Hi, I am new here and my 8 year old son was recently diagnosed with ADHD. Before he was diagnosed, I noticed that he would have both vocal and motor tics that would come and go. This was on going through the school year. When summer came, we noticed they stopped. We then got the diagnosis and decided our best option was to medicate even though we knew that it might bring out the tics. He is on focalin xr 15mg and has a strong noticeable tic. Has anyone experienced this before? And if so, did you continue on with medication. Our psychiatrist told me it’s normal for his age group to have them and as long as the medication is working and the tics aren’t making him uncomfortable, that my son should be fine. He said that if kids start to make fun of him, then we would talk about other options. We had a little incident where his friend started doing the tics simply because my son does them so frequently. He wasn’t doing it to make fun of him, he did it because he wanted to be like him but he got grounded for doing so. I’m bummed because I don’t want it to affect him socially. Any tips, advice or thoughts?
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My 6 year old was diagnosed with Tourette Syndrome and ADHD this year, so maybe I can help a bit. Tourette runs in my family, and is frequently accompanied by ADHD.
Tics are actually more common in kids than people realize - a transient tic can show up in almost any child. Tics do flare up during the school year - especially the beginning & end of the year. My son had 3 noticeable tics going crazy in May (which was handy in getting the diagnosis!), and virtually none over the summer.
My son currently isn’t on medication for either condition, but to my understanding, the tic could be due to the school year as opposed to the stimulant medication. Our neurologist also said that until the tics are bothering him or causing social / quality of life issues, we should wait on medicating (but that we should act fast if that changes.) On the plus side - some non-stimulation ADHD meds are actually their first choice for treating TS. I think typically a combination of stimulant & non stimulant meds give the best results.
So in the meantime, I’m just staying in contact with his teacher about what tics we’re seeing / she’s seeing and what impact they are having. I also sent her some information from Tourette Association of America - in their Resources section is some great tools for teachers & parents. But really, if the tics aren’t bothering him, the best thing is for adults to ignore the tics & set the tone that it’s normal. And for my son to be familiar with his condition and be able to advocate for himself / discuss things openly with other kids & friends. Being confident and forthcoming about it really helps it not appear as something shameful and helps with normalization. Sorry your sons friend got in trouble!
My son started another medication for ADHD last year and the psychiatrist told me that one of the most common side effects was a tic. She also told me that she will discontinue the medication if he developed a tic as it was very uncomfortable for kids.
My son got tics on the XR as well. We switched to the short acting dose instead and they went away for the most part. When he’s stressed or anxious I notice sometimes they come back but very minor compared to the XR dose. You may want to consider testing. My dr also did not like keeping kids on meds that caused severe tics,
I remember this! When my son first starting taking meds in first grade we weee horrified by the head rolling tic he got from the adderall XR. We switched to vyvanse and they went away. However, we didn’t try the instsnt release type of a adderall and I’m sure that would have been better. This is a painful memory as I felt so so bad for my son and felt so much guilt for putting him on meds.
You could talk to your doctor about clonidine. My daughter has been trying it for the last couple of weeks instead of Ritalin to soothe the anxiety that is likely to be causing the tics. It also works for the adhd. Good luck
If the ticks get worse with stress, you can see about treating him for anxiety. My son has horrible anxiety, so that was our main focus in the beginning. Once we treated that, the other medications for ADHD worked much better (before they just exacerbated the anxiety).
Hi there..... I know it is difficult- I son has adhd and he is 6. No rice but major behavioral issues. We do not have him on medication. He is finally doing really well in school with an IEP and an aid. All days have been good days this past month ( I almost don’t want to celebrate, for fear of jinxing it)...take your child off of medication. I have been reading a lot about the GIFTS of having adhd and some of the more natural ways we can nurture our children who have it.
I don’t think there are enough long term studies on how meds affect kids later on.
And reall our children are so genius and apecial.
That’s awesome! Do you have him therapy outside of school? And if so what kind? Our dr told us to look into play therapy.
I tried to do this but because he was so aggressive at a young age they were worried about putting him in playgroups. 🙄🙄😫 I also had him speak to a child psychologist because I thought there was some kind of problem. I am kicking myself for doing that now, because there is no trauma, poor self-esteem, abuse, or any other psychological issues that my child with ADHD has. I have learned through so much education that it is ‘just the way he is wired’, and there are so many amazing qualities that he has. He is so super intelligent and extraordinary. I have changed a lot of my frustration towards his behavior into kindness and love and encouragement. I also run the heck out of them every single day LOL we even play outside of school for half an hour before the day begins. It helps tremendously.
