Today, I’m taking a break from my usual DIY posts to open up to get a little personal. It’s not something I plan to do often, but I want to bring awareness to something that is very near to my heart. Today I want to talk to you about Tourette Syndrome. It is hard to know where to start with all of this. There is so much I could share with you about Tourette’s, and I will try to not bore you with too many details and facts. What I want to do is inform you of a condition that many know very little about.
Tourette Syndrome is one of those diseases that has been the butt of many jokes. It is not the swearing disease as so many think it is. In fact, uttering of socially unacceptable words or phrases (coprolalia) occurs in less than 15% of people. Movies like Deuce Bigalow, What About Bob?, as well as many comedians have made Tourette’s seem funny and have made many people (including myself) laugh. Tourette’s; however, is nothing to laugh at. Here are some quick facts about this disease:
Tourette Syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. It is estimated that approximately 200,000 adults in America are diagnosed with TS; however, those numbers could be much more as there are many who are not diagnosed. Tourette’s is an inheritable condition that emerges in early childhood. It is more common in males than females and affects approximately 3 in 1,000 children. The symptoms of Tourette’s can me mild, or very severe. To be diagnosed, one must have at least one verbal tic as well as involuntary motor tics. Verbal tics can be anything from grunting, snorting, gasping, barking, etc. Motor tics can be anything from slight jerks to more prominent muscle movements.
Why am I telling you all of this? Because my son has Tourette Syndrome.
This cute little cowboy is our oldest son, Tyler. He will be 8 years old in less than two weeks and is finishing up second grade. He is the sweetest, most thoughtful kid I’ve ever met. He’s incredibly smart, almost too smart for his own good. He loves sports, riding his quad and dirtbike, hiking, and being with his family. All in all, he has always been a perfectly normal kid. As if any boy could actually be normal;)
A little over two years ago, we started to notice some odd things happening with him. It began with him rolling his eyes a lot while watching TV or playing video games. He has seasonal allergies, so my husband and I assumed that his eyes must feel itchy or watery. He would always say no when we asked if his eyes were bothering him though. Fast forward two or three months and he started making snorting sounds constantly. Once again, given that Arizona is now a terrible place for people with seasonal allergies, we figured he just had a lot of sinus drainage. The problem was that he did it constantly. We took him to the doctor who recommended allergy medication. It didn’t change anything.
Thankfully, after a few months, the snorting noises stopped. Then he started making other noises and facial movements. Last spring, my dad was over one night and Tyler was going to bed so my dad went to say goodnight. He came out and said “he’s got Tourette’s.” Me being the mature adult who has realized my parents aren’t as dumb as I thought they were when I was a teenager said “no he doesn’t! You don’t know what you’re talking about. He has allergies.” My dad shook his head and said “Katie, I work with a guy who does those exact same things and he has Tourette’s.” Once again (mature adult here) said “You’re wrong. It’s just allergies, dad.”
As the months passed, his facial movements and noises evolved and he began to have more exaggerated movements. He would make fists and bang his thighs or kick his legs. We kept asking him why he was doing those things and he could never give us a reason why other than he “just needed to.” It was that summer when I began to realize that maybe my dad was right and that Tyler did have Tourette Syndrome. My husband still wasn’t ready to believe that was the case, so I never really pushed the idea too often. After all, his tics weren’t really that bad and weren’t a problem at school or socially.
Fast forward once again to early this year. His tics began to get worse. We could always count on him to drop one tic before picking up a new one, but now they were compounding. He still usually just had one or two verbal tics (at this point loud, screeching gasping noise sometimes followed by squeaking or clicking), but now he also had two or three motor tics. I called my father-in-law (a psychologist in Houston) and asked him what his thoughts were. He agreed that it could possibly be Tourette’s and we should have him checked out. By this point, my husband had also accepted what was going on. It was (and still is) a hard time for us because we were both doing what we could to be strong for the other one when all we really want to do is cry our eyes out.
Tyler’s verbal tics were becoming more noticeable at school, so it was finally time to call a neurologist. That was a hard phone call to make. Listening to the automated recording saying “you’ve reached the Barrow Neurological Institute at Phoenix Children’s Hospital” caused me to hang up the phone sobbing. I didn’t want to make that phone call to make an appointment to see a doctor and have them tell me there was something wrong with my kid. What parent does? I broke down again when I finally had the courage to speak to the receptionist. I’m pretty sure she’s used to moms crying over the phone, and she was very kind and patient.
We had to wait a long, agonizing month to see the neurologist. In which time, Tyler’s verbal tics were getting to be so noticeable that people kept asking if he had asthma. Even Tyler was asking what was wrong with him. We didn’t want to tell him too much yet without a diagnosis, so we would just say that we didn’t know yet and we would find out when we saw the doctor. When we did finally see the neurologist, he was ticking away as if on cue. After a lot of talking and us answering her questions, she gave him the official diagnosis of Tourette Syndrome. As much as I was prepared to hear that diagnosis, I still cried right there in the office.
