Wednesday, March 28, 2012
Day After Right Temporal Lobectomy
Today is day 2! Yesterday Devynne had a Right Temporal Lobectomy, her doctor removed her right Hippocampus and her right amygdala. Doc said the surgery went very well, lasted about 6 hours. She was moved into her ICU room around 645 lastnight. Woke up a little around 930 lastnight and tried to drink a little...that wasn't a good idea, she started throwing up. They removed her cathitor at that time and she said she had to pee so they let her get up out of bed. She did pretty good, got sick on the toilet. Slept pretty much through the night (with the exception of the nurses and doctors waking her up). This morning she looks a bit swollen in her right side of her face but still doing pretty good. Doctor and Occupational Therapist says she looks really good. Hoping to move to a regular room later this evening. Still a long road ahead!!
Sunday, March 4, 2012
Update
Well, we are a few weeks post procedure... the doctor was able to narrow down her seizures to her right temporal lobe. At first we weren't so sure where because within milliseconds after the seizure started it exploded to the rest of her brain but most of the activity stayed in the right portion. She is a surgical candidate and will be undergoing her Right Temporal Lobectomy on 27 March. The surgeon said he is going to take out her Hippocampus and something else but can't remember. She will be in the hospital for 2-3 days (yes that's it), she will be in ICU for the first day then moved to a regular room for the remainder. After that she will be out of school for 6-8 weeks (which is the rest of the school year). She's been doing pretty good! The double vision has been pinpointed to her medication and since lowering her morning dose she's stopped having the double vision. Now it's just prep for the surgery. I'm getting pretty nervous because the Hippocampus controls your long term memory and your emotions. I've made a memory book on the recommendations of a guy at work that had the same surgery. He said that he lost the last year of memory but it only lasted a few weeks. Hopefully this won't happen but just in case I'd like to be prepared.
As always, thanks for reading and please keep Devynne in your prayers!! Will post more as we get closer. If anyone has any questions they'd like answered please let me know. If anyone has any suggestions, please send them. Going to a support group on Tuesday, hopefully there will be a lot of people there that can help both of us out!!
As always, thanks for reading and please keep Devynne in your prayers!! Will post more as we get closer. If anyone has any questions they'd like answered please let me know. If anyone has any suggestions, please send them. Going to a support group on Tuesday, hopefully there will be a lot of people there that can help both of us out!!
Friday, February 10, 2012
Struggles!
Let me start with Devynne's procedure. Sorry I haven't posted in a few weeks. On 24 Jan 2012, Devynne had her Invasive/Subdural (Internal) EEG. Surgery went very well, her doctor but 40, yes 40 electrodes on the surface of her brain. He did this by drilling and removing three nickle sized holes in her right and left Temporal Lobe and in her Frontal lobe. They had to shave about 2-3 inches back to access the area. The surgery only lasted 3 hours, not as nerve racking as I thought. My mom was here with me and I think that made things a lot easier. she's my rock!! Doctor told me after surgery that she did very well, they will monitor her for a few days. They would pull her off her medicine and wait for seizures. He said that on average patients only stayed for 3.5 days but they could keep her up to 30 days.
I was afraid to see her in recovery, thought she's be really swollen, but she looked good. She was a little swollen but not as bad as I thought. She was pretty much out of it for a few hours. That evening when she started waking up, we tried to get her to eat a little and drink a little. That's didn't work out too good. She threw up everything she was putting in. Also that night her head started hurting, she started to cry and got really upset. She asked me why I did that to her and why I made her have the procedure. Kind of broke my heart but I knew I was doing the right thing.
Doctor warned me that she would have some leakage. See the electrodes had wires that stuck out of her skin to be plugged into a computer. (Sorry I'm jumping around) She was then monitored for seizure activity. Oh and I was told she was the Diamond Children's first pediatric subdural EEG patient, they weren't even set up for her. The hospital had to rent the electrode connection box from the manufacture. Anyway, because the wires were coming out of her head there was areas where her brain fluid would leak out; which caused major headaches! AND SHE LEAKED!! I had to change her pillow cases a few times a day because they were soaked.
