Severe Vocal Tic (4-year old boy), I'm his dad seeking help

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Daveturville
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10 Jan 2018, 4:29 pm

I'm new to the board and really just looking for some help. I have a 4-year old son who started having a relentless vocal tic about 1-month ago. It literally cam from nowhere. In one breath everything changed and I am terrified. He will do a soft grunt every few seconds for most of the day, with an intermittent louder cough or even bark every now and then. It's almost like he's constantly clearing his throat. Sometimes it's 20 tics per minute, especially when he's reading a book or watching TV/Tablet.

I'm his Dad and I'm terrified. I have read everything there is to read on the internet. There are so many ideas out there, and i'm kind of at a loss of what to do. I can say that there is NO evidence of anything genetic. There are no tics on my side or my wife's. I also have a 7-year old son and he has never had a tic that I've noticed. But my 4-year old's are relentless and very obvious. They are all day long from when he wakes up to when he goes to bed.

I did take him to a ped neurologist two weeks after onset and she confirmed it was a vocal tic. She said "it could last for years or go away." I asked her about how many go away and she said "it's tough to know, as those kids never come back."

So I've read hundreds, if not thousands of accounts from parents on all these different message boards and many sound similar to my son. BUT, it seems like the message threads for a few days or weeks and then everything disappears. I want to know how these kids turned out. Did many of the severe cases go away? Did it get worse? It seems like there is a lot of early panic on these boards, but not a lot of 'what happened?'

I'm a terrified father and I'm seeking out help. From what I can tell my son doesn't really have a motor tic, unless you count the fact that his body shakes a bit when he coughs/barks from the vocal tic. But his vocal tic is extremely severe in my mind. It happens hundreds of times an hour, and sometimes more than that.

I've wondered if it's allergies, food, whatever. We live in San Diego and the air is relatively clean. I have had hay fever and allergies to animals my whole life. But his symptoms are not like mine. Again, he has a vocal tic, and his eyes aren't watery. No itchiness.

Any thoughts from anyone in my situation would be so helpful. Especially if you've been down this road before. Reply to this or e-mail me ([email protected]).

Thank You in advance.



Benjamin the Donkey
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11 Jan 2018, 2:49 am

See a good pediatric neurologist. But do some research first. Find the hospital with the best neurology department that you can get to.

My son has Tourette syndrome--only minor and occasional physical tics, fortunately. If your son has a more serious case, or any other neurological problem, you need to be informed and advised ASAP in order to get him any help he may need.

Good luck!


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Daveturville
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11 Jan 2018, 5:08 pm

Thank You for the response. Good to hear that your son is doing ok. I'm in San Diego and I have an apt with what appears to be an excellent ped neuro. But I couldn't get in till March. So I'm two months out.

This has been very hard for me as his Dad. Any advice is welcomed by anyone, and I appreciate your response.

I just don't know if because his is severe if that's a bad thing, or what it all means in the long run. I have videos of him literally days before onset and there was NOTHING. Now it's relentless and has been for 5 weeks. Constant grunting. I just don't know what to do as there are so many opinions. But I do have an apt with that ped neuro.

Thank you Benjamin.



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15 Jan 2018, 6:14 pm

My son, who is on the spectrum and has OCD, went through a phase of vocal tics that sounds very much like what you are describing.

I remember it seemed to come on suddenly, although it's very possible that he was ticcing before and I just didn't notice because it wasn't as obvious a tic as the vocal ones can be. I can't remember exactly how old he was but I'm thinking it must have been the summer before either 1st or 2nd grade. I first noticed it when I was reading a book to him at night. He would make these little grunting noises. Hard to describe. Not that loud-- not barking or anything. More like someone trying to discreetly clear one's throat, only more of a grunt. Just as you mentioned, I noticed it most often when he was doing something quiet-- reading, being read to, or watching something on TV or the internet. I remember describing it to someone as his process during "input" (meaning, if he was getting some kind of input from some other source, where his role was almost entirely passive.). The grunts were almost like a kind of mental punctuation. For the most part, they didn't bother anybody (there was a period when they did become loud and frequent enough that they would annoy his brothers if they were watching TV together), but I was still very worried because I knew that it was the kind of thing he could be teased for at school and elsewhere out in the world. I did all the stuff you did- obsessively reading on the internet about other people's experiences, symptoms of Tourette's, etc. I wanted to be prepared for any eventuality so that I could support him.

I believe, if I'm remembering correctly, that this phase of vocal tics lasted for about a year, maybe 18 months, and then they just faded away. So gradually that it was the kind of thing where I didn't notice they had stopped until I looked back and realized, "oh... he hasn't done that in a while." You just get used to it and don't obsess over it after a while.

