“Weston was diagnosed with Doose Syndrome also known as Myoclonic Astatic Epilepsy (MAE) early 2010, he just 3 years old. The fall of 2014 Weston was having continuous seizures as well as sub-clinical seizures that the drs couldn't get controlled. He was put in to a medically induced coma for 8 days, they basically re-booted his brain is how they explained it to us. He recently (April 2015) spent 4 days in the PICU at Childrens Mercy Hospital for sub-clinical seizures. Sub-clinical seizures are seizures we can't see physically but when hooked up to EEG the Drs can see them. Weston is currently on 4 different anti epileptic medications: Onfi 2 pills twice a day and one at noon. Keppra 1 pill twice a day Zonisimaside 2 pills in the evening Depakote 3 pills twice a day Sodium bicarbonate 2 pills 3 times a day Calcium supplement a half of a pill once a day Multi vitamin a half of a pill once a day Magnesium supplement 1 pull once a day Levicarnatine 1 pill twice a day He also is in the
Ketogenic diet and he just had surgery in Jan. to get the VNS implant. I recently typed up a note explaining in detail Weston's daily battle with Epilepsy and posted it on my Facebook page I thought I would share with you. I want to tell you a story about a hard day. A hard day for Weston. But first: I promise that when I say "hard," you'll take that with a grain of salt. Losing a parent is hard. Right? Stuff on the news is hard. Today was a bump in the road. Remember that as we go on this blogging journey together. And remind me when I forget. Most days we have to go in and wake Weston up. Very rarely does he wake on his own. That in itself is a process. He is groggy, tired, and REALLY grouchy. He finally rolls out of bed after complaining that he hurts, his head, his knees, his arms, his chest etc... Sometimes I think he is pulling my leg, and then I start to believe him because he does have seizures in the night. Do you know how exhausting and strenuous a seizure is? He gets up, and we get dressed (he is usually wet from an accident caused by a seizure. Weston has never had a problem with bed wetting until last fall when he started having seizures in the night) I usually have his breakfast waiting on him on the table, if not we argue about what he wants and that could take hours, and we don't have time for that. I have his medicine ready to give him before he eats and that really p*sses him off, I mean I don't blame him. 8 pills crushed, and mixed in a spoonful of yogurt in one bite. He eats, which can take up to an hour (if I let it) (he is supposed to have his meals eaten in a 30 min time period, diet rules) because of the absentee seizures. It's so tough to watch him really want and try to eat all while you want to say "hurry up buddy, eat, we have to leave" etc... When you know he is struggling with his seizures. I will swipe his magnet (VNS protocol) during this process hoping it helps, it usually don't. As we head to school he is pretty quiet. Sometimes he can be really grouchy and complain the whole way there. It's a day to day thing, he sometimes can sing the whole way and be so happy, but that's very rare. Once we arrive Lanee gets out and opens his door. lets him out, carries his back pack and lunch in EVERY SINGLE DAY. ALWAYS. She never complains. I drive away fighting back tears almost everyday. I wish I could be with him ALL THE TIME. I know he is well taken care of at school. Just watching your child struggle daily with epilepsy, struggle socializing, it's tough. He can't do the things the other kids his age can do. I head home with Landree. I try to jump in the shower and then get things picked up around the house, laundry started, breakfast picked up etc. When I see my phone ring I really don't want to look at it to see who it is. And then it shows up "school" I cringe, my stomach drops, my heart races, and I let out a huge sigh. When I answer and its the nurse telling me Weston's just having a rough day (meaning he's really out of it (absentee seizures) and just isn't responding) I got that call this last week I think they got 2 words out of him from 8am-11:30 so I went to pick him up. or he's had a pretty good seizure (I'll explain the types of seizures he has below.) Between the nurse, his teacher, and his resource room teacher and I we all decide if we think he can handle the rest of the day or if we think I should come get him. Sometimes I go get him and we get home and he is fine, wild and hyper but sometimes he just hits the couch and wants to sleep. When I pick him up from school he gets in the car and we head home, he usually falls asleep in the car, or gets home and is so exhausted he just wants to lay around or sleep. His poor little body has had enough for the day. He doesn't do ANY extra curricular activites. He sleeps A LOT. His favorite hobby is gardening. He loves to plant a vegetable garden every spring. We do dinner, medicine, showers and bedtime. I won't get into how difficult all those can be. And we start the process all over again in the morning. He takes medication to help stop the seizures, sometimes it works. Sometimes it doesn't. He is on the ketogenic diet, he has a VNS implant, we've looked into essential oils, cannabis oil (thats illegal). But we just can shake this beast. The f*cker just keeps