Day 2 was not any better. Doctor wanted seizures and Dev gave them to him. She had four grandmal seizures just on that day. Every time she woke up, she'd seize which meant she would be out of it for hours. The whole day again didn't eat or drink anything. But the doctors still didn't put her on fluids. Mom stayed the night the first night and left late afternoon on day 2. Devynne had a few visitors as well, my boss, two of my friends came on the first day while we were in the surgical waiting room. then my 1st Sergeant came that evening. On day 2 a few more friends came and more co-workers. It was really nice to see so many people cared. Doc ordered her back on her meds, so naturally I thought this was it...we are going home!! Yay!!!
Day 3, doc came in first thing in the morning and said the neurologist wanted at least two more seizures. The reason they put her back on a portion of her meds was because the four seizures she had the day prior weren't localized, they seemed to be coming from both sides and spreading all over her brain. Putting her back on one of her meds would hopefully shut out the weaker side and cause the more dominate side to seize.
Days 4 was much better, Devynne was awake and starting to eat and drink. She wasn't going to the bathroom on her own so they decided to cath her. The doctor ordered vitals to be taken every 4 hours, neuro check every 4 hours by the RN and bladder scans every 4 hours. If she had 300 or more cc's of fluid in her bladder they had to cath her. Oh and the vitals and neuro scans were not at the same time! This poor kid was woke up several times every few hours, she didn't get much sleep. This day Devynne refused pain meds, said she wasn't hurting at all. Shocking seeing that she just had her skull drilled into 3 1/2 days ago. That's my trooper!!
Day 5 was Saturday, mom came up to give me a break and made me go home to get some rest. Oh, it was well needed rest!! Took a nice long shower, meet my friend Tasha and her two kids for lunch and went back to the hospital well rested.
Day 6, still no more seizures. I decided to let her watch a scary movie, it was called "The Ward", it was about a girl that was killed in a mental hospital (you need to know this so understand the funny part)...keep in mind this child LOVES scary movies!! The movie just got quiet and I just fell asleep when all of the sudden the movie made a loud noise and Devynne screamed out (which she never does no matter what happens in the movie). I asked what happened and while she was laughing she said the dead girl jumped out and scared her. I laid
The next few days came and went, visitors came by, Dev made friends with the nurses but no seizures.
Day 11 (yes 11 days), doctor came in that morning and said they had enough information to make a decision and the electrodes were going to be removed later that evening. I was told that at bedside the doctor would sedate her then remove the electrodes, if they got stuck they would bring her to the OR and have them removed there. I had a banquet the following day that I needed to get ready for, since the doctor wasn't coming until later that evening I decided to have a friend's daughter come sit with Devynne while I went home and gathered everything I needed. About half an hour after I left I got a text saying the doctor was there and they were removing the electrodes. I tried my hardest to get back as soon as I could. When I arrived they were done and the doctor was gone. I walked in the room and Devynne looked like she was in pain and had been crying pretty hard, I asked what happened....remember they were going to sedate her to remove the electrodes. The nurse informed me that the doctor gave Devynne 4 milligrams of Ativan (spelling) which is enough to stop her heart, and 4 doses of Morphine, enough to put a grown man down; but this wasn't enough to "sedate" my child. Yes, that was their definition of sedation! The doctor removed a few of the electrodes but two got stuck, instead of taking her to the OR like I was told, he yanked the stuck electrodes out of her head and she felt EVERYTHING!! The nurse said that she screamed so loud some of the nurses heard her on the other side of the floor. Boy was I mad!! I asked to speak with doctor regarding what happened and he sent his resident. The resident of course made it sound like it wasn't a big deal but I did let him know that this was unacceptable! I wasn't there to console my child and this was the worse thing that could have happened. It was so unsettling that the Child Life Specialist, Amy, came in and gave Devynne a brand new Nintendo DSI with her favorite game; said she had been through so much those past 11 days and mostly right then that they had to do something for her.
