Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Hi everybody. My name is . I'm a 25yr old single parent of a 9yr old little girl. We live in southern California. I've never been in a support group of any kind so please bare with me when I talk about her. It's kind of hard to open up to people about her conditions, since this is all new to me. Here is the short version of her story. My daughter has had seizures since she was 8months old.... She is currently on 3 medications and also uses the vns device as her forms of treatment. She also takes a strong valume after her seizures. She can't tell you when she is going to have one. She just falls out. and falls very hard. She is a wonderful lil girl who brings such a smile to your face with her manners. She is very personable. Very outgoing. She is just an angel. She is currently in 4rth grade. She attends a regular school, but is in a severe hanicap class. She really is a blessing. She has had a rough life when it comes to her seizures. She was a very healthy baby. No illnesses of any kind. She was normal. Then she had her first seizure at the age of 8mons. When she was little(8mons to 3yrs old) she only had episodes every 6 to 9 months. But as she's getting older they are getting worse. She now has seizures every 1-5 days on average. Can't say how many she has a day because i can't tell if her staring is a seizure or not. with her its hard to differentiate with her. So her record to total is 7 rough grand mals in 1 day. Her seizures last anywhere from 10seconds to 2hours, with tremors that last up to 3mins. Rough I know. She has all different kinds of seizures. She has numerous hospital visits as all of you are very familiar with. She has been on a respirator 3 times, life support once, she has had a fully collapsed lung and a half collapsed lung, she has had todds paralysis twice now. These are just some of things she has gone through with her seizures. She also has Autism, Asthma, A developemental delay(6mons to 4+yrs behind), A speech delay, Mild brain damage, She had adhd but it is now add, She had a severe behavioral problem but doesn't have it all that much anymore. She has a mild case of sleep apnea. Well I hope that i can really get into this group. Like I've said before. I've never been in any support group. The only support i currently have is over the phone with my family which lives on the east coast, 1 brother that lives out here, 1 good friend and my boyfriend.This has always been enough for me i quess you can say. But I know I need more support. I hope to get to know a few of yall. Take care and god bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Hi , Welcome. When I read your post I just had to respond. I too am new to the group. Except for minor changes you wrote my daughters story as well. She is 11 years. God bless you and welcome to the group! <siglesias21@...> wrote: Hi everybody. My name is . I'm a 25yr old single parent of a 9yr old little girl. We live in southern California. I've never been in a support group of any kind so please bare with me when I talk about her. It's kind of hard to open up to people about her conditions, since this is all new to me. Here is the short version of her story. My daughter has had seizures since she was 8months old.... She is currently on 3 medications and also uses the vns device as her forms of treatment. She also takes a strong valume after her seizures. She can't tell you when she is going to have one. She just falls out. and falls very hard. She is a wonderful lil girl who brings such a smile to your face with her manners. She is very personable. Very outgoing. She is just an angel. She is currently in 4rth grade. She attends a regular school, but is in a severe hanicap class. She really is a blessing. She has had a rough life when it comes to her seizures. She was a very healthy baby. No illnesses of any kind. She was normal. Then she had her first seizure at the age of 8mons. When she was little(8mons to 3yrs old) she only had episodes every 6 to 9 months. But as she's getting older they are getting worse. She now has seizures every 1-5 days on average. Can't say how many she has a day because i can't tell if her staring is a seizure or not. with her its hard to differentiate with her. So her record to total is 7 rough grand mals in 1 day. Her seizures last anywhere from 10seconds to 2hours, with tremors that last up to 3mins. Rough I know. She has all different kinds of seizures. She has numerous hospital visits as all of you are very familiar with. She has been on a respirator 3 times, life support once, she has had a fully collapsed lung and a half collapsed lung, she has had todds paralysis twice now. These are just some of things she has gone through with her seizures. She also has Autism, Asthma, A developemental delay(6mons to 4+yrs behind), A speech delay, Mild brain damage, She had adhd but it is now add, She had a severe behavioral problem but doesn't have it all that much anymore. She has a mild case of sleep apnea. Well I hope that i can really get into this group. Like I've said before. I've never been in any support group. The only support i currently have is over the phone with my family which lives on the east coast, 1 brother that lives out here, 1 good friend and my boyfriend.This has always been enough for me i quess you can say. But I know I need more support. I hope to get to know a few of yall. Take care and god bless. Grace and blessings, " Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them " McNabb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 , Im just a lurker, but has she been tested for celiac disease? Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Thank you . God bless you and your family. > Hi everybody. My name is . I'm a 25yr old single parent of a 9yr > old little girl. We live in southern California. I've never been in a > support group of any kind so please bare with me when I talk about > her. It's kind of hard to open up to people about her conditions, > since this is all new to me. Here is the short version of her story. > My daughter has had seizures since she was 8months old.... She is > currently on 3 medications and also uses the vns device as her forms > of treatment. She also takes a strong valume after her seizures. She > can't tell you when she is going to have one. She just falls out. and > falls very hard. She is a wonderful lil girl who brings such a smile > to your face with her manners. She is very personable. Very outgoing. > She is just an angel. She is currently in 4rth grade. She attends a > regular school, but is in a severe hanicap class. She really is a > blessing. She has had a rough life when it comes to her seizures. She > was a very healthy baby. No illnesses of any kind. She was normal. > Then she had her first seizure at the age of 8mons. When she was > little(8mons to 3yrs old) she only had episodes every 6 to 9 months. > But as she's getting older they are getting worse. She now has > seizures every 1-5 days on average. Can't say how many she has a day > because i can't tell if her staring is a seizure or not. with her its > hard to differentiate with her. So her record to total is 7 rough > grand mals in 1 day. Her seizures last anywhere from 10seconds to > 2hours, with tremors that last up to 3mins. Rough I know. She has all > different kinds of seizures. She has numerous hospital visits as all > of you are very familiar with. She has been on a respirator 3 times, > life support once, she has had a fully collapsed lung and a half > collapsed lung, she has had todds paralysis twice now. These are just > some of things she has gone through with her seizures. She also has > Autism, Asthma, A developemental delay(6mons to 4+yrs behind), A > speech delay, Mild brain damage, She had adhd but it is now add, She > had a severe behavioral problem but doesn't have it all that much > anymore. She has a mild case of sleep apnea. Well I hope that i can > really get into this group. Like I've said before. I've never been in > any support group. The only support i currently have is over the phone > with my family which lives on the east coast, 1 brother that lives out > here, 1 good friend and my boyfriend.This has always been enough for > me i quess you can say. But I know I need more support. I hope to get > to know a few of yall. Take care and god bless. > > > > > > > Grace and blessings, > > > " Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them " McNabb > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 I'm like Carla...a lurker...but there are other deficiencies to look at as well. B6 and biotin are two that I know of...there may be others. Also, for us, certain AEDs have caused seizures. As soon as Keppra was lowered, the seizures went down...we're on only one now after 7 other failed drugs. We're now on Topamax. On 12/22/06, jinxie1945@... <jinxie1945@...> wrote: > > , Im just a lurker, but has she been tested for celiac disease? > > Carla > > Quote Link to comment Share on other sites More sharing options...
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