Fast-forward to the present-- he's in 5th grade now, and there is zero sign of these grunting tics. It was just a phase, and that particular phase is over now. He's gone through other tics as well, and they too come and go. Now that we know he has some trouble with OCD, we pay close attention to anything that seems like it could be a ritual, but other than that I don't worry too much about these things. At this point it's like it never happened-- but when I read something like what you wrote, I remember how very worried I was and how I couldn't just accept that either it would get better, or it wouldn't.

I know saying "try not to worry" is pretty pointless. But I did want you to know that there is certainly a chance that this could just be a phase and disappear completely, as it did with my son.



Daveturville
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16 Jan 2018, 3:46 pm

Carpenter Bee,
THANK YOU so much for taking the time to write such a thorough response to my post. I don't know how to explain where I am other than I am just terrified and this all onset from nowhere. One day nothing, and the next day 5-20 tics a minute. Most are a soft grunt that wouldn't really stand out if it wasn't so often. If it was once a minute I don't think anyone would notice. But 10 times a minute and it's noticeable. But the soft/loud bark is very noticeable.

Our situations sound similar. I have a 7-year old son, my 4-year old (who I'm writing about), and twin 1-year old boys. So we have 4 boys. It's a lot right now and I think that the chaos in the home is contributing to my stress with what is happening to my 4-year old.

So did you guys do anything with your boy regarding doctors, meds, nutrition, supplements, et all? Or did you just roll with it and it got better?

Regardless, I am so happy for you that your son in 5th grade is doing well, and I hope that the rest of your family is too. It means a lot to me that you'd submit this response. I'm feeling very alone and I just don't know if what I am doing (relentless reading and stressing) is the right course of action. I pray that my son has the same outcome as yours. We were on a flight yesterday and they were just relentless vocal tics. It was breaking my heart as people started looking at him and probably thinking 'someone needs to tell that boy to cover his mouth when he coughs,' when I know he had no control over it. It's just hard.

But your story gives me hope. It's what I was looking for. These boards are filled with the 'onset' stories, but rarely the 'outcome' stories.

Thank You.

Dave



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16 Jan 2018, 8:38 pm

Hi Dave,

I'm glad what I wrote gave you some reassurance. I know very, very well the spiral of doom-thinking and stress you can get into, and that feeling that you need to DO something (but there's nothing to actually DO, so you just obsessively read stuff on the Internet.)

I wanted to add some thoughts to my other notes:

With any new symptom with my son, my first thought is always, "is this in any way related to stress, even stress that may not be obvious to me?" (often, the answer is YES once I really examine things-- and then I can go about trying to reduce or eliminate that stressor). The odd thing about the grunting tic that my son had, though, was that it did not seem to occur during times of stress-- quite the opposite-- it was more of a response to being ALERT but RELAXED. You know how in child development they talk about babies having that "quiet/alert" state that's supposed to be ideal for learning? It's really like he's in that sort of state-- paying attention to something, working hard at processing something. So it's not exactly stressful, but maybe some kind of subconscious way to vent the stress of "processing", if you know what I mean. In my own life, I can think of an example where I pick my cuticles to the point of bleeding when I'm stressed, but I also do that when I'm watching a movie-- something I enjoy and find relaxing (so why do I pick my cuticles during that relaxing activity? because I think, on some level, my mind feels very "active" and there is some overlap between that, and an "anxious" response.).

We did not do anything special with our son, other than to mention it to our pediatrician at his annual checkup (which happened to fall around the time we started noticing it), along with a crap-ton of stressful online reading. The online reading I did convinced me that stressing out about it around him or calling attention to it would be a really bad idea, regardless of whether it turned out to be transient or something more long-term. So I kept my stress to myself, tried not to worry about it too much, and kept chugging along. Didn't make any dietary changes or anything else.

I should mention that I did wind up pulling my son from public school and I now homeschool him, but that was because of other issues and enormous stress, and I don't see that as having had any particular connection to his vocal tics (either the appearance or them, or their subsequent disappearance.). Since pulling him from school, I've seen other vocal and motor tics come and go. When his brothers have had questions about any of those types of things, I've explained that these are really not much different from, say, someone nervously bouncing a leg while sitting in a chair, picking at fingernails, tapping a pencil, or even humming cheerfully to oneself unconsciously, although all of those behaviors are very common among all types of humans and therefore are practically invisible unless they occur in an environment where utter silence is expected. Human beings have incredible radar for ANY kind of unusual behavior, no matter how subtle, even if it's behavior that is completely non-threatening.