Devynne was released the following day. Since then she's been resting and recovering at home. On Monday we had a little scare, on our way to breakfast she started complaining of double vision then said her eyes were moving up and down, I looked and sure enough they were. I called the nurse and she said to get her to the ER right away. We went in and they got her back quickly! Doctor ordered a CT Scan to check for complications from the removal, like blood. He also ordered blood work to make sure she didn't have an infection; all came back fine. I took her to my work on Tuesday and everyone there was really surprised how good she looked. She didn't even act like she just had minor brain surgery.
The past few days have been pretty good. I took her to get her hair cut, Marissa, my hair dresser took Devynne and made her look beautiful! She fixed her hair in a way that you couldn't see her scars or her shaved area. And to top it all off, she wouldn't even charge me for the cut. Devynne's follow up is on Tuesday, hopefully we will get the results and get things moving.
I want to thank all the staff at UMC and all my friends, co-workers and especially my mom!!
I was afraid to see her in recovery, thought she's be really swollen, but she looked good. She was a little swollen but not as bad as I thought. She was pretty much out of it for a few hours. That evening when she started waking up, we tried to get her to eat a little and drink a little. That's didn't work out too good. She threw up everything she was putting in. Also that night her head started hurting, she started to cry and got really upset. She asked me why I did that to her and why I made her have the procedure. Kind of broke my heart but I knew I was doing the right thing.
Doctor warned me that she would have some leakage. See the electrodes had wires that stuck out of her skin to be plugged into a computer. (Sorry I'm jumping around) She was then monitored for seizure activity. Oh and I was told she was the Diamond Children's first pediatric subdural EEG patient, they weren't even set up for her. The hospital had to rent the electrode connection box from the manufacture. Anyway, because the wires were coming out of her head there was areas where her brain fluid would leak out; which caused major headaches! AND SHE LEAKED!! I had to change her pillow cases a few times a day because they were soaked.
Day 2 was not any better. Doctor wanted seizures and Dev gave them to him. She had four grandmal seizures just on that day. Every time she woke up, she'd seize which meant she would be out of it for hours. The whole day again didn't eat or drink anything. But the doctors still didn't put her on fluids. Mom stayed the night the first night and left late afternoon on day 2. Devynne had a few visitors as well, my boss, two of my friends came on the first day while we were in the surgical waiting room. then my 1st Sergeant came that evening. On day 2 a few more friends came and more co-workers. It was really nice to see so many people cared. Doc ordered her back on her meds, so naturally I thought this was it...we are going home!! Yay!!!
Day 3, doc came in first thing in the morning and said the neurologist wanted at least two more seizures. The reason they put her back on a portion of her meds was because the four seizures she had the day prior weren't localized, they seemed to be coming from both sides and spreading all over her brain. Putting her back on one of her meds would hopefully shut out the weaker side and cause the more dominate side to seize.
Days 4 was much better, Devynne was awake and starting to eat and drink. She wasn't going to the bathroom on her own so they decided to cath her. The doctor ordered vitals to be taken every 4 hours, neuro check every 4 hours by the RN and bladder scans every 4 hours. If she had 300 or more cc's of fluid in her bladder they had to cath her. Oh and the vitals and neuro scans were not at the same time! This poor kid was woke up several times every few hours, she didn't get much sleep. This day Devynne refused pain meds, said she wasn't hurting at all. Shocking seeing that she just had her skull drilled into 3 1/2 days ago. That's my trooper!!
Day 5 was Saturday, mom came up to give me a break and made me go home to get some rest. Oh, it was well needed rest!! Took a nice long shower, meet my friend Tasha and her two kids for lunch and went back to the hospital well rested.
