So worried, daughter has tics

[madimi]

Its a 8 year old boy with a whole lot of energy but nowhere near problematic, he is doing well at school and his  teacher tells me he is very well behaved and so far she hasn't brought up tics. So no obbsesive behaviour yet. I have seen a child neurologist and she told me same as you, as long he is happy and tics arent bothering him too much and she didnt see any comorbid disorders, is a wait and see aproach. But then this little voice in my head telling me this is going on for 3 years now and according to the web, more than a year both motor/vocal tics are diagnosed as Tourette. On top of all the now 2 week coughing tic wich has me in panic mode and doing my best to avoid if but its there all the time, wherelse in the past his motor tics only occured little bit spread through out the day but could be gone for some hours of the day! so is his disorder progressing or is it just a stressful time now that were all home (my older son and husband had Covid) in quaratine and will this also pass eventually! its such a complex thing to me tics and put my whole world up side down and wish i an had a glass ball to predict me the future. If i may ask what kind of tics has your daughter exprienced over the years?

Here has  been the typical eye blinking, shoulder shrugging, moving (invisible) hair out the face and moving mouth. 

[mert]

The old information regarding tics, that they will pass in a year or so and if not it's serious is 'old'. Most new studies, I think I linked some of them, show that tics do not pass in a year. The professor who was running a long term clinical trial was kind enough to answer my question and he said that on average he is seeing improvement year on year but he only seen few of the subjects free of tics at the 3rd year. (His research should be coming to 4th year) 

And he also agreed with me that Tourette naming is pretty old and meaningless. 

Tic's are the movements that are completed to satisfy an urge. An urge is a very complex thing in it self. An urge say something/make noise might be evaluated as vocal tic but coughing is certainly not a vocal tic. An urge can also be related to a thought (which leads to OCD or similar disorders) 

Throughout the years we had probably 100 different tics. Too many to write them. almost anything you can imagine, from jaw opening to eye movement to small jumps when walking to more regular stuff like head noding , tapping etc... Some are a bit more persistent but almost everyone of them replaced with something else during the course. 

The study I mentioned, which should be linked on one of my recent posts, is the only glass ball we have. At some moment I should search if the newer version of the study is released. If you can find the newer version before me please drop a link. 

I used to track frequency/intensity of each tic on an excel and that really helped me understand the frequency and peaks etc... 

As I said, I focused all my efforts on making here more confident with here self physically and mentally without pushing here, with right amount of challenging. What I see is she is quite happy to be in top physical shape and be competitive on every sports (as a side effect) and when she is involved in these activities she would never present tics. 

[madimi]

Ok thank you so much i will have a look at the study.

I also been writing down his tics and frequency but i cannot find a pattern. Like when he watching tv he used to do a eye rolling thing but i NEVER seen it any other moment of the day. Wich i found very odd and makes me believe tv /tablet trigger something in the brain. Anyway the only thing we can do is try to stay calm and hope for the best.

Thank you very much for your helpful information and keep this thread alive.

 

Greetings

[mert]

Almost every child (with tics) I know of show same behavior when watching TV. We had the same, and we dropped the TV to 15 mins a day (most days never opened and only allowed content that would require some active listening/watching like documentaries, competition and she needed up being an F1 fan) and switched to board games, family games etc, for the first 1.5 year, then we slowly increased the amount of TV allowed, but because she had little TV around 5-6, she does not go for TV much to be honest even we would let her. 

[madimi]

To be honest im not dealing very well this time with the situation. its the first time his tic is constant every 30 sec.

I discussed with my husband to find help myself to deal with my own anxiety, the motor tics i could handle if i became overwhelmed i just looked away. with a cough its just impossible. did you also experienced times the tics wore constant?

is it possible he feels my pain and puts him under more pressure? is stress really a factor? what can i try to calm him down?

we are having storms the last days so going outside isnt a option at the moment.

i feel a little bit lost today.

 

[mert]

Get any help you can. I understand you fully and we've been in the exact situation multiple times. 

I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us.

I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. 

Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. 

Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) 

Back to my first sentence, get any help you can, if you are not well, you can not help. 

[Mommymom]

@madimi I have been reading your comments over the last couple of days and I can totally relate to your feelings. I am sharing my story and hoping it will give you some comfort. 