I agree it's very hard when you notice other people noticing anything different about your son, even if they aren't being overtly rude about it. When this happens to us I just forge on as though nothing at all out of the ordinary is happening. People are mean and rude, and unfortunately that is a Life Lesson as well-- we can't protect them from all of that. I believe you will surprise yourself with how the way you are feeling now will decrease in anxiety level. Sometimes now I may be out in public with my son and he's doing something "inappropriate" (aka "unusual"), like spinning (10-yr-olds don't generally spin), and I hardly notice it anymore, or pay any attention whatsoever to whether anyone else is noticing him, and I realize how far I've come from when he was little and any kind of unusual public behavior would really stress me out. It's taken a while, but I've finally internalized the truth that I can't control what anyone else thinks, and if they want to think ignorant things about him, that's their problem. Once you can let that go, it does get easier not to feel stressed out by every sound or quirky behavior. (Now if only I'd been able to apply that Zen to the stress of flying with a crying baby.)

I hope you can take a big deep breath, and focus on the positive aspects: this is not a dread disease or anything else life-threatening. They're just noises. They'll either go away, or they won't, in which case you will get so used to them you won't even notice them anymore, (until some jerk reminds you that they exist, in which case you can summarily label that person a Jerk and move on.).

Enjoy your little guy. :heart:



Daveturville
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17 Jan 2018, 2:22 pm

I really can't convey the type of gratitude that I feel towards your empathic and detailed response(s). It's weird because everything you are saying is exactly where I am right now. It's just so hard. Literally with one breath on December 7th my little guy went from zero to relentless ticking. And from that day till today, I haven't slept more than a few hours a night, and I have been relentless in my pursuit of information and answers. In my professional world, i'm used to solving problems all day for a lot of people. It's in my nature to try and resolve this. So when you stated that you felt like you had to 'do something' rather than just be patient, you're exactly right. So I don't watch TV or do anything for myself, as I feel like if I am doing something else (other than researching/learning/hoping) it feels selfish. So ya, you find yourself on the internet treadmill, churning through the same articles for the 10th time hoping that you will read something else that will give you hope. I logically look at myself and try to give myself the same advice that you and others are giving, but I then ask what any other father would do in my shoes with this type of onset? If he's worth anything as a dad, he'd be relentlessly doing what I'm doing.

But it is tiring, yet when I hear your story it makes me hopeful. Our boys were at somewhat of a similar age at the time of onset, and to hear your story gives me some peace. And to know there is another parent out there that would give a few minutes of their day responding makes all the difference. It's weird, in this searching you are just hoping to find that 'match' of a story that reminds you of what you are dealing with, and you pray that you hear the ending and it works out. So I am totally uplifted by what you've told me.

The symptoms are so similar. I'd say he's doing more loud grunting/barking now, which is the hardest. And it ALWAYS happens the most when he's calm and watching my older son do homework on the computer, or if I'm reading to him. That's the most heartbreaking part (nothing like reading to your little guy only to have that action result in relentless vocal tics, oftentimes every second). There is nothing more beautiful than reading to your child, so it's REALLY hard to pick up a book knowing I'm going to trigger something that is causing me so much anxiety.

To your main point, as of now he doesn't know what's going on (he knows that something is up, but it hasn't hit him yet on self-esteem or whatever). So that's good. We have moderately changed his diet, but not much. I have put an air filter in his room that is top of the line. I am considering taking him to an environmental allergist and I have an apt with a top shelf pediatric neuro in early March. My wife thinks I am way over-reacting, so we may not do those appointments. She also thinks we need to be patient and is handling this stuff better than me (As I side-note, I do believe that mothers have the best instinct). But again, we are dealing with as many as 10,000 vocal tics a day, and many of them being very loud. He doesn't really do anything motor, other than when he makes a loud bark-type tic and that moves his body. I'd equate it to a hard cough. When I cough, I move my body too.

Anyhow, anything you ever want to add would be welcomed. I believe in putting as much detail here as I can, so that someday another parent my see my story as a 'match' to theirs. It's amazing how I've read threads from 2006 and even older. My prayer is not that it will 'go away' (although I wouldn't be complaining if it did), but I want to hopefully see the symptoms reduce a lot/hopefully the really forceful and louder ones subside at least.

I will work on my breathing (haha) and my patience. I'm not good at either. But major props to you and your family. Thank You for sharing and if anything else is triggered by my post here please add more info.

Dave



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17 Jan 2018, 3:02 pm

Dave-- so glad to be of help.

In my family I am the Doer/Fixer/Mitigator, so yes, absolutely I relate to how you are feeling. This trait can be a tremendous asset when something does need fixing/solving, but it's not so great when patience and calm is warranted.