Day 6, still no more seizures. I decided to let her watch a scary movie, it was called "The Ward", it was about a girl that was killed in a mental hospital (you need to know this so understand the funny part)...keep in mind this child LOVES scary movies!! The movie just got quiet and I just fell asleep when all of the sudden the movie made a loud noise and Devynne screamed out (which she never does no matter what happens in the movie). I asked what happened and while she was laughing she said the dead girl jumped out and scared her. I laid
The next few days came and went, visitors came by, Dev made friends with the nurses but no seizures.
Day 11 (yes 11 days), doctor came in that morning and said they had enough information to make a decision and the electrodes were going to be removed later that evening. I was told that at bedside the doctor would sedate her then remove the electrodes, if they got stuck they would bring her to the OR and have them removed there. I had a banquet the following day that I needed to get ready for, since the doctor wasn't coming until later that evening I decided to have a friend's daughter come sit with Devynne while I went home and gathered everything I needed. About half an hour after I left I got a text saying the doctor was there and they were removing the electrodes. I tried my hardest to get back as soon as I could. When I arrived they were done and the doctor was gone. I walked in the room and Devynne looked like she was in pain and had been crying pretty hard, I asked what happened....remember they were going to sedate her to remove the electrodes. The nurse informed me that the doctor gave Devynne 4 milligrams of Ativan (spelling) which is enough to stop her heart, and 4 doses of Morphine, enough to put a grown man down; but this wasn't enough to "sedate" my child. Yes, that was their definition of sedation! The doctor removed a few of the electrodes but two got stuck, instead of taking her to the OR like I was told, he yanked the stuck electrodes out of her head and she felt EVERYTHING!! The nurse said that she screamed so loud some of the nurses heard her on the other side of the floor. Boy was I mad!! I asked to speak with doctor regarding what happened and he sent his resident. The resident of course made it sound like it wasn't a big deal but I did let him know that this was unacceptable! I wasn't there to console my child and this was the worse thing that could have happened. It was so unsettling that the Child Life Specialist, Amy, came in and gave Devynne a brand new Nintendo DSI with her favorite game; said she had been through so much those past 11 days and mostly right then that they had to do something for her.
Devynne was released the following day. Since then she's been resting and recovering at home. On Monday we had a little scare, on our way to breakfast she started complaining of double vision then said her eyes were moving up and down, I looked and sure enough they were. I called the nurse and she said to get her to the ER right away. We went in and they got her back quickly! Doctor ordered a CT Scan to check for complications from the removal, like blood. He also ordered blood work to make sure she didn't have an infection; all came back fine. I took her to my work on Tuesday and everyone there was really surprised how good she looked. She didn't even act like she just had minor brain surgery.
The past few days have been pretty good. I took her to get her hair cut, Marissa, my hair dresser took Devynne and made her look beautiful! She fixed her hair in a way that you couldn't see her scars or her shaved area. And to top it all off, she wouldn't even charge me for the cut. Devynne's follow up is on Tuesday, hopefully we will get the results and get things moving.
I want to thank all the staff at UMC and all my friends, co-workers and especially my mom!!
Tuesday, January 24, 2012
Day 1, post op
Devynne had her Invasive EEG today, they drilled three holes the size of a nickle and placed subdural electrode strips on the surface of her brain. They are going to monitor her for a few days. Doc said she could be in the hospital for 1 to 30 days....depending on how long it takes for them to capture the right amount of info they need. But said usually it's only 3-4 days. Doctor said everything went well in surgery. She went in at 0730 and was in recovery at 1030. She's been recovery pretty good. Had a couple of set backs, she's been throwing up everything she eats or drinks. She doesn't have an IV so she really needs to start keeping stuff down.
