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Concerned about my son and his tics

I am a concerned mother for my 5 1/2-year-old son, Ethan. He has blinking tics since probably a half-year ago, on and off. And since last week, I have noticed that he also turns his head and neck repetitively left and right, along with some shoulder shrugging. Last week, as we were on the road, he did eat more sugar and no homemade food.

There have been a few times during the past 2 years that he has burped for 10-15 seconds before he falls asleep. This usually happens when he has a cold, and he also passes gas a lot at the same time. I think my son was burly when he was a baby, and I am not sure if it is vocal tics.

At birth, he had silent acid reflux, but with a bit medicine, he grew out of it. He is otherwise a happy boy and pays good attention to building his Legos every day! I spoke to the PED today, and she thinks Ethan has tics. She referred me to a pediatric neurologist, but at this point, I want to try the natural path first before going to the neurologist.

Please kindly give me any advice you might have. I am very scared at this point.

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  1. A year ago, I felt like my entire world was turned upside down when my son was diagnosed with TS. He was only 4 years old. My son was have vocal tics (clearing his throat) and some eye blinking for some time (usually when he was stressed). There were so many other things though that I did not know was actually attributed to his TS. Things such as his “out of no where” emotional outburst, his anxiety when in new settings, his endless questions, his tunnel vision, among others. I didn’t realize that I finally had some answers to so many of my questions yet all I could focus on was on all of the questions that I could not find answers to. I remember wondering “how bad will this get?” “What does this mean for his future?” “Will he out grow this?” So many questions yet there were no certain answers to them. What a year it has been! I have tried to “discover” what are the triggers that aggravate his TS. I have searched “diets” that parents believe have helped their own child with TS. I have left no stone unturned. Yet I have not had my questions answered. I have realized that my son is fortunate and unfortunate all rolled in one little body! He is incredibly bright, inquisitive, driven, motivated, loving, compassionate, and energetic. People who know that he has been diagnosed with TS often come up to me and whisper things such as,”I just don’t see his tourettes. I guess he is doing so much better.” I often say, “yes he is doing great.” But, getting him here is NOT easy! Just because his tics are not noticeable to those around him, he is not TS free. His brain continues to struggle with information that it receives. It struggles with processing this information and making sense of it. I know this because I listen to his endless questions. His brain seems to NEVER stop! I know his tics don’t either. I know he has tics that most people would not notice. Like the constant movement of his toes. I guess what I am trying to say is the tics are just tics. Some are noticeable and some are not. But, its not just the tics. Even if the tics are not bothersome, some of the other issues associated with TS cannot be ignored. I have learned that my son needs me to advocate for him because most people just don’t understand his personal struggles. Just because he looks just like every other boy his age, his personal struggle is real. He needs me to help him through his journey and help others understand that he has his own special way of viewing the world.

  2. Thank you, Laura,Anon and Denise for your feedback. Your tips and advice are encouraging to me. I begged my PED to screen for vitamin deficiency and Ethan just did the blood work today with calmness (thanks to my husband’s help and the Lord). And since his tics are not affecting him doing his daily things and he is still happy every day, we are going to travel to Hong Kong for a month and I am interested to see how he reacts to the new but loving environment (surrounded by families). I start for 1 week and will continue to do these since they are harmless to him and he doesn’t mind with the changes: 1) cut all candy and chocolate and deep-fried junk food 2) cut diary by 90% (since he has history of not tolerating cow milk) 3) give him a lot of love and care, always soft-spoken and encouraging to him. When we come back, we will bring him to see GI, investigate if he still has reflux or gastro issue, stool test to see if he has yeast etc. Also see a allergist to rule out sensitivities and intolerance to certain food and dust and mold etc.
    Thanks for your advice. Yes, he needs our love to accept the way he is. I actually start to accept the way of his movements. I am just thanking the Lord that his tics are not hurting him at this point. Yes, relaxation, like exercises, swimming, biking and classical music and instruments are great idea. I actually can see him almost not ticing when biking or swimming in the water swimming. I will be hopeful and doing whatever I can to help and love my son. My older daughter gives my son lots of love and care too.

  3. Hi, as Laura stated, don’t be scared. (And if you are, don’t let Ethan see it. 😉 )

    My son David, who is now 13, is diagnosed as having TS, OCD, Akathesia (restless leg syndrome of the whole body) and severe food allergies. In addition to the physical diagnosis, he also has a high IQ which can be misinterpreted as ADD. The doctor said that all of these tend to go hand in hand.

