Aa
VNS
Hi,
I have a 7 year old daughter with intractible epilepsy. In October 2008, she had VNS surgery. It has made a huge difference to her, she is retaining knowledge more, interacts better with other children, doesn't regress so far with seizures, and is so much happier.
I'm more than happy to answer any questions for anybody considering this for themselves or their children. It hasn't stopped her seizures, but to be honest, I always said that they was the least of her problems, it has always been all the side issues that have impacted so heavily on our lives. She is a totally different child now, and even got a certificate in school for being so happy.
Fable xx
I have a 7 year old daughter with intractible epilepsy. In October 2008, she had VNS surgery. It has made a huge difference to her, she is retaining knowledge more, interacts better with other children, doesn't regress so far with seizures, and is so much happier.
I'm more than happy to answer any questions for anybody considering this for themselves or their children. It hasn't stopped her seizures, but to be honest, I always said that they was the least of her problems, it has always been all the side issues that have impacted so heavily on our lives. She is a totally different child now, and even got a certificate in school for being so happy.
Fable xx
I'm having VNS Surgery on April 17, 2013. What should I do to be careful with the magnet If go to like casino, pool, hot spa, shower, wear purse with wallet, etc.
It's 11 days since I had my vns implanted yes I was in pain and sore for week last few days been better today I woke in worst pain and redstreaks from ear to armpit fever and chills and not had appite since surgery with vomiting and nausea and I'm worried void I hv blood clot or blood poison ? It's weekend and dr office is closed
Hey guys,
wow, thank you so much for your comments, you've made my day :o)
Here's the link for the group http://www.facebook.com/home.php?ref=home#/group.php?gid=77112454542
Just in case you get lost on facebook - I set it up, and then managed to lose it completely and couldn't get back ha ha ha.
Fable xx
wow, thank you so much for your comments, you've made my day :o)
Here's the link for the group http://www.facebook.com/home.php?ref=home#/group.php?gid=77112454542
Just in case you get lost on facebook - I set it up, and then managed to lose it completely and couldn't get back ha ha ha.
Fable xx
Hey Guys,
well we've got our own group now, Children With Epilepsy on Facebook. See you there xxx
well we've got our own group now, Children With Epilepsy on Facebook. See you there xxx
Thank-you for the reply and for adding me on facebook....I looked at your pics and you have a beautiful family!!!! .....and your Canyon is just so sweet!!! What a darling!
Yes!! Fable is a Blessing! I was quite touched when I recieved her reply. I cried like a baby through the entire thing. I suppose because it was like someone actually understood just where I was and what I had been going through! I wanted no pitty, just someone who knew.....And she knew!
What a whirl wind this has been for us, and to make this situation worse, no one would listen. All we could get the doc to tell us was that they were not worried and he would just grow out of it and that these were "normal childhood seizures!"....When did seizures become "NORMAL?".....Now a year later and finally an MRI that showed temporal horn prominence and decreased white matter~ all bilaterally! ....and it took status epilepticus with a grand-mal in the mix right infront of the Dr. to get the meds started and the seizures to atleast s-l-o-w d-o-w-n.....
I have most deffinately found out that it is more than my job to advocate for him..No one else in this world will do that, but boy oh boy......I sure will!!!!!
Yes!! Fable is a Blessing! I was quite touched when I recieved her reply. I cried like a baby through the entire thing. I suppose because it was like someone actually understood just where I was and what I had been going through! I wanted no pitty, just someone who knew.....And she knew!
What a whirl wind this has been for us, and to make this situation worse, no one would listen. All we could get the doc to tell us was that they were not worried and he would just grow out of it and that these were "normal childhood seizures!"....When did seizures become "NORMAL?".....Now a year later and finally an MRI that showed temporal horn prominence and decreased white matter~ all bilaterally! ....and it took status epilepticus with a grand-mal in the mix right infront of the Dr. to get the meds started and the seizures to atleast s-l-o-w d-o-w-n.....
I have most deffinately found out that it is more than my job to advocate for him..No one else in this world will do that, but boy oh boy......I sure will!!!!!
Hey, sorry I haven't responded sooner. Fable is an angel, isn't she? My Canyon was born perfectly healthy and at about 3 mos old she got an infection. She went into multi organ failure, had several strokes and was in a coma for almost a month. She began seizing during her coma. She is now blind and severely brain injured.Because so much of her brain was damaged, she too has many types of seizures. She wears a helmet but still often busts out teeth or gets a concussion. She is 5 now and the light of our lives! The face book idea is great! Just remember you are your baby's very best advocate. Many times I have sat in the office of a specialist and knew more about Canyon's condition the they did. Fable is right, knowledge is power. We have very little control of most of what is happening to our babies, so the tiny bits we can influence, we must have as much understanding as possible. Fable is also right about the drugs. There are so many out there. Learn about them and which ones are working for his type of seizures. Phenobarb is a very old medication, with alot of neg side affects, There are so many new meds out there. We never know what we are capable of handling until it is handed to us. Be strong and give him a big kiss for me!!! I will KIT
Thanks again....and looking forward to starting a facebook page....I don't think that it will be too difficult. As a log in name...We could call it "the faces of Epilepsy"....There are many of us out there, I am sure...I just don't know anyone here yet!....I can see what I can set up on facebook today if you wish, just let me know first, so that we don't each sign up for the same hing...=} ha ha!
The little guy's name is Hayes. He is a sweety pie!! ....and this whole mess makes me very sad!
The little guy's name is Hayes. He is a sweety pie!! ....and this whole mess makes me very sad!
Hey Vicki,
it is overwhelming, and it's not until they get less vulnerable and tiny that the worry slows down. I hated the seizures too. The younger whe was, the more I cried after she had gone to sleep when it was over. If it was a bad one, I would panic. It's just horrible, and you feel so helpless because there really is just nothing you can do. But being strong and constant for them is something that you can do. I always talk softly and calmly to Jasmine while she's having a seizure, and if she's conscious, I always smile every time she looks at me and stroke her head, arms, or legs. Who kows what they can hear or feel, and if my soothing voice comforts her at all, then she knows I'm there and that it's going to be alright. I always try to make the day as normal as possible after a seizure so she doesn't worry. But I do give her extra time, and will read a story or just sit with her and watch a film if she's wacked out from it.