The good news was that we finally were able to explain to Tyler why he made his noises and banged his elbows or kicked his feet, etc. He said he felt better knowing that there was a name for it. It doesn’t make it any easier though. A little boy in his class had started teasing him about his noises. I was furious when Tyler told me about it (as any parent would be), but kept my cool in front of him. He said he wanted to talk to his teacher about it and when he did, she made sure that all teasing stopped right then and there. I can’t say enough how her support (as well as others at his school) has helped him and us during such a difficult and emotional time.
He still has fears that kids will laugh at him because of his noises though. There is nothing worse than your child coming to you crying asking “why can’t I just be normal?” I thank God I had the strength that morning to keep it together and comfort him. Right now, we can’t answer all of his questions. He wants to know when his tics will stop, or if he will grow out of them. He wants to know if they will get worse or stay the same. Unfortunately we just don’t know. It does get worse during puberty when hormones are going crazy. That is about all we know and there’s no way to predict just how it will affect him. All we can do is pray that he will grow out of it. If for some reason God has a different plan for him, then we will continue to pray for his strength and perseverance.
Later this month, we’ll begin seeing a psychologist that specializes in Tourette Syndrome and tic disorders. I don’t know what we will get out of these visits, but if there are ways to help Tyler’s anxieties about his tics or help him realize that he’s not alone, then I will do whatever it takes. We’ll also be seeking out support groups for kids with Tourette’s. We think that having Tyler meet and hang out with other kids who also share his condition will help him to feel less self conscious. We’re not at all interested in medicating him at this point. His tics are not severe enough to risk the side effects of the medications. Even his neurologist said that she wouldn’t recommend it until it does start to affect him a great deal.
If you have every wanted to learn more about TS, one of the best resources I found was this book.
It is a true story about two completely different men with Tourette Syndrome. Their paths crossed by chance and they became lifelong friends. One of them had tics so severe that he was virtually bedridden (as much as one could be in his condition) and had, what was at that point in time, an experimental brain surgery called Deep Brain Stimulation. It translates to him having a pacemaker of sorts put into his brain to deliver shocks to relieve his tics. I don’t want to give away the whole book, because it really is a great read. Even if you don’t know anyone with Tourette’s, I encourage you to read it.
I also purchased this book, written by a 9 year old boy with Tourette’s. When I read it with the boys, I think Tyler felt some comfort knowing he wasn’t the only kid out there with Tourette’s. Garrett, our 6 year old, could care less at this point. His brother’s vocal tics get on his nerves sometimes, but he knows that Tyler can’t help it and loves him regardless. He says he will always stick up for his brother and will never let kids make fun of his tics. I couldn’t be prouder of him for that.
Tomorrow marks the start of Tourette Syndrome Awareness month. It is from May 15th to June 15th. I am trying to bring awareness to this condition, not to make you feel bad for my son, but to help people better understand what Tourette’s really is. It’s not a bunch of people running around shouting profanities. It’s real people who would give anything for a moment of stillness. It’s people who suffer daily with pain and fatigue. It’s kids who wish they could just be normal. I would give anything to help Tyler feel “normal.” For now, all I can do is try to help others better understand what he and many others go through and to help him realize that it’s okay to be different and unique.
Here are two videos that are very helpful in understanding what Tourette’s is and what it looks like. Like a snowflake, no two people are the same. Some have very severe tics, while others have milder ones. As guilty as I feel for thinking it, I am so thankful that Tyler’s are not severe. Socially and academically he is doing very well. There are many others who are not as lucky. The second video features children with the most severe forms. It is emotional and not easy to watch, but it definitely gave me perspective.
I Have Tourette’s, But Tourette’s Doesn’t Have Me
The Darker Side of Tourette’s: A Documentary
Thank you for bearing with me throughout this lengthy post. Like I said, I don’t plan to post like this often. My goal with this is to educate others and bring awareness to this often misunderstood condition. It’s not a joke. It’s not something that people can really control. But like we tell Tyler, it’s okay. God makes everyone unique in their own way.
Katie
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I love this post! My 17-year-old son was diagnosed with TS in third grade so I can relate. You are right – it’s a very misunderstood condition and we Moms need to make people aware of it. My son has had his struggles and triumphs over the years. Thanks for the heartfelt post.
Thank you for stopping by to read it. I’m hoping to reach as many people as I can with this post. You are right, as a mother (or father) it is our job to raise awareness so that our kids don’t feel like they are alone and that nobody understands them. It is a tough battle, but we continue to pray for strength!
