Hi, I have never heard of such behavior from someone with OCD. I have had OCD since I was a child and never experienced anything like that. You could join the OCD Support Group at Yahoo Groups and ask the doctors there. There are numerous OCD specialists who volunteer on the board and usually answer questions. How old is your grandson?

he is 23. His OCD got worse when he was on meds for seizures. He stopped them and went ln lamictal which also affected his anxiety. Now is he not on meds. His DR. told his mother that he didnt think it was hallucinations but something called sustained disbelief. We never heard of that.

Its like he has two worlds he lives in - and his mom is afraid one day he will choose to leave this one and go into the fantasy world.

also - he has been diagnposed with Tourettes and OCD since a child - don't know if that is a factor. A few years ago when he was around 18 - he would go up in the woods behind my house and when it was time to go he blew kisses to an imaginary someone before he left. I am concerned.

sorry for so many posts - I keep thinking of things - since his mother does not attend his meetings with DR she is not sure the Dr has the full picture.

Hi, don't worry about posting too much, it's good to give more information. I have never heard of "sustained disbelief" either. I am so sorry that you and your grandson are dealing with this. Like I said, I would check on the Yahoo groups OCD Support with the doctors there. They are the top OCD docs in the nations and have written books on OCD. Two of the main ones are Dr. Michael Jenike and Dr. James Claiborn. I know one of them works for the main OCD clinic in Boston or somewhere and they deal with the most difficult cases.

I have OCD and Tourette's (though neither have been officially diagnosed). I can actually see myself doing this sort of thing as a way of focusing and blocking other things out. Could be rather therapeutic. I would suspect that he's not likely to just go into his fantasy world and stay there as long as people are accepting of him in the real world. For me, I am tempted to just escape into a fantasy world for good at times, but I am always determined that I will not leave the real world completely, but make my fantasy world a part of it. Really, I think the best thing to do is just ask him about it with an open mind and tell him your concerns (or his mother's concerns). He can't address these worries if he doesn't know about them.

Too me it sounds like he might be a maladaptive daydreamer? I've never heard of "sustained disbelief", but am wondering if it's the same thing. From what I understand, maladaptive daydreamers do not lose touch with reality or hallucinate or anything, but it's like they are obsessively fantasizing. I don't know if that's what's going on with your grandson or not, but it might be food for thought and something to ask the Dr. about.

thanks for your comments - I will look into maladaptive daydreaming.

i don't think it's maladaptive daydreaming .
maladaptive daydreaming hasn't really been categorized as a disease or disorder because theyre are not enough studies on it but i think i have it. My MO matches the description to a T.

but the thing that's tricky about it is - we can fully seperate fantasy from reality. we just prefer fantasy as an escape (sort of like an alter ego in your head that does everything you wish you could do ).
I've spent up to 4 hours just listening to music , daydreaming up these long, elaborate stories .

we do display OCD type behaviors . I pace back and forth. Some report tapping their feet or staying in bed. This is why many psychiatrists give us meds that they'll give to ppl with OCD or ADHD.

but yea ... if your grandson is mixing up his reality with his daydreams then it's no longer maladaptive.

Dr Jenike, prof of psychiatry at Harvard U, used to (and may still) run the OCD Clinic at MGH in Boston. He also started the OCD Institute at McLean Hospital in Belmont, MA. He is also involved with the IOCDF. His opinion I would value, although he is not perfect as no MD is.

Dr. James Claiborne, a psychologist, is NOT a shrink whose opinion I would put any stock in. I was a patient of his some years ago and was quite unimpressed with him and even came up with my own behavioral therapy program. So, I thought "who needs this guy?". He also insulted me 2x in only 6 visits. I would describe him as a hick with a PHD (retired). Unfortunately, he and Jenike are buddies and Jenike used to send Claiborne out to educate psychiatrists on behavior therapy thru something they called the "BTI". Was kind of like the blind leading the blind.

Interesting symptoms as I have never heard of them before nor have I heard of "maladaptive daydreaming".

Lastly, what the heck is "thought OCD" that "pamdid" is referring to? Sounds like another made up OCD symptom. Since OCD is all about obsessions (thoughts) and compulsions (thoughts or actions), I have no clue what that generalization means.

I would have guessed her grandson had schizophrenia but I guess I would have been way off. Hope they can diagnose and treat him.

Is it Voices he is hearing? Sometimes i have become so in depth with my obsession that i start talking back to it and it becomes like a huge conversation you are having with someone. I also remember having other people i talked to but i was only 6 or 7. If its someone else voice that is talking to him in his head then it could be a pyscotic episode. I also have another theory, we all have different sides to us like caring side, selfish side, protector etc. It could just be that parts of his personality are disagreeing with each other and he is trying to step in to sort them out. I get that alot. These are all theories and you or his mum should probably go along to his doctors appointments to give him a bigger picture. I hope it can be sorted

I have never heard of this either but I do know that people with OCD have scattered thoughts a lot of the time and have huge imaginations.

Maybe this is how he organizes his thoughts? I would definitely ask a doctor about it though. Good luck.

It definitely might help to get his symptoms looked at further, but it also depends on the doctor.

Get his med doses checked! If he has gained/lost 10 or more pounds since the script was written, the dose of his medication NEEDS to change, otherwise he is at higher risk for the side effects.

It is possible that what he's experiencing can involve side effects, it may even be a compulsion.