During 2020 pandemic, my daughter was around 8 years, she had a really tough teacher. She struggled a lot with online classes and having a strict teacher wasn't helping. One day my daughter had a bad day since her teacher confronted her in front of the entire class for not submitting homework. Few days later, I noticed that she started making a 'hhmm' noise every few seconds. I felt something was wrong and immediately emailed the pediatrician who said they are tics and will go away. I started the 'hhmmm' turned into new tics every few weeks, we saw hand pulling backwards, cough, throat  clearing, heavy breath out, leg lifting, waist stretch to the sides or back, eye blinking, head nodding, neck tightening, standing on toes, eyebrow frowning, shoulder shrugging, touch chin to neck, shifting upper body to one side etc. 

I took her to two different neurologists and both of them confirmed that they are tics and they will go away. Since she was having tough time with her teacher, her anxiety levels were really high and we went to pediatric psychologist to received progressive muscle relaxation techniques. With advise from @mert, I started tracking tics, frequency and intensity on a spreadsheet. It gave me a lot of relief as I saw a pattern, approximately every 6 weeks i saw tics going away replaced by new ones. The trend continued for almost a year. After almost 9 moths of tics, my daughter started getting CBIT therapy for tics. It helped her a lot to be able to suppress some problematic tics in social situations. December, 2021, by the time we reached one year mark, tics were almost gone, one or two remaining with very less frequency and intensity. I was so happy and started sleeping peacefully after many sleepless months. 

For 2022 new year celebrations, we decided that the whole family have been thru a lot and need a vacation. We went to Mexico for a 7 days trip and few days into the trip, I noticed that she started with some neck and mouth tics. I was heartbroken and was full of guilt for going on a trip. Currently, 3 moths after vacation she still have tics that started during vacation and are slowly lessening frequency. 

I am sharing my story to tell you that it is not easy and needs lots of patience. I struggled a lot and went into depression and lost interest in life. I realized that my daughter needed me the most and need to stay strong. ITs not easy, I used to pretend normal in front of her and used to cry my heart out at nights. Here is a list of things that helped me and my daughter: 

Things that helped Me: 

• Read studies on tics and believe that some of these children will outgrow them
• Take help, talk to your doctor and get therapy to manage your anxiety
• Keep life simple, don't overwork and burn out yourself. We ate PBJ sandwiches many times since I had no energy to make something good and its ok. 
• Take a nice walk in the sun, hike, bike etc whenever weather permits.
• I kept the social gatherings to as minimal as possible as meeting people worsened my anxiety as they gave my daughter looks. 
• Have someone who will listen to you, for me it was @mert . He listened to my concerns and patiently replied whenever i wrote to him. It helped me tremendously. 
• Think of your child, how hard it must be for them to deal with tics, try to make them feel as special as you can, hugs, kisses, play time with them, appreciation, new toys etc.  

Things that helped my daughter: 

• Limit screen time to as low as possible including laptop, TV, phone and tablet
• Make up silly games to play with them to deviate and take away stress, I used to play badminton with a balloon, skipping, charades etc.
• Lower gluten, sugar, processed and deep fried foods and artificial colors to as little as possible. It is believed that inflammation in the body and gut health is directly connected to brain functioning. 
• Started music classes to keep her occupied

  Hope my post was helpful. Trust me its not easy. No matter what, it is just a medical condition and there are many worse conditions that this, so we should be glad. Give your kid all the love and care you can, I am sure he will outgrow of the tics and this may not even be a problem few years from now. 

[madimi]

Hello, honestly this thread has been a light in my dark moments for sure so thank you.

I am Dutch but living on a small island In Greece, monday i will start to look if they offer CBIT therapy anywhere, i want to try everything that might help him. His motor tics didnt bother anyone but now im dreading him going to school on monday and having other pupils commenting on his cough! what did you do in these situations? i have not discussed this yet at school.

Did your daughters cough tic maybe also started after a cold, i have a feeling this was a trigger!

I think if im really being honest my biggest fear is that he wll one day start barking/swearing like you see on tv, im not proud and dont want to be offensive towards people with Tourette but its consuming me some days.