She hated the bloods with a passion too. She would scream the place down, it was awful. How bad does it make you feel? It's another of those horrible situations where you know it's the right thing to do, but you instinctively feel the need to protect them from it. Keep a check on how he's reacting to the drug increase. There are many different drugs to try, and if he doesn't respond to this one, there are plenty of other ones out there. Intractible does mean they can't stop the seizures completely, but my little girl is now down to about 3 a month, which is brilliant. If he becomes too dopey and unresponsive on the meds, it's time to chat about changing them. Jasmine was a virtual zomby for a long while, when they tried a new med, it was like turning on a switch, and I kicked myself for not mentioning it sooner!! Sometimes they have to get used to the stuff and then it gets better, but never be afraid to mention what you're thinking to your doctor. It might be 10 times a no, then the next time it might be that it's time for a change.
He sounds an absolute sweety, I can picture him playing with his little golf set lol. And that's great news too, he's learning words, and he's co-ordinated, so that's 2 positives!! He's responsive and happy, another 2!! It's such a dark time, but try to look at what he can do as well, it does help.
I don't know how to start the facebook group, I'll look into it and let you know.
Jasmine is 7 now, and getting better all the time. She knows she has seizures, but it's just a normal part of life to her, no shame, I don't hide it, so it doesn't become something to be ashamed of. I did worry about school, but so far so good, she can hold her own that one!! lol
Take care, and I'll look into facebook as soon as I can.
Fable xx
it is overwhelming, and it's not until they get less vulnerable and tiny that the worry slows down. I hated the seizures too. The younger whe was, the more I cried after she had gone to sleep when it was over. If it was a bad one, I would panic. It's just horrible, and you feel so helpless because there really is just nothing you can do. But being strong and constant for them is something that you can do. I always talk softly and calmly to Jasmine while she's having a seizure, and if she's conscious, I always smile every time she looks at me and stroke her head, arms, or legs. Who kows what they can hear or feel, and if my soothing voice comforts her at all, then she knows I'm there and that it's going to be alright. I always try to make the day as normal as possible after a seizure so she doesn't worry. But I do give her extra time, and will read a story or just sit with her and watch a film if she's wacked out from it.
She hated the bloods with a passion too. She would scream the place down, it was awful. How bad does it make you feel? It's another of those horrible situations where you know it's the right thing to do, but you instinctively feel the need to protect them from it. Keep a check on how he's reacting to the drug increase. There are many different drugs to try, and if he doesn't respond to this one, there are plenty of other ones out there. Intractible does mean they can't stop the seizures completely, but my little girl is now down to about 3 a month, which is brilliant. If he becomes too dopey and unresponsive on the meds, it's time to chat about changing them. Jasmine was a virtual zomby for a long while, when they tried a new med, it was like turning on a switch, and I kicked myself for not mentioning it sooner!! Sometimes they have to get used to the stuff and then it gets better, but never be afraid to mention what you're thinking to your doctor. It might be 10 times a no, then the next time it might be that it's time for a change.
He sounds an absolute sweety, I can picture him playing with his little golf set lol. And that's great news too, he's learning words, and he's co-ordinated, so that's 2 positives!! He's responsive and happy, another 2!! It's such a dark time, but try to look at what he can do as well, it does help.
I don't know how to start the facebook group, I'll look into it and let you know.
Jasmine is 7 now, and getting better all the time. She knows she has seizures, but it's just a normal part of life to her, no shame, I don't hide it, so it doesn't become something to be ashamed of. I did worry about school, but so far so good, she can hold her own that one!! lol
Take care, and I'll look into facebook as soon as I can.
Fable xx
I cried through the entire message you sent...Thank-you so much for talking and for UNDERSTANDING!!!!.....It has only been a year now, but I AM totally overwhelmed!
My heart IS broken........ I hate the seizures and I really hate the drugs! We go in for blood work almost every week and he has now gotten afraid to get in the car....saying "HOME" HOME HOME all the way to the hospital for the blood drawing!
We just got a call today from his last blood draw. He is still not at a therapeutic level, so they are going to increase his phenobarbital and his valproic acid!!! He is now going to take 3ml morning and night of valproic acid and 2 tsp am and pm of phenobarb....=(
I have no clue if or when they will get him to a point of being seizure free, but I hate the fact that these chemicals are in his little body!! They don't belong there..=(
He is such a happy little fello. He talks alot right now. Knows many many many single words, but says no two words connected. He loves golf and has quite a swing..HAHA
I love the idea of the face book community!! Please add me as a friend, would love to talk to you more!! Hugs to your little sweey!!!! How old is she? Blessings!! Vicki
My heart IS broken........ I hate the seizures and I really hate the drugs! We go in for blood work almost every week and he has now gotten afraid to get in the car....saying "HOME" HOME HOME all the way to the hospital for the blood drawing!
We just got a call today from his last blood draw. He is still not at a therapeutic level, so they are going to increase his phenobarbital and his valproic acid!!! He is now going to take 3ml morning and night of valproic acid and 2 tsp am and pm of phenobarb....=(
I have no clue if or when they will get him to a point of being seizure free, but I hate the fact that these chemicals are in his little body!! They don't belong there..=(
He is such a happy little fello. He talks alot right now. Knows many many many single words, but says no two words connected. He loves golf and has quite a swing..HAHA
I love the idea of the face book community!! Please add me as a friend, would love to talk to you more!! Hugs to your little sweey!!!! How old is she? Blessings!! Vicki
Maybe we could start up a facebook group so we can chat about things?
The beginning is the absolutely worst time. Watching your precious little bundle have seizures, regressing, taking all these chemicals is soul destroying.
