JW's Story
Joe and I were excited and scared to learn that I was pregnant in September of 2007. We had lost 3 pregnancies and decided to quit trying for awhile, so this was a surprise, but we were very excited and hopeful. Early signs of trouble took us to the doctor for an ultra sound. It showed JW's heartbeat was only in the 50s and they told us it was not a viable pregnancy. Doctors expected the heartbeat would probably stop by morning and we would need to schedule a DNC. We went home distraught but hoped and prayed for a miracle that somehow none of this was true and he would be fine. We also scheduled another ultra sound for morning to confirm what the doctors said. The next day we were amazed and our hope was restored, JW had a strong and normal heartbeat! Everything else on the sonogram looked great as well, it was a miracle. We then continued to hope and pray through the pregnancy that he would stay healthy. At 38 1/2 weeks, my doctor scheduled an induction to limit the chance of a c-section because JW was measuring large. One hour after breaking my water JW's heartbeat began to drop. It dropped 3 times and the doctor made the decision to do a c-section because he was in distress. Panic and worry set in on everyone, once again we were hoping and praying that everything would be ok. About 30 minutes later, a healthy 7lb 15oz boy was born and he had quite a big head. He was perfect, our hopes and prayers were answered!
Almost 2 years later, we began a new hope for JW. He was 23 months old and had his first seizure. It was in the car on our way to my hometown. He woke from a nap screaming, I was getting ready to make an exit to calm him down when all of a sudden he went quiet. I looked in my mirror and he was shaking all over and making gurgling noises. I panicked and had no idea what was happening. I pulled over and called 911. I kept calling his name repeatedly but he would not respond. It lasted 8 minutes and he started to turn blue. By the time the ambulance got there he came out of it and was crying confused and scared. I had to send him in the ambulance alone because my other son was still in the car, I felt so awful for sending him alone and scared. Joe was terrified and an hour away. By the time he got to the ER the doctors had an answer, it was a febrile seizure. We were told it was common in children and he probably won't have anymore. His fever was 101 and he never did show any signs of being sick before or after. We watched him like a hawk and he slept in our bed for a week but eventually we went back to "normal". We continued to hope to never have that experience again. That was in February of 2010, and as time went on we had hope that he had outgrown febrile seizures.
In November of 2011, he had his second seizure. I was in town running errands and Joe called panicked and said he thought he was having a seizure. He had already called 911 and I raced home. He was still seizing when I arrived and this one lasted around 30 minutes. After a couple of hours at the ER we went home and again he never showed any signs of sickness. The ER told us once again this was common and not to worry. After talking with our pediatrician we were recommended to Children's Mercy in KC. They scheduled an MRI and it came back normal. The neurologist prescribed Diastat in case of a seizure longer than 5 minutes and would have a follow up appointment in 3 months. He also said that he had a great chance of outgrowing the febrile seizures because his MRI was normal. But, unfortunately, he had another seizure, I heard him on the monitor moaning and went to check on him and he was in the middle of it. This was new scare for us because it took place in the middle of the night, and I had no idea how long it had lasted. All the "what if's" ran through our heads, but the Dr. only suggested treating fevers aggressively as there wasn't much that could be done since they were accompanied by fevers. Each time he had one, the neurologist explained his chances of outgrowing them lessened and his chance of developing epilepsy increased. But, he was optimistic because they were all fever related. In April, he had a different kind of seizure. We had no idea what was going on. No fever and he was not responding, just limp and staring. We went to the ER and had every test run, they all came back normal. The neurologist ordered an EEG to determine if he had Epilespy. His EEG was abnormal and a diagnoses from the neurologist was complex partial seizures, atypical febrile seizures and Temporal Lobe Epilepsy and prescribed Trileptal. We began a very low dose in May and were seizure free all summer. When school began the complex partial seizures increased and each time he has one, we increase his medicine. Unfortunately every time we increased medicine, Joe and I saw a pattern of increased seizures. We decided to take JW to an epileptologist at the Cleveland Clinic. While traveling there JW had a seizure and then right before his MRI he had a seizure. After he was hooked up to the EEG, he never had another seizure. Through all the testing in Cleveland we found that JW could have scar tissue on his brain and it could be causing the seizures as well. The PET scan from Cleveland showed abnormal activity on both sides of the brain and so did the EEG. So with those findings and that fact that the Trileptal didn't work he agreed that Keppra was a good medicine to try. We went back a year later and during that time JW only had one seizure. With more tests done and his brain healing we found that he has NO scar tissue but his eeg was still active. A year later we had another EEG done and it was normal, showing no seizure activity. He has only had one seizure since August 17, 2013.
