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

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Thanks again for answering my questions. I really am in an isolated and (sometimes) lonely place with all of this. Sorting through the potential plans for treatment, or a lack of treatment, just leaves me with such ambiguity. Having people I trust (and I trust you), that have been walking this path ahead of me, has been a blessing. Quick story:

So last summer I went (by myself) to the 'Parents Day' portion of the Tourette Association of Southern California. It had a few presentations, and I was invited to go. At the time, my son had been ticking for 5-6 months, and I was just curious about it all. I live in San Diego, and the conference was in northern Los Angeles. It was a 3 hour drive for me to get there. Basically, I drove from the southern point of California, to the northern part of southern California, and as I was driving, I realized that nearly 30 million people live in this space that the chapter covers. 30 million. Yet only like 100-ish parents were at this meeting. Obviously many families with children with TS didn't attend. But still. That highlighted how isolating this can be. In a space with 30 million people, only a handful of families made it to this camp. The people there were wonderful, but it struck me how isolating this all is.

After that day, things got better for my son. I just kind of waited it out, and the fall was much better (as previously mentioned). But now he's really flaring (as mentioned), and I am really grappling with what to do. Just last night he told my wife that "I want to stop coughing," and he asked for some cough drops. He's also covering his mouth each time, which tells me that someone has told him to do that. It just breaks my heart. He's grunting/clearing his throat all day. Especially when in alert-intake spots (I can't help but think of him at school grunting every 2 seconds in class when the teacher does a story read in Kindergarten). It just messes with me. It's about once every 10-15 seconds unless it's on a computer, a tv, or someone reading to him. Or if he's falling asleep. It's rough when he tries to fall asleep.

So I see it like this, now that he's saying stuff. I have 3 options:

#1 = Do nothing/wait it out. Even though he still said that last night, he doesn't seem like it's crazily affecting him. He has an understanding teacher, and we could likely get through the rest of this year just fine, as kids don't really say anything (I think they don't at least).

#2 = Go get the blood/urine/stool/saliva tested and then see if he has food or allergy sensitivities. For over 2 years he's always had runny poop. Even before the ticking. I've always wondered on this. But this method also would require more supplements, maybe a smoothie every day, and possibly a new diet. And while this sounds 'safe' I freak out for the exact reasons you stated. I AGREE WITH YOU. Even if the intention is good, he will know we are all eating differently. All that. I could see that causing harm. I mean, he doesn't have diabetes, where it's clear. This would all be a risk, and it's a big one to start telling your kid he can't have a cupcake at a friends party. Yet, I read all over about Moms that have had success doing this. Gah!!

#3 - Take him to a nuero, get a diagnosis, and test medication. This freaks me out. But on the flip side, it's only a pill, not a huge diet. Taking a pill wont bug him at all (the taking the pill part). But the side affect potential. The young brain. All that. You read the horror stories. BUT, I have talked to a few parents (at that camp for example) and they all medicate and they mostly have really good things to say about it. Gah!!

So that's where I'm at. It's all a cluster. I just want to do what's right to help my son. He's commenting in it now, and wants it to stop. He's also INCREDIBLY sensitive. He doesn't want to stand out. Part of my urgency is to maybe help 'fix' it now, 'before' it becomes an issue for him. I mean, I could wait it out, but if it gets worse, and he's then in 1st grade, I worry about his self esteem.

Anyhow, I'm just a messed up Dad who would do anything for his son. It's comforting knowing you have boys that have ticked and that one hasn't had it continue. It's also comforting to get your opinions. And I also like that this thread is public, so that anyone that is out there can see this, and maybe it could help them. (If for no other reason, if they feel like a psycho like I do, they know they won't be the only one).

Grateful for your insight and for you sharing. And I'm pulling for your boys too.

If you have any thoughts or questions, feel free to share.

I fully get the isolation. When it came time for me to choose to withdraw my son from public school, I did not have anyone in my everyday life who thought it was a good idea. Everyone thought it was a terrible idea. But nobody knew the situation as well as I did, so it was hard to trust those opinions. I got a lot of support from people on this forum-- other parents who'd been through the same steps I was getting ready to take, and I found I trusted their experience and advice more. Eventually, though, it comes down to you, and the decisions you make, and maybe sometimes they're good and maybe sometimes they aren't so good, but you figure that out and adjust as you go along.

I also live in CA-- there is an obsession in this state to use diet to address any and all problems both for children and adults. Maybe because SoCal people are interested in health and diet and the mind-body connection... but it's misleading (I think) to assume that we can control everything just by the way we decide to steer our ship. Changing a diet can certainly give you additional data. But I think many people who embark on special diets are so invested in seeing a correlation that they aren't open to interpreting the results objectively.

I feel like with the point you're at (and the three options you've laid out) if I were to advise you, I'd say well, why NOT go talk to a neuro and see if a dx is appropriate. You are not locking yourself into anything. You can try meds. Or not. Or try and then change your mind. None of this is permanent.