So i think sometimes i act out because of my fears. Like sometimes im like "stop it"try to cough softer' I feel quilty afterwards because i know he cannot help it.Thats when i realized i need to find help for myself first, just like Mert said otherwise i cannot help him. I need to get out of this circle. I mean this little boy means the world to me and we all just want to see our kids happy and relaxed.

Taking his screen time i find difficult, i dont want him to think he cannot play video games because he tics, and think he is getting punished  for it while having a older brother who can!

I cannot find a pattern to the tics, apart they werent constant wherelse the cough tic that is happing right now is. I think thats why i feel very negative this time around.

 

[madimi]

Once again thank you very much for all the helpful tips, and i wish you and your daughter all the best and hopefully better days with less worry will come for us all!

[Mommymom]

@madimi, glad you found my response useful. Regarding your question ' how to handle tics at school with other students', I recommend to be open with the teacher and educate her on what tics are and explain that your son is not doing them on purpose and they are uncontrollable. Honestly, kids are least bothered and I am sure your son's classmates will also not be pay much attention to the tics. You can request the teacher to give your son small breaks during class for him to either read a book or sip some water for dry throat caused by constant coughing. 

I felt like the cough/throat clearing was triggered by certain things. For example, my daughter used to do throat clearing more frequently while eating. Throat clearing tic was present longer than other tics and stayed for almost 3 months. CBIT is recommended kids who are of atleast 8 years or older as practicing CBIT techniques require a lot of patience and commitment which younger kids may not be able to do. But I recommend CBIT highly since they don't teach kids to suppress their tics but instead train them to do an alternate/competing action instead. For example, my daughter had a tic where she would lift her chin to the ceiling. During CBIT the therapist asked her to pull chin down whenever she had the urge and after practicing if for few days, the tic itself was gone. 

Regarding Screen time, it was definitely hard but the best thing we ever did. Because of my daughter we took away screen time from my elder son too. We had to educate him that we are doing this to support his sister and we gradually lowered his screen time. We instead did lot of family hikes, board games and just talk to each other, tell jokes etc. which made kids wanting less and less of video games. Lessening screen time along with healthy eating and exercise is what helped the most. 

[silver77]

Hi @madimi I’ve read through your posts and as others have said, you aren’t alone.  My 8 year old daughter has had tics since June 2020.  We’ve went through many different types.  In fact, re-reading my posts on these forums actually reminded me of some of them that I had forgotten about as they haven’t been around for a while now.  Her tics I would say now are on the mild end, she does the occasional left eye wink, and some nose scrunching.  The one that I notice she does a lot is scratching – she just scratches everywhere.  Now I’m not sure how much of a tic it is vs her dry skin as we live in Canada, and she has a history of eczema.  Her vocal tics, I haven’t really noticed for quite some time now.  And this is how it all started for us – sniffing that went on for 5 months non-stop – like every 5 seconds.  It was crazy and sent me into a spiral.  

Last summer was the worst for me as that was when we hit the 1 year mark of tics and I knew that meant the tourettes diagnosis.  I had to seek counselling for myself, which really helped.  I found someone who actually does CBIT and works with children with tics, so knew she would understand me and what I was going through.  I also joined many Tourette themed facebook sites, which frankly did not help and sent me into a deeper spiral.  I’ve learned that the people who are having milder symptoms and just getting on with life are not the ones posting on those websites.  I’ve learned no two people with Tourette’s are the same, so where this is going to go for my daughter I can’t predict, and I am one of those people who try to forecast the future and think the worst, so through therapy I’ve stopped doing that. 

I have to say that not once has any of my daughter’s tics bothered her, not once has she said anything to me about them, and not once has anyone at school said anything to her about them.  I continue to hope that they stay mild and unnoticeable except to me who is still always on the look out for any changes!  We tried gluten free for a few months and I saw no difference and she was miserable doing it, so I stopped, I reduce gluten but haven’t eliminated it anymore.  I give her magnesium and B vitamins.  To be honest I’m not sure if it helps.   

