Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

My 16-year-old was just diagnosed with epilepsy

Sat, 03/11/2017 - 17:32
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 also put this post in the "parents and caregivers" section. Sorry for the duplication, but I'm just trying to find the right place for this! I would appreciate any insight you can share! Thank you all so much!

Comments

Yes, yes, yes and YES! All

Submitted by mereloaded on Mon, 2017-03-13 - 17:42
Yes, yes, yes and YES! All connected!The zoning out early episodes were seizures. The teacher back then was absolutely correct. The thing is epilepsy can start slowly with seemingly random and Infrequent symtomps that doctors often attribute to ADHD, panic attacks, dehydration, puberty, nothing etc.etc.but the truth is the body fights and fights those symptoms until one day they can't fight any longer.My son was developmentally delayed. He had a speech delay. He was on speech and math help until 5th grade. I visited many many specialist because like you. I knew something was off, but no one would hear me! I visited allergists, ENTs, behavioral specialists etc.etc. everyone told me I was crazy. I had to beg his doctor for ADD medication because what else could explain his lack of focus bf poor organizational skills? Teachers were frustrated because he had passed genetic, IQ, educational disabilities and autism tests with flying colors and could not help anymore without a diagnosis, Reluctantly ypthe doctor prescribed him concerta, but it only took one dose to make him twitchy and full of tics. I throw away the medication and went on with our lives as is. Then around middle school, he started to become dizzy occasionally. He would look pale and say he needed to sit down. That was it. This would happen about once or twice a year, pediatrician said it was probably sugar problem, syncope etc. then he started to vomit randomly, that and the sudden dizziness was more common. Fast forward to freshman year of high school and he gets a seizure upon awakening. Then EVERYTHING made sense. Epileosy explained absolutely everything and no one had a clue and not listened to me. I was actually relieved to have a diagnosis at last. Treatment has made a huge difference in his life from much better speech, to better grader, much better focus etc.etc.etc. I wish I would have known sooner but it wasn't for lack of trying!Thinking back, he must have suffered since being a toddler. His speech problem and his expressive language problem is directly related to his Epileosy. His seizures originate from the left frontal lobe, in the side that deals with speech, language, and organizational skills. No wonder. He is also left handed, so that totally makes sense.My son had a traumatic birth with the umbilical cord wrapped around his neck 3 times. He was blue upon birth because of lack of oxygen. Doctors were so afraid that handed me the baby and left like bandits. It was their fault as so begged them in agony after 16 hours of labor to help my child and give me a c section. It wasn't until the baby flatlined in uterine that the doctors panicked and quickly got him out of me in a bloody scene. Yes, tachycardia is something  that happens while people are experiencing seizures. That an elevated temperature, being sweaty, flush, dizzy, vertigo etc. those are ALL signs of what is happening or what is about to happen. I know my son is off when he has no color on his face. When he feels nauseous I KNOW that he is experiencing symptoms. You know your child better than the doctors. 

I can't thank you enough for

Submitted by TJE0807 on Tue, 2017-03-14 - 17:29
I can't thank you enough for replying to me! I'm so relieved to hear a story that is similar to my own. I have been so frustrated for so long, as doctors continued to tell me that nothing is wrong with my daughter. While I am still trying to wrap my brain sound this diagnosis, it's a weight off my shoulders to finally find some answers. It's also so encouraging to hear that your son is doing so well! Thank your from the bottom of my heart for sharing your story with me!

You are so welcome! My son is

Submitted by mereloaded on Tue, 2017-03-14 - 17:58
You are so welcome! My son is 19 and in college now. He is doing just fine. He has a normal life now, I feel bad that he suffered for sooo long and I couldn't help him! I tried everything! He takes keppra and doing well. I feel bad for so many years wasted/struggling which put him behind emotionally, socially and academically despite being bright and smart. He has catched up nicely since his diagnosis 4 years ago and with treatment. His confidence has soared! The way he expresses himself is so much better vs. when he was younger where he struggled finding the correct words and writing. So much better now. I found relief when they told me epilepsy because at least we knew what it was and what to do at last! It was so frustrating trying to find answers and no one listening. At one point I was accused of trying to "find something wrong" with him as means of getting attention to my self. The nerve! Trust your instincts. Mothers can do/sense/see what doctors can't on 5 minute visits and reading textbooks. You are definetely NOT alone!! 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.