JW has simple partial seizures, complex partial seizures and secondary generalization. This means that, for him, when they are not fever related he will have an aura of a tummy ache, simple partial seizure. With or without fever it will then become the complex partial seizure and includes slurring, wandering, stumbling, smacking and licking of the lips, eyes fixed, unresponsive, head always looks to the left and he may have repetitive movements. These can "generalize" which means they move from one area of the brain to all over and that is when one side or all of his body will convulse. We are learning the triggers for his seizures, however we don't know which type he will have or how long they will last. Besides the 30 minute one, they usually last a couple of minutes. His triggers have been, stimulation, tiredness, flashing lights, heat and fevers. The Chelsea Hutchison Foundation has been very generous in granting us an EMFIT seizure monitor. This will sound an alarm if JW's seizures generalize into a tonic clonic while he is sleeping. Unfortunately if it stays a complex partial it will not alarm. We are also first on the wait list for a seizure service dog for JW. Our hopes when we applied over a year ago was that the dog would be able to respond to his seizures by alerting someone, catch JW if he falls during one and also provide emotional support during and after seizures. Since JW is not having seizures, it is difficult to train the dog and we really don't have need for it right now. We chose not to get one when we received the call so someone else could benefit with their current needs. We did request to stay on the wait list in case his seizures do come back. If that happens we would be first in line for a dog.
Joe and I know that JW's case is not nearly as complex as many others who can have around 100 a day and have other disorders and disabilities that accompany their Epilepsy. We are very thankful that JW is a healthy active boy. But, we still have fears sleepless nights and seizure watches during the day wondering when he will have one. We feel that one seizure is too many and are still learning about this disorder and trying to figure out what triggers them as well as praying that his case doesn't become more complex. We want him to be able to play sports without fear of having a seizure. We want him to attend parties and dances with family and friends and not miss out because the DJ lights cause seizures or because we fear he will have a seizure from all the excitement and stimulation. We want him to be able to drive when he is old enough, to apply for any job he wants, and so much more.
Epilepsy is a horrible disorder that robs so many people of so much. We are hoping to raise awareness and do some fundraising. We are also hoping that by sharing our story more people will talk about it and join the fight against epilepsy with us. This is our hope for JW, that he will beat this disorder and help others as well. We hope that one day, there will be a cure.
Almost 2 years later, we began a new hope for JW. He was 23 months old and had his first seizure. It was in the car on our way to my hometown. He woke from a nap screaming, I was getting ready to make an exit to calm him down when all of a sudden he went quiet. I looked in my mirror and he was shaking all over and making gurgling noises. I panicked and had no idea what was happening. I pulled over and called 911. I kept calling his name repeatedly but he would not respond. It lasted 8 minutes and he started to turn blue. By the time the ambulance got there he came out of it and was crying confused and scared. I had to send him in the ambulance alone because my other son was still in the car, I felt so awful for sending him alone and scared. Joe was terrified and an hour away. By the time he got to the ER the doctors had an answer, it was a febrile seizure. We were told it was common in children and he probably won't have anymore. His fever was 101 and he never did show any signs of being sick before or after. We watched him like a hawk and he slept in our bed for a week but eventually we went back to "normal". We continued to hope to never have that experience again. That was in February of 2010, and as time went on we had hope that he had outgrown febrile seizures.
