Our son who is 9.5, with ADHD and dyslexia, has had different tics on and off. I never would have called them tics but recently they seem more severe at times and he attempted to explain them to me tonight:
Through tears, he said his body just wants to keep doing certain things. And sometimes it hurts. For example he said he’d been biting his lip, until there was a bump there so he moved to the other side and his lip bump cleared up and then one developed on the other side. He says it’s hard because he doesn’t want to do these things but his body keeps doing them. There is one with his feet, he will kind of jump walk along at times. Or sometimes whistle over and over again when he’s reading or doing something quiet. Has anyone been through this? His pediatrician said this happens, they can come and go, as long as it’s not harming him Not to worry about it to much.
he takes guanfacine er at evening time and he takes Adderall during the school days.
this has helped his focus at school a lot this year for the first time.
if anyone has any suggestions or just understanding of what’s happening I’d love to know!
thank you
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Vintagecollector
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Hi there, I feel for you and your kiddo. My son (a little older) has cycled thru tics for years. And with no disrespect to your pediatrician, I take issue with his/her comment of there being no harm. It sounds as if it's causing him both physical and emotional discomfort. Personally I feel it's a sign of something going on underneath that doctors just don't understand yet. If you're inclined to go down the root-cause road, you can look up Piper Gibson at Regenerating Health. I haven't used her, but appreciate her approach (tho quite expensive). For us, we've tried magnesium and a variety of other things. Since he's a little older, I've been trying to make him aware of his triggers, which are stress (school) and possibly chlorine. Anyway, I hope he finds some relief. Good luck!
Thank you! We are going to meet with his pediatrician again soon, I agree that it is causing him at least some emotional discomfort. I really appreciate your reply!
thank you for your reply. my 7 yo recently started having tics. I didn't know to call it that, i thought it was neu but we asked his peds about it and was told the same thing to "not worry about it if it isn't hurting him" (he moves his hands like playing piano keys, and his eyes shoot to the corners of his eyes at random when speaking.) We have been giving magnesium here and there but nice to know someone else doing it as well.
Tics seem to go along with ADHD. In my son's case, we noticed the tics before we knew he had ADHD (though we began the ADHD journey when he was 7). My goal has always been to make my son feel comfortable in his own skin. We all have our quirks and the secret to contentment is being able to accept ourselves as we are. I was very pleased when I saw Billie Eilish speak openly and without shame about her tics in an interview with Letterman. To paraphrase her, she said they are just part of who she is. The same is true of my son. Some of the tics are downright funny and I can't help but laugh. In my son's case, that I find some of them funny seems to help him feel more comfortable. He likes to make me laugh. He knows we love him just the way he is, tics and all. He does seem to have some control as he ages. He seems to have minimal tics around his friends. Perhaps they are better if he doesn't think about them. Nothing we have done, including targeted OT, has ever made a difference. Stress makes them worse as well, and they decrease on vacations. My son is a really great kid and the tics just don't bother me. That helps them bother him less. Good luck to you and your son.
thank you for posting this. honestly reading other peoples experiences help me validate my own and make me feel less like i am on an island. I appreciate what you said, my wife and I for sure try not to stress about it or point it out to my son. and we do see when in a more relaxed state he doesnt really exhibit it as much -- but when he is stressed it is more constant.
sometimes meds like that can create tics. My kid got them on methylphenidate. That’s why we decided to stop them until she gets a gene sight test.
My stepkid’s tics went away naturally when we didn’t point it out (pointing it out usually made it happen more). My daughter has tics and it happens more when she’s stressed.
For the oral biting and such, have you tried chewelry/chewies? I use them with my orally fixated kids in my class and it helps them to have a socially acceptable fidget/tic. It lowers stress and they get less judgement as well.
ADHD medication can cause the tics, as well as Tourettes. Several of my clients with ADD and taking medication have noticed the symptoms disappear when they stopped their particualr meds. A couple of my younger clients who were in high school and or university opted to take their meds only when studying for exams and not otherwise. Omega-3 / fish oil can ease symptoms as well as zinc, magnesium and digestive enzymes - check for other vitamin and mineral deficiencies as well. Stay away from sugar and processed food as diet is especially important...
my daughters started out with vocal and motor tics which is what you’re describing in your son. Typically they wax and wane but if they persist for over a year, it’s usually considered Tourette syndrome. Kids with Tourette’s often have ADHD. Our pediatrician had a similar approach as yours, but after about six months, I asked for a pediatric neurologist referral. The neurologist suggested CBIT (comprehensive, behavioral intervention for tics) with an OT which helped her find a competing behavior instead of the tic. This has helped her immensely.
