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. Adam Onset 13 Months Copenhagen, Denmark On June 14th 2001, Adam fell in his pram while he was sleeping.  He fell on his back, just where the inflammation was later discovered.  At first, he was screaming, but he was easy to calm down, and walked about a little before going back to sleep. For the rest of the day, nothing happened.  He was happy and played around.  In the evening, he went to a picnic with his father where he ate a lot of fruit.  When they came home, he climbed the stairs three floors.   At midnight, 15 hours after his fall, he started crying.  We couldn't comfort him.  He kept on crying, even while sleeping, for five hours.  In the morning, we called a doctor.  I thought his stomach ached because of the fruit, but he acted very differently than ever before and was very dull. The doctor said that his belly was hard, and that he would probably have diarrhea later on. He never did.  Instead, he was very sleepy.  During the day, he had a fever.  Then the paralysis started and without us realizing it.  We just thought that he was like that when ill, because he had never had a fever before!  He was very tired but happy enough.  He had no loss of appetite, but was so weak that we had to feed him and even hold his head.  His hands and feet were swollen and hot, but still, as we had never had a sick child before, we thought it to be normal with a fever.  We tried to call a doctor, but everyone was occupied, and it didn't really seem to us to be very urgent. During the following night, Adam’s temperature rose and we called a doctor.  He sent us to the hospital as he didn't understand his weakness and couldn't find any reason. Then everything went fast.  He was checked for meningitis because his neck was stiff.  In the morning, a doctor thought of Guillain Barré syndrome. We went into Intensive Care, because Adam started having difficulties breathing.  Fortunately, he didn't have to be put on a respirator.  He just managed to breathe, had a little bit of oxygen to help him, but couldn’t cough or sneeze properly.  The following three days, he had immunoglobulin IV (other people's antibodies) which apparently helped very much.  He soon regained some feeling in his arms.  His hands were very sore and still swollen, but within a week, he was able to pick up raisins and drink by himself.  His eyelids were affected as well and stayed half-closed for about one month. When we told the doctors about the fall, Adam had a MRI which showed white illuminations around T6.  The doctors didn’t believe that his fall had anything to do with him being paralysed. They kept the diagnosis this far, but apparently a neurophysiological test made them change it to TM.  We don’t really know why, because we went home, and the doctors forgot to tell us about this new diagnosis.  We started physical therapy right away and are still seeing a therapist once a week. Due to the summer holidays, we didn’t see a neurologist until almost two months later.  We finally insisted on seeing a neurologist because Adam developed a bad urinary tract infection. Nobody had told us to watch out for infections.  As he’s paralysed, he hasn’t felt any pain, so we only found out because we went to a homoeopath.  He had an antibiotic treatment for five days which cleared it out, and so far his urine is all right.  We give him a homoeopathic diureticum and cranberry juice. Well, back with the neurologist, he explained to us a little about TM.  We were shocked to hear that the outcome was much worse than first reckoned with GBS, and felt very angry and disappointed with the hospitals.  Suddenly, we had to cope with the idea of maybe having a disabled child.  What is good is that it only changed things in our heads. When looking at Adam, we’re always happy and optimistic because he is doing so well. In August, Adam started going to a kindergarten with normal kids, and he loves it!  He was able to drag himself around, and so they accepted to have him there without any extra help.  In January, we could see though that he needed some help to do things like other children, and he now has an extra pedagogue every morning taking care of his special needs.  She’s great! His legs are still weak and spastic, but it’s getting better all the time.  He crawls without difficulty, is able to stand and has even started walking a little with a “gator.”  His balance is getting better, as well.  On April 1st, our neurologist was very optimistic, and assured us that Adam will be able to walk and maybe even to run!  What a great relief! Adam is a real fighter and always very happy. We’re looking forward to coming to the TMA Children’s and Family’s workshop in Columbus this summer.  It’ll be our first time in the United States, and it’ll be a great experience in every way.  We are wondering how Adam will respond to English since he doesn’t understand a single word. Mette and Thomas Nybo Copenhagen, Denmark

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