Douglas Jacob Lucken- Lemoore, CA
Douglas Jacob Lucken (DJ) was born on April 27, 1992 in Lemoore, Ca. He has been a very happy, fun, energetic and very intelligent child. He always learned very quickly. His passion has always been riding and working on bikes. Doug absolutely loves school and currently he is still doing that.
In September 2006, at the age of 14, he had his first seizure. At the time we never saw it coming. We thought that it was just heat or just an adolescent seizure. He was referred to a neurologist in Hanford, CA. The doctor had him on 8 different medicines, Depakote was one of them. He was taking 5000mg of that a day along with an anti-anxiety medicine. It seemed as though it was just making him lethargic. By December of 2006, Doug was having trouble walking, standing, and doing the everyday things he used to do. We noticed that he was having full body spasms, twitching, jerking and some incoherency. We thought that it was just the amount of medicine. The doctor was stumped and referred us to UCSF neurology clinic for further evaluation.
In February of 2007, we went to UCSF for a consultation. At that point that doctor that was evaluating him said that he wanted to keep him there. We never expected that either. We were only there for a consult. They kept us and de-toxed him off the 8 different meds that he was on. We were given to the Chief of Neurology, Dr. Hutchison. Doug did so well coming off of everything. No twitching, jerking, spasm or anything. In the 15 days that we were there they kept him hooked to the EEG machine to see where the seizure could be stemming from. They found nothing. About 7 days into the stay Doug had a seizure and at that time he did not have the EEG on. Towards the end of the stay Dr. Hutchison faces us with the decision to do the genetic testing for Lafora Disease. He said it is very rare, but Doug probably didn’t have it but he wanted to rule it out. So we did the testing.
On August 6, 2007 we were given the horrible news that my beautiful baby boy had Lafora Disease. As you all know and have experienced that is devasting. Douglas has progressed downward since then. He is now on 6000mg of Keppra a day along with 6mg of Ativan a day. He is drooling now, has a hard time sometimes using the bathroom on his own. He does have twitching, jerking, problems swallowing and memory loss as well. We also battle with mood changes. He gets very angry sometimes. He has seizures and they seem to be in the early mornings between 5-7am. They last for about 30 sec to 1 minute. They are starting to get a little more intense.
He is such a brave little soldier. He still gets to go to school, but he is half days now. Doug looks forward to going. He still wants to ride his bike, skateboards, work with tools, but this disease is just eating at his poor little body. We have also chosen not to tell him about his condition. My family and I feel that he has been stricken with such a terrible disease that why break his heart. Let him live each day to the fullest and let him think that he always doing his best. With the help from my husband, his step-father, my sister, Judy and Dave, he is able to keep going and keep that smile on his face. We are very fortunate to have lots of help.
We often take life for granted!! My family and I have learned that the little things in life are the most memorable and the things that you used to worry about are really not that serious. Each day that Doug gets up with his smiling face is a blessing to all of us!!
- Provided by Christina Zigler, DJ’s mom
