influenza B (HIB) on September 23, 1999, a little more than two weeks prior to her onset of TM. Even today, her Neurologist cannot completely rule out some connection. At the hospital, they performed a Cat Scan, a lumbar probe and then an MRI of the brain and spine. During this time, they transferred Rachel to the Pediatric Intensive Care Unit as a precautionary measure since her respiration was weak and they wanted to watch her more closely. They wanted to make sure whatever she had would not eventually affect her ability to breathe on her own. Thankfully, we were only in the Intensive Care Unit for two days. On Saturday, one week after the onset of her TM, we were definitively told of Rachel's diagnosis and she began intravenous steroid treatment. We were told of her diagnosis on this day only because Rachel's MRI showed a couple of other things that they had to rule out as having any contributory affect. They found swelling at C3-C7, a small thoracic syrinx (fluid filled cyst) and they also said there was a decreased amount of white matter in her brain for her age. This was all so scary!

During Rachel's hospitalization, she had therapy everyday and she showed rapid improvement in her upper extremities, showing increased purposeful movement and strength. Also at the hospital, she periodically wore custom-made hand braces (to help her fingers straighten out) and custom-made foot braces (to prevent her toes from pointing downward all the time). Her trunk was weak and she was not able to sit unassisted or roll over. It was also determined she was retaining urine and so she had to be catheterized every six hours and this ultimately resulted in a urinary tract infection. This condition did reverse itself while in the hospital and we were able to go home with her urinating on her own. The Pediatric Urologist indicated her bladder was now considered overactive and she dribbled urine frequently. Thankfully, Rachel only needed an enema once and we continue to watch her bowels and monitor them through diet.

We were very happy to go home, having spent a lot of time away from our two sons, Matthew (who turned six while Rachel was in the hospital) and Kevin, age four. We arranged to have Occupational Therapy two times per week and Physical Therapy one time per week on an outpatient basis. On November 1st we started our outpatient therapy and continued to see improvements at every visit. This was very encouraging, but by early December, the progress had slowed, although it was still there. At first we were told by her Neurologist that she would be seriously concerned if Rachel was not moving her legs in three months and this made us extremely anxious. We watched her constantly for any sign of new movement. While in the hospital, Rachel could move her legs stiffly from the hips, however, after we got home, we would notice very slight changes or frequency of movement. We would notice this more when her upper body was stimulated or when she was sitting on a hard surface. It was nothing regular or predictable, but it was wonderful to see, just the same.

Rachel is now a little more than 13 months old and she has had Transverse Myelitis longer than she hasn't had it. It really is hard for us to remember her any other way and we really don't have much memory of her being mobile at all since she was just beginning this stage of development when she got sick. She now goes to Physical Therapy two times per week and Occupational Therapy one time per week since she has shown some increased leg movement and considerable upper body improvement. Her trunk is still weak although it has improved with therapy. Her arms are at 100% strength and she can get around the house pretty quickly by doing the commando crawl. We have noticed irregular movements in her hip flexors and quads and we are working hard at trying to capitalize on that. We do a lot of sit to stand exercises and have recently begun to do electrical stimulation on her back and lower extremities. Rachel cannot roll from her back to her stomach without assistance so we are working on developing the muscles to help her do that so she doesn't feel so trapped. She gets very frustrated being on her back unless she is very tired. Rachel stands in her standing frame for approximately one hour each day in 15 - 20 minute increments which should provide her some additional weight bearing which will help in her structural development. We also periodically do warm water pool therapy and she will be fitted for dynamic AFO's in a couple of weeks. At this point, Rachel spends a lot of time at therapy and at home we work on a large therapy ball and do a lot of stretching exercises to keep her tone good so that if the signals do get through, her muscles are loose and ready to move.

Thankfully, throughout this, Rachel is not in any pain which many people experience with TM. She is a very happy baby and does not know that anything is amiss. It is difficult to assess everything about her condition because she is non-verbal, but we do know that she has some feeling in her legs. She had an ear infection just a month ago and they gave her a shot of antibiotics in her leg and this time she wailed! Rachel has recently begun to scratch her legs quite a bit and we feel this is in response to increased sensation she is getting in her legs.

We don't know exactly where this uncertain road will take us, but we do know it will take a very long time for Rachel to recover whatever function she will eventually have. The waiting and the uncertainty is so very difficult, but we continue to be hopeful for Rachel's future. We have to be. We know at this point that she would be able to live independently and we are so grateful for that. As we wait, we surround her with a lot of love and encouragement and, hopefully, someday our prayers, that one day Rachel will walk, will be answered.

Cathy and Dan Dorocak