My little girl had epilepsy from birth, her first seizure was on the day I had her. In fact, I could feel her seizing in the womb, her being my 4th, I knew what I could feel wasn't right, far too rhythmic, but of course, I just got patted on the head and told I was just an overanxious mum to be. The regression is a recurring thing with Jasmine, she has passed her little milestones over and over again. She would learn to sit up, then the seizures would take it away, so she would relearn, over and over. The same with crawling, walking, and talking. She finally gave up with the talking because like everything else, she wouldn't know she couldn't do it any more, and would just go to do what she thought she could and always fall down. But with the talking, it somehow affected her more, and eventually she gave up, and wouldn't try. Maybe it was an awareness thing, and she knew what was going to happen, so there was no point. The long postictals are horrible. You worry how long before normal reappears, or if it even will. All Jasmine's EEG's have been normal too. She has a condition called unilateral closed lip schizencephally, which is what has caused her seizures. Have you had a diagnosis with a name? I would be much easier for you to research if they can give you something tangible to look for. It may not change anything, but at least you don't feel so helpless. Also, join an epilepsy forum. One that is only for epilepsy. I'm in the uk, and the one over here is epilepsy action, that way, you get up to the minute knowledge, loads of stuff to read, and more importantly, people who are going through the same thing. You will feel so much better when you find that person who has the same diagnosis.
I will tell you what the prof who looks after Jasmine told me when she was 5 months old, and I swear it's what kept her brain functioning as well as it does.
What you do now, is important. Don't treat him as special, make him work for everything. There is a large portion of the brain that is unused, and if you can stimulate it, it might take over from some of the damaged areas.
With that advise, from that moment on, I never bought another toy that didn't have work to do for the reward. I never helped her reach things, or gave up and did stuff for her. I pushed her very hard, and it worked. She still regresses, and I still make her do everything for herself. I'm not an ogre, and there are obviously things I don't make her do, if she's exhausted from a seizure, I wouldn't expect her to walk anywhere, but I would still expect her to do everything else. All I wanted to do was wrap her up in cotton wool, but it would have been the worst thing I could have done for her. Her achievements, no matter how small, lit up my world, and my pleasure at her achievements, lit up hers. It's a two way street, and you have the traffic light controller!!
It will get better, and knowledge is the key. The more you know, the more in control you feel. Don't go and drive yourself crazy researching everything, you'll just scare yourself - speaking from experience!! But if you can pin down a diagnosis, then you can start to work out what the future holds. As it's intractible epilepsy, so be it. You can start to plan, work out what to do to make things better for you both (all, if you have a hubby and other children). Speak to your neuro about the VNS. I'm not sure they do it in such young children, but again, you're making plans, doing something positive. If you are up for VNS at a later date, then you can start to plan around that.
I know how devastating this is for you, but you're not alone, and we know the pain you're feeling.
Take care, and a big cuddle for your little man,
Fable xx
The beginning is the absolutely worst time. Watching your precious little bundle have seizures, regressing, taking all these chemicals is soul destroying.
My little girl had epilepsy from birth, her first seizure was on the day I had her. In fact, I could feel her seizing in the womb, her being my 4th, I knew what I could feel wasn't right, far too rhythmic, but of course, I just got patted on the head and told I was just an overanxious mum to be. The regression is a recurring thing with Jasmine, she has passed her little milestones over and over again. She would learn to sit up, then the seizures would take it away, so she would relearn, over and over. The same with crawling, walking, and talking. She finally gave up with the talking because like everything else, she wouldn't know she couldn't do it any more, and would just go to do what she thought she could and always fall down. But with the talking, it somehow affected her more, and eventually she gave up, and wouldn't try. Maybe it was an awareness thing, and she knew what was going to happen, so there was no point. The long postictals are horrible. You worry how long before normal reappears, or if it even will. All Jasmine's EEG's have been normal too. She has a condition called unilateral closed lip schizencephally, which is what has caused her seizures. Have you had a diagnosis with a name? I would be much easier for you to research if they can give you something tangible to look for. It may not change anything, but at least you don't feel so helpless. Also, join an epilepsy forum. One that is only for epilepsy. I'm in the uk, and the one over here is epilepsy action, that way, you get up to the minute knowledge, loads of stuff to read, and more importantly, people who are going through the same thing. You will feel so much better when you find that person who has the same diagnosis.
I will tell you what the prof who looks after Jasmine told me when she was 5 months old, and I swear it's what kept her brain functioning as well as it does.
What you do now, is important. Don't treat him as special, make him work for everything. There is a large portion of the brain that is unused, and if you can stimulate it, it might take over from some of the damaged areas.
With that advise, from that moment on, I never bought another toy that didn't have work to do for the reward. I never helped her reach things, or gave up and did stuff for her. I pushed her very hard, and it worked. She still regresses, and I still make her do everything for herself. I'm not an ogre, and there are obviously things I don't make her do, if she's exhausted from a seizure, I wouldn't expect her to walk anywhere, but I would still expect her to do everything else. All I wanted to do was wrap her up in cotton wool, but it would have been the worst thing I could have done for her. Her achievements, no matter how small, lit up my world, and my pleasure at her achievements, lit up hers. It's a two way street, and you have the traffic light controller!!
It will get better, and knowledge is the key. The more you know, the more in control you feel. Don't go and drive yourself crazy researching everything, you'll just scare yourself - speaking from experience!! But if you can pin down a diagnosis, then you can start to work out what the future holds. As it's intractible epilepsy, so be it. You can start to plan, work out what to do to make things better for you both (all, if you have a hubby and other children). Speak to your neuro about the VNS. I'm not sure they do it in such young children, but again, you're making plans, doing something positive. If you are up for VNS at a later date, then you can start to plan around that.
I know how devastating this is for you, but you're not alone, and we know the pain you're feeling.
