My 15 yo granddaughter starting having seizure type activity about 3 months ago. Her EEG’s are all normal. I am a nurse and the seizure activity appears real ( no way that someone can fake it), but she never has any kind of incontinence & she seems to be aware of what went on after the seizure. The seizures last a few minutes and seem to be getting longer, but a little less frequent. She seems to have some control over them. She does have a lot of stress going on in her life. Her parents divorced about 2 years ago and her mother moved in with her boyfriend shortly before the seizure activity started. the boyfriend and his wife separated and divorced about the same time and they had been family friends. My son ( her dad) is not in a relationship. She has 2 older brothers and a younger brother. She is very close to her family, especially the oldest brother, he is in the Navy and deployed to Japan just after the seizures started. She has been dealing with chronic severe pelvic pain for several years. She seems to have some control over when the seizures occur. She has them in school, but rarely at a school function ( sporting event/concert etc.) She has never had one when she is with me or her aunt ( my daughter), unless the rest of the family is present. She has them much less frequently when she is with her dad 3-5 days/week ( alternating weeks) & then they are usually only at night ( when her dad does not see them). When she is with her mom they average 3-4/day according to her mom. Her mother seems to like the attention that she gets and talks about her condition on social media. My granddaughter is completely under the control of her mom and show contempt for her dad if he tries to get involved. She even refused to continue to going to her primary care MD because she wanted her dad to come to her appointments. She was seen at Children’s Hospital in Omaha when the seizures started but the neurologist pretty much signed off after the EEG was normal :(. She is now seeing a different neurologist and they are trying to get her into a 3 day seizure study. The seizure that she had at our house on Christmas caused her to lose feeling and activity on her left side & she had slurred speech for about 20 minutes afterwards. I guess this is pretty common now. She is no longer attending school ( doing her work online). She is a very good student. Her personality has changed so much. She is now very manipulative insecure, and needs constant attention. My daughter (nurse also) & I treat her just like the rest of the grandkids and try not to make it “all about her” We do not really respond to the seizure activity like everyone else, but it does scare me. She use to be so outgoing with many friends & now most of them are moving on. It is so sad. She is a beautiful smart girl & it just seems like her life is going down the drain. She is seeing a counselor (a friend of her mother). Her original primary care doctor wanted her to go to a trauma psychiatrist with both parents being involved, but she refused. We all live in the same small city so have always been a close family. I am so frustrated and feel so helpless. Her mother is convinced she has a severe medical condition, but it appears to all the rest of us that is all phycological. None of us dare say anything as her mother will just change doctors & turn her against us. I am sorry for the long post, but just hoping someone may have some insight. Thank you.
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Hi @grannysgym What do her seizures look like? Is there shaking, loss of consciousness? How does she feel before and after? Are you seeing an epilepsy specialist or a general neurologist? Is it possible these are more psych related given all the changes in her life and her age? Is it a cry for help? Perhaps a psychiatric evaluation would be helpful or maybe a more specialized doctor? Hoping you find some ideas here.
Good afternoon and welcome to Connect,
I’ve had Epilepsy for 52 years and many thousands of seizures.
Is she having Tonic Clonic Seizures? You mentioned Nocturnal seizures but not the type. Are they Generalized or Partial (Focal.) Does she ever wake up with a bitten tongue or cheeks, wake with a headache, confused, body aches or sleeps for an extended period of time? Does she ever have feelings, sensations or emotions that are out of the ordinary prior to the onset of a seizure?
Psychogenic Non-epileptic Seizures (PNES) use to be frequently misdiagnosed, not as much now. Although I still believe there are a lot of misdiagnosed PNES patients. Although lack of electrical activity on the EEG can be one indicator of PNES, the most reliable test to make the most accurate diagnosis of PNES is video EEG monitoring. As far as the normal EEG is concerned, that happens in about half of all patients who have an EEG, even in patients who have active Seizures, as so frequently happens even if the EEG, MRI, CT, PET, MEG and other testing are normal, including the Neurological exam. Occasionally scans indicate a structural or functional abnormality as the cause of seizure activity like lesions, tumors, blood flow irregularities etc. , but I suppose these have already been ruled out. Hi
You mentioned “she seems to have some control over them.” May I ask how she controls them? Is your granddaughter taking or has taken any Anticonvulsants? If so, were they effective?
Has she been evaluated by a psychiatrist or psychologist?
Wishing everyone health and happiness,
@grannysgym Perhaps these are more like convulsions? There then could be an underlying physical cause like kidney or liver issues. Wishing you the best as you seek answers
my Pseudo seizures started at the age of 13 they are from post traumatic stress disorder. I experienced something that I was not ready to feel so now I am 61 years old I am on Vimpat Lryica Carbatrol & Briviact this is a lot of medications yet I am under control. These kind of seizures are due to stomach seizures and stress as well. The Neurologist discovered that I have four kinds of seizures I have not had a Grandma since I was 23 years old while going off my seizure medicine since I was pregnant. I am interested in stomach seizures. Blessings to you Cindy Pekarek
Has any type of cognitive behavioral therapy (CBT) been suggested to you or tried prior to your control.
You must be having seizures other than PNES considering the meds your on. You mentioned having four types of seizures, would you share what they are? Three of your meds are for Focal Seizures and Carbatrol for Generalized. Congratulations on your control.
yes I was told that Nero feed back can help
Hi, @cindypekarek – wondering if you are considering pursuing the neurofeedback?
Hi, @grannysgym – thinking of you and your granddaughter. Wondering how her seizure activity is lately and if you and your family got any further information on her seizures?