She looks really good, doesn't look like she just had her skull drilled into :) Will keep you posted on how she's doing. Had a lot of visitors today, it was really nice. She slept through most of it. My boss, Wendy, Mike, Laura and the shirt stopped by. We also ran into one of her teachers who was here visiting another person. My mom is here with us, staying the night to make sure everything stays smooth. Thanks for all the prayers and thoughts!!
She looks really good, doesn't look like she just had her skull drilled into :) Will keep you posted on how she's doing. Had a lot of visitors today, it was really nice. She slept through most of it. My boss, Wendy, Mike, Laura and the shirt stopped by. We also ran into one of her teachers who was here visiting another person. My mom is here with us, staying the night to make sure everything stays smooth. Thanks for all the prayers and thoughts!!
Monday, January 23, 2012
Night Before Procedure
It's the night before...and I'm starting to get nervous. Mom came in to sit with us tomorrow and keep me sane. Surgery is at 0730 in the morning and should last a couple of hours. I will keep you all posted, please keep us in your prayers. More to post in the next few days.
Tuesday, January 17, 2012
1 Week from her Invasive EEG
So far seems like my mom is the only one that follows my "blog" if I can even call it that. Hopefully people will soon follow suit. Well today is 17 Jan, in 1 week from today my daughter is going in for her invasive EEG monitoring. In 1 week a doctor will look at and touch my daughter's brain. I'm trying really hard to not stress but as most people know (yes, you mom) I am a worrier and I think the worst of everything. I'm trying to remind myself that it's just a procedure and everything is going to be fine!
Here's what's been going on in our world...I started school last night, for the millionth time. I am determined to get my Bachelors before my child does :) I've been at this since 2006, although I have completed my Associates Degree already. Some of you (maybe more in the future) may think that I picked the perfect time to start back, and I'm thinking the same thing you are! Well, thought it last night as I'm sitting in my Accounting class that is scheduled for 5 1/2 hours! Oh, and Accounting...hope that you NEVER have to take it. I know it's only day one but it is kicking my butt! I have to admit that it is an accelerated course, 16 weeks shortened to 8 which in my defense is a little harder. I'm also taking an on-line class, Interpersonal Communications; maybe I will learn how to deal with a menstrating 13 year old :) Hope that doesn't offend any of you...but then again all you have to do is stop reading.
Anywho, so the past 2 weeks I've been fighting a cold and the whole time I'm telling Devynne that she needs to stay out of my face and no drinking after me, "you can't get sick or they will cancel your surgery!" What do you know, this morning she wakes up all stuffy! So what does any good mother do, I run to the drug store and buy her some meds and fill her up with them! Wish us luck!! Post more later, I have reading/homework to do....Good night mom and my hopefully future bloggers.
Here's what's been going on in our world...I started school last night, for the millionth time. I am determined to get my Bachelors before my child does :) I've been at this since 2006, although I have completed my Associates Degree already. Some of you (maybe more in the future) may think that I picked the perfect time to start back, and I'm thinking the same thing you are! Well, thought it last night as I'm sitting in my Accounting class that is scheduled for 5 1/2 hours! Oh, and Accounting...hope that you NEVER have to take it. I know it's only day one but it is kicking my butt! I have to admit that it is an accelerated course, 16 weeks shortened to 8 which in my defense is a little harder. I'm also taking an on-line class, Interpersonal Communications; maybe I will learn how to deal with a menstrating 13 year old :) Hope that doesn't offend any of you...but then again all you have to do is stop reading.
Anywho, so the past 2 weeks I've been fighting a cold and the whole time I'm telling Devynne that she needs to stay out of my face and no drinking after me, "you can't get sick or they will cancel your surgery!" What do you know, this morning she wakes up all stuffy! So what does any good mother do, I run to the drug store and buy her some meds and fill her up with them! Wish us luck!! Post more later, I have reading/homework to do....Good night mom and my hopefully future bloggers.