She was diagnosed with ADHD late last year, and we tried three stimulant medication’s, all of which increased her ticing. Guanfacine ER is a treatment for Tourette’s but we didn’t see an improvement in her ticing. We just started Strattera and her taking has decreased mildly.. I’m hoping that that with continued use, Strattera will help with ADHD and her tics.
also cbit is expensive even with insurance, and not widely available. We happened to live near a major Medical Center. Hope this helps.
Hey there. My son also has ADHD, and developed tics around the age of 6. (they came and went). For years I was being told by PCP that it " was normal". Finally, at the age of 9 I requested a referral to a neurologist for further evaluation. He was diagnosed with Tourette's. My son completed CBIT (Comprehensive Behavioral Intervention for Tics), which helped a lot! There is no cure, but it def made a difference. We have learned to identify triggers (environmental, emotional etc). I also supplement with magnesium gummies.
My suggestion is to speak to your doctor about reducing stimulants (Adderall, etc.) . After experiencing similar issues, our doctor explained that stimulants forces a large amount of dopamine into the system. It can help in the short term with focus, but easily leads to side effects - hyperactivity (jump walking), impulse control problems, tics, sleep problems, etc. We were happier on a combination of Guanfacine and clonidine, which seem designed to help modulate dopamine release. I actually now believe that stimulants and Guanfacine are at cross-purposes.
Interestingly, I just learned that dopamine release is the cause of "goose bumps" and "shivers" when we experience something exciting. Isn't it a similar involuntary motor control... only that it lasts only a moment. Hope this helps!
Thank you! Yes we are going to speak to his doctor soon! I love that goosebumps analogy because that makes so much sense…. Thank you so much for sharing your experience
Hi there, my son is 15 now, and in our experience the tics happened when the stimulant medication was too high. We started guanfacine er also specifically for that purpose, to reduce the stimulant during the day. My son has always taken methylphenidate er and 2 mg guanfacine. Maybe try tweaking the dosage? Another option you could try is adding a magnesium supplement, if you already don't do this. It helps the medications work better, helps with constipation from stimulant meds, and is calming. Calm Magnesium citrate gummies or powder - is idea for constipation or magnesium glycinate powder. Good luck!
Thank you for this! We currently give the 2 mg guanfacine in the evening and from what you said I’m wondering if we should go back to giving the medications at the same time before school. In the beginning the guanfacine made him very tired so we gave it the evening, but now he’s adjusted perhaps we should try them together again. I’m crateful for your advice and sharing your experience with me! And we give magnesium also at night, perhaps the timing is key and we should give them all together. Is that what you do? Thank you, again
My son takes the guanfacine & methylphenidate in the morning. He takes Magnesium in the evening. Not sure how much difference it would make to change, but you could try it. The biggest change for my son was reducing the stimulant dosage, which we were able to do once we added the guanfacine.
I posted a reply to another response below. I have only become familiar with tics and as my son has started to exhibit some only as recently as last month. I wish I had more info to offer you, but what I can say is that i sympathize and empathize with what your son is going through. hoping you can find more information and relief
My son had a tic that looked like he was stretching a sore neck. Out of concern, I'd ask about his neck (thinking he injured it in hockey or something), suggest remedies and at one point I even gave him a neck massager. He played along like his muscles were sore -- probably out of shame that he couldn't actually control it. When his neuropsychologist told us that it was actually a tic and that we should just let it go and not bring attention to it, within weeks of our changed reactions, the tic was gone.
My son developed tics about 6 months after starting a stimulant at age 8. He would stretch his neck just like someone else mentioned, blink, squint, and shrug his shoulders. He haaaated it. All of his friends and teachers were asking him what was going on. Multiple teachers asked if he needed his eyes checked when he started the squinting. We tried so hard to get him to not worry about it or let it bother him. Luckily school was almost out so we stopped stimulants for the summer. We started his stimulant again this school year but instead of one 10mg dose, he now takes 5mg in the morning and 5mg at lunch. It works so much better actually and no obvious tics! He does a couple tiny little ones that you’d have to stare at him to notice but we’re all ok with that!
I don't know if this will help but my daughter in HS developed a hair pulling tic. I had not realized but she came to be in tears telling me about a balding spot where she kept pulling. We had increased her methylphenidate for focus and had dropped her Intuniv because we didn't think it was needed. Her doctor immediately wanted to take her off the methylphenidate....but I knew that would wreak havoc with school and this was a new thing since messing with meds. So.....we added the intuniv back ( 1 mg) and the hair pulling stopped. I did some research and found that Intuniv can be used for tics as well. So just something to consider. Not sure if it helps you are not. The body is so sensitive to everything we do or change. Praying you figure out how to help your child.