Oh my goodness. I am so proud of you for being so brave and sharing this intimate story about your beloved son. He looks like a wonderful boy and I hope you can find some answers. I have a friend with Tourette’s and he is finishing up his Doctorate degree in Architecture. He has dealt with tics his whole life, but didn’t let it stand in his way of his dream.
Good luck to you and your family and thanks for sharing.
Erin Kennedy
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Thank you Erin. It is encouraging to hear of others who have TS and have persevered. When we first started to realize he may have TS, I had the constant worry of what his life would be like as he grew older. At that point, I still knew very little about TS and I was so afraid that he would not be able to achieve his dreams and goals. Now that I know more, I know that with support around him and personal strength, he can achieve those things. Thank you for sharing that about your friend.
I am crying as I write this comment. From Mom to Mom, I feel your pain and worry. Your post is beautifully written and has forever changed what I thought I new about Tourette’s. I love you and you Dave and the boys are in our thoughts. Lauri
Thank you Lauri. Now, you’ve made me cry:) Thank you for your love and support.
I am writing this through tears as well. Your son’s story sounds so similar to ours. Ben is a 15 year old honor student. He was diagnosed with TS at the age of ten although we started seeing tics at age 8. He is so much more than a person with TS. His strengths far outweigh his challenges! My mother’s heart breaks when I see how hard it can be sometimes but I know that he is on a journey that makes him strong, compassionate and caring! Thanks for sharing your son’s story and spreading TS awareness. God bless!
Thank you for stopping by to read Tyler’s story. I hope that we can all raise awareness. I pray for your sons’s continued strength as well as your own!
Thank you Katie for writing this very personal blog and also sharing your thoughts about my husband’s (Jeff Matovic) and our co-author (Jim Fussell) book, “Ticked: A Medical Miracle, A Friendship, and the Weird World of Tourette Syndrome”. I have posted your thoughts on the TICKED page on FB and just wanted to say thank you for spreading the awareness and education of Tourette Syndrome and supporting the book!
Here is a link to the page. Please feel free to contact us on FB if you want!
https://www.facebook.com/TickedTouretteSyndrome?fref=nf
Thank you, Debra, for sharing it. I can’t even begin to tell you how much Jeff and Jim’s book helped me to better understand TS and how inspiring their stories are. It’s one thing to read medical research, but to read about someone’s real-life story is truly the way to better understand what TS is. Your strength is also my inspiration and I truly look up to you for what you did to help Jeff. Thank you for sharing your stories with the world.
Your family sounds amazing and your son sounds extremely mature and sweet. I don’t have any experience with TS, but I do also have an older son with his own set of health issues. It is really painful to feel so helpless when your child is hurting and there is little you can do to change things. The best advice I have been given is to just “be there and love them”. I believe that sometimes these challenges make us all more compassionate, and there is no doubt that they make us stronger!! Thank you for writing this post and for being so brave and honest.
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Thank you Julie. It is has been hard, but he is such a strong boy and I know that he will do amazing things. Thank you for taking the time to read his story.
Thank you for sharing. My daughter Isabel is 8 years old and has TS. Our journey has been very similar to yours. Is does help to know you are not alone.
This is wonderful Katie. You, nor your son, have anything to feel ashamed of about this diagnosis. To be judged by people for something out of your own control is so painful and I know your post will undoubtedly help others. This part of God’s plan is not at all an accident, because we know the Almighty doesn’t make mistakes. 🙂 Stay strong and continue encouraging others to do the same.
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Thank you Amanda. It is journey that is unknown, but I know that we will do everything in our power to help Tyler down this path. I am so grateful for the support that we have and I know that God wouldn’t give Tyler anything that he couldn’t handle.
Im so proud of you, Katie. You are such an amazing inspiration and example. Tyler is going to do so well because he has you and Dave to support him. Thank you for educating me about a topic I knew nothing about. I will spread the word.
Thank you Breese! And thank you for spreading the word!
You guys have raised a wonderful son – Tyler is such a sweet and kind little boy! A.J. and I read this together. He said that he will never let anyone tease Tyler if he’s around – and he means it! I hope they remain in the same class as they grow and learn.
Thank you for your kind words Teresa. A.J. is so sweet and I know that he means what he says. I’m so glad that Tyler has a friend like him who sees past his tics.
Here in the UK there has been a lot of awareness about the condition. I am not a mum and I can only imagine the bag of emotions you must feel right now. But what he needs most of all is lots of love. As he grows up he will understand this condition better and learn techniques to cope. They say minimising stress really helps with the symptoms.
I hope you get lots of support and try and educate as many people as you can about it. Then they will see past these little niggles and recognise him for the wonderful person that he is.