Take care, and a big cuddle for your little man,
Fable xx
Vicki Lynn Primrose Purdy
I am on facebook too, and hope to hear from you both! Please add me...I so badly want to talk to others with a child with refractable apilepsy! Our is 21 months old....What a journey this has been. Doesn't sound as if he has quite as many seizures, but has atonic {drop}, tonic {stiffening}, absence {spacing out}, and with a high temp not too long ago had myoclonic {jerking} and a tonic clonic..The last one with a massive postictal period. Forgetting all of the names of the pics in his little picture book that he had known peior to this, sleeping long long hours and dizzy for week afterwards. He takes phenobarbital and valproic acid...He wears a helmet due to the drop seizures and hurting his sweet little head....Please add me!! How badly I would love to talk to anyone who understands and has ideas....All EEG's are normal..????? MRI shows bilateral temporal horn prominence and decreased white matter....? NO CLUE.....and NOT lol cuz...I am just lost....LOST!!!!
I am on facebook too, and hope to hear from you both! Please add me...I so badly want to talk to others with a child with refractable apilepsy! Our is 21 months old....What a journey this has been. Doesn't sound as if he has quite as many seizures, but has atonic {drop}, tonic {stiffening}, absence {spacing out}, and with a high temp not too long ago had myoclonic {jerking} and a tonic clonic..The last one with a massive postictal period. Forgetting all of the names of the pics in his little picture book that he had known peior to this, sleeping long long hours and dizzy for week afterwards. He takes phenobarbital and valproic acid...He wears a helmet due to the drop seizures and hurting his sweet little head....Please add me!! How badly I would love to talk to anyone who understands and has ideas....All EEG's are normal..????? MRI shows bilateral temporal horn prominence and decreased white matter....? NO CLUE.....and NOT lol cuz...I am just lost....LOST!!!!
My maiden name is Berkabile...So my profile is under Heidi Berkabile Crawford. Send me a friend request!! I am sooooo glad to hear that it doesn't hurt. I know every one is different, but our girls seem to be pretty similar. Well....very different too.
Hi!!
I've been checking every day to see how it went, I'm so glad it's all over for you, and excited to see how she gets on with it. My little girl is thin too, I think it's all the seizure activity, when you think of all that muscle use every time they seize, it's no wonder. I was told that it may show now, but being girls, when they develop breast tissue, it wont be noticeable. You don't notice it so much after a while, now that the scars aren't so red, it doesn't shout out so much.
I'm not suprised whe doesn't want to be touched, my little one was the same, she was very uncomfortable for about a week, but once it started to settle, she surprised herself I think. She was so sure it was going to hurt for ever, and was very surprised when she could lift her arm and there was no pain lol. Luck for your little one not having any staples, I wish they hadn't given mine any. I think that was as traumatic as the surgery for her. They took them out after only a week, so it was still very sore, and to have to undergo that was cruel. I don't know why they didn't give her a sedative.
I read about the depression side of things with the implant, so at least they wont get down about things!! I'll book us a couple of beds, we can get a couple of nights sleep, and a built in happy pill. sounds great!!
My little one says it tickles when it pulses. Not as a general rule, but when they first turn it up, and when I use the magnet. It tickles and makes her cough. It doesn't hurt her at all, she just doesn't like the feeling. She doesn't notice it if she's seizing, only if she's having a prolonged post ictal, or like I said, when they first increase it. I've never heard about the passing your tongue over a battery!! Yuck! so far, she's not had a problem with it at all.
I do have a facebook acount, do you want to pm me an invite?
I'm so glad it's going well, can't wait to see little ones face on facebook :o)
Fable xx
I've been checking every day to see how it went, I'm so glad it's all over for you, and excited to see how she gets on with it. My little girl is thin too, I think it's all the seizure activity, when you think of all that muscle use every time they seize, it's no wonder. I was told that it may show now, but being girls, when they develop breast tissue, it wont be noticeable. You don't notice it so much after a while, now that the scars aren't so red, it doesn't shout out so much.
I'm not suprised whe doesn't want to be touched, my little one was the same, she was very uncomfortable for about a week, but once it started to settle, she surprised herself I think. She was so sure it was going to hurt for ever, and was very surprised when she could lift her arm and there was no pain lol. Luck for your little one not having any staples, I wish they hadn't given mine any. I think that was as traumatic as the surgery for her. They took them out after only a week, so it was still very sore, and to have to undergo that was cruel. I don't know why they didn't give her a sedative.
I read about the depression side of things with the implant, so at least they wont get down about things!! I'll book us a couple of beds, we can get a couple of nights sleep, and a built in happy pill. sounds great!!
My little one says it tickles when it pulses. Not as a general rule, but when they first turn it up, and when I use the magnet. It tickles and makes her cough. It doesn't hurt her at all, she just doesn't like the feeling. She doesn't notice it if she's seizing, only if she's having a prolonged post ictal, or like I said, when they first increase it. I've never heard about the passing your tongue over a battery!! Yuck! so far, she's not had a problem with it at all.
I do have a facebook acount, do you want to pm me an invite?
I'm so glad it's going well, can't wait to see little ones face on facebook :o)
Fable xx
I am not sure if you are familiar with "facebook.com" but I have a profile on that site that will tell you all about my family and Canyon and lots of photo's too. It is very easy and free to set up an account. If you are interested or are already on facebook let me know so I can send you a friend request.
OK...Things have settled down a little. The surgery is over and went well! Now I just have to get my ulcer checked!! LOL Thank you for the advice on the baggy clothes for her trip home. She would have never endured the 3 hour drive in her usual zip-up jammies! She is sore and still pretty uncomfortable. She has always loved the bath, but she can't have one for about two weeks so I am sad that she has little comfort. She doesn't really want to be held, or even touched. She is so cuddly usually, and the other kids want so much to make her feel better by stroking her or holding her, but she just not want to be bothered. I tell them to be patient, when she starts to heal, she will be all over them again.
The Neurologist is going to turn her VNS on in 2 weeks. I would be a basket case by 6 weeks! LOL Canyon is so thin, that the device is really noticeable. As far as looks go, I don't care. I just worry about it sticking out so much. The surgeon suggested a protective vest until she puts on a little more weight. What do you think?
I was surprised to find out that all of her stitches are desolvable.
