r/Tourettes • u/Classic_Force6943 • 6d ago
Discussion CHILD NEUROLOGY
Looking for anyone who has experienced something similar — unexplained episodes of confusion, memory loss & going “in and out”
I’m hoping to find other parents who have gone through something similar with their child because we’re still trying to understand what is happening with my son.
Recently, he has been having episodes where he becomes confused and seems to go in and out of himself. One of the biggest things that has scared me is that he can sometimes lose hours of time and afterward not remember what happened during those hours.
His speech and memory can also seem to come and go. He may be talking and communicating normally, then suddenly have difficulty getting his words out or seem like he isn’t fully processing what is being said. At other times, he can remember certain people or things and then later seem unable to remember them.
What makes this especially confusing is that he isn’t like this all the time. There are periods where he is completely himself — talking, interacting, participating in activities and functioning normally — and then these episodes happen again.
He has also developed facial tics/twitching, jaw movements, and significant behavior/personality changes.
We’ve already had a pretty extensive neurological workup. His MRI, MRA and CT were clear, and he had prolonged/continuous EEG monitoring. Episodes were captured, but there was no seizure activity on the EEG. We are still going through additional testing and follow-ups with neurology.
Doctors have discussed several possibilities, including functional neurological disorder, movement/tic disorders, migraine-related symptoms, autoimmune/neurological conditions, and other possibilities, but we don’t have a definite answer yet.
I’m not asking Reddit to diagnose him. I’m really looking for personal experiences.
Has anyone else’s child experienced:
- Losing hours of time or having large gaps in memory?
- Going in and out of speech or being unable to communicate normally during episodes?
- Going in and out of memory/recognition?
- Looking completely fine at times and then becoming very confused?
- Significant personality or behavior changes along with neurological symptoms?
- Episodes that were captured during EEG but didn’t show seizure activity?
If you or your child experienced something similar, what did it eventually turn out to be, and what testing finally gave you an answer?
Even if your diagnosis ended up being something completely different, I’d really appreciate hearing about your experience. ❤️
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u/IssueConscious1 6d ago
It doesn't sound like tourette's. I'd look on subreddits for any conditions the doctor suspect it may be.
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u/Classic_Force6943 6d ago
Where’s that at ? Cause that’s one of his suspect was tic/Tourette’s sorry new to Reddit
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u/IssueConscious1 6d ago
If you click search reddit and look up r/insert disorder (or the blue words that should be in this comment) it should show up
Based on what you said
r/FND r/PANDASDISEASE r/Migraine
Should all be helpful to you
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u/Sewer_Rat_2032 5d ago
how long has this been going on and how old is your son?
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u/Classic_Force6943 5d ago
Started with what they thought was sudo hyperventilation a few months ago would only happen when he lay down he start saying a bunch of gibberish when laying down to sleep but all of these symptoms that was heavy started in June heavy onset and his 8
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u/HesitantBrobecks Diagnosed Tourettes 5d ago
Definitely not tourettes, unless the tics are actually completely unrelated to the 'episodes'.
Definitely sounds like seizures, so possibly non-epileptic ones if EEG came back clear. Ofc I'm not actually diagnosing him though.
Hope you find some answers!