I feel like both you and your son could benefit from some professional support and guidance, from someone who REALLY knows their TS stuff. To this end it would be great to find someone who specialized in TS rather than a one-size-fits-all professional. I say this because I have torn my hair out trying to get help with my son's OCD from a number of different professionals, and have at this point determined that I should have just cut to the chase and gone for an OCD specialist from the get-go. You really need a person who has made this their life work-- these will be the people who welcome you with open arms and are invested in getting to the bottom of what's actually going on (whether or not it's full-blown TS), and what can be done to help your kid relax and feel good about himself.

The way you're feeling right now-- it won't be like this forever. Even if he gets the dx. In some ways, getting a dx can even help YOU b/c you can finally work to accept, and then move onto "okay what next"... rather that putting so much energy into resisting the possibility-- scrambling to find ways to disprove it. (I have BTDT.)

Such good stuff. Thank You so much. Yes, CA is a diff place. I grew up in the Bay Area, but now have my family in San Diego (Coronado specifically). I'm thankful for a lot of what is here, but people do take themselves a bit too seriously at times, and the diet piece is part of that.

IDK, I think it does make sense to go straight to the Nuero. For some reason, my wife and I hesitate to do that. Probably the fear of the diagnosis. The fear of explaining to my son about the 'chronic' nature of what this may be. Fear of walking through the hospital hallways to get to her office (no 5-year old should have to do that). I mean, until a month ago, I thought this may be fading. We'd had really about 8 months of reduction. The first half of school was not a big deal. He'd tic, but only once every few minutes. NO BIG DEAL. Now it's 5-10 times a minute. It's just heartbreaking. And it's just not stopping. I think the Nuero (going to one) just signals the finality of this for some reason. But it will likely be where we end up in a few weeks/months.

For now, we've decided to get his blood/urine/stool tested. We are trying to get into an integrative pediatrician that I met with last week. She claimed she could do all these 'tests' and tell us if his body isn't balanced. I've stated before that I've always felt like it's weird that his poop is always runny, and he always goes more than once a day. Sometimes 3 times a day. This doc has told me that she can see if his 'levels' are off. She can tell if he's sensitive to wheat or dairy. All that. Who knows? I think our plan is to tell my son that 'we do this with our 5-year old's. We get some blood drawn.' That's how I'll sell it to him. That's how I'll tell him he needs to have a needle stuck in his arm.

I'm sure the doc will want to put him on a smoothie and then a diet. IDK. I think I just want to see what the panel of blood and other tests say. I'm skeptical. But maybe it says he has a huge thing for dairy and we just try to eliminate that for a few months and see what's up? Maybe his bowels work better and maybe that helps the tics. IDK.

I guess I'm still hoping for it to fade away, like your child #1 (at least the vocal tics. I am NOT minimizing your frustration with the OCD and I pray for you and know that is heartbreaking). I guess by not getting a diagnosis I'm telling myself that it has a better chance of fading away (I know I sound like an idiot). My beautiful son makes a grunt/throat clear ALL DAY LONG. And he's also having motor stuff that is light all the time (but the motor stuff wouldn't really stand out a TON if the vocals were gone. He mainly brushes his hair, rolls his neck once in a while. Does a shrug. Basic stuff and it's constant but not crazy, like the vocals. the vocals are wild. All. Day. Long).

So who knows. Maybe getting the blood work and allergy testing is going to help? I doubt it will. I think if there is nothing obvious in those results the doc will suggest a diet. At that point I will likely decline and call the Nuero. I agree, they will likely be empathic. Supportive. All that.

But it also tells me (mentally) that this is not going away. And that breaks my heart. I'm not kidding when I say I've devoted hours everyday to this. Lost sleep every night for a year since it started. Stressed a lot. Maybe all that makes me think I'm fighting it off or helping? But I know that's likely not the case.

Anyhow, this community is small. I thank YOU (Carpenter Bee) and all that are going through this for the support. Breaks my heart for your boys and for all the others. I hate it.

Update/(Hope Carpenter Bee reads this and responds eventually),

So I'm just chiming in a bit. I find that these forums are full of onset stories that are scary, but there is very little follow up on what is going on. For those that have read this thread, you will see that the thread has been largely focused on the journey of my middle son, Ashton, who is now 6. Let me update everyone on him.....

Last year at this time his vocals were really rough (lots of coughing, and you can read about that). I'd say around mid-Feb they started calming down a bit, to maybe 1 a minute. Starting around March they went way down, and since March they have been VERY hit and miss on the coughing/vocal. A few moments or days where it creeps up, but most of the throat clears/coughs only happen when they 'make sense.' Like when he's sick, or in the morning, or whatever. I feel very blessed that we are on nearly 10 months of improvement there. Feels like the pattern of Carpenter Bee's older son. He has had some motor stuff. He was hopping every few steps for about 6 weeks last spring, and he was also constantly twirling his hair for about 6 weeks last summer. But outside of that things have been mild. If you didn't know any better, he just looks very fidgety. But it is WAY better than at onset (2 years ago) and certainly better than at that last crazy pocket for a few months last Dec-Jan (when he got sick). I am still crossing my fingers each day that the improvement stays. He hasn't seen any doctors and we haven't changed the diet (outside of quasi eliminating milk). He's far from out of the woods, but I am Thankful for where he is at.