coming back. Weston's seizures usually unfold a certain way. His head will drop forward, his arms will stiffen and he will clench his fists, he sometimes will hold his breath, his face turns bright red, if we don't grab him he will fall to the ground. He clenches his jaw, sometimes we will see lip smacking and eye fluttering. And most of the time he loses control of his bladder. As we grab him we talk to him, we tell him "it's ok bud I'm right here, I got ya, deep breaths buddy, your safe" etc. I want him to know its ok, I am right there with him. When the seizure subsides I snuggle him for a while and help him to the bathroom or wherever to get his clothes changed. Thats usually a routine seizure. Weston also has a history of sub-clinical seizures. Those are seizures that we can't see physically, those can only be detected on EEG. But sometimes Weston's brain says, "to hell with routine!" and goes into a static seizure that doesn't stop. Once (in septemper) when that happened it took putting Weston in to medically induced coma to get those to stop and his brain at a resting state....THAT was a hard day. Those 8-9 days were hard. Very hard. For the Drs. to tell us "they wish they had more of answer or something more to help, but they just don't" is gut wrenching. We feel like we are standing at a brick wall only able to turn 2 ways, and obstacles in both ways. Weston deserves a childhood. Every kid does. We are now faced with decisions on what is best for Weston and our family. One of our decisions is to stop the Ketogenic Diet and let him live somewhat of a normal childhood. The diet (as you will read below) is VERY strict. Studies have shown that if you stop the diet and then decide to start the diet back up because you realized it was in fact working then it won't be as effective as the first time. Do we want to take that chance? The next decision is Colorado. We've done our research on cannabis oil. We don't know if that's the answer for Weston. We are starting a new medication (Depakote) We want to see if it will help, we are also switching all of Weston's medications from generic to name brand. His neurologist highly recommended this. Apparently generic brands can be 10% less then name brands? Weston's neurologist and Epileptologist decided he will need more regular EEG's, we are thinking every 1 or 2 months. When they told us Weston has very difficult to control seizures and we have exhausted all options, our hearts broke. They told us they fully believe in second opinions and if we felt we needed one then they would support us 100% but they truly believed that we wouldn't get any different answers as they have provided us with every option. We still have hope Weston will gain seizure freedom. He had it all summer last year. Something triggered something and hasn't stopped. Weston has 2 amazing sisters. Lanee 10 and Landree 2. They are often put on the back burner, but we tend to forget they are 2 of Weston's biggest supporters. Lanee is the most perfect big sister. She has been sitting front row watching this journey unfold from day 1. She has attended boring (to her) drs appointments, she has watched her little brother give blood, IV's, stitches, staples (from falling due to seizures), she's watched him go through surgeries, ICU stays, she has watched her brother be loaded up in ambulances countless times, she has watched her brother seize and lose control of his bladder all over himself, she has watched him turn purple from not breathing during a seizure, she has caught him from falling because he started seizing. All things a young girl at the age of 8, 9, and 10 yrs old should ever have to do. Landree loves her big brother. She loves to snuggle with him. At the young age of 2 she doesn't understand much. At one point our son didn't have epilepsy. That warm summer evening in July of 2009 changed our lives forever. Here is a little bit about Westons Diet: Dietary Therapy for the Treatment of Pediatric Epilepsy What is the Ketogenic Diet: The ketogenic diet is medically supervised diet used to difficult to control seizures. -This is a high-fat, no sugar, very low carbohydrate diet with the goat to keep the patient in constant ketosis. -Always involves a medical team (neurologist, registered dietician, and nutritionist) -A very rigid diet -Each ingredient is weighed down to the last gram on a scale. -Requires each meal/snack to have specific ratio of fats to carbs+protein -Each meal needs to be eaten in its entirety for the diet to be effective -How does the diet work: Mimics aspects of starvation by forcing the body to burn fats rather then carbs, glucose, or protein The liver converts fat into fatty acids and ketone bodies. Ultimately leading to a state of ketosis. Classic Ketogenic Diets works on a 4:1 ratio by weight of fat to combined protein and carbs provides just enough of the good stuff.... Enough protein for body growth, repair, and brain development, enough calories to maintain correct weight for age and height Effectiveness of the Ketogenic Diet In addition to seizure reduction/elimination the Diet can: Significantly reduce drug side effects "lift the medication fog" Can reduce or eliminate the need for drugs Improve cognitive function Improved motor skills Improve the well-being of the family unit -How