Sunday, January 8, 2012
New to Blogging
Well here goes, I'm new to this so please bear with me as I figure things out. I wanted to start this blog mostly as a personal diary of how my life is as a single parent with an Epileptic child. Here's my story. My daughter had her first seizure on 25 Dec 2004. Since then things have changed. We managed our lives as she was having seizures every few months. As first I didn't know how I was going to get through life. At that time I was in the military and a month shy of moving to Idaho, further away from friends and family. How could I do this? I am moving to a new state, new base, no friends, no nothing! And a new life style.
As we settled into our new lives things started to look up. We made wonderful friends right off the bat! And we found the most amazing medical team. My daughter had a few seizures for the next couple of years. Her last seizure was 21 Mar 2006. This was also the first one I ever witnessed. And as all of you know, the first one is extremely stressful and scary!! The next two years went by and it was time to talk about what was next in my daughter's medical adventure....removing her from her meds. After all it's been almost 3 years since her last one. Things were going really good, this was September 2008. Christmas morning of that year we had some friends over, my daughter had been asking for a WII and RockBand so Santa was very generous and got it for her. We had such a great time, dancing and singing...then all of the sudden my daughter starts having a Grandmal. Oh, I also forgot to mention that earlier that year I fell and ruptured a disc in my back and was being medically discharged from the military. My daughter continued to have seizures every couple of months. Once again we got settled into our new lives, living in AZ with my parents. This is where our lives really changed. In 2010, a month after I bought my first house (an accomplishment I thought I would never get to), my daughter's epilepsy turned for the worse. Father's day evening after returning home from my parent’s house my daughter started acting really weird, not sure what was going on I rushed her to the ER. She was confused and disoriented, at first the nurse and doctor said she was overdosing on drugs. DRUGS! My daughter was only 10 at the time, how on earth could she being overdosing? I tried to explain that she had seizures and I thought she was having one then. It was a really rough night, they finally took a toxicology panel and found that she didn't have any drugs in her system. They admitted her in ICU where we stayed for a week. She had a few seizures while in, then we were released. From then on she started having seizures (grandmals) once a week. She had several tests to include MRIs, CTScans, PETScans, multiple EEGs, Video EEG and so on. All the time the new doctor we found just kept telling me that she wasn't sure what was going on and why my daughter was getting worse. We started to evaluate her for surgery, you know the Lobectomy. Dr C (don't want to use her whole name) gave us a couple of options, we could go to Ohio to the Mayo Clinic where they have a great Epileptic Clinic or we could to the Internal EEG. Knowing that I didn't have money to travel to Ohio nor the time off from my new job, we opted to go for the Internal EEG. Once I called Dr. C and told her we wanted the EEG she said that she needed to talk to her "council" about this option. A week later she came back and informed us that the "council" said no, she then sent us to Phoenix to the Epilepsy Clinic there and also scheduled us for a Vagus Nerve Stimulator Consultation just in case Phoenix was a flop. Guess what, it was! Anyways, she had the VNS implanted and things got worse! Instead of one seizure she started having two back to back and they were more violent. This was March 2011. I decided to look for a new doctor (I'm leaving alot of crap out, Dr C was a joke!), her new Doc was Dr D. She is amazing, she listens to all of my concerns. She changed up Devynne's (my daughter) medications (for the millionth time). Well during this time things continued to get worse. Now Dev's having Gelastic seizures, these are seizures that cause uncontrollable laughing or crying. My daughter happens to have the laughing ones. Sometimes it's kind of funny but when she's having them every night, 5-15 that last an hour or so; it stops being funny. Here we are today, 8 Jan 2012. My daughter is scheduled for an Invasive EEG, her surgeon will drill three holes, one in her Right, Left and Frontal lobes and place electrodes on the surface of her brain, then monitor her for a week or so. Good news is, she went 65 days without having a seizure...but she had one yesterday, but we are making progress. I'm really scared, at first I just told myself that it's only a procedure but now I'm getting scared.