Now, another update. And this is hard for me to type. My older son (who is now 9.5) is now going through some of this stuff. My proverbial hands are now just 'up in the air.'

His story (and I'll keep it brief for now): He's in 3rd grade, and hasn't displayed any of this in his whole life (and believe me, I'm a hawk now for this stuff, and notice EVERYTHING, given what I've been dealing with on Ashton. Well, on Oct 2nd, I noticed some pretty heavy blinking and minor eye rolling. My heart sunk. Like SUNK. I immediately texted my wife and I fell into immediate anxiety. It was and is tough. That turned in to more rapid blinking and eye-brow raising for about 6 weeks. That went away and then he started thrusting his jaw a bit while twisting his head. This is very frequent and he is doing this like 10-20 times a minute. He's had a week or so of throat clearing, but that went away. Right now he's just doing this jaw thrust/head twist ALL the time. I'm totally struggling with it. 2 kids now. And I have twin 3-year old boys too so I can't help but wonder why? Again, no tic history in my family. It's all so strange.

Anyhow, I'm asking for advice. We never talked with my younger son. But this boy (Caden) is 9.5. He's not acting like anything is wrong. But I have read hundreds of accounts of people with Tics and they all seem to claim they knew something was happening, and this is as young as 5-6 years of age. He's 9.5. But he's not talking and he's acting normal. I do think his aggressiveness and energy has increased, and he's displayed more anger too.

Earlier in this thread (talking to Carpenter Bee) you conveyed a strong need to talk to your kids about this. My fear is that if we talk to him, we can't 'un-talk' it back. Am I rushing to talk to him? Does he know something is going on? Do I wait for him to come to me/my wife? Do we get out in front of it?

Part of my anxiety is that I saw my middle son's tics improve a lot with patience and we never made it a big deal to him/never really talked with him. But he was 5-6. This son is 9.5.

Thoughts? How did it go when you talked with both of your sons? Would you do it differently? I'm curious/anxious for advice and I respect that path you are on. I've re-read this thread 15 times in 2 years, and I also think it may be of use for others as I'm sharing my story.

Hope you and your family are well. Any update on your guys?

This may not be helpful at all, but did the 9.5year old have a cold/allergies lately? As a child, I tended to get fluid buildup in my ears when I got a cold, and thrusting my jaw forward/tilting my head/yawning helped the fluid drain. Then the draining fluid tickled my throat, so I sometimes coughed. It may be worth checking into "normal" reasons before jumping to the neurological.

The blinking could also have been itchy eyes from a cold or allergies perhaps? Anyway, maybe check into those types of things before you have a talk that might scare him.

Posey,
First off, I’m a major fan of baseball as are my sons that I’ve written about. Not many better humans in sports than Buster Posey.

Thank You for your reply. You make a fair point. I think I’m ‘jumping the gun’ a bit based on the amount of times he’s doing it, and also going through a very tough few years with my other son (chronicled in this thread) with tics. I’m a little ‘fried’ and ‘burned’ by it all.

But allergies run in the family. I’ve had allergies to pets and pollen my whole life. Should this continue we will leave no stone unturned.

But my gut says tics.

Magna,
Thank You for your reply as well. Father to Father.

Regarding nutrition. If you read the full thread you will see that we ran the gamut to some extent w my second son. I never went into detail but I gave him a blend of magnesium and probiotics in the form of a drink. I gave this to him every night for the last two years. Has it helped? Maybe. His tics are way less. Or is that just the natural waning stuff? Who knows? All of this stuff is mysterious and super frustrating. I feel like I’m going in circles half the time.

But I have started giving it to my older boy too. For a few months. Haven’t seen much improvement and his situation has gotten worse. So know knows??

I also give them some fish oil and a vitamin E and standard multi vitamin each day.

I haven't read the full thread, but what jumps out at me in your recent post about your 9.5 year old is that this is NEW. One thing I've long held in my mind is the advice from the doctors to make special note of NEW symptoms.

I would probably talk to the child in a very non-specific way, and ask him what has changed in his life recently, if he's noticed any changes in his health, etc. Take careful notes and run it by his doctor. The cause for child B won't necessarily be the same as the cause for child A, unfortunately.

I have the same tic. It gets worse and better at times. When I get angry or stressed is when it gets worse. Mine isn't as frequent as someone I saw/met about a month ago; their's was a constant grunt. I just let it out since I don't care any more. When I was younger I had to hold a lot of things in. It made it very stressful trying to be like everyone else.