I am absolutely terrible at "wait and see". Terrible. If raising my son has taught me anything, it's how to develop that skill (as much as it's even possible for someone like me who is crap at it.). It's also taught me that not everyone WANTS to be part of an aggressive solution-driven process. Sometimes people just want to be heard, or get a hug.

If I were you, I'd focus not so much on how these new symptoms are affecting you, but how they are affecting your son. Is it making HIM miserable? (and be careful to separate his personal feelings from what he may be picking up from you-- if it's obviously stressing you out, he may be internalizing that it's a bad thing, when otherwise he may not have even noticed-- he's so young still, he really may not have picked up on it being a "weird" thing). I know my own son did not mind his own tics at all. Even when his brothers would complain he was being noisy during TV, he would just sort of shrug his shoulders, like, "oh well." It was never an issue at school (when he was still at public school) because he was seldom in that "quiet alert" state there. If it had become distressing for him there, (because of bullying or whatever) then we would have dealt with it once it became a problem.

Keeping those appointments will probably make you feel as though you are DOING something but to be honest they will probably tell you the same thing (it's not harmful; it will either go away or it won't.). [I feel as though I need to insert some sort of disclaimer here, along the lines of, "This is not medical advice."]

Now that my son is older (10), when he gets any new tic or OCD behavior we make note of it (casually, like, "oh it seems like you have a new tic,") and then just sort of move along, unless it's something that actually interferes with his daily life. I believe STRONGLY in talking to kids about what's going on with them, because it's their body and they have a right to understand it, and what things are called. If your son becomes distressed or self-conscious about his noises, if it were me I'd just talk frankly about them (e.g., "they're called TICS and they're not dangerous" etc).



Daveturville
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26 Dec 2018, 6:24 pm

Carpenter Bee,
I just wanted to reach out to you (not sure if you will get this as its been a while, and I'm not sure if you visit this platform much) for a few reasons.

#1 - I wanted to THANK you again for being so open and honest about the situation with your son when you responded to my post last January. I was in literal 'crisis' mode, and I had a few people send me information, including you, that brought me some peace/gave me information. My son's situation (especially his onset) mirrored your sons, and it felt good to hear another story. I have since re-read our thread 7-8 times over the past year, usually when I'm really stressed about what is going on with my son Ashton. It has brought me some peace. THANK YOU.

#2 - I wanted to see how your son was doing? Is he succeeding? Are the vocals still pretty much gone? Is he doing ok? (I hope he is). I also wanted to touch on the OCD part you mentioned. It that pretty aggressive? My son has a few of those things. He has to wear the same shorts to school each day now, and will only rotate between a few shirts. Again, this is for school. He will wear other clothes elsewhere, but he's particular about school. He's also very into routine.

#3 - Wanted to update you on Ashton: It has been an up and down year. I have been super stressed the whole time. I haven't gone to any doctors still, and I've made some environmental changes at the house/tried to reduce stress for him (we have 3 other boys, and I know you have 2, so I know you get that a house can be stressful. My twins are now 2 years old, and they are still tough, but they are a bit easier to manage, which helps). We have been giving him supplements and tried to cook better, but no formal medication.

Overall, it (the tics) were at their worst right at onset (last Dec) for about 2 months. I mean, they were rough. Like 10,000 a day. Some minutes with 20-30 coughs/throat clears/soft barks) in a minute. But in Feb they softened a bit to maybe 1-3k per day. So every minute or so, sometimes 2-3 per minute. He also added a bunch of motor stuff (shoulder shrugs, licked his lips, wipes his face, rolled his neck) that was tough, but NOTHING for him from a motor standpoint is as bad (or noticeable) as the vocals. Throughout the year, he'd have a few weeks here and there that heated up again on the vocals, but still they mostly trended down. I'd compare it to a stock. You will often see volatility in spurts, but generally over time the stock is either going up or down. And throughout the year it has trended lower on the vocals. To the point where it seemed to mirror a lot of what you told me with your son (they thinned a bit for a year or 18 months and then faded).

Throughout the year, they would thin as well when he was watching TV or had books read to him. Again, just like you described (and I loved how you compared it to his 'Alert/Relaxed' process).

Lately though, for the past week or so, we're seeing a huge flare up. He got a bad cold, and it was almost like that was lighter fluid for his vocal tics. The last few days have been like the onset. So I'm a bit worried, but trying to keep my composure. All year, I've been hoping to get your story (12-18 months and they go away). It seemed like it was going that way, until recently. So who knows. And during his 'Alert/Relaxed' (TV/tablet/having a book read to him) he's flaring up a ton. It's heartbreaking. Hoping it passes. It'll be interesting to see what happens when he shakes the cold. But the cold has been literal lighter fluid for the vocal tics. It's crazy.

