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Video EEG

Hello, I am fairly new to dealing with seizures. My daughter now has a VP shunt and also has what were diagnosed as complex partial seizures a few years back by internal medicine doctor at the hospital after he witnessied an episode. With symptoms of decreased mental status, seizure activity, dialated pupils, facial twitching, ataxia, and other symptoms that were indicative of shunt failure or need for a programming adjustment, we went to the ER this past weekend. While in the hospital, the neurologist on call diagnosed conversion disorder. Daughter has had over 30 surgeries for a genetic condition with several co-mordities that require a care team of specialists. The Neurologist at the hospital discounted the need for a shunt for indiopathic intracranial hypertension, medication for a clotting disorder, and the need for surgeries due to lax ligaments. Essentially saying the surgeries did not provide symptom relief, it was the need for attention from the surgeries that did. In his words he needed to protect her from further surgery from overzealous surgeons who will over read imaging and will always find something to fix. We tried literally everything for two and a half years before moving forward with first surgical intervention. PT, medical massage, nerve blocks, etc.

Daughter has had 5 previous EEG’s that showed nothing. This time a three day EEG showed consistent slow beta waves Dr. attributed to 5 mg of Valium 3 times a day. She has been on this dosage for about 4 years for muscle spasm due to extensive spinal fusion. All other EEG’s came back as normal with this same dosage. Of great concern was the altered mental status that is positional we now think as a result of the shunt draining at two rates one supine the other upright.

My dilemma is the neurologist chalked the slow beta waves up to the Valium. My concern is if there is something else causing this as she most recently had brain stem compression from a failed fusion that was alleviated by surgery. According to the neurologist that was probably unnecessary as well. Are you sensing a pattern here?

My Question - Are consistent slow beta waves a normal EEG finding for someone on Valium? I am perplexed due to the number of normal EEGs when on this medication in the past. She also had a positive Babinski sign upon neurological exam. Disregarded. All weakness, and inability to walk were attributed to lack of effort.

Thank you in advance for your help. It has been a rough week to say the least. I am just so glad to get her out of that hospital.

Comments

Hello. I’m a licensed

Hello. I’m a licensed clinical social worker as well as a person with epilepsy. It sounds like you and your daughter have been through a lot and her case is very unique and complex. But, nobody here can tell you what her test results mean. However, she does have a right as a patient to get a copy of the VEEG in electronic form to include the video and EEG so that you may take it and the original report to another doctor for a second opinion. I requested a copy of my VEEG from a hospital one time before and had my new epilepsy specialist look at it and he found some things that were left out of the original report. Someone from the Epilepsy Foundation will probably be in contact with you during the week with some information on getting a second opinion and finding an epilepsy center that may be different than what you already went to the first time. I wish you and your daughter the best in having that original VEEG looked at again with a new set of eyes. 

Hi, Thank you for posting, it

Hi, Thank you for posting, it sounds like you all have been going through a lot and are glad to hear your daughter is out of the hospital.  If you all feel like you aren't  getting the proper care or not receiving the answers you need to help your daughter you all my want to consider seeking out a second opinion at a comprehensive epilepsy center.  An epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, the specialized center also include other healthcare professionals to meet the diverse needs of people with seizures and their families. To learn more and find an epilepsy center and epileptologist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist . As Gianna mentioned in her comment, we are not able to interrupt the results of her EEG, so it’s best that you follow-up with her neurologist for further explanation of the results and to help determine what individual treatment plan is best for her. To learn more about EEG readings,please visit: https://www.epilepsy.com/learn/diagnosis/eeg/how-read-eeg . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline 

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