is the Diet Implemented? The Dietician, along with the parents, creates very specific meal plans. Eating occasions have a specific number of calories, maintain, a specific ratio, and are given at specific times of the day Parent carefully weighs each ingredient to the gram to be sure each meal has the correct ratio of fat to protein+carbs. Breakfast/dinner time IS medicine time and should be treated the same way. The meal provided must be treated like medication, meaning there is no skipping doses, no sharing with others, no fudging the rules. Meals must be eaten entirely. THE CHILD CANNOT EAT ANY OTHER FOOD OR DRINK THAN WHAT THE PARENT PROVIDES. NO EATING OTHER FOOD, NOT EVEN TO TRY A BITE. NO ADDING TREATS OR DRINKS TO BE NICE. ONLY TAP WATER OR A PARENT-PROVIDED DRINK. ESPECIALLY NOTHING WITH SUGAR...EVER. No eating of treats like candy or cupcakes. Weston cannot use regular play-doh, dry pasta, shaving cream etc. anything that can be absorbed into the skin needs to be approved -Why is the diet so strict? If the rules of the diet are broken, it is similar to missing a dose of vital medication. If too many carbohydrates and/or protein are consumed, the diet will immediately stop working, and since the diet is preventing seizures, we do NOT want it to stop working! Possible consequences: Return/increase of seizures Lethargy or disorientation Acidosis Coma Both the diet and Weston's seizure medications can cause kidney disease and metabolic acidosis, so his doctor has prescribed 6.5 cups of water a day, that's 51 ounces. Seizure emergencies: If EMT are called, make sure they understand no sugar in the I.V. Must be plain saline. Do you want to know more? Go to the website www.charliefoundation.org Watch the movie "First Do No Harm" starring Meryl Streep portrayed a local family from Merengo, Illinois and their extraordinary efforts to stop their son's seizures. VNS Implant: Vagus nerve stimulation (VNS) is a technique used to treat epilepsy. It involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve. The vagus nerve is one of the 12 cranial nerves, which conduct impulses between thebrain and other parts of the brain and various body structures, mostly in the head and neck. The VNS has After it is implanted, the stimulator is programmed using a computer to generate pulses of electricity at regular intervals, depending on the patient's tolerance. For example, the device may be programmed to stimulate the nerve for 30 seconds every five minutes. The settings on the device are adjustable, and the electrical current is gradually increased as the patient's tolerance increases. Re-programming the stimulator can be done in the doctor's office. The patient also is given a hand-held magnet, which when brought near the stimulator, can generate an immediate current of electricity to stop a seizure in progress or reduce the severity of the seizure. More info about that: http://us.cyberonics.com/en/vns-therapy/healthcare-professionals/implantation/ We go to Children's Mercy neurology clinic every 2 weeks to get the VNS turned up. And as you can imagine every single one of his medications have side effects."
Ketogenic diet and he just had surgery in Jan. to get the VNS implant. I recently typed up a note explaining in detail Weston's daily battle with Epilepsy and posted it on my Facebook page I thought I would share with you. I want to tell you a story about a hard day. A hard day for Weston. But first: I promise that when I say "hard," you'll take that with a grain of salt. Losing a parent is hard. Right? Stuff on the news is hard. Today was a bump in the road. Remember that as we go on this blogging journey together. And remind me when I forget. Most days we have to go in and wake Weston up. Very rarely does he wake on his own. That in itself is a process. He is groggy, tired, and REALLY grouchy. He finally rolls out of bed after complaining that he hurts, his head, his knees, his arms, his chest etc... Sometimes I think he is pulling my leg, and then I start to believe him because he does have seizures in the night. Do you know how exhausting and strenuous a seizure is? He gets up, and we get dressed (he is usually wet from an accident caused by a seizure. Weston has never had a problem with bed wetting until last fall when he started having seizures in the night) I usually have his breakfast waiting on him on the table, if not we argue about what he wants and that could take hours, and we don't have time for that. I have his medicine ready to give him before he eats and that really p*sses him off, I mean I don't blame him. 8 pills crushed, and mixed in a spoonful of yogurt in one bite. He eats, which can take up to an hour (if I let it) (he is supposed to have his meals eaten in a 30 min time period, diet rules) because of the absentee seizures. It's so tough to watch him really want and try to eat all while you want to say "hurry up buddy, eat, we have to leave" etc... When you know he is struggling with his seizures. I will swipe his magnet (VNS protocol) during this process hoping it helps, it usually don't. As we head to school he is pretty quiet. Sometimes he can be really grouchy and complain the whole way there. It's a day to day thing, he sometimes can sing the whole way and be so happy, but that's very rare. Once