You know me and my superstitions. I hadn't mentioned it, but was about to say something. That Jenelle was having a really good no-seizure streak. Oh well, it was a good run. Until Saturday, Jenelle had been doing relatively well with Onfi. The absence seizures we were seeing had settled down a bit, and no more grand mals! None since starting Onfi! All of this great seizure control since early August - it was quite a streak if I say so myself. But all the knocking on wood is really just superstition, and if she's going to have a seizure, she's going to have a seizure.
This weekend, Jack's travel ball team had it's first tournament of the new season in Fountain Valley. Grandma was watching Jenelle as I was keeping score - they were walking around behind the back stops. We were at one of those multi-field places where three back stops back up to each other, and there was a game going on at the field behind ours. All of a sudden, I saw Grandma violently fall to the ground. Instinctively thought she was hit by a foul ball, and dropped everything to get to her. It was then I realized that it wasn't a baseball at all, but Jenelle had fallen to the ground due to a "drop seizure" and took Grandma to the ground as well.
Two gentlemen friends of ours ran to help me with both Grandma and Jenelle. Grandma was OK, but with her history of back and knee pain I knew she was going to hurt later because the fall was pretty hard. We helped Jenelle stand up, and she remained quiet for quite a while. It was then that I realized she was in an absence seizure. With Jenelle, there is always a delayed reaction, and Grandma said Jenelle hit her head pretty hard when she fell. As we waited for some sort of reaction for Jenelle, I realized we needed to start timing the seizure. Two minutes had already passed. Absence seizures are very tricky to spot, this because often times the patient seems to be somewhat alert. Jenelle was smacking her lips, chewing, and blinking here eyes while looking around. Definite obvious signs of an absence seizure. I confirmed it was a seizure by holding her hand and arm; you could almost feel the electricity pulsating in her. When the timer on my phone reached 4 minutes, we moved her to the grass. After 5 minutes, Jenelle was still not seizing so I gave her Diastat.
Unlike her usually response, Jenelle did not immediately come out of her seizure after the Diastat. One of the parents on our travel ball team is a doctor, so I asked for him to help me track her heart rate and breathing. Luckily, she did real well with the Diastat, and her heart rate did not drop. Having a doctor nearby was easier than having to call 911. Just as we approached the 9 minute mark, and me thinking she needed a second dose of Diastat, Jenelle finally came out of it, and acted as if all was normal.
I watched over her closely the rest of the evening, and later Jenelle was giggly and acting very normal. We were worried with her hitting her head, but other than the seizure she showed no signs of any concussion. The other good news is that after the Diastat, we didn't seem to have any follow up/cluster seizures. Once again, Diastat saved the day, and a trip to the ER. Thankfully the doctor parent on our team saved us a 911 call as well! I'm still not sure if it was a drop seizure, that went into an absence seizure because of the hit to the head, or if it was one long seizure. Regardless, it wasn't as bad as it could have been. OH, and Grandma is very, very sore - poor Grandma!
Thank you for continued prayers - as always, I'll keep you posted!
Monday, November 19, 2012
Friday, November 16, 2012
November is Epilepsy Awareness Month
November 1 begins National Epilepsy Awareness Month. The color for Epilepsy Awareness is purple. Each year, I try to post information to help advocate and promote epilepsy awareness and to help educate everyone about seizures, and what to do during a seizure emergency. Usually, I get this post up on November 1, however this year with Halloween, the election and so many other things going on in our lives, I decided to post-pone my usual Epilepsy Awareness post to the middle of the month, because after all, November is 30 days long! ;)
This year, I want to talk about Sudden Unexplained Death in Epilepsy, also known by the acronym SUDEP. SUDEP is “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for death.” In other words, an "unexplained death in someone who has Epilepsy."
I mention a lot on this blog about how we've been told that Jenelle has a short life expectancy, but I don't think I talk much about why that is... for obvious reasons I hope. Death is not a topic that we like to discuss, let alone the possible death of one's own child. This week, I have been struggling a lot with the recent death of a friend, with Jenelle's mortality and my own. I felt this topic was very fitting this year.