Anyhow, I wanted to update you, THANK YOU, and also see how your son is doing. This whole tic community is a small world. It's a tough place to be in. And when it first happens, it feels like the walls are caving in and there is nobody out there with help or answers. SO I reflect a lot on you responding and I wanted to Thank you again.

I hope you and your family are having a good holiday. I hope you get this. If you reply, great. If not, no worries. I just wanted to send you and update and say THANKS.

Dave



SocOfAutism
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02 Jan 2019, 12:24 pm

I just happened to see this. I have anecdotal knowledge for tics, which you guys may want to try.

I have something called spinocerebellar ataxia, which causes choking here and there. I also used to work in an allergy clinic, where we saw patients sometimes for habitual coughing, which is a kind of tic.

In both cases, it can help for the person to practice singing, reading aloud, praying aloud, memorizing something aloud, or practicing a foreign language. Say for a half hour once or twice a day. It can make the problem go away entirely for some people. It did for me.

This also works for the hiccups.



carpenter_bee
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12 Jan 2019, 2:14 pm

Hi Dave,

I'm sorry I'm just now finally getting around to responding to this!

I'm glad to hear things are well at your house (in spite of the normal stress of a busy household, heh). Thank you for asking about my son-- he is doing really well.

I rarely see any vocal tics in my oldest son anymore. My middle son (age 9) has just developed one though! Out of the blue, he has started to do this persistent throat-clearing thing. Like my oldest son, it happens when he's doing something quiet/input related (like watching YouTube videos). It's frequent and drives everyone crazy, seriously. I want to tell him to STOP because listening to someone clear his throat a million times in a hour for some reason just feels like being poked with a needle, over and over. The urge to say "hey how about a glass of water" is also strong... But it's obvious there's nothing wrong with his throat; he doesn't have a sudden new allergy, etc. It's so clearly just a vocal tic. So, we're trying to ignore it. It'll come and go. This particular son does not have the same issues as my older son, although it'd be safe to say that everyone in my family has a sprinkle of ASD and/or OCD and it shows up in various ways...

My oldest son's OCD remains a pretty big problem. I'd say it's his BIGGEST problem (more than the ASD) and what keeps him from being able to attend school or be a member of social groups outside of school. His need to control his environment and processes is intense and disabling. We are trying to help him learn to manage it. I big part of that is simply seeing it for what it is: irrational thoughts that feel really important, but the consequences of which are illusory. This is REALLY difficult work for grownups, much less a elementary-age kid. I think as he matures it will become easier, and having an early start on that self-awareness is going to make a big difference.

I think for things like needing routines or having things be a certain way (as with your son's clothing etc) it's good to look at it from the perspective of: is this harmful? is this disabling? I think if it's just a quirk, then it's okay to just note it and move on. But if it starts to creep its way into things like food or getting work done, it can quickly become problematic. (One of my son's persistent OCD things is that if someone TELLS him it's "dinnertime", then it's somehow "ruined" and he "can't" come to dinner. Not being able to eat because of imaginary rules is a big problem.)

One thing you can try is to challenge your son to stress himself out a little with these things. I know that seems counterintuitive with all the work we do to REMOVE stress from our kids, but with the possibility OCD, it's really critical that you not ENABLE it. that's when things can quickly spiral out of control. An example might be saying, okay, you can wear the same shorts for 4 days a week but on Fridays you have to wear something else. And it will be stressful, but letting him learn that he CAN do it and nothing terrible will happen as a consequence (beyond the stress of breaking that "rule") is really critical for him to experience.

Finally-- absolutely, being sick, or a virus coming on, I've found to be an enormous risk for flare-ups of any problematic behaviors. When my oldest's tics were at their worst, they'd increase dramatically when his immune system was stressed, and now the same is true with his OCD. He can seem really highly-functional for months and them BOOM everything falls to pieces for seemingly no reason... and then a few days later I realize he has a cold, and I go, "oh, okay... that's why." It can feel like a big setback but I wouldn't worry that you're going back to Square 1.

It's been a couple weeks since you posted-- is he feeling better now, and have the tics reduced in severity concurrently?



carpenter_bee
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12 Jan 2019, 2:15 pm

SocOfAutism wrote:
This also works for the hiccups.


I'm definitely going to try that the next time I have the hiccups!



Daveturville
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13 Jan 2019, 12:14 am

Thank You for writing back. I always find your outlook to be thoughtful and centered on the 'big picture.' In my everyday world, and professional world, I am really good at the 'big picture.' But as a father, and specifically to Ashton, I am not good at this. Far from it.