Gee, I am just so excited! She is pretty crabby to the other kids at school too! I did learn that the VNS is also implanted and actually started for the treatment of severe depression. That explains why all these seizure patients are so happy now! (maybe I'll get one!) LOL
Well, thank you again and I will let you know how she is doing. I would love to see a picture of your sweet girl if you are comfortable with that. Tell her to keep up the good work in school! KIT
Oh, one more question....What does your little girl say it feels like when it pulses? Since Canyon can't talk and any one else I have heard from are adults, I wonder what a child says it is like. Cyberonics said it feels like eating "Pop-Rocks", someone else said it feels like putting a 9 volt battery to your tongue. What does she say?
The Neurologist is going to turn her VNS on in 2 weeks. I would be a basket case by 6 weeks! LOL Canyon is so thin, that the device is really noticeable. As far as looks go, I don't care. I just worry about it sticking out so much. The surgeon suggested a protective vest until she puts on a little more weight. What do you think?
I was surprised to find out that all of her stitches are desolvable.
Gee, I am just so excited! She is pretty crabby to the other kids at school too! I did learn that the VNS is also implanted and actually started for the treatment of severe depression. That explains why all these seizure patients are so happy now! (maybe I'll get one!) LOL
Well, thank you again and I will let you know how she is doing. I would love to see a picture of your sweet girl if you are comfortable with that. Tell her to keep up the good work in school! KIT
Oh, one more question....What does your little girl say it feels like when it pulses? Since Canyon can't talk and any one else I have heard from are adults, I wonder what a child says it is like. Cyberonics said it feels like eating "Pop-Rocks", someone else said it feels like putting a 9 volt battery to your tongue. What does she say?
Wow, Cyberonics called you!! Outstanding! I got to see the professor that was doing the op, and now a sister who deals with all the switching up. I was told this is best for drops, but they also tell you it can take up to a year to reach its full potential. The hardest part is waiting for it to be turned up to a therapeutic level - you get all excited because it's 6 weeks until they switch it on, then you have to wait another 4 for them to start switching it up, I was chomping at the bit by then. I've found it has cured 90% of the side issues she had. The anger, frustration, temper, aggression, exaggerated emotions, the way she would go out of her way to not do what was asked of her. She is much less easily distracted at school, her reading has improved no end, she is happy in class, whereas she would normally scowl at the other kids lol. And the nightmares are hardly there now. Her aura before a fit would be a really nasty hallucination, but now, she barely has them.She would see spiders all over her, witches, or whatever topic they were doing in school. I think her being less sleep deprived has made a big difference to her too. I sooo hope you get some sleep. It's bloody awful to start with lol, you get some sleep, and you're more tired than you were when you were running on auto pilot lol.
I went into it not expecting anything, because no drugs have ever worked to control things, so to people like you and me, who have so much to deal with, anything is a blessing. You'd be surprised how quickly you forget how bad it was once things get better! Make a list of absolutely everthing, then, when you don't think much is happening, go and check that list, even something small that's not happening anymore can give you such a boost.
I understand completely what you mean about the other children. Mine have always loved her too, and I've had to make sure they don't tailor their lives around her difficulties, which of course is hard, because we're so tired!! Now, my little one (Jasmine) is 7, her next oldest brother is 15 older sister of 16, and big brother of 24. The worry has got so much less for them, they can accept things more easily. It does give them a wonderful outlook on life having experienced a sister with special needs, I am so proud of them. They are so caring, to all children, I think there are positives in all things, and one of them for our situation is seeing that nurturing blossom in our other children. Without it, they would have much more of a selfish streak, as is natural for kids. You have to thank yourselves for that, without you being the kind of parents you are, and teaching them about life, dealing with Canyon Hope, they wouldn't be the children they are today. And you're obviously doing it right, because they worry about her, instead of feeling jealous and left out. No easy task with no sleep!!
If things are bad, I always tell my kids we're circling the wagons, and that we all look out for each other. We obviously have the same outlook.
Of course I don't mind you reading my entries out, there's nothing private in this thread, anything to help. I think the men can easily get forgotten in all this. They have a lot to cope with too, after all, she's his baby too! I wonder how often he gets a hug, I bet not as much as we do.
Not long now!! I went and had lunch in the hospital canteen when Jasmine went down to theatre, and browsed the hospital shops, bought her a singing flower, that I could strangle now lol, and tried to read magazines. Sounds great in theory, but I just couldn't concentrate!! Ooh, one thing I forgot to mention, when you pack for her, remember that there is an incision under the arm, and on the neck, so when they come to check the dressing, and when you come to put on her nightclothes or going home clothes, you need either shoe string straps with a loose underarm, or something baggy under the arms. And she might not be able to lift her arm after, so bear that in mind when you pack her going home clothes.
I'm getting excited for you!!
Take care,
Fable xx
I went into it not expecting anything, because no drugs have ever worked to control things, so to people like you and me, who have so much to deal with, anything is a blessing. You'd be surprised how quickly you forget how bad it was once things get better! Make a list of absolutely everthing, then, when you don't think much is happening, go and check that list, even something small that's not happening anymore can give you such a boost.
I understand completely what you mean about the other children. Mine have always loved her too, and I've had to make sure they don't tailor their lives around her difficulties, which of course is hard, because we're so tired!! Now, my little one (Jasmine) is 7, her next oldest brother is 15 older sister of 16, and big brother of 24. The worry has got so much less for them, they can accept things more easily. It does give them a wonderful outlook on life having experienced a sister with special needs, I am so proud of them. They are so caring, to all children, I think there are positives in all things, and one of them for our situation is seeing that nurturing blossom in our other children. Without it, they would have much more of a selfish streak, as is natural for kids. You have to thank yourselves for that, without you being the kind of parents you are, and teaching them about life, dealing with Canyon Hope, they wouldn't be the children they are today. And you're obviously doing it right, because they worry about her, instead of feeling jealous and left out. No easy task with no sleep!!
If things are bad, I always tell my kids we're circling the wagons, and that we all look out for each other. We obviously have the same outlook.