I think play groups are so awesome and I encourage this!
Also I tell other moms with young kids with ADHD that when they are 0 to 5 it is nearly impossible for them to self regulate or for you to figure out what is wrong half the time. As he is getting older he is understanding himself better and he is becoming more emotionally intelligent and flowering. Just stay the course. If you can without medication. ♥️
ADHD kids process info all for ways all at once. They are little geniuses who get bored fast, and do not manage disappointments or not getting what they want. “The symptoms of add and adhd are associated with entrepreneurship” according to sciencedaily.com
Sorry for the spelling errors.. my two year was screaming for me while I was quickly responding to your post 😫
I'm having the same struggles with my ten year old twin daughters. The way it was explained to me is that kids with ADHD often have other issues (usually in threes). For my girls it's ADHD, the tics (a mild form of Tourettes), and anxiety. The doctors say my girls have always had the tics, but some medications can exacerbate them. Because my girls tics were so bad, I have had to switch medications quite often and after two years still haven't gotten the right one --- and they've been on almost everything! I wish you the best of luck, it can be sad seeing how much they struggle with this. But I agree with the previous poster that having kids understand what is going on so they can advocate for themselves is really important.
Thank you! My son too has anxiety and OCD. He was also diagnosed on the lighter scale of ASD. The dr said when that happens, it’s hard to see what symptoms come from what. I wish you luck too with your little girls. It’s nice to come on here and see that others share the same struggles.
I actually had the opposite experience with one child. My grandson would have tics like clicking his tongue, whistling, clearing his throat repetitively. But when he was stable on medication the tics actually went away.
His younger brother got terrible tics on Depakote . It started within days of starting the medication- shoulder shrugging kind of dragging one foot. We immediately stopped that medication.
Thank you so much for the advice. Like I said, this diagnosis was recent so it’s all new to me. All the advice and personal experiences help me understand what I should do with my son. I have to agree that school brings it out because it goes away on breaks. However, we started him on the meds before school and that’s when they came back. It’s been since mid July and they are still going strong. He opens his mouth so his chin touches his neck and then straight into a shoulder shrug. When I go to pick him up, I can see him doing it repeatedly because he’s is so anxious to go home. When I met with his teacher and let her know about his tics, she said she had noticed them. She said he’s doing fantastic in school. Our dr said we have to outweigh the pros and cons and that the benefits outshine his tics. I asked him about guanfacine and he said no, maybe we’ll talk about it later and for now he recommends sticking to the Focalin since he’s doing well in school. A part of me just wonders though if i should push for the non stim. I’ve brought it up several times but he’s insistent that we are ok with the treatment plan we have now. Do I bring it up again or find another dr who I feel like it more willing and sensitive to my concerns? Mu husband says I think too much into things and that I need to trust the doctor.
I gave up all meds for a while because the tics were so bad. My girls would pick under their eyes until they bled or pull their eyelashes out. It was terrible! My advise would be to find a psychiatrist with a lot of experience with difficult cases. There's nothing wrong with a second opinion. My daughters also have PANDAS, so it's been really hard for the doctors to figure out what is causing what. There are medications they can give with the stimulant to counteract the tics (they haven't worked with my girls but you never know). I have one twin who just last week started on Guanfacine (again), and the other is on methyphenedate, but I can see she is starting to pick again. I'm keeping a diary of what they are doing on what meds, you probably want to do that especially if you switch doctors so you can explain what's going on. After two years of doing this it gets tough to remember what worked or didn't work and why...
Is this the pediatrician? If so, maybe see what their background is on tic disorders. Our pediatrician referred us to a pediatric neurologist for the tics. So, maybe a second opinion wouldn’t hurt if you feel strongly about it.
Mostly, I’d just try to judge how much it really bothers your son. On the other hand, quite a few ADHD kids without tic disorders also take the same non-stims in the evening to help with sleep and melt downs from the stims wearing off.
We did see a neurologist who did a very basic physical test and told me my son was perfectly fine. He wanted to do an EKG because he wanted to rule out seizures. To be honest, I felt like the dr wasn’t listening anything I was saying and even cut me off at the end when I had a few questions. He simply told me you have a bright healthy son, let’s rule out seizures. I know I’m not a dr but I feel like my tics sons come from anxiety and stress. It’s what I’ve observed. Maybe I need to find a new one. We took him to a neuropsychologist and that’s where he got his diagnosis. From there we’ve seen a child pyschologist and two psychiatrist. Did you have to do an ekg with your son? My sons tics tend to change over time too. I’ve been giving him magnesium and omega 3s and it’s seems to have a helped a tiny bit. I definitely want to push for a non stim now.
