|
|||||||||||
|
STORIES: John's Story / Glenn's Story / Gabrielle's Story
PEACE HOPE CHILD OF THE YEAR 2007 WILLIAM POLK
His Story...
William was having 50 to 80 seizures a day sometimes. At this point, we had tried 6 drugs. He was taking 4. And none of them had worked or were working to control his seizures. At this point Dr. Ionita recommended a version of the Ketogenic Diet called the Modified Atkins Diet. This low carbohydrate, high fat diet has worked for some children with difficult to control and our only other option at this point was a vagal nerve stimulator. We returned to ACH on April 16th and stayed 8 rough days. My belly was getting large enough that I had a hard time sharing a hospital bed with William – so Scot started sleeping with him at night. His seizure activity was the worst that it has ever been. As the staff reduced his carbohydrates, William lost what little spark he had left. He seized frequently when he wasn’t sleeping – which was almost all the time. Eating and drinking was challenge. I was concerned about William’s eating habits. He had had pneumonia in March and had started choking frequently when eating. When I write choking, I mean having to do the Heimlich maneuver on him kind of choking. At the hospital, it got worse. As his metabolic levels went up and down and we hoped for ketosis every time they checked his urine, eating was a struggle that took hours just to eat and drink a single meal. Dr. Sharp sent us downstairs for a swallow study. Just before we went down, Dr. Sharp told us that we needed to be prepared for the worst – that William was aspirating and we would have to have gastric feeding tube installed. We tried to stay calm, but Scot and I were flipping out on the inside. It took a while to find some things that William could swallow on the diet for the study, but the staff again figured it out. The study was really pretty cool to watch. I had to stand outside with the X-ray monitor and watch through a window, since I was pregnant so Scot went in for me. The wonderfully good news is that William wasn’t aspirating! He did have very weak oral muscles that lead to him having to take 2-3 swallows to clear food that should only take one. So, the speech pathologist told us to continue what we were already doing, chop his meats and other finds up very finely. Supervise him while he eats and eat soft foods. Then we told Dr. Sharp that we felt that the swallowing problems had worsened every time William’s Klonopin was increased. Dr. Sharp didn’t feel that there was a direct correlation there, but agreed to let William wean off of his Klonopin. Returning home was scary for all of us. The dietician had given us her email address and that made all of the difference in the world. Being able to communicate with her as needed made us more successful in continuing the diet at home. We had to buy a very good digital scale, write down every thing that William ate or drank and learn a completely new way to think about, purchase and eat food in our home. The first weeks were hard. William didn’t improve much. At our dietitian’s recommendation, we started adding more fats and oils to his diet. It worked. We learned that William can’t tolerate colored sugar-free sodas (he can only handle clear ones) and other food lessons. After four weeks, William’s seizure control had improved dramatically. I constantly read about the diet and stay in touch with other parents who have children on the diet. William has gotten constipated and had to learn to stop eating almost all of the foods he loves (macaroni & cheese, chocolate, Cheetos). However, he knows that if he eats those foods, he could have a seizure. I’m not sure what he remembers but he knows that he doesn’t want to have a seizure. When we eat a restaurant, go to a potluck at church or to Grana’s house, we pack his little insulated lunch bag with his special food just for him. William has only had one seizure since May 12th. It was on June 18th while I was in the hospital with his newborn baby brother, Max. William has completely weaned off of his Klonopin and is less than a week away from being weaned off of the Depakote. A couple of weeks after that we can start weaning him off of the Topamax. At our last visit with Dr. Ionita, he told us that if William continues to respond this well to the diet that he may even be able to wean off of the Keppra as well, and just be on the diet. The true miracle here is that I finally have my son back. He plays again. He can hold a crayon again and sings along to his favorite songs. He dances again, too! He says “I love you, too,” when he goes to bed. He pretends that he is a ghost or a doctor. I am even happy when he bosses me around sometime! The seizures and the medications no longer have my son trapped somewhere inside his brain. William still has some problems. He not only has the weak oral muscles skills, but he has weak muscle tone all over, with the exception of some very tight hip flexors. So, he attends speech, physical and occupational therapy three days a week. He wears special orthotic shoes that he says help him run fast. And they do! He is more stable in them and has starting running in a more upright position and is starting to climb things. We are all slowly starting to trust in this current level of seizure control. There are still times, when I fear that it is all going to change and be like it was before. And it very well might, but we are trying to make sure that we enjoy life now while things are good. And PEACE played a big role in getting us to this point.
|
William Polk |