we arrive Lanee gets out and opens his door. lets him out, carries his back pack and lunch in EVERY SINGLE DAY. ALWAYS. She never complains. I drive away fighting back tears almost everyday. I wish I could be with him ALL THE TIME. I know he is well taken care of at school. Just watching your child struggle daily with epilepsy, struggle socializing, it's tough. He can't do the things the other kids his age can do. I head home with Landree. I try to jump in the shower and then get things picked up around the house, laundry started, breakfast picked up etc. When I see my phone ring I really don't want to look at it to see who it is. And then it shows up "school" I cringe, my stomach drops, my heart races, and I let out a huge sigh. When I answer and its the nurse telling me Weston's just having a rough day (meaning he's really out of it (absentee seizures) and just isn't responding) I got that call this last week I think they got 2 words out of him from 8am-11:30 so I went to pick him up. or he's had a pretty good seizure (I'll explain the types of seizures he has below.) Between the nurse, his teacher, and his resource room teacher and I we all decide if we think he can handle the rest of the day or if we think I should come get him. Sometimes I go get him and we get home and he is fine, wild and hyper but sometimes he just hits the couch and wants to sleep. When I pick him up from school he gets in the car and we head home, he usually falls asleep in the car, or gets home and is so exhausted he just wants to lay around or sleep. His poor little body has had enough for the day. He doesn't do ANY extra curricular activites. He sleeps A LOT. His favorite hobby is gardening. He loves to plant a vegetable garden every spring. We do dinner, medicine, showers and bedtime. I won't get into how difficult all those can be. And we start the process all over again in the morning. He takes medication to help stop the seizures, sometimes it works. Sometimes it doesn't. He is on the ketogenic diet, he has a VNS implant, we've looked into essential oils, cannabis oil (thats illegal). But we just can shake this beast. The f*cker just keeps coming back. Weston's seizures usually unfold a certain way. His head will drop forward, his arms will stiffen and he will clench his fists, he sometimes will hold his breath, his face turns bright red, if we don't grab him he will fall to the ground. He clenches his jaw, sometimes we will see lip smacking and eye fluttering. And most of the time he loses control of his bladder. As we grab him we talk to him, we tell him "it's ok bud I'm right here, I got ya, deep breaths buddy, your safe" etc. I want him to know its ok, I am right there with him. When the seizure subsides I snuggle him for a while and help him to the bathroom or wherever to get his clothes changed. Thats usually a routine seizure. Weston also has a history of sub-clinical seizures. Those are seizures that we can't see physically, those can only be detected on EEG. But sometimes Weston's brain says, "to hell with routine!" and goes into a static seizure that doesn't stop. Once (in septemper) when that happened it took putting Weston in to medically induced coma to get those to stop and his brain at a resting state....THAT was a hard day. Those 8-9 days were hard. Very hard. For the Drs. to tell us "they wish they had more of answer or something more to help, but they just don't" is gut wrenching. We feel like we are standing at a brick wall only able to turn 2 ways, and obstacles in both ways. Weston deserves a childhood. Every kid does. We are now faced with decisions on what is best for Weston and our family. One of our decisions is to stop the Ketogenic Diet and let him live somewhat of a normal childhood. The diet (as you will read below) is VERY strict. Studies have shown that if you stop the diet and then decide to start the diet back up because you realized it was in fact working then it won't be as effective as the first time. Do we want to take that chance? The next decision is Colorado. We've done our research on cannabis oil. We don't know if that's the answer for Weston. We are starting a new medication (Depakote) We want to see if it will help, we are also switching all of Weston's medications from generic to name brand. His neurologist highly recommended this. Apparently generic brands can be 10% less then name brands? Weston's neurologist and Epileptologist decided he will need more regular EEG's, we are thinking every 1 or 2 months. When they told us Weston has very difficult to control seizures and we have exhausted all options, our hearts broke. They told us they fully believe in second opinions and if we felt we needed one then they would support us 100% but they truly believed that we wouldn't get any different answers as they have provided us with every option. We still have hope Weston will gain seizure freedom. He had it all summer last year. Something triggered something and hasn't stopped. Weston has 2 amazing sisters. Lanee 10 and Landree 2. They are often put on the back burner, but we tend to forget they are 2 of Weston's biggest supporters. Lanee is the most perfect big sister. She has been sitting front row watching this journey unfold from day 1. She has attended boring (to her) drs appointments, she has