We did not do an EKG, just interview / observation. My son was ticcing heavily, both vocal & motor, at the time, so I didn’t need to bring in a idea or anything - the neurologist could see it first hand. I had also been jotting notes of tic-like behavior I had seen transiently for the last two years. I also have a family history of TS. So with all that combined, we got a TS diagnosis much more quickly than I expected we would.
Does your son seem a little confused / spaces out during or right after a tic? If so, checking for seizures might be a good idea. But if you feel like the neurologist was being dismissive of your concerns, then I would seriously consider a second opinion. Our neurologist was very patient & helpful and definitely trusted my word and treated me like I knew what I was talking about.
I will add, transient tics are more common than people realize and they can come and go. But if you are seeing two motor & one vocal tic within a year, that’s the standard for a TS diagnosis.
We currently aren’t medicating, as most of my sons tics fly under he radar, and 1st graders don’t notice anyway. But we are aware that this may change, as tics can ramp up through the preteens, and oldies are more likely to take notice. So, we & teachers are just watching closely right now.
I have news that is not really good. My daughter is now 11 and she has a pretty severe case and has been medicated her the school for the past six years. This summer I put her in long-term treatment so they could take her off all of her medications because of her tics. She’s been off the meds now for about four months and wow her text did decrease she still has some of them pretty severely. I knew some of them possibly would not go away but now they want to medicate her again because she can’t be dealt with at school and I really don’t know what to do either. She can’t function without the medication but her tics got so bad that it was so scary. I hope everything works out for you.
I am so sorry to hear that. That honestly is my fear that it will get worse and they won’t go away. I think the part where the dr said to wait to see if he gets made fun of is what scares me. My son is sooooo sensitive and gets hurt very easily. Did your dr reassure you that it’s verh common and that they come and go? Mine keeps saying the same thing.
Hi. My son has ADHD and tics. He was diagnosed with ADHD when he was 5 and Tourette’s when he was 10 (but we noticed mild tics when he was younger). He is now almost 17 yrs old. I have found that it is very hard to find a dr that has experience in dosing meds in kids with adhd and co-morbid tics. I wish there was a resource to find docs with that experience. (If anyone knows please let me know). What I have noticed over ther years is that there seems to be a seasonality to his tic expression. I see an increase in the fall and the spring. I read some research that it could be an inflammatory response - I had my son tested and he had pretty high reaction to common fall and spring allergens. Long story short- put him on allergy meds and really didn’t see a difference. Tried the magnesium, omega, vit B, diet - and again not a major difference in tic expression.
His tics included eye blinking that made it almost impossible to read. Try continuously blinking and reading a sentence and on top of that comprehending what you read. So this made school quite impossible so we decided to treat the tics. He has been taking guanfacine 2 mg a day for the last six years. It worked nicely for him. We would notice tics sometimes at times of stress/excitement-but they are pretty mild and mostly gone. At the same time we were dealing with the focus/executive functioning issues. In my experience the stimulants work much better for focus than the non-stimulants, however whenever we upped the dose of the stimulant the tics would return. So again for years (after we went through all the trials to find something that worked w/o added adverse effects .... which is a horrible process. Tried both stimulants and non-stimulants ) we finally landed on a low dose of Focalin XR (first 10 mg and about a year ago went up to 15 mg). He is not having any tics, he is doing better in school -but if he could tolerate and increase in the Focalin XR I think it would make it easier for him with academics. I’m in the process of looking for a doc with experience in dosing adhd meds in kids that also have tics but not having much luck (my doc retired- New Jersey area if anyone know of someone pls let me know).
So- I do agree with your doc that if the tics are not causing any harm, distress, effect in self esteem then just let it be. But if you feel it could be effecting self esteem or lack of focus due to the tic, then treat. Guanfacine is usually a first choice for tics and helps somewhat with focus. There is a long acting formulation (Intuniv or Guanfacine ER) and immediate release (guanfacine). My sons neurologist preferred the immediate release given at bedtime. He was not a fan of the release delivery system used with Intuniv and felt there were better results with the immediate release.
Whether I can attribute the decrease in (or now non-existent) tics to the medication or maybe he “grew out of it” I don’t know. He does feel that if he forgets to take it, the next day he has slight tics- so maybe it’s doing something. So he will stick with the guanfacine.
Now to find more help with focus. We just hired an ADHD coach to help with executive functioning skills to get him ready for college. And once I find a doc we will see what we can do with a med change to help focus but not disturb tics. And the journey continues!!
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