I hope that I will find people that are going thru the same thing, someone that can relate. I'm an open book so please ask anything you'd like. I'd like to learn from those in the same situation and maybe help those myself. More to post later. Oh and I apologize in advance for rambling :) Thanks for reading.
Allison
As we settled into our new lives things started to look up. We made wonderful friends right off the bat! And we found the most amazing medical team. My daughter had a few seizures for the next couple of years. Her last seizure was 21 Mar 2006. This was also the first one I ever witnessed. And as all of you know, the first one is extremely stressful and scary!! The next two years went by and it was time to talk about what was next in my daughter's medical adventure....removing her from her meds. After all it's been almost 3 years since her last one. Things were going really good, this was September 2008. Christmas morning of that year we had some friends over, my daughter had been asking for a WII and RockBand so Santa was very generous and got it for her. We had such a great time, dancing and singing...then all of the sudden my daughter starts having a Grandmal. Oh, I also forgot to mention that earlier that year I fell and ruptured a disc in my back and was being medically discharged from the military. My daughter continued to have seizures every couple of months. Once again we got settled into our new lives, living in AZ with my parents. This is where our lives really changed. In 2010, a month after I bought my first house (an accomplishment I thought I would never get to), my daughter's epilepsy turned for the worse. Father's day evening after returning home from my parent’s house my daughter started acting really weird, not sure what was going on I rushed her to the ER. She was confused and disoriented, at first the nurse and doctor said she was overdosing on drugs. DRUGS! My daughter was only 10 at the time, how on earth could she being overdosing? I tried to explain that she had seizures and I thought she was having one then. It was a really rough night, they finally took a toxicology panel and found that she didn't have any drugs in her system. They admitted her in ICU where we stayed for a week. She had a few seizures while in, then we were released. From then on she started having seizures (grandmals) once a week. She had several tests to include MRIs, CTScans, PETScans, multiple EEGs, Video EEG and so on. All the time the new doctor we found just kept telling me that she wasn't sure what was going on and why my daughter was getting worse. We started to evaluate her for surgery, you know the Lobectomy. Dr C (don't want to use her whole name) gave us a couple of options, we could go to Ohio to the Mayo Clinic where they have a great Epileptic Clinic or we could to the Internal EEG. Knowing that I didn't have money to travel to Ohio nor the time off from my new job, we opted to go for the Internal EEG. Once I called Dr. C and told her we wanted the EEG she said that she needed to talk to her "council" about this option. A week later she came back and informed us that the "council" said no, she then sent us to Phoenix to the Epilepsy Clinic there and also scheduled us for a Vagus Nerve Stimulator Consultation just in case Phoenix was a flop. Guess what, it was! Anyways, she had the VNS implanted and things got worse! Instead of one seizure she started having two back to back and they were more violent. This was March 2011. I decided to look for a new doctor (I'm leaving alot of crap out, Dr C was a joke!), her new Doc was Dr D. She is amazing, she listens to all of my concerns. She changed up Devynne's (my daughter) medications (for the millionth time). Well during this time things continued to get worse. Now Dev's having Gelastic seizures, these are seizures that cause uncontrollable laughing or crying. My daughter happens to have the laughing ones. Sometimes it's kind of funny but when she's having them every night, 5-15 that last an hour or so; it stops being funny. Here we are today, 8 Jan 2012. My daughter is scheduled for an Invasive EEG, her surgeon will drill three holes, one in her Right, Left and Frontal lobes and place electrodes on the surface of her brain, then monitor her for a week or so. Good news is, she went 65 days without having a seizure...but she had one yesterday, but we are making progress. I'm really scared, at first I just told myself that it's only a procedure but now I'm getting scared.
I hope that I will find people that are going thru the same thing, someone that can relate. I'm an open book so please ask anything you'd like. I'd like to learn from those in the same situation and maybe help those myself. More to post later. Oh and I apologize in advance for rambling :) Thanks for reading.
Allison
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