Of course I don't mind you reading my entries out, there's nothing private in this thread, anything to help. I think the men can easily get forgotten in all this. They have a lot to cope with too, after all, she's his baby too! I wonder how often he gets a hug, I bet not as much as we do.
Not long now!! I went and had lunch in the hospital canteen when Jasmine went down to theatre, and browsed the hospital shops, bought her a singing flower, that I could strangle now lol, and tried to read magazines. Sounds great in theory, but I just couldn't concentrate!! Ooh, one thing I forgot to mention, when you pack for her, remember that there is an incision under the arm, and on the neck, so when they come to check the dressing, and when you come to put on her nightclothes or going home clothes, you need either shoe string straps with a loose underarm, or something baggy under the arms. And she might not be able to lift her arm after, so bear that in mind when you pack her going home clothes.
I'm getting excited for you!!
Take care,
Fable xx
You Rock!! What an amazing mom you are! You too are lucky to have each other. I do remember the company who actually makes the VNS, Cyberonics, calling me. They told me that this is the best treatment out there for drop attacks. It is hard to be realistic and wise knowing that nothing is a guarantee. Because I am so excited! Like you , I am so far beyond sleep deprived I don't know what I would do with more than a couple hours of sleep at a time! lol Mostly I am anxious for my other children to fall into some sort of normalcy...whatever that is?! lol They are so good to her and have been such troopers! I don't think they have ever felt anything but love toward her and her situation, but as a mother I long for them to worry more about losing teeth or sleepovers, rather than their sick sister. I know it sounds a little cheesy, but I have always told my children that the greatest gift I will ever give them is each other.I want them to rely on each other. Being able to share and learn from you has been a blessing! I can't thank you enough! I read one of your entries to my husband (hope you don't mind) and he got tears of relief in his eyes. He feels like he has to be my "rock" so I don't always know how much he is worrying. We will keep you updated and you please do the same!! Thank you again and tell your baby girl hello from mine. Her name is "Canyon Hope"
Hi, I know how lucky she is, it's really unbelievable that she's as uncompromised as she is. Her condition is called unilateral, closed lip, schizencephally, and if you read the prognosis on that, I have no idea why she is as well as she is. Both conditions have very difficult prognoses. She was diagnosed at 5 months, after me pushing and pushing to get someone to listen to me. She's my 4th child, so I kinda knew what I was talking about by then, but nobody would listen to me. She was fitting in my womb, I knew, and when I tried to get help, they just told me she was having hiccups. Grrrrr. I know what hiccups feels like after 4!! It took me actually filming her having a seizure before anyone would take notice. Her first seizure was on the day I had her. But they didn't believe me!! They told me it was natural to be anxious when a baby is first born. She went on to have drops when she was first home, I thought she had died, you know, that rag doll thing, light goes out in the eyes. They told me she had colic LMAO, then a milk allergy!! When she was diagnosed, her doctor had a conversation with me I will never forget. She sat me down and told me about her condition, then said that there were ways that I could help her, and that there was so much of the brain that was unused, that if I pushed her really hard, I might be lucky, and that part of the brain might take over. Well from that moment onwards I made her poor little life hell!! lol. She had left sided weakness because her lesion is on the right side of her brain, so I used to put the bottle in her mouth, and then let go, she would instinctively raise both hands, so I would position them on the bottle properly, and then let go again. On and on we went with this. She used to get so frustrated, but she did it! And I never looked back. Every thing I ever did with her, I made her have to do some herself. Obviously she was very lucky in that she had been developing normally up to that point, and that's why she told me to do it, so that I maintained her brain function to the best of my abilities. Even then, I was told the best I could ever hope for was her in mainstream education but with a care asssistant with her at all times, but that it was unlikely she would make it to mainstream. That woman was the best thing that could have happened. It may have made my little ones childhood one long battle, but it worked!
Jeez, those other sites. I've been on some, and I know what you mean. Let's focus on what they can do, and how to help each other, not what they can't do! We all know their lives are tough, but they're still our gorgeous little children, and just that smile you get in the morning is enough to wash away the night before. That's one thing I just love the VNS for. I haven't had a proper night's sleep in 7 years. But now, there are nights when I go to sleep, and actually wake up the next morinng!! Yayy!!
I think the drops are the worst ones. Your poor little girly, I remember it well. Mine had them worst of all when she was 2. She would do the same, just as if someone had turned the switch off, bang, on the floor, always head hitting the hardest. It's horrible. Like I said though, there was a little boy in having a VNS the same time as mine, and he has had a real difference in the amount of drops he's been having. I don't know the actual amounts, because of course, theyre not allowed to discuss other patients, but I know it's been a great success, they told me that much. It hasn't taken them away completely, but it has made a big difference.
I'm in the UK, so quite some distance!! But it's great to chat, and I'm keeping everything crossed for your VNS, just keep asking, I'm 6 months in now, so I've got that crystal ball thing going on lol.
Take Care
Fable xx
Jeez, those other sites. I've been on some, and I know what you mean. Let's focus on what they can do, and how to help each other, not what they can't do! We all know their lives are tough, but they're still our gorgeous little children, and just that smile you get in the morning is enough to wash away the night before. That's one thing I just love the VNS for. I haven't had a proper night's sleep in 7 years. But now, there are nights when I go to sleep, and actually wake up the next morinng!! Yayy!!
I think the drops are the worst ones. Your poor little girly, I remember it well. Mine had them worst of all when she was 2. She would do the same, just as if someone had turned the switch off, bang, on the floor, always head hitting the hardest. It's horrible. Like I said though, there was a little boy in having a VNS the same time as mine, and he has had a real difference in the amount of drops he's been having. I don't know the actual amounts, because of course, theyre not allowed to discuss other patients, but I know it's been a great success, they told me that much. It hasn't taken them away completely, but it has made a big difference.
I'm in the UK, so quite some distance!! But it's great to chat, and I'm keeping everything crossed for your VNS, just keep asking, I'm 6 months in now, so I've got that crystal ball thing going on lol.
