Luke's Tuberous Sclerosis Page
Billy's Story |
 Almost nine years ago, I gave birth to a baby boy named Billy. According to medical literature, Billy was one of four babies in the world that were diagnosed in utero with a genetic disease called Tuberous Sclerosis. Before leaving the hospital, we met with a neurologist and a neurosurgeon who said that we had to put a shunt in right away to relieve the pressure in Billy's brain. A call to the Mayo Clinic's Dr. Gomez told our neurologist not to rush the shunt and to see what happens. Billy has been amazing in his brain development since birth. His tumors have grown in synch with his head. While they continue to get bigger and Billy has almost reached the point where his head is full size, we have seen none of the signs associated with hydrocephalus. Everytime he has a headache or starts to vomit, I thing "Could this be it? Do we need to have brain surgery now?" I start to cry at right about this part. Billy had infantile spasms start right when they were supposed to and we were ready for them at six months. The day he had the first one, was the day he got treatment. Bill got ACTH shots and within two days, we took him home and he gets shots, given by Dad, every day for six weeks. Our skinny little baby turned into a blimp. As the side affects of the steroid wore off, Billy got thinner, but I still remember him eating 12 jars of baby food a day! Billy also began to experience seizures - partial clonic type ones at nine months and was put on Phenobarbital. After a couple of years of hyperactivity, he was switched over to Ativan. Billy would experience seizures about once every 3 months that would last for 30 seconds. His mouth would move in an inappropriate chewing motion and sometimes his hand would shake. Nobody ever notices his seizures unless I point it out. He has been medically controlled, Thank God, for years. He does laugh in his sleep and we think that it could be gelastic seizures, but who would increase a kid's medicine for laughing. He had regular seizures on his 4th, 5th, 6th, and 7th birthdays, so we think that excitement brings them on. They have never affected him in any other way and he has alot of big tubers, including a giant cell astrocytoma. We think Billy's got an intense case of TS and could have been severely impaired mentally, if we had not caught the seizures so quickly, or if he hadn't responded so fast. Many kids seize for months before anyone, including the family doctor, realizes what is occurring. Billy was in early intervention classes at 6 weeks of age and learned some basic sign language and other self-help skills. He has had physical and occupational therapy, which have helped him tremendously. He walked at 12 months and began to do things a little slower that other kids, but was main streamed at the start. Knowing ahead of time what to expect saved our son. Billy also has ADD, which is counteracted by the use of Ritalin twice a day. The Ritalin causes him to be nauseous and to get headaches, so I worry alot. Billy takes Ritalin during the school year and in social settings, where he needs to be attentive to social norms. He is fine without it, but asking him to focus is not fair if he has not had his medicine. His hand writing goes from unledgible to readable in about 20 minutes after he takes the medicine. I have ADD, but has learned to cope, without medicine, although many of my friends will say they haven't learned to cope with my ADD, including my husband! My second son has ADD also and we may need to medicate him as well. It really is hard at homework time and teaching Billy things is really different than the way you teach most people. He learns by memorization. He learned over 50 books by age 3, by memorizing the words. He could not read them yet, but if you picked up the book, he could "read" it to you. After you get past the first years of TS, you will begin to focus on the day-to-day life issues, like school and activities. you can never forget about TS even for a day. It always pops its' ugly little head up and you remember that Billy could die. Billy attends Queen of the Universe Day Center in Levittown, PA. It is a special education parochial school, attached to a regular parochial school. The school serves 5 to 16 year olds in four classrooms. The first 2 years, he spent almost everyday in the special education class. He would be integrated with the normal kids for music or recess. The last two years, Billy has spent the entire day in the first and second grade classrooms and it looks like he will go on to 3rd grade next year. The effort we put into his school work is really taxing and Billy has a tough time with the ADD and the way he learns. He has a desk that is equipped with a laptop, so he can type his homework and school lessons. It is also organized by the occupational therapist at school, and he sits in the front by the teacher. Billy has fine motor problems and cannot process data as fast as the other kids. He talks while he is thinking and shouts out the answers during tests so he is given tests in the hall or other classrooms. He is doing good in seven subjects. Billy is a Bear Scout and has been in it for 3 years, earning 3 badges and arrow points. He is an avid sports fan and can tell you the score, field, player mascot, etc. about every pro, minor, and college team imaginable. He is living in his Rickey Watters jersey he got for Christmas and I rarely get a chance to wash it. He plays soccer on a competitive team and for Special Olympics. He earned several medals from Special Olympics in soccer, track, and softball. He tried going out for skiing, but we didn't get any snow this year. He also loves to swim and play football. He monopolizes the TV and won't let us watch anything if sports are on, except NICK. All the kids love him and last year he was the most popular kid in the class and the best reader. This year, he is well liked, but is beginning to have problems keeping up and becomes frustrated. Our goal is to keep him from getting frustrated. He is in the Children's Choir and loves to sing. He has normal to below intelligence, but is not retarded. He is independent with eating and dressing skills. His biggest problems right now are the learning disabilities encompassed with the fine motor problems. He has brain tubers, skin tumors, strabismus, nearsightedness, cataract, hydronephrosis, ADD, and learning disabilities. Billy is really a loving kid and very sweet. Most people think he is a neat kid. We love him! Please support Tuberous Sclerosis Alliance and the work that it is doing to help Billy and the other people who deal with this disease every day. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