My friend Enid was diagnosed with breast cancer six months after my initial diagnosis with AML four years ago. She fought hard and we mutually inspired each other in our fight. She went into remission, but a year later her cancer returned. She died last Saturday leaving a husband, and three young children; and here I am poised to celebrate my 4th year in remission in December. All the questions I have, and all the "what ifs" and that could be me - Survivor's guilt is a bitch.
This is what is feels like to know you have a medically fragile child. To realize that she will have a "sudden, unexplained death because of her epilepsy." Patients like Jenelle with Lennox Gastaut have a high rate of morbidity due to "accidents"; in that I'm reminded of her accident falling into our neighbor's pool more than a year ago. Accidental death can occur during a seizure if the patient has a fall when seizing, or an accident driving a car when a seizure occurs (assuming the patient is driving), or drowning due to swimming when a seizure occurs, etc. One of the biggest concerns for Jenelle is Status Epilepticus - or constant seizure state, which can in rare cases can end in death. It seems like a lot of this can be prevented with common sense really, but like we realized after Jenelle's fall into our neighbors pool, anything can happen.
The strongest weapon we have against death in epilepsy, is advocacy and education. Educate yourself on what to do during a seizure, and educate yourself on what to look for. Know the recommended first aid response. Advocacy is key in helping others know what to do and what to expect. When you know what to expect and what to do, it isn't as scary as it sounds.
Since Jenelle's initial LGS diagnosis in 2005, the Internet seems to have blossomed with new information. Here are some wonderful and informative new links that I found in researching this post, and that I will add to our side bar of links.
LGS Foundation
About LGS (this site sponsored by the drug Onfi, which Jenelle started taking in July)
Epilepsy dot com
Remember to wear your Purple this month and remember to talk about Epilepsy Awareness!
This year, I want to talk about Sudden Unexplained Death in Epilepsy, also known by the acronym SUDEP. SUDEP is “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for death.” In other words, an "unexplained death in someone who has Epilepsy."
I mention a lot on this blog about how we've been told that Jenelle has a short life expectancy, but I don't think I talk much about why that is... for obvious reasons I hope. Death is not a topic that we like to discuss, let alone the possible death of one's own child. This week, I have been struggling a lot with the recent death of a friend, with Jenelle's mortality and my own. I felt this topic was very fitting this year.
My friend Enid was diagnosed with breast cancer six months after my initial diagnosis with AML four years ago. She fought hard and we mutually inspired each other in our fight. She went into remission, but a year later her cancer returned. She died last Saturday leaving a husband, and three young children; and here I am poised to celebrate my 4th year in remission in December. All the questions I have, and all the "what ifs" and that could be me - Survivor's guilt is a bitch.
The night I learned of Enid's passing, I had a rough time sleeping. All I could think about was losing Jenelle. I mention it many times, Jenelle has doubled her life expectancy. She is, however, very medically fragile - and though I understand all of the consequences, and "what ifs", I can't imagine how I'm going to function when she's gone. I talked to Brett about it, and he made me laugh of course,
"Well, you are finally catching up! I embraced that thought a long time ago and realized there is nothing I can do about it. She's going to go when it's her time, it's going to be quick, and all I can do is hug her each day, tell her I love her, and enjoy her while she's here."I see it that way too; I know every day with Jenelle is a gift. However, as she gets older, we are entering unknown territory with Jenelle, and when friends you hope will survive against all odds die, you just feel a little less secure in your optimism.
This is what is feels like to know you have a medically fragile child. To realize that she will have a "sudden, unexplained death because of her epilepsy." Patients like Jenelle with Lennox Gastaut have a high rate of morbidity due to "accidents"; in that I'm reminded of her accident falling into our neighbor's pool more than a year ago. Accidental death can occur during a seizure if the patient has a fall when seizing, or an accident driving a car when a seizure occurs (assuming the patient is driving), or drowning due to swimming when a seizure occurs, etc. One of the biggest concerns for Jenelle is Status Epilepticus - or constant seizure state, which can in rare cases can end in death. It seems like a lot of this can be prevented with common sense really, but like we realized after Jenelle's fall into our neighbors pool, anything can happen.