He is still clearing his throat. A Lot. All day long. The good minutes are 2-6 times a minute. The bad minutes are 20+. He has more good than bad, but I hear them all day when I am around him, and I stress about him (like when he's at school, as he's in kindergarten) when I'm not around him. As with your son, when Ashton is on the tablet or tv it's bad, just as when he's read to. These are the bad minutes (20+ per minute). But overall, it's all day. From when he wakes up till he goes to bed (they are also very frequent when he tries to fall asleep).

I do think he still has the cold. It's not as bad (the cold) as when he first got it a few weeks ago, but he's still dealing with it.

The whole thing is just tough. As I outlined above, it's been a 'thing' for just over a year, but on the macro it was much better, and then BOOM. Who knows. He would qualify for a TS diagnosis at this point. It's heartbreaking for me to write that.

I am considering some drastic changes regarding the diet and/or other things. I'm hesitant because it would shock the whole families system, and who knows if it will really do anything. Did you guys ever change the diet, or go heavy on supplements? IDK, just kind of at a loss. I'm used to getting what I want if I work hard enough and I want to help him so badly, but I just don't want to make any wrong turns.

I'm happy that your son (oldest) has had the big reduction in vocals. I'm bummed to hear about his other stuff (OCD). Tough to hear. Kids are supposed to be kids, and not have to deal with this kind of stuff. I wish I had good advice for you. But it sounds like you are making all the right moves so far. I am cheering hard for him.

I find your theory on the counterintuitive OCD stuff to be thoughtful and interesting. I'm going to use that with my son. And you're right, there is NOTHING harmful about wearing the same shorts to school. Nothing.

Thanks again for your reply. Again, I've re-read your thread to me a number of times this year. Until recently, it seemed like Ashton (on his vocals at least) seemed to really track your oldest sons experience. I was hoping to get the same (on the vocals) and have them go away. I guess I'll have to just wait it out, and I am strongly considering doing some diet/supplement, blood/urine/saliva/stool testing for his gut/general nutrition. It's hard for me to just sit back.

I wish the best for you and your boys. I have 4 boys. It's a pretty wild ride. I'm sure yours is the same. Thanks again for your positive attitude and for the update(s) on your wonderful boys.

If you have the time, let me know if you ever did any testing, or any other major environmental/dietary changes, and if that did or didn't do anything to help.

Have a good night.



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13 Jan 2019, 2:57 pm

I can hear my son (the 9-yr-old) right now, clearing his throat every 5 seconds. He's playing a video game. I have to ask myself, is HE frustrated by it? Upset by it? I feel like the answer is "no", and that in fact if there is a source of anxiety about it for him, it's mainly in that he can feel MY anxiety about it. I'm afraid he feels pressured to control it because he doesn't want ME to be anxious about it. I feel that this the thing you really need to guard against. Kids are very savvy at picking up on that stuff.

Do you know if he does the tics at school? Are his teacher(s) pressuring you to do something about it? When my oldest son was in school, there was tremendous pressure to find solutions, and sometimes there aren't any, other than time and patience. There was a lot of unnecessary anxiety.

Re: the diagnosis. I truly understand what a punch in the gut that is. But remind yourself that he's still the same kid, with or without a label. A diagnosis can be useful, if it helps him get support or services that he needs, or for him to better understand himself or find a community who can relate first-hand to him, then it's not a bad thing. Diagnoses are very hard for parents because it feels like a fork in the road where you're stepping away from some pre-conceived dream you had for your kid. But it's important to remember that that was YOUR pre-conceived dream. I get very upset when I watch TV shows like "Parenthood" (which to be fair has some great moments) where the parents confess to the kid that he has a diagnosis and they weep as they are delivering it to him, as though they've just handed down a death sentence to the kid. I mean, I think that is an honest and truthful portrayal, but wow. How damaging for the kid. I gather from what you said that a diagnosis is optional at this point? Like I said, just keep remembering that he's the same kid, with or without that label. The label doesn't set his behavior or his future in stone, and the lack of it doesn't mean he's "fine". Tens of thousands of parents who are at this moment living the dream of a low-maintenance Kindergartener will be faced with horrible trials of drug and alcohol abuse in the teen years. There are no guarantees, there is no "safe" where we can rest and think "he's going to be ok and I don't have to worry any more."

Re: testing, diet, supplement. This is a very sensitive topic and I hesitate to get into it too in-depth here, but suffice to say I have not gone down that road. I'm disturbed by the industry that has grown up around developmental disorders who are very happy to take money from desperate parents who, like you and I, feel the need to DO something. (Because running tests, looking at printout data, and dispensing medication is all concrete action. You feel like you're addressing the problem.) One thing to keep in mind is that putting strict control on what he eats and linking that to his behavior may cause even more anxiety and send a particular kind of message to him. I would be very cautious. For me personally, I have not done so because I have found no hard science to support any of the claims. I will probably be totally flamed for this, but eh. It's just my personal stance.



