In Their Own Words

In each issue of the Journal, 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.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

ADEM:  Stephen
New York

Stephen was a happy four year-old, going to a special education pre-school for a language delay in 2003.  He loved to go to school, and loved being there.  His program ended in June, and he was to start his summer program in July.  Every year we go to Montauk for vacation at the end of the school year.  Both of my children enjoy the beach, and being on vacation.  It was at that time my sister-in-law, Kerri, said to me, “Stephen is not acting right.”  I thought to myself that she was just being Kerri.  She always notices everything, especially when it came to Stephen.  In fact, she was the first one to tell me that Stephen was delayed, so I chalked it up as her re-diagnosing him. 

Stephen started to look dazed at moments and became quiet. He would wake up in the morning and walk out to the pool area and sit on the floor and wait for the gate to open at 10:00.  He always had a great appetite, and for some reason, he wasn’t eating.  I started to think to myself, maybe my sister-in-law is right.  We went home the following week from our vacation.  Stephen was now very quiet and started asking us, “What happened to my head?”  He was holding the front of his head in pain.  I kept bringing him to the doctor.  First we were told it was allergies, then sinuses, then a viral infection, maybe a tooth infection.  My husband told me I was crazy, and my son was fine.  But I knew deep down inside something was wrong. 

The next week he started school, and he didn’t want to go.  He would cry and scream.  He would come home with black and blue marks on his legs. He was complaining of headaches, he was not eating, and now he was throwing up once, every three to four days.  I asked the teachers if they noticed anything.  They said that he was bumping in to things. They thought that he needed physical therapy, and that would solve the problem.  Then the school called me in for a meeting; they wanted him tested for autism.  I was thinking, “Please someone kill me, I can’t take anymore.” 

The next day I asked my nanny to observe him when he got home from school.  She said, “He looks fine, don’t worry.” I kept asking her everyday, bothering her about her perspective all the time.  Then the dreaded call came to me at work.  She said, “You better come home; he is walking sideways.”  I rushed home, took him right to the pediatrician, and the first thing he said to me was, “Stephen has ataxia, you need to bring him to Stony Brook Hospital right now.  I will sign him in; I think he had ADEM.”  I was in shock; in fact, I still am. 

He was in the hospital for over three weeks; everyday getting worse.  No treatment was being done; no one knew what he had.  The Health Department was following me around all day, every day.  He had a team of doctors that spent most of the day with him. Everyday was a different diagnosis.  First it was a tumor in his brain, which the CAT scan showed negative, thank G-d.  Then it was West Nile Virus; he tested negative.  Then it was autism; he tested negative.  Then it was MS; they were still testing.  He had CAT scans, spinal taps, blood tests, urine test, tests for evoked potentials, EKG, and EEG.  The EEG was, by far, the worst test. He had to be tied down, and they glued electrical tabs to his head.  He cried the whole time and so did I.  The next morning they moved me into a private room. I said to my husband, “Wow, Stephen is so special, he is getting his own room.”  We gathered our stuff and moved into a private room; to be locked in it.  They thought he had meningitis.  We were prisoners for two days. 
The last spinal tap showed positive for Lyme’s Disease.  This made some sense since we were in Montauk when he started showing symptoms, and it was tick infested.  He was scheduled to have surgery to insert a PIC line to administer his antibiotics at home. 

Minutes before he went in for surgery, the Health Department and Neurology came in and said we have conflicting diagnoses.  The Health Department thinks he has Lyme’s Disease, and neurology thinks he has ADEM; it is possible that ADEM was due to an unknown virus, maybe Lyme’s Disease, maybe not. His MRI showed over twenty lesions, but they said there was nothing to do to treat them.  So, together, we agreed to treat him for Lyme’s and start him on steroids right away.

By this time, he couldn’t walk, talk, sit up, go to the bathroom, or swallow very well.  I was a mess. The doctors said he might not ever do this or that again.  I remember saying to myself, there is no way my kid is going to use a walker or any other device.  I didn’t care what they did; I just wanted them to do something. Steroids really turned him around.  Within three days he started to eat, walk a little and make more sense when he talked.  We went home on the third day.

Weeks of therapy, hospital visits, doctor visits, and he was on the road to recovery.  I started to research the brain, its functions, etc.  I started him on a particular type of fish oil, and then I switched it around, and found the perfect dose and types of oil.  Since I started him on the oil, everyone, including his neurologists, could not believe how he improved so fast. It was a miracle.  I wasn’t going to sit back and do nothing.  This was my baby, and my baby is going to be fine! 

It is two years later, and Stephen is a happy kid, running on his own, laughing and loving school.  He has speech therapy, physical therapy and occupational therapy, and he keeps shocking everyone with his progress.  It is like he was never sick.  He continues his fish oil diet, because I believe it is what saved him.
  
I truly believe he was a miracle, and in my heart I know he is.  I read sad stories of people who are permanently disabled from ADEM and it is horrible for me to imagine what some people go through.  Sometimes I feel guilty that he did so well; that you would never know he was ever sick.  Stephen’s story is a happy one, and there is hope for people with ADEM to live normal lives.  If anyone wants to reach me, you can at kbelcher22[AT SIGN]hotmail.com.  I will get back to anyone who needs to chat. 

Kathy Diloreto