    He first showed signs of TS when he was about 3 when he would roll his eyes. By 6 we had to start trying to find a neurologist. It took a couple of tries until we finally we found one who “got” David and separated all of the symptoms and treated each condition separately. Do not get discouraged if you are not satisfied with the first doctor. You know your son and if it doesn’t feel like a good fit for him, don’t be afraid to move on.

    Anyway, Dr. Cargan, our current magician in residence, spent a lot of time with us at the first visit. He explained that in order to be diagnosed as TS you need to have a combination of vocal and motor tics for at least a year. Which David had been doing for over 3. When discussing it, he said that he didn’t want to medicate him at this point but that we might have to revisit it when David was around 8 and chances are, symptoms might increase. Wow, a doctor who didn’t want to shove drugs down my son’s throat. They are out there. Sure enough though, we were in his office shortly after David’s 8th birthday.

    Since then, as tics have come and gone, usually to return, we have adjusted his medication to get the most results with the least amount of drugs.

    In addition to the medication, David likes to do meditation, yoga, or just listening to music. What ever will relax him. The doctor also recommended that he learn an instrument, take up a martial art and swimming. All are muscle awareness/control/useage activities. Believe it or not, they have been amazingly helpful. Not just for his muscles but for his self esteem. David is now a 3rd degree brown belt in Tae Kwon Do.

    From one Mom to another, try to relax. When David was first diagnosed, I thought that my world fell apart. I was so sad for myself and mostly for him as I thought about the road ahead of him. It wasn’t until my husband told me that having a diagnosis doesn’t make things worse. It empowers us to take control.

    It’s going to sound strange but we have a motto around our house. “Stuff happens. You deal with it, get on with your day and laugh about it when you can.” We try to deal with it with a sense of humor and because of that, David does too. He has nicknames for some of his tics or he’ll come home from school and say he was ticked off today. You should see us when it comes time for a hair cut as touching his neck is a trigger! 😉 sometimes it’s hard to finish because we’re laughing so much. I’m not saying it’s always easy to laugh, sometimes I cry when I’m alone, but it’s better than the alternative.

    I hope some of this helped and please let me know if you want to talk privately. One thing I’ve learned is that it really helps talking to people who have dealt with the same issues.

  4. My most important bit of advice is to try not to be scared. My son had tics at around age 7, but I didn’t know humming was a vocal tic (he was constantly humming), and when I was asked if he had vocal tics, I responded no, and we went on from there, assuming they were just “nervous twitches”. Ultimately, his diagnosis was late, not until age 13, as he had figured out how to mask so much of what was going on. I can’t go back in time, but boy do I wish I had been sure of what was going on with him for those missing years. The school system would have looked at him so differently, and he would not have been quietly wondering what the heck was wrong with himself. I guess what I am trying to say is, knowledge is power. If your son has TS, and you don’t know for sure that he does, it’s better to know it sooner than later. Also, I am sure all Dr’s are different, but my son’s neurologist didn’t push medication on him at all. All cases are a bit different. And at the end of the day, you are his mother, and it is up to you to decide how you want to handle the treatment of your son. My advice is to see the neurologist. Chances are they won’t diagnose him quite yet, as there is criteria that needs to be met, some of which includes symptoms occurring for a certain period of time. But they can start the process, and rule out that other things are not going on. I know for us, getting the diagnosis was upsetting of course, but it answered so many questions, and we were finally able to understand what was happening. We also were able to spend our energy on the right things – and we found a great amount of support and resources from the NJCTS. Good luck to you and your son.

    • I agree with Laura. See a neurologist.
      Your son is being as natural as he can be, and having tics may be part of his natural brain. No doctor, chiropractor, diet, supplement of what ever can change the NATURAL state of his brain.
      We saw one of the top Tourette’s neurologists in the country, and medication was not even mentioned. The best thing that you can do for your son is to become educated about tics. And I am sorry, but a naturopath, chiropractor, etc. will not be able to help you. I know a family where the son clearly has Tourette’s. They have decided to “treat” it naturally through diet. The child is so stressed because of the diet, and his tics have gotten increasingly worse.
      There is no treatment. Our neurologist taught us so much and warned us that our child needs compassion and understanding. He also taught us how to advocate for our child.
      Please don’t assume that the neurologist is going to push meds. It is not always the case. Yes, it happens. If so, go see another. But in order to truly learn what is going on, I suggest you see a neurologist.

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