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New to this forum and need some help

Sat, 03/11/2017 - 17:06
Hello, I am brand new here and in need of some help. Please bear with my lengthy post. My 16-year-old daughter was diagnosed with epilepsy this week. I live in the South in a small town, and there are no pediatric neurologists in our area. The soonest we can get in to see one is in July, and this doctor is an hour and a half away. I am willing to take her anywhere to get help, but for now, we have to see an adult neurologist for immediate treatment, such as anti-seizure meds, EEG, etc. I feel strongly that my daughter has some other things going on besides epilepsy, but the doc just brushed me off. I was wondering if anyone else with an epilepsy diagnosis has any of these same issues: My pregnancy was normal and my daughter was born at 39 weeks at a healthy weight. She was born with a fractured humerus. My OB doctor feels this happened during delivery, as he heard a "pop" when she was born. He initially thought her collar bone may be broken, but it turned out to be her arm. At 7 months, she entered physical therapy, because she would not use the arm. There was some concern that she had a Bracheal Plexus injury, but she did not. However, she was developmentally delayed- late walking, late talking, never crawled or "cruised," etc. She had an MRI at 1 year, due to her developmental delays, but it was normal. She had learning difficulties from the time she entered school and had to repeat Kindergarten. She also has speech issues. In first grade, her teacher told me she thought my daughter may be having seizures, because she would "zone out" and be non-responsive for short periods of time. We had not noticed this at home, but I took her to the pediatrician, who ordered a sleep-deprived EEG, which was normal. In 4th grade, she was diagnosed with ADHD. I resisted medication for this at first, but finally relented in 6th grade, because she was having so many difficulties at school. At 13, we were referred to a pediatric endocrinologist, due to a delay of physical growth and puberty. She had another MRI and tons of testing, including genetic, all of which were normal. She is still VERY small at 16- under 5 feet and less than 100 pounds. She only started to menstruate 3 months ago. Perhaps due to her small size, speech and learning issues, etc, she is very socially isolated. She has had a very difficult time socially- especially in middle school and high school, and literally has no friends. She was picked on quite a bit in middle school, but now is mostly ignored. She told me she is "invisible" at school. At 15, she had her first seizure (that we know of for sure). I was with her at the time and had no idea what was happening. We were actually pulling into her school parking lot for a club event she was attending. She was fine one second, and then suddenly told me she was very sleepy and wanted to go home. I told her I would run into the school and let her teacher know she wasn't staying. Her teacher walked back to the car with me, and my daughter was staring off into space and wouldn't respond to us. After a couple of minutes, she went into a clonic tonic seizure. At 5 minutes, her teacher called 911, and she was taken by ambulance to a hospital about an hour away. The EMTs said our local hospital wasn't equipped to treat seizures, so that's why they took her further away. In the hospital, she had a normal EEG and was placed on Keppra. The only pediatric neurologist in this city was out of the country, so we were placed with his partner, who is an adult doctor. He said this was probably a one-time event, and he took her off Keppra after a year. She was off the Keppra for about 7 months. She had her second clonic tonic seizure a week ago, on the bus to school. Initially, the school nurse called me and said she fainted on the bus. When I went to pick her up, I felt she was acting very similarly to the last seizure. My big mistake was that I took her to our local hospital. They don't even do EEGs there. The doctor told me that I needed to calm down- that she didn't have a seizure and was probably dehydrated. She told me that sometimes kids just faint and not to blow it out of proportion. When we got home, my daughter slept for 4 hours. It finally dawned on me to call and ask to see the security video from the bus. I saw it the next day, and she definitely had another seizure. So now we have been put back on Keppra. She has been officially diagnosed with epilepsy because she has had more than one seizure. She had an EEG at the neurologist's office, but they won't give us the results until Tuesday, at our next appointment. At the appointment, he noticed her heart was racing, and she said it had been doing that all day and that she could hear it "pounding in her ears." He said she was experiencing Tachycardia and sent us to the hospital for an EKG the next day, which was yesterday. I do not have the results of this yet. The neurologist also said she should be back to "normal" now, but my daughter is still exhausted and sleeping a lot. She is still experiencing vertigo and ringing in her ears. She also said she is seeing "spots" or "dots." Her seizure was 5 days ago...is this normal? I just wondered if anyone else has had a similar experience and if all of these challenges she has had her life are connected? My gut says they are, but her neurologist says they are all "Isolated abnormalities." He did say that developmentally delayed children sometimes have epilepsy later in life, but that none of her other issues are connected. I would appreciate any insight you can share! Thank you all so much!

Comments

that's a lot of coincidental

Submitted by Amy Jo on Sat, 2017-03-11 - 19:56
that's a lot of coincidental abnormalities but if it was something easy, you would already know. and if it was something hard, that ranges from something a good research hospital could catch with effort to being a one of kind genetic mishap in one or multiple locations. genetic testing is changing with leaps and bounds each year and more things can be checked - not sure that's a productive area to focus on.there are autonomic seizures that can impact heart rate and other autonomic functions - so it's possible the racing heart is seizure related so it is something to ask your far away specialist about if the local heart testing doesn't show anything - really don't think your local specialists are trained or setup to see really unusual stuff.

that's a lot of coincidental

Submitted by Amy Jo on Sat, 2017-03-11 - 20:03
that's a lot of coincidental abnormalities but if it was something easy, you would already know. and if it was something hard, that ranges from something a good research hospital could catch with effort to being a one of kind genetic mishap in one or multiple locations. genetic testing is changing with leaps and bounds each year and more things can be checked - not sure that's a productive area to focus on.there are autonomic seizures that can impact heart rate and other autonomic functions - so it's possible the racing heart is seizure related so it is something to ask your far away specialist about if the local heart testing doesn't show anything - really don't think your local specialists are trained or setup to see really unusual stuff.

aside from possibly being

Submitted by Amy Jo on Sat, 2017-03-11 - 20:03
aside from possibly being aftereffects..some current symptoms could also be from going back on keppra (tiredness is super common for many AEDs), reaction to too high a dose, or possibly too low and having some continued minor seizures.keppra common side effects listed out at http://reference.medscape.com/drug/keppra-spritam-levetiracetam-343013#4

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