Through this, I identified that my older daughter age 12 has had tics since she was about 7.  Now that I know more about it, I think back through her childhood and the early days I remember she had a cough that lasted months after a bout with a cold.  We took her to a pediatrician and they didn’t find anything wrong and said it would go away – which it did after about 7 months.  I also remember for about 2 years she was always humming probably from age 8-10.  It bothered her classmates, her teacher talked to me about it, they would tell her to stop and she wouldn’t.  I remember having discussion after discussion with her that she needs to stop and when I realized it was a tic after the fact I felt horrible about it.  She still continues to have vocal tics – mainly throat clearing.  And in January I noticed her first ever vocal tic – eye rolling.  It only lasted 2 weeks and hasn’t reappeared.  

So, my advice to you:

·       Stay off facebook sites – stick to medical papers

·       Ignore the tics and don’t call them out for your child

·       Seek counselling for yourself – this was hard for me to recognize that I needed it, but I’m so glad I did it

·       There was one podcast I started listening too – Tic Talk – two guys from Ottawa talk about their Tourette’s experience and have guests.  They haven’t had a new podcast in a couple of months.  But what I liked about it was that they both had different journeys – one wasn’t diagnosed until age 19; the other was diagnosed maybe around 10 and from what he tells, had it pretty severely.  While both still have symptoms of it today, they are doing great, don’t let it rule their lives, have relationships and one has kids.  I was so appreciative to hear their stories. 

·       While it’s great to hear what others have done and the outcome for them, know yours could be completely different – better or worse, you just can’t predict what will happen

Take care!

[madimi]

Hi Silver, Thank you for your story. I think the fact you cannot predict this complex phenomenom as tics is what makes it hard to deal with, knowing any moment a new tic can come up or the not knowing what lies in the future. As a person who tends to think the worst.... is where my biggest problem is and where i plan to work on with a therapist.

Im glad to hear your daughters tics are mild and i hope they stay that way. As you my son doesnt seem bothered by the tics and is always a happy face in our home. I'm considering CBIT therapy cause doing nothing isn't in my nature although my neurologist thinks as of now he doesnt need it.

I forgot to mention i have a vivid memory out of my own childhood that my primary school teacher asked me why i kept rolling my eyes, as young as i was i remember it made me feel very bad about myself. Besides that i dont remember having any problems. That makes me wonder if there is in fact a TS gene or if i should take it as a possitive that it can be something that passes since i was a teeneager and now adult with no tics.

I do believe putting attention or even talking about tics can be dangerous or tricking the brain. At the start of all this when there was tension in our house because we didnt understand yet what was going on, my older son started wiggling his nose. He told me  jokely,  "you been talking about my brother tics and know i want to do them too" (it did not last). 

Its a journey for sure and im learning every day.

 

 

 

 

[Chemar]

Hi @madimi

Yes it's very possible that you had childhood transient tics with the eye rolling. I think it's hard with the TS label as yes, it can run in families, but TS symptoms also might not have clear genetic links in some, and as we know, sometimes even transient tics or tics caused by other things (eg PANS/PANDAS infections, allergies, environmental triggers, food intolerance etc etc)

We found keeping that "tic trigger" journal so beneficial -  and trying not to obsess over tics, but just letting my son be the one to mention them if he chose to. We discovered the hard way that the more attention you draw to the tics - the harder for the person and the more they tic!

Anyway, I do hope you are taking care of yourself, and (hard as I know it can be) not worrying but rather just learn what makes the tics worse by keeping that journal - it really helps all round as eliminating potential tic triggers where possible makes things so much improved!

[madimi]

Hi Chemar,

How is your son? How long have you been dealing with tics. I havent been able to find out what really triggers the tics besides screen time and stress. We are on a mediterranean diet with a lot of foods fresh from the island so i think we eat quite healthy.

Regarding Pandas my son did go through many throat infections and was treated with antibiotics every time.

 

[Chemar]

@Madimi   my son is in his 30s now and started eye rolling tics at 4yo with full blown TS by 10yo. There is a family history of tics & TS .

I have a looooong thread that I started in 2004 about our journey with TS. I linked it for you

Keeping that "tic journal" really helps to spot tic triggers you may not have realized!

Many throat infections would make me consult a PANDAS specialist and have those blood titres done as that really is the only way to know if there is a possible PANDAS component to the tics. There is a lot more info here on our PANS/PANDAS forum. Your son may not have a Pandas link - but always worth checking in case when there is a possible infection connection.

Here is the link to my old thread which may be helpful