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Whispering, not present, disengaged

My 10 yr old son was recently diagnosed with a seizure disorder. It took a year and a new neurologist to figure out what was going on. He was experiencing absence seizures. It started out as teachers thinking that he was "checking out" when school got boring. As time went on my son was "checked out" for about 95% of the day. Our former neurologist said he had serious mental health issues and dismissed us. At that time he was whispering/talking to himslef in partial words and phrases that weren't connected to what was going on and didn't have any flow to them. ie - wasn't just scripting from Lion King or other Disney movie innhis head. It was like neurological mish mash. He was not accessible at school or at home. It was like he disappeared. After findng the right AED and the right dosage he started to "come back" and he was able to engage with others again. I have done a lot of reading and have not come up with anything like this as a symptom of seizures. Has anyone else expeienced this level of disengagment? This went on for about 8 months before things started to get better. We have increased and added another med as things seem to be ok for awhile and then the whispering and disengagement creeps back in. Any informatin would be helpful. Thanks:)


Re: Whispering, not present, disengaged

I am sorry for what you and your son are going through. It is hard to see our children suffer. It is quite possible that he has epilepsy and a psychiatric condition both. One does not exclude the other one and in fact, some people with epilepsy are at risk of developing other conditions such as depression, OCD, schizophrenia etc. I am not saying this to upset you. I know as mothers we hold on to every hope one can. I would not rule out what the other neuro suggested as seizures are temporary, they pass after a while (45 minutes the longest ones or so) and then patients snap back to normal after a period of recovery. While it is expected for people with epilepsy not to be themselves for a little while, it is certainly atypical to be disengaged for extended periods of time or not snapping back.

Has he been tested for strep? Some untreated strep infections can and will debilitate the brain causing the symptoms that you describe.

I hope you find the answers that you are looking for and that you find good treatment for him. I know it is so hard. Best wishes.

Re: Whispering, not present, disengaged

Thank you so much for your insight, I do appreciate it. Yes - he was tested for strep.

Re: Whispering, not present, disengaged

There are so many conditions, to include autism, Tourette's and OCD that can cause this as well. Is this a sudden change in him or has Always displayed symptoms? Also, metabolic imbalances may cause brain disfunction s, from thyroid to vitamin deficiencies.

I hope you get answers. Hang in there.

Re: Whispering, not present, disengaged

Have you looked into Hellers syndrome?

Re: Whispering, not present, disengaged

Regarding ideas like being here (consciousness/alertness) vs not here (partial/altered consciousness/unalertness); paying attention vs inattention - try finding a copy of the two following educational books: Nerves in Collision book (about the nonconvulsive epilepsies) by Walter C. Alvarez, M.D. and the How To Cure Hyperactivity book (1981) about Inattentive ADHD, auditory processing, and dyspraxia by C. Thomas Wild, introduction by Anita Uhl Brothers, M.D. Both books address aspects of the neurological issues you pose. Best wishes.

Re: Whispering, not present, disengaged

Thank you for the suggestions for resources. I will find the books. I appreciate your help.

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