The strongest weapon we have against death in epilepsy, is advocacy and education. Educate yourself on what to do during a seizure, and educate yourself on what to look for. Know the recommended first aid response. Advocacy is key in helping others know what to do and what to expect. When you know what to expect and what to do, it isn't as scary as it sounds.
Since Jenelle's initial LGS diagnosis in 2005, the Internet seems to have blossomed with new information. Here are some wonderful and informative new links that I found in researching this post, and that I will add to our side bar of links.
LGS Foundation
About LGS (this site sponsored by the drug Onfi, which Jenelle started taking in July)
Epilepsy dot com
Remember to wear your Purple this month and remember to talk about Epilepsy Awareness!
Thursday, November 01, 2012
Free from the Happy Pills!
In early August, I decided to wean myself off my anti-depressants. Today, I am happy to report that I have been completely off the Happy Pills for a whole month - and finally I feel normal again. Later this month will be 4 years from my cancer diagnosis. In December, I will be 4 years in remission - one year away from the title of being "cured." It's been a wild ride and a long road.
Obviously, I'm not anti-drugs by any means. I used them briefly when Jenelle was going through the worst of her seizures, and it helped keep me focused. I remember clearly the day my doctors put me on the anti-depressants with my cancer diagnosis. It was three and a half years ago, February 2009, and I was quickly spinning into a deep depression. I was in the hospital in Santa Monica because I had no immune system (0 neutrophils) after my second round of chemo. I felt completely fine and wanted desperately out of the place. I was so desperate, there was a morning where I sat on my hospital bed, bags packed, in street clothes ready for the onslaught of doctors with their entourage of medical student that would eventually arrive at my door to tell me my numbers. I was determined to discharge myself against doctors orders if the numbers hadn't improved, and take a bus home if I had to.
Upon entering the room, the doctor told me that his students had to literally push him through my my door. The entire team knew that they were about to deliver news I did want to hear. That I still had 0 neutrophils, and that I wasn't going anywhere. I remember that feeling of disappointment; I cried hysterically and wanted desperately for there to be some way that I could go home to Brett and the kids. So I could sleep in my own bed, and feel normal and comfortable once more. After the bad news was delivered, they left me alone with a blond nurse (whose name I cannot remember) who stayed by my side all day, stoked my hair, helped me unpack and just let me sob. I was literally on suicide watch, with doctors, nurses and staff checking in on me every hour. I didn't realize it at the time, but the cancer and the chemo had sent me spiraling very quickly into depression. The next day, an anti-depressant was added to my daily drug regime and when I was finally released 4 days later (14 days total), I realized that the pills were just as important as the chemo in helping me survive the cancer.
This summer, I knew I was ready to wean off the drugs. I'm always happy and optimistic, so I knew that wasn't drug induced; however this summer I realized I hadn't been showing or really feeling any emotions. And I'm talking the good emotions like laughing so hard that you cry, or getting a lump in your throat with pride for something your child has done. Having had experience with weaning Jenelle on and off medications, I had a good idea what to expect when I started the wean. For my close family, friends and co-workers; you know the last few weeks have been quite an emotional journey! I knew it was my brain, and hormones sometimes over-reacting to tiny situations that on the happy pills wouldn't normally bother me. I was fully aware that my brain chemistry levels were slowly getting back to normal.
About three weeks ago, I would categorize my emotions as "bat shit crazy!" I had road rage, and snapped at every little scenario that sounded the slightest bit confrontational, and I was just a raging hormonal mess. It was quite a journey. But I survived, and today marks one month that I am completely anti-depressant free - it feels fantastic! I have real emotions again, even moments when I have a good cry! I'm still happy, optimistic, sarcastic and finding humor in everyday life. Only one more year until I'm officially cured... and I'm really starting to believe that will soon be a reality!