watched her little brother give blood, IV's, stitches, staples (from falling due to seizures), she's watched him go through surgeries, ICU stays, she has watched her brother be loaded up in ambulances countless times, she has watched her brother seize and lose control of his bladder all over himself, she has watched him turn purple from not breathing during a seizure, she has caught him from falling because he started seizing. All things a young girl at the age of 8, 9, and 10 yrs old should ever have to do. Landree loves her big brother. She loves to snuggle with him. At the young age of 2 she doesn't understand much. At one point our son didn't have epilepsy. That warm summer evening in July of 2009 changed our lives forever. Here is a little bit about Westons Diet: Dietary Therapy for the Treatment of Pediatric Epilepsy What is the Ketogenic Diet: The ketogenic diet is medically supervised diet used to difficult to control seizures. -This is a high-fat, no sugar, very low carbohydrate diet with the goat to keep the patient in constant ketosis. -Always involves a medical team (neurologist, registered dietician, and nutritionist) -A very rigid diet -Each ingredient is weighed down to the last gram on a scale. -Requires each meal/snack to have specific ratio of fats to carbs+protein -Each meal needs to be eaten in its entirety for the diet to be effective -How does the diet work: Mimics aspects of starvation by forcing the body to burn fats rather then carbs, glucose, or protein The liver converts fat into fatty acids and ketone bodies. Ultimately leading to a state of ketosis. Classic Ketogenic Diets works on a 4:1 ratio by weight of fat to combined protein and carbs provides just enough of the good stuff.... Enough protein for body growth, repair, and brain development, enough calories to maintain correct weight for age and height Effectiveness of the Ketogenic Diet In addition to seizure reduction/elimination the Diet can: Significantly reduce drug side effects "lift the medication fog" Can reduce or eliminate the need for drugs Improve cognitive function Improved motor skills Improve the well-being of the family unit -How is the Diet Implemented? The Dietician, along with the parents, creates very specific meal plans. Eating occasions have a specific number of calories, maintain, a specific ratio, and are given at specific times of the day Parent carefully weighs each ingredient to the gram to be sure each meal has the correct ratio of fat to protein+carbs. Breakfast/dinner time IS medicine time and should be treated the same way. The meal provided must be treated like medication, meaning there is no skipping doses, no sharing with others, no fudging the rules. Meals must be eaten entirely. THE CHILD CANNOT EAT ANY OTHER FOOD OR DRINK THAN WHAT THE PARENT PROVIDES. NO EATING OTHER FOOD, NOT EVEN TO TRY A BITE. NO ADDING TREATS OR DRINKS TO BE NICE. ONLY TAP WATER OR A PARENT-PROVIDED DRINK. ESPECIALLY NOTHING WITH SUGAR...EVER. No eating of treats like candy or cupcakes. Weston cannot use regular play-doh, dry pasta, shaving cream etc. anything that can be absorbed into the skin needs to be approved -Why is the diet so strict? If the rules of the diet are broken, it is similar to missing a dose of vital medication. If too many carbohydrates and/or protein are consumed, the diet will immediately stop working, and since the diet is preventing seizures, we do NOT want it to stop working! Possible consequences: Return/increase of seizures Lethargy or disorientation Acidosis Coma Both the diet and Weston's seizure medications can cause kidney disease and metabolic acidosis, so his doctor has prescribed 6.5 cups of water a day, that's 51 ounces. Seizure emergencies: If EMT are called, make sure they understand no sugar in the I.V. Must be plain saline. Do you want to know more? Go to the website www.charliefoundation.org Watch the movie "First Do No Harm" starring Meryl Streep portrayed a local family from Merengo, Illinois and their extraordinary efforts to stop their son's seizures. VNS Implant: Vagus nerve stimulation (VNS) is a technique used to treat epilepsy. It involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve. The vagus nerve is one of the 12 cranial nerves, which conduct impulses between thebrain and other parts of the brain and various body structures, mostly in the head and neck. The VNS has After it is implanted, the stimulator is programmed using a computer to generate pulses of electricity at regular intervals, depending on the patient's tolerance. For example, the device may be programmed to stimulate the nerve for 30 seconds every five minutes. The settings on the device are adjustable, and the electrical current is gradually increased as the patient's tolerance increases. Re-programming the stimulator can be done in the doctor's office. The patient also is given a hand-held magnet, which when brought near the stimulator, can generate an immediate current of electricity to stop a seizure in progress or reduce the severity of the seizure. More info about that: http://us.cyberonics.com/en/vns-therapy/healthcare-professionals/implantation/ We go to Children's Mercy neurology clinic every 2 weeks to get the VNS turned up. And as you can imagine every single one of his medications have side effects."