Take Care
Fable xx
WOW! Thanks again so much! My daughter also had infantile spasms. (which is considered west syndrome) She too has seizures in all three of the same categories. She has to wear a helmet because her drop attacks are so sudden and severe. She has busted out 4 teeth, received more than one major concussion, and knocked herself unconscious many times. You are very lucky! are you aware of the statistics on infantile spasms? It's something like over 80% of children who have had them end up being severely mentally retarded and suffer from all sorts of brain injury. For your little girl to be still mainstreaming is WONDERFUL!!! Where are you from? I have so enjoyed having someone to exchange info with. I did join a chat group once, a long time ago when my daughter first got sick. I hated it! I felt like everyone was just whining and complaining about how sick their child was and how hard life is. I need more positive conversation in my life. Don't get me wrong I am a realist at heart, And I know it is what it is. But being crabby and angry about it only changes one thing. Who I am. Anyway..........thank you so much we will KIT
Oh good, I'm glad it's helping, do we worry or what?! Just shows how much you love her.
My little girl (7) has drop attacks, absences, partials, and tonic clonic. When she was a baby, she had Infantile Spasms, and I think she had Wests Syndrome, but her prof wont lable her, because she says that labelling her with a syndrome isn't always the way to go. This is because she is not mentally challenged, she is a bit behind, but not enough to drop her down a year, or take her out of mainstream education. Before the VNS, she could have anything up to 3 major seizures, 4 drop attacks and 3 absences in a day. She goes up and down with her seizures, she can have a really good spell, then it all comes back. Since the VNS, the seizures are much weaker, and most times, I can be back in bed in literally 5 minutes!! She starts seizing, I go in, swipe the magnet a couple of times, and that's that!! She does still have the ones that the magnet doesn't control sufficiently, but these are rare, and I think personally, that if it wasn't for the device, she would be having a really bad run of them at that time, and it's actually holding it all at bay. We also haven't had it turned up as far as it can go yet!! The drop attacks have stopped altogether, the absences are only when she's ill or very tired, and the partials are tonics are much less as well. She now averages 3 seizures a week, but her recovery is just brilliant. Instead of being post ictal for ages, as soon as the seizure's over, it's over, no after effects. Before surgery, she could be stuck in a seizure for 3 - 4 days.
The device hasn't been an issue at all. It was sore to start with, naturally, but no, I can pick her up under her arms just the same, I just have to be aware that it's there, because I think sometimes it may press on her when I lift her, but apart from that, you wouldn't even know she had it. Nothing damages it, you just can't hang around the xray machines at airports, but that's actually a good thing, because they give you a piece of paper to carry around explaining that, and you just go straight through!! No probs with microwaves or anything like that, I wouldn't know about metal detectors, but unless they have a very strong magnet in them, which I don't believe they do, that shouldn't matter. You get given 2 magnets, one for the school and one for you. The school will get trained in how to use them, make sure you set up an appointment to chat with them about it. They come with a velcro wrist strap for you to either wear it, or attach it to something, but because of the very strong magnet, you can't have it close to your pc, phone, or credit cards. Out of everything, that has been the hardest thing to remember lol.
Don't worry about asking, ask anything you like, I'm only too pleased to help.
Take Care
Fable xx
My little girl (7) has drop attacks, absences, partials, and tonic clonic. When she was a baby, she had Infantile Spasms, and I think she had Wests Syndrome, but her prof wont lable her, because she says that labelling her with a syndrome isn't always the way to go. This is because she is not mentally challenged, she is a bit behind, but not enough to drop her down a year, or take her out of mainstream education. Before the VNS, she could have anything up to 3 major seizures, 4 drop attacks and 3 absences in a day. She goes up and down with her seizures, she can have a really good spell, then it all comes back. Since the VNS, the seizures are much weaker, and most times, I can be back in bed in literally 5 minutes!! She starts seizing, I go in, swipe the magnet a couple of times, and that's that!! She does still have the ones that the magnet doesn't control sufficiently, but these are rare, and I think personally, that if it wasn't for the device, she would be having a really bad run of them at that time, and it's actually holding it all at bay. We also haven't had it turned up as far as it can go yet!! The drop attacks have stopped altogether, the absences are only when she's ill or very tired, and the partials are tonics are much less as well. She now averages 3 seizures a week, but her recovery is just brilliant. Instead of being post ictal for ages, as soon as the seizure's over, it's over, no after effects. Before surgery, she could be stuck in a seizure for 3 - 4 days.
The device hasn't been an issue at all. It was sore to start with, naturally, but no, I can pick her up under her arms just the same, I just have to be aware that it's there, because I think sometimes it may press on her when I lift her, but apart from that, you wouldn't even know she had it. Nothing damages it, you just can't hang around the xray machines at airports, but that's actually a good thing, because they give you a piece of paper to carry around explaining that, and you just go straight through!! No probs with microwaves or anything like that, I wouldn't know about metal detectors, but unless they have a very strong magnet in them, which I don't believe they do, that shouldn't matter. You get given 2 magnets, one for the school and one for you. The school will get trained in how to use them, make sure you set up an appointment to chat with them about it. They come with a velcro wrist strap for you to either wear it, or attach it to something, but because of the very strong magnet, you can't have it close to your pc, phone, or credit cards. Out of everything, that has been the hardest thing to remember lol.
Don't worry about asking, ask anything you like, I'm only too pleased to help.
Take Care
Fable xx
Thank you so much for the information!!!! It calmed my nerves. If you dont mind me asking.... what kind of seizures does your little girl have and how often? I know you said that the VNS did not stop her seizures, but are they less often or shorter? Do you have to be careful about the device being damaged or anything since it is just under the skin? Does her school have a magnet they can use there? Has anything interfered with the device such as a microwave or metal detector? Sorry for all of the questions. I know we will learn these things I am just anxious to know as much as possible before hand. Thank you again! And pass on a hug for me!!
I am so sorry, I didn't get a notification that somebody had replied to my thread!! I wasn't ignoring you, I just didn't know.