~~~~~~~
A few weeks before Jenelle's 10th birthday, Jack asked me if I ever imagined that she would be 10 years old. In all honesty... yes. I imagined a 10 year old Jenelle. And I can imagine a 16 year old Jenelle, and a 20 year old Jenelle. Doctors tend to tell you the worst to prepare you for the fight ahead when really no one knows the end result for sure.
Jenelle's life with us has been an amazing gift that has changed our lives in so many ways. We see the positive in every situation, we are compassionate, and we realize the miracle we have been so blessed to share with the world.
15 years ago today, Brett asked me to marry him. On that day, neither of us imagined the challenges that would be thrown our way - but we have survived together. What a wild ride it's been!
Obviously, I'm not anti-drugs by any means. I used them briefly when Jenelle was going through the worst of her seizures, and it helped keep me focused. I remember clearly the day my doctors put me on the anti-depressants with my cancer diagnosis. It was three and a half years ago, February 2009, and I was quickly spinning into a deep depression. I was in the hospital in Santa Monica because I had no immune system (0 neutrophils) after my second round of chemo. I felt completely fine and wanted desperately out of the place. I was so desperate, there was a morning where I sat on my hospital bed, bags packed, in street clothes ready for the onslaught of doctors with their entourage of medical student that would eventually arrive at my door to tell me my numbers. I was determined to discharge myself against doctors orders if the numbers hadn't improved, and take a bus home if I had to.
Upon entering the room, the doctor told me that his students had to literally push him through my my door. The entire team knew that they were about to deliver news I did want to hear. That I still had 0 neutrophils, and that I wasn't going anywhere. I remember that feeling of disappointment; I cried hysterically and wanted desperately for there to be some way that I could go home to Brett and the kids. So I could sleep in my own bed, and feel normal and comfortable once more. After the bad news was delivered, they left me alone with a blond nurse (whose name I cannot remember) who stayed by my side all day, stoked my hair, helped me unpack and just let me sob. I was literally on suicide watch, with doctors, nurses and staff checking in on me every hour. I didn't realize it at the time, but the cancer and the chemo had sent me spiraling very quickly into depression. The next day, an anti-depressant was added to my daily drug regime and when I was finally released 4 days later (14 days total), I realized that the pills were just as important as the chemo in helping me survive the cancer.
This summer, I knew I was ready to wean off the drugs. I'm always happy and optimistic, so I knew that wasn't drug induced; however this summer I realized I hadn't been showing or really feeling any emotions. And I'm talking the good emotions like laughing so hard that you cry, or getting a lump in your throat with pride for something your child has done. Having had experience with weaning Jenelle on and off medications, I had a good idea what to expect when I started the wean. For my close family, friends and co-workers; you know the last few weeks have been quite an emotional journey! I knew it was my brain, and hormones sometimes over-reacting to tiny situations that on the happy pills wouldn't normally bother me. I was fully aware that my brain chemistry levels were slowly getting back to normal.
About three weeks ago, I would categorize my emotions as "bat shit crazy!" I had road rage, and snapped at every little scenario that sounded the slightest bit confrontational, and I was just a raging hormonal mess. It was quite a journey. But I survived, and today marks one month that I am completely anti-depressant free - it feels fantastic! I have real emotions again, even moments when I have a good cry! I'm still happy, optimistic, sarcastic and finding humor in everyday life. Only one more year until I'm officially cured... and I'm really starting to believe that will soon be a reality!
~~~~~~~
A few weeks before Jenelle's 10th birthday, Jack asked me if I ever imagined that she would be 10 years old. In all honesty... yes. I imagined a 10 year old Jenelle. And I can imagine a 16 year old Jenelle, and a 20 year old Jenelle. Doctors tend to tell you the worst to prepare you for the fight ahead when really no one knows the end result for sure.
Jenelle's life with us has been an amazing gift that has changed our lives in so many ways. We see the positive in every situation, we are compassionate, and we realize the miracle we have been so blessed to share with the world.
15 years ago today, Brett asked me to marry him. On that day, neither of us imagined the challenges that would be thrown our way - but we have survived together. What a wild ride it's been!
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