Daveturville
Butterfly
Butterfly

Joined: 8 Jan 2018
Age: 46
Gender: Male
Posts: 13
Location: San Diego

14 Jan 2019, 5:54 pm

Thanks for writing back. And also thanks for letting this be public. Maybe someday someone will read this and it may help them. I have felt so alone and helpless at times. I can remember desperately searching all the forums everywhere just trying to learn, and hope.

Did you guys have any sort of a Tic disorder in your family history? For us, that's been one of the tough things, as there is none on either side of our families. In fact, I didn't even know the work 'tic' or what it meant until last December. And it's weird, one of my twins (2 years old) already grabs his lip a bunch. Over and over. Jeez. The things we do to ourselves as parents (I'm already stressed that he will have tics).

So your 9-year old really does clear his throat every 5 seconds? That's not an exaggeration? That's what Ashton is doing (5-20 a minute). I'd say its more of a strong grunt that a clear. It still clears his throat, but it's a more quick and violent grunt (often loud) that clears it, versus a stereo-typical throat clear. And it happens all day, from when he wakes up till when he goes to bed. Some minutes it gets softer or less frequent, like when he eats. But when we read, or if there is a screen, it gets bad. It crushes me. When he tries to fall asleep it's bad. He also claims to 'itch' a lot, and will do some scratching throughout the day. But that's not noticeable. He does some shoulder stuff a few times an hour, but that's not a big deal right now. The vocals are relentless though. ALL. DAY. LONG.

I guess it just gives me hope that you have a child (your oldest) that would vocally tic super often, and then had it fade. His were in fact all day, right (your oldest) at their worst?

I can say that I don't think it bugs him, much. But I know he is aware. When it was down in the summer and fall (it was still always there, but much less frequent, like 1 every few minutes) he commented to my wife once that "his cough is gone." He seemed happy when he told her that, from her report. And it made my wife almost tear up because we always wondered what he thought. The fact that he seemed happy about it was hard to hear. She immediately told him he could "cough all he wants" and tried to reassure him. BUT, I don't think he's super bothered. It hasn't impacted him socially yet or in school (more on that in a bit). He's still only 5.

BUT, I know he knows it bothers me. I have tried my hardest to not have it affect me, but it does, and I know he picks up on it (my anxiety). No matter how hard I try, I know that sometimes I turn my head to look at him when he makes a loud one. He just knows, and it's hurt my relationship with him a bit. Like you said, I'm sure he can feel MY anxiety. As hard as I try, I still screw up in this space. Almost every day.

Regarding school. The first half of the year, his stuff was mild. It would be 1 every minute or two or five. It wasn't noticeable at school. Especially in kindergarten, where all the kids make sounds and stuff. His teacher has been supportive and is aware, but we haven't had any issues. That being said, last week was the first week back after the break, and his tics have been terrible. So I don't know where we are. It could be that the teacher is waiting it out for a few weeks (I did e-mail her and give her a heads up that it's flaring badly). But it's currently uncharted territory. Ashton is super compliant, and wants to please. He is not a discipline problem and he does his reading and writing well. But I haven't seen the pressure yet that you described with your oldest. If you don't mind, what was he doing that led the school to pressure you? The tics? OCD? Were they asking you to medicate? What were they wanting you guys to do? (I hate our system, btw).

THANK YOU for your strong opinion of the diet. I have read all the books. I've even talked to a lot of the authors in this space (getting rid of tics naturally). While I would do anything to help him, I just haven't pulled any triggers yet. It's weird, him getting sick was certainly a HUGE trigger, as the tics exploded and he's still a little sick. So I DO believe in triggers and the environment lifting tics and making them worse. So I also believe it could go the other way (eliminating stuff may help). But I've always thought 'if I make it so he can't have cheese or milk, or wheat, or go to McDonalds once in a while, am I causing a lot more anxiety? (another trigger)." Is a radical diet (even if healthy) going to produce other side effects, like him thinking he's weird, or whatever? SO I just haven't been able to do anything. It's for this reason, that a part of me would just try medication first, as it's just a pill. Yes it's dangerous to put meds in small kids, but it's also WAY less of a lifestyle change than gutting my pantry. Again, I don't know, that's why I wanted your opinion. And you have at least one kid who had bad vocals that are now gone. Not saying that will be my story, but I like the opinion. But I AM in a space where I want to do something now, which is hard, and I need to hold back. But me asking you is just getting data from people that have dealt with this stuff before, and I'm very thankful for your honesty. I think I intuitively have the same stance as you, which is why I haven't done anything yet, even though I want to.