It appears that you've received lots of feedback from others, so I'll be brief. My 11 YO always has had repetitive behaviors like you've described. When he was a toddler, we thought he loved drumming and bought him a drum set. No, he just can't stop waving his arms sometimes. He clenches his hands together, jumps up and down, etc. He also harmed himself by rubbing his eyes so much that he rubbed the skin off! He had big, bruised circles around his eyes most of the time when he was 4-5 YO. He also would twist his hair, twist his shirt collar, and currently, he chews his hair. These behaviors are more extreme when he is excited, like during a TV show or a game (video or board game). I never thought much of it. It was just part of who my son was. When he was 8 or 9, a neuropsychologist diagnosed him with ADHD and a tic disorder, among other things.
However, his psychiatrist has never seen his behaviors and doesn't think he has a tic disorder. His older brother is on the autism spectrum. After lots of research, I'm convinced my youngest and I both are as well. These movements are very common among those with ASD. I have my own 'tics' but they are subtle. IDK if anyone else suggested the possibility of ADHD and ASD comorbidity, but it may be what is going on. With a low-stress environment (currently he's homeschooled), my son's tics don't appear nearly as often, and they are pretty benign.
TL;dr: sounds like a comorbidity with OCD that can be solved with both therapy and a separate medication that targets anxiety and compulsive behaviors.
Anecdote: My son is diagnosed with mild OCD in addition to ADHD, (ODD and a math learning disability).
I looked into comorbidities associated with ADHD because I know a lot of people with ADHD but they don’t all have tics (especially if they have the type of ADHD that is primarily characterized by distractibility as opposed to hyperactivity, impulse control or combined type) or ODD or (math) learning disabilities and not all ADHD meds necessarily help with tics— and I don’t know of any medication as of yet that will help with the ODD or math learning disability but, I digress.
Someone asked about getting a full panel of tests for their child and I’m so glad that I had my son examined by multiple psychologists and got a full neuropsychological panel done on him so that we could address all issues with both medication and treatment.
For my son, we found that the most effective thing was to focus, not on the tics themselves, but on the underlying causes of the tics with an anti-anxiety/anti-OCD medication and play therapy. This OCD medication also helps a little bit with the impulse control, but it does not help with focus, distractibility or hyperactivity.
Some people pointed out that some types of meds will actually cause tics. I know everyone’s experience is different, but I will relay ours: My son takes separate medications for his ADHD (Guanfacine and extended release Lisdexamphetamine) and his insomnia (Hydroxyzine occasionally).
He used to take Strattera (and Guanfacine) which was great, especially for his mood, but it did not help with the focus or distractibility only the hyperactivity so that’s why we had to switch it out.
In our personal experience none of these medication’s have increased or caused his tics. Guanfacine in particular is not a stimulant.
However, none of these ADHD meds helped with his tics either. The only medication that helped with his tics was the one that he was specifically given for OCD (fluoxetine). In fact, that alone entirely eliminated most of them before he even started ADHD meds.
I’m not a doctor, and I’m only relaying my anecdotal information, but I would also disagree with a pediatrician who tells me that there is no harm.
One thing that I noticed about the impact of the tics on my son, is that not only can the tics, depending on what they are, lead to some physical discomfort (like chapped lips, chaffed skin, or even bald spots on one’s head), but other children (and adults) notice them, and this can lead to some bullying and then emotional pain as a result. Also, with regards to the physical, sometimes the effects take time so someone may consistently crack their joints, and have no problem in the short term but eventually this can lead to joint pain.
In any case, every child is different, and every situation is different, so what worked for us might not work for you but I hope that by sharing a little bit of our story here it helps you to be more informed as you consult with various specialists in search of a solution for your son.
Stimulants can cause bruxism, which is grinding or clenching teeth. Which I assume is the reason he bites his lip.
On Adderall alone I had the habit of clenching my teeth. I didn't have that issue on methylphenidate (Ritalin, Concerta). But, once I changed my medication to supplement Adderall, I no longer had that issue. I take modafinil/armodafinil which allows me to take a lower dose of Adderall and working synergistically, for me more therapeutic than Adderall alone. I also take Strattera and guanfacine.
Try switching to a methylphenidate drug and see if that solves the biting issue. Plus, it has much less potential negative long term side effects.
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Focalin ER/ Dexmethylphenidate induced tics
Am I the only one? I've become the type of parent that I said I've never become! Argh!
Free from angry outbursts 
IEP meeting went great
9 year old with ADHD and on medication talks to himself a lot
