Hi!
I have 4 living children. My oldest dd is 16 yrs old, started having seizures at 11 months of age, and my 9 yrs old dd started having seizures at 2 yrs of age.
My 16 yrs dd was seizure free for 3 years while being on meds so the neurologist took her off her meds, within 3 months she began having "starring" episodes and he waited 4 months before placing her back on meds. Since Dec. 2008 she has had upto 30 seizures a day, not counting what she has in her sleep! The meds (Topamax) has cut her seizures down to 10 while awake AND very strange "break through" episodes where she'll scream very loudly, cry and mumble her words.
She's exhausted, moody, in pain, headaches and has had to get medical leave from school so now we have a tutor come 3x week.
I'm soooooooooooooooo frustrasted, tired, scared, and upset that this doctor doesn't seem to care! I don't think he cares because I've waited for 12 days now for him to call me with her latest EEG test results! But most of all, I just want to her to be 16 yrs old and not feel like she's "dieing".
I'm so lost as to what to do, how I can help, where do I find help, what help do I need? Who do I turn too?
When she sleeps she tells me that she feels she on a rollar coaster, and the insides of her body feel like she's falling then she says she "throws her hands in the air" and that makes her wake-up. She says she does that at least 3 x a night and can't fall asleep for a while.
Any suggestions? Any help and/or direction would be greatly appreciated.
I have 4 living children. My oldest dd is 16 yrs old, started having seizures at 11 months of age, and my 9 yrs old dd started having seizures at 2 yrs of age.
My 16 yrs dd was seizure free for 3 years while being on meds so the neurologist took her off her meds, within 3 months she began having "starring" episodes and he waited 4 months before placing her back on meds. Since Dec. 2008 she has had upto 30 seizures a day, not counting what she has in her sleep! The meds (Topamax) has cut her seizures down to 10 while awake AND very strange "break through" episodes where she'll scream very loudly, cry and mumble her words.
She's exhausted, moody, in pain, headaches and has had to get medical leave from school so now we have a tutor come 3x week.
I'm soooooooooooooooo frustrasted, tired, scared, and upset that this doctor doesn't seem to care! I don't think he cares because I've waited for 12 days now for him to call me with her latest EEG test results! But most of all, I just want to her to be 16 yrs old and not feel like she's "dieing".
I'm so lost as to what to do, how I can help, where do I find help, what help do I need? Who do I turn too?
When she sleeps she tells me that she feels she on a rollar coaster, and the insides of her body feel like she's falling then she says she "throws her hands in the air" and that makes her wake-up. She says she does that at least 3 x a night and can't fall asleep for a while.
Any suggestions? Any help and/or direction would be greatly appreciated.