Ok, well when she comes back from theatre, she will have roughly, a 10cm wound under her arm. My daughter had staples there, and there were 15 of them. They are very close together, so don't be allarmed at the number, but I wished someone had told me more of what to expect when my little girl had it done. You are far more prepared mentally when you don't get any surprises I think. She will have redness and brusing tracking from that, up to her neck, where they have fed the wires to connect to the vagus nerve. On her neck, will be a similar sized wound, but that was held together with self disolving internal stitches and those sterry strip things (sorry, I don't know how to spell it!!) Lots of dressings, and she'll be quite sore. My guy put up a paracetomol drip and injected local aneasthetic into the surgery sites to minimize the pain so that she was comfortable when she woke up, and could have a good sleep to get over it. It was brilliant, and it wasn't until she woke up that night (she went down at 08.30) after an afternoon sleep that she started to get uncomfortable. It takes 2 or 3 days for it all to settle and most of the pain to go away. Once they get used to the feeling, they do seem to adapt very quickly. There was a little boy on the ward who had the same op, and he didn't even notice it!! He was non verbal too and had many other issues. He was having 100,s of drop attacks every day, and had to wear a helmet permanently, and had one of those rubber harnesses so his mum could hold onto him and help break his fall. If she wasn't holding him, he was in a wheelchair. He is much better too, and it has had a profound effect on his drops.
It will be tested in theatre, they give it a burst to test the settings, and so you may well find that you see a difference immediately from that burst, but of course you may not!! Frustrating isn't it?! It doesn't hurt at all when it's turned on. Not even slightly. The only thing they feel is a tickling. It does affect the voice a little bit, once it was turned up, her voice started to be a bit wobbly, and kind of trilly, when it pulsed. Every time they turn it up, she has a cough, her voice trills a bit more, and she can feel the tickle. She has it done on a Friday, and by Monday, she's stopped coughing, the tickle has gone, and she only trills when she's tired. When you use the magnet, it gives a much stronger pulse, so all the effects are felt more keenly, but because you use it for a seizure, they don't notice anyway. Too much else going on elsewhere lol. They keep turning it up every 4 weeks, and it's all done by a hand held computer, which is held over the implant, through clothes, so no undressing, then they tap a PDA, and up it goes. Done in seconds. If she has any problems, they can turn down some settings, turn up others, they just tailor it to the individual child.
Please ask anything you need, I so wish I had had somebody to ask before my little girl had it done, so I really don't mind in the slightest.
Good luck with it, don't be too nervous, it really isn't as bad as it feels, and once it's over and she's home, it's just a case of keeping everything nice and clean so it heals beautifully. Oh yes, and the scar on her neck isn't even visible now, in the space of 6 months. The one under her arm is still red and you can see it, but it doesn't bother her at all, and will just fade eventually tool.
Take care, and good luck!! Give your little girly a big hug from me,
Fable xx
Ok, well when she comes back from theatre, she will have roughly, a 10cm wound under her arm. My daughter had staples there, and there were 15 of them. They are very close together, so don't be allarmed at the number, but I wished someone had told me more of what to expect when my little girl had it done. You are far more prepared mentally when you don't get any surprises I think. She will have redness and brusing tracking from that, up to her neck, where they have fed the wires to connect to the vagus nerve. On her neck, will be a similar sized wound, but that was held together with self disolving internal stitches and those sterry strip things (sorry, I don't know how to spell it!!) Lots of dressings, and she'll be quite sore. My guy put up a paracetomol drip and injected local aneasthetic into the surgery sites to minimize the pain so that she was comfortable when she woke up, and could have a good sleep to get over it. It was brilliant, and it wasn't until she woke up that night (she went down at 08.30) after an afternoon sleep that she started to get uncomfortable. It takes 2 or 3 days for it all to settle and most of the pain to go away. Once they get used to the feeling, they do seem to adapt very quickly. There was a little boy on the ward who had the same op, and he didn't even notice it!! He was non verbal too and had many other issues. He was having 100,s of drop attacks every day, and had to wear a helmet permanently, and had one of those rubber harnesses so his mum could hold onto him and help break his fall. If she wasn't holding him, he was in a wheelchair. He is much better too, and it has had a profound effect on his drops.
It will be tested in theatre, they give it a burst to test the settings, and so you may well find that you see a difference immediately from that burst, but of course you may not!! Frustrating isn't it?! It doesn't hurt at all when it's turned on. Not even slightly. The only thing they feel is a tickling. It does affect the voice a little bit, once it was turned up, her voice started to be a bit wobbly, and kind of trilly, when it pulsed. Every time they turn it up, she has a cough, her voice trills a bit more, and she can feel the tickle. She has it done on a Friday, and by Monday, she's stopped coughing, the tickle has gone, and she only trills when she's tired. When you use the magnet, it gives a much stronger pulse, so all the effects are felt more keenly, but because you use it for a seizure, they don't notice anyway. Too much else going on elsewhere lol. They keep turning it up every 4 weeks, and it's all done by a hand held computer, which is held over the implant, through clothes, so no undressing, then they tap a PDA, and up it goes. Done in seconds. If she has any problems, they can turn down some settings, turn up others, they just tailor it to the individual child.
Please ask anything you need, I so wish I had had somebody to ask before my little girl had it done, so I really don't mind in the slightest.
Good luck with it, don't be too nervous, it really isn't as bad as it feels, and once it's over and she's home, it's just a case of keeping everything nice and clean so it heals beautifully. Oh yes, and the scar on her neck isn't even visible now, in the space of 6 months. The one under her arm is still red and you can see it, but it doesn't bother her at all, and will just fade eventually tool.
Take care, and good luck!! Give your little girly a big hug from me,
Fable xx
Fable, My 5 year old daughter is scheduled to have the VNS April 9. We are so nervous! After all the failed medication, we know this is her best option. My daughter is blind, and severely brain injured, so our situations may be different. I was just wondering what to expect after the procedure. We have done our homework on the device it self, we are aware of some of some of the side effects, but with her not being able to verbally communicate, I worry so much about the pain she will experience both from the surgery and then when it is turned on. Any Input would be very helpful.
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