Aa
desperate to help my son
Hi all,
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
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
Oh! I just realized someone commented about this almost four years ago! I REALLY hope you saw this!!!
I hope you see this comment.
Have you heard of a condition known as PANDAS? It's an extremely rare auto-immune disorder characterized by severe symptoms of OCD and Torette's Syndrome. Believe it or not, it is caused by a Strep Throat infection of all things. If you don't believe me, look it up, go to a very good doctor, and they may know about it. If they don't, ask them to at least research it, and maybe find out someone who knows about the condition.
This is an old post, so I don't know if your son has been diagnosed in the past or not, but please - look at this post. It may save your son's life.
Best of luck,
-Jk
Have you heard of a condition known as PANDAS? It's an extremely rare auto-immune disorder characterized by severe symptoms of OCD and Torette's Syndrome. Believe it or not, it is caused by a Strep Throat infection of all things. If you don't believe me, look it up, go to a very good doctor, and they may know about it. If they don't, ask them to at least research it, and maybe find out someone who knows about the condition.
This is an old post, so I don't know if your son has been diagnosed in the past or not, but please - look at this post. It may save your son's life.
Best of luck,
-Jk
My 12 year old son just started eye tics. Turns out it is from the strep throat he had last month. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Not sure how long it will last. He has hashimotos/hypothyroidism also. Found out when he was 10. We are still trying to get his levels under control. They say a lot of kids can get the tics or ocd from strep. Some don't even know they had the strep, but they have an antibodies test and if it is positive they can give antibiotics. I haven't noticed any OCD symptoms, but all this just started. He is still having a lot of hypo symptoms.
howdy,
I am 37 have bad Tourettes and can suggest you take you son to a neurologist.
Tourettes signs usually start to show between ages 6 - 10 but in some later due to puberty. Head throwing, vocal sounds like coughing or clearing the throat etc.
Eyes rolling, arms and legs spasmodically jerking are all normal signs of it.
Some people with Tourettes also have OCD and or ADHD. Meds for one can badly affect the other, but there are NO medications specifically for Tourettes.
Try to reassure your son that he is normal and that nothing is wrong.
When tics happen it can be frustrating, especially when trying to do something simple like wash your teeth, talk to dad etc and is embarrasing.
My parents punished me for pulling faces and spitting.
Your son is probably in a world of hurt trying to figure out what the heck is happening to him hence the neurologist.
NO to the psychiatrist, NO to the psychologist they just try to mend feelings and Tourettes is not about feelings, it is a Neurological syndrome caused by the brain constantly sending signals to the nerves and muscles to move, without reason or any order. Just so that you can know what it is like:
Tourettes tics are like having an itch. Normal people just scratch it and go on, with Tourettes you can't stop the itch it just continues on and on and on. Some people can control their tics to a point but if stopped they do tend to come back strnger and you hava quick blow out 5 - 10 minutes of totally uncontollable jerks, twitches whatever the tics are for that day, and yes tics do change dependant on some random set of orders.
I hope this helps.
I am 37 have bad Tourettes and can suggest you take you son to a neurologist.
Tourettes signs usually start to show between ages 6 - 10 but in some later due to puberty. Head throwing, vocal sounds like coughing or clearing the throat etc.
Eyes rolling, arms and legs spasmodically jerking are all normal signs of it.
Some people with Tourettes also have OCD and or ADHD. Meds for one can badly affect the other, but there are NO medications specifically for Tourettes.
Try to reassure your son that he is normal and that nothing is wrong.
When tics happen it can be frustrating, especially when trying to do something simple like wash your teeth, talk to dad etc and is embarrasing.
My parents punished me for pulling faces and spitting.
Your son is probably in a world of hurt trying to figure out what the heck is happening to him hence the neurologist.
NO to the psychiatrist, NO to the psychologist they just try to mend feelings and Tourettes is not about feelings, it is a Neurological syndrome caused by the brain constantly sending signals to the nerves and muscles to move, without reason or any order. Just so that you can know what it is like:
Tourettes tics are like having an itch. Normal people just scratch it and go on, with Tourettes you can't stop the itch it just continues on and on and on. Some people can control their tics to a point but if stopped they do tend to come back strnger and you hava quick blow out 5 - 10 minutes of totally uncontollable jerks, twitches whatever the tics are for that day, and yes tics do change dependant on some random set of orders.
I hope this helps.
Too me is does also sound like a combination of OCD and tourette syndrome. Some things associated with OCD are actually attributed to tourettes. I don't know if your son has experienced anything similar but tourettes isn't only tics. It also has other symptoms such as if you turn around, you need to turn back the other way (the way you started) in order to feel like you have unwinded or put yourself back into the same position. I have dealt with tourettes myself since I was 12, I am now 40 and my 18 year old daughter has had tics since she was 2. I had found that an informed neurologist can be very helpful. Alot of neurologist are not as familiar with tourettes as others so be careful to chose the right ones. Sometimes it does take trying different medications until the right dosage or combination can be obtained, but make yourself completely aware of the side effects so that you can watch for anything that could be dangerous. Good luck to your family and especially your son in regaining his normal outgoing lifestyle.
sounds like OCD and tourette or tic disorder to me as well. i think you may need to experiment with meds but know that there is no miracle and it may take a while. my daughter (who has horrible anxiety, aspergers and ADD) has been on several meds and none have really worked but we keep trying new ones and different combinations. i think if it is really interfering with daily life then medication management as well as weekly therapy with a counselor is in order for him. as a sufferer of OCD myself, it causes severe anxiety and he really needs to find something to help him get a handle on the anxiety before he starts to have more problems like depression which comes from the anxiety. make sure you reassure him that it is OK for him to have these tics and behaviors and that it is part of who he is. maybe his anxiety is increasing and it is making his tics worse. perhaps he is being teased at school or something. have they tried clonidine for the tics? what has been on for the OCD??
Hiya, it sounds like maybe your boy does have Tourettes. From the sound of the things he does the OCD diagnosis sounds very accurate but the tics sound typical of Tourettes (i suffer mildly from it and i have quite a few friends who suffer in varying degrees) i think its definitely worse showing the symptoms to a psychologist because even if its not tourettes its obviously an issue, and hopefully they can resolve). best of luck :)
Oh, forgot to mention, I also have OCD and I am Bipolar so it could very well be that the Physc doctor could find the correct medication for him.
Hickoy5, I can only tell you I had a mild case of Tourettes as a child, I blinked my eys without even knowing I was doing it. After it was brought to my attention I made efforts to try and control, eventually it went away after a year.
I would make an appt. with a Physchartist and if he could not help you, I would make an appt. with a Nurologist. Perhaps the medication that was precribed was not the correct medicine for him. Please continue to post on your progress, I would like to keep up with you.
I would make an appt. with a Physchartist and if he could not help you, I would make an appt. with a Nurologist. Perhaps the medication that was precribed was not the correct medicine for him. Please continue to post on your progress, I would like to keep up with you.
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