I just joined today after googling and finding this site. I haven't fully explored it, so if this post should go in a different folder, I apologize. I also apologize for this being so long.
My son is 10 years old. When he was 5 years old we noticed he was blinking excessively...we thought maybe allergies - took him to doc - told he was fine. The blinking subsided, but then he started needing to go to the bathroom CONSTANTLY - thought UTI? - took him to doc - told he's fine. Lather...rinse...repeat...with a variety of things that seemed (by themselves) to be a simple issue - then told there's nothing wrong with him at all. After several of these visits, his pediatrician told us he had Obsessive Compulsive Disorder. We refused meds.
His "OCD" tendencies were ever changing. They would wax and wane - they would change WHAT the compulsion was (smoothing his leg, scrunching his face, tapping 3 times, etc.). Over the past 5 years he has seen 3 psychiatrists and 2 psychologists and his school psychologist. The psychiatrists just want to put him on medicine. The psychologists do NOTHING. Really - every week they just say, so how are you? Any changes? Let's go over the history (which we've done a zillion times), etc. Then - oops, time is up - we'll work on strategies next week. Except next week never came.
We did give in last year and put him on medicine (age 9) but he turned into a completely different person. Angry, volatile, depressed, etc. We stopped the meds.
For the past 6 months or so, we've noticed something new. Strange, uncontrollable 'jerks' of his arms, legs, neck, face, etc. Like spasms that he CAN'T control - but it's not just one - it's again, and again, and again. It is COMPLETELY interfering with his daily life - can't even get his shoes on. We shot some video when he wasn't looking, took it to his pediatrician who immediately said "chronic tic disorder" and put him on medicine. It's not helping...if anything he's getting worse.
I just feel like, while he might have OCD tendencies, and *maybe* some tics, I feel there's something else - something all encompassing - that is REALLY wrong with him - but no one knows what it is.
As an example of how this interferes in his life:
This morning I watched (painfully) as he attempted to go from the hallway to the bathroom. It's 3 steps. He stood in the hallway jerking his leg back and forward - 'rubbing' the wall with his hip, touching the floor in a certain way with his foot, then FINALLY side-stepping into the bathroom while rubbing against the vanity. Then - he had to twist his shirt with his hands (like wringing it) again, and again, and again, while violently shaking/jerking his head before he could finally attempt to actually go to the bathroom. This took 10 minutes. Imagine this type of scenario with getting dressed, eating, doing schoolwork, etc. It's a nightmare - and he simply CAN'T function throughout the day like a 'normal' person - and let's not forget the teasing. Sometimes the shaking of his head (looks like Tourette's kind of shaking) is just so out of control he's probably giving himself a major headache.
When attempting to talk with my son he completely shuts down. He will NOT speak to us about it, what's going on his mind when he does these things, what he thinks might set it off, etc. He's completely mute and it drives me nuts. Any other time of the day he's Mr. social - until this past 6 months he was really popular and had tons of friends (despite his OCD) - but with the addition of the tics and the sudden and severe decline in his ability to get through the day - he's finding himself alone more and more.
So, I'm sorry this is so long - but I'm DESPERATE for someone - anyone - to offer ideas on what this could be...or ideas on how to help him. We've tried the strategies in the books - but to no avail.
Thanks in advance for your help