Finally, I agree on the 'Parenthood' stuff. I've cried more hours than I can count, but I will try to never do that around him. And if/when we get to that conversation, I/my wife and I will be strong. Still hoping to not have that conversation though, if I'm honest.

Let me know on those questions if you get a sec. No rush. THANK YOU. It's nice to not be the only one out there with this stuff.



carpenter_bee
Snowy Owl
Snowy Owl

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Joined: 25 Oct 2012
Gender: Female
Posts: 144

14 Jan 2019, 7:10 pm

re: history of tic disorder: none that I know of. my brother certainly would have been dx with ASD if he were a kid today, but in the 70s he was just considered a weirdo. but his behaviors were more like ASD-typical "stimming" behaviors like spinning. I don't remember his ever having vocal tics. I don't know about my husband's side, but none of them have ever mentioned anything like that. I personally get things I like to call "autism brain" (I consider myself subclinical Asperger's) where I get stuck in loops of words or pieces of songs, but I don't vocalize them. I don't think it's that much of a leap from "typical" human behaviors like getting a song stuck in your head, or jiggling your knee nervously in a chair to stuff like vocal tics, but humans are so darn savvy at noticing when behaviors stray even the tiniest bit from the norm and reacting very negatively about that. Lots of shame.
Back when I was researching TS for my own son's symptoms, I remember reading a story about a kid who had pretty severe TS and he was able to stay in his mainstream class at school because of good education about his symptoms-- his mom went in and talked to the class about his noises and eventually they just faded into the background like any other noise kids filter out automatically like people sniffling or shifting in their seats or dropping things on the floor. It was a great story and proof that education is really important when it comes to accepting other people's differences.
But yeah-- when my oldest first started his vocal tics-- the grunts-- it took me completely by surprise (no family history) and was the kind of thing where, as a parent, i KNEW in my gut it wasn't "normal" and that it meant something-- that it was yet another sign (I'd had a few by that point) that I had a different kind of kid, and that there were challenges ahead.

re: my 9-yr-old. Yes, he was literally clearing his throat every 5 seconds. that's what clued me in that he was ticcing, and not actually dealing with an allergy or something-- backed up by the context (increase in frequency during reading or video games or YouTube). it sounds exactly like someone trying to clear his throat because of a tickle, or maybe a piece of popcorn stuck or whatever. my oldest son's throat tic was more of an odd grunt-- like a tone.

When my oldest's sons tics were at their worst, they were pretty much all day, though I think they weren't that bad at school (I'm sure they would have told me if they were). I think school was so stressful for him that he'd pretty much shut down there. He did have some physical tics at school that drove them crazy, like touching the skin above his lip with his tongue. They HATED that (thought it was gross) and would penalize him for it, even though I told them it was a tic and they should ignore it and certainly not shame him for it. Jerks.

I think not letting it bother you just takes practice. Eventually you won't even think about it. It's the BIG THING for you right now because it's PROOF that something is not right. If you will, it just shows that you have a big heart and are worried about your son. So don't beat yourself up too much for that. I would maybe consider talking to him more openly about it. Why not ask him how he feels about it? If you avoid the topic when he's obviously aware of it (and aware that YOU know about it) it just conveys more of that feeling of shame. It took me a while to talk about AUTISM out loud with my son because I grew up at a time when that word carried a lot of shame and was always, always equated with mental retardation and people kept behind closed doors, etc. Talking about it openly takes that shame away. You don't have to talk about diagnoses or anything. Just ask him how he feels and if there's anything he wants to know... stuff like that. There are some great books out there too, even for younger kids. (I'm thinking of a particular series that I can link you to, although you've probably already come across it in your own research.)

Re: school... if he is compliant and does his work, he probably will do fine. My son's problem was that he refused to do his work (he thought it was stupid and pointless) so of course that was a huge issue. If he'd just been willing to play the game, things would have been very different. Because he wouldn't do his work, they wanted to warehouse him in a one-size-fits-all SPED room where his education would have essentially been over. At that point I said "no thanks" and pulled him out so that I could tailor his education to his special interests (science and math and tech).

re: diet... one of my nephews (he's an adult now) was on a gluten-free diet for his entire childhood. I saw firsthand the effect that had on him... like at restaurants where everyone is grabbing for the bread appetizer while he just sits there. Meanwhile, he's still autistic in spite of being deprived of bread, and grandma is still telling him to stop hand-flapping at the table because she thinks people are staring. All of it really pisses me off. I never asked him, but I really truly hope that once he moved out for college, he ran some double-blind trials of his own on gluten to determine where the diet had any effect whatsoever on his behavior, and whether or not those subtle differences (if they even existed) were worth it.