In November of 2011, he had his second seizure. I was in town running errands and Joe called panicked and said he thought he was having a seizure. He had already called 911 and I raced home. He was still seizing when I arrived and this one lasted around 30 minutes. After a couple of hours at the ER we went home and again he never showed any signs of sickness. The ER told us once again this was common and not to worry. After talking with our pediatrician we were recommended to Children's Mercy in KC. They scheduled an MRI and it came back normal. The neurologist prescribed Diastat in case of a seizure longer than 5 minutes and would have a follow up appointment in 3 months. He also said that he had a great chance of outgrowing the febrile seizures because his MRI was normal. But, unfortunately, he had another seizure, I heard him on the monitor moaning and went to check on him and he was in the middle of it. This was new scare for us because it took place in the middle of the night, and I had no idea how long it had lasted. All the "what if's" ran through our heads, but the Dr. only suggested treating fevers aggressively as there wasn't much that could be done since they were accompanied by fevers. Each time he had one, the neurologist explained his chances of outgrowing them lessened and his chance of developing epilepsy increased. But, he was optimistic because they were all fever related. In April, he had a different kind of seizure. We had no idea what was going on. No fever and he was not responding, just limp and staring. We went to the ER and had every test run, they all came back normal. The neurologist ordered an EEG to determine if he had Epilespy. His EEG was abnormal and a diagnoses from the neurologist was complex partial seizures, atypical febrile seizures and Temporal Lobe Epilepsy and prescribed Trileptal. We began a very low dose in May and were seizure free all summer. When school began the complex partial seizures increased and each time he has one, we increase his medicine. Unfortunately every time we increased medicine, Joe and I saw a pattern of increased seizures. We decided to take JW to an epileptologist at the Cleveland Clinic. While traveling there JW had a seizure and then right before his MRI he had a seizure. After he was hooked up to the EEG, he never had another seizure. Through all the testing in Cleveland we found that JW could have scar tissue on his brain and it could be causing the seizures as well. The PET scan from Cleveland showed abnormal activity on both sides of the brain and so did the EEG. So with those findings and that fact that the Trileptal didn't work he agreed that Keppra was a good medicine to try. We went back a year later and during that time JW only had one seizure. With more tests done and his brain healing we found that he has NO scar tissue but his eeg was still active. A year later we had another EEG done and it was normal, showing no seizure activity. He has only had one seizure since August 17, 2013.
JW has simple partial seizures, complex partial seizures and secondary generalization. This means that, for him, when they are not fever related he will have an aura of a tummy ache, simple partial seizure. With or without fever it will then become the complex partial seizure and includes slurring, wandering, stumbling, smacking and licking of the lips, eyes fixed, unresponsive, head always looks to the left and he may have repetitive movements. These can "generalize" which means they move from one area of the brain to all over and that is when one side or all of his body will convulse. We are learning the triggers for his seizures, however we don't know which type he will have or how long they will last. Besides the 30 minute one, they usually last a couple of minutes. His triggers have been, stimulation, tiredness, flashing lights, heat and fevers. The Chelsea Hutchison Foundation has been very generous in granting us an EMFIT seizure monitor. This will sound an alarm if JW's seizures generalize into a tonic clonic while he is sleeping. Unfortunately if it stays a complex partial it will not alarm. We are also first on the wait list for a seizure service dog for JW. Our hopes when we applied over a year ago was that the dog would be able to respond to his seizures by alerting someone, catch JW if he falls during one and also provide emotional support during and after seizures. Since JW is not having seizures, it is difficult to train the dog and we really don't have need for it right now. We chose not to get one when we received the call so someone else could benefit with their current needs. We did request to stay on the wait list in case his seizures do come back. If that happens we would be first in line for a dog.
Joe and I know that JW's case is not nearly as complex as many others who can have around 100 a day and have other disorders and disabilities that accompany their Epilepsy. We are very thankful that JW is a healthy active boy. But, we still have fears sleepless nights and seizure watches during the day wondering when he will have one. We feel that one seizure is too many and are still learning about this disorder and trying to figure out what triggers them as well as praying that his case doesn't become more complex. We want him to be able to play sports without fear of having a seizure. We want him to attend parties and dances with family and friends and not miss out because the DJ lights cause seizures or because we fear he will have a seizure from all the excitement and stimulation. We want him to be able to drive when he is old enough, to apply for any job he wants, and so much more.
Epilepsy is a horrible disorder that robs so many people of so much. We are hoping to raise awareness and do some fundraising. We are also hoping that by sharing our story more people will talk about it and join the fight against epilepsy with us. This is our hope for JW, that he will beat this disorder and help others as well. We hope that one day, there will be a cure.