Thank you Eva. It is definitely emotional, but we do our best to stay strong in front of him. Sometimes my husband or myself has to walk away to gather our emotions, but we seem to be doing well with one of us at least being strong at any given moment. We are doing our best to help him see this not as a negative, but as something that makes him unique and special. We are doing the best we can to keep everything at home as normal as we can and help him to not feel self conscious about it. I’m so glad to hear that there is a lot of awareness in the UK. I hope that the US follows suit with that.
Katie,
What a beautifully written, informative post. Thank you so much for sharing your story. It just goes to show you never really know what’s going on in anyone’s life, and certainly never to judge. Sending prayers your way… Peace for Momma, strength for Tyler and understanding for us all.
Thank you Cresta. It is a hard thing to discuss, because so many truly don’t know what Tourette’s really is. I didn’t even know much about it up until we suspected Tyler had it. It’s not something that just goes away. No special diet or therapy will cure it. I am thankful for the ability to share his story. I asked his permission before I did so, and he’s perfectly fine with it. We want to help him embrace it rather than think it is something to hide or feel bad about.
Hi Katie, I have never heard of this disease before. Thanks so much for sharing this…Our boy is 8 years old too! I can tell you are a wonderful Mommy. Your story was beautifully written and I feel for you from one Mom to another! HUGSSSSS to you and will say a special prayer for Tyler!!! Christine from Little Brags
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Thank you for taking the time to read it Christine. It truly means the world to me when people take the time to just learn a little bit about it. I’m not expecting anyone to become an expert, but I think even just a little bit of knowledge can go a long way in helping people to understand. Raising kids is such a tough job, but I certainly am glad that I have been given the opportunity:)
Thank you SO much for sharing this! I can’t imagine going through all of this as a mother! You are amazingly strong! I will be praying for you, your husband, & your sweet boy, Tyler.
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Thank you, Shelly. It’s definitely one of those things that no parent ever thinks they will have to go through, but I know that we will do all that we can to help Tyler on this unexpected journey.
Thank you so very much for sharing this. I found it very interesting as well as enlightening. I’m not sure that I know anyone with TS but if I happen to be out and hear things that don’t sound “normal” now I will be more informed. Thank you again for sharing your story.
HUGS ~ LOVE ~ PRAYERS
Thank you, Diane. My goal is just to help people to better understand what TS truly is and how it affects those who have it.
Loved reading yours and your sons story. Has Tyler heard of Jeremy “Twitch” Stenberg? He is a professional freestyle motocross rider who was diagnosed with Tourette’s at age 8 (I read that Tyler rides dirt bikes). I watched a show with him and two others with different severity’s of TS. Very eye opening and informative and inspirational!
Great blog!
You have a beautiful family.
I don’t think I have, but I will definitely look him up! I always love to show Tyler that there are others out there with Tourette’s and I’m sure a professional motor cross rider with TS will be really cool to him. Thank you:)
Was wondering if you have ever tried Essential Oils. I’ve just started using them to help me sleep and also for anxiety. I was a skeptic before but they have really helped.
I asked my “oil” lady what she would recommend for Tourette’s and she suggested these sites:
http://www.everythingessential.me/HealthConcerns/TourettesSyndrome.html#page=page-2
http://www.miracleoils.ca/2013/10/tourettes-syndrome-and-essential-oils.html?m=1
Blessings, Diane
I’ve read a few things about them. There is still more that I plan to research about them.
Hello Katie,
I have actually seen your son before and didn’t realize his tics were from TS. I was picking up my daughter from school and he was in the nurse’s office going through a tic spell. I thought he was having an allergic reaction, but once my daughter(Scarlet) came home last night and told us about your visit I knew exactly what I had witnessed. I wanted to respond to see if you have ever thought about trying medical Cannabis? Here is a study that was performed on people with TS and they found that the tics dropped drastically. (http://norml.org/pdf_files/NORML_Clinical_Applications_Tourettes_Syndrome.pdf) Now this is not the stuff we think about that gets you high, it is usually a concentrated amount of cannabinoids which does not have the “High” characteristics. It is essentially the same as the “Charlottes Web” strain that has helped hundreds of kids with seizures. If your curious about the charlottes web strain, CNN did a documentary on it and I think you will find it very interesting if you haven’t already seen it. (http://www.youtube.com/watch?v=vyf-ffoatHg). Hopefully Tyler gets better sooner than later. Just thought I would suggest this since I know I would do anything to make sure my girls are healthy. Good luck.
Thanks Scott for reading. Yes, we’ve talked about that. We are looking into it as well as several other options that have shown marked improvement in tics. Hopefully we can find something soon.
Thank you so much for sharing! Both of my sons, 13 and 8, have TS. We have been diagnosed for about 2-1/2 years with both of them. They both have different tics with different consistencies. I have seen first hand just how frustrating this disorder can be because no case is exactly the same. Never stop researching and advocating for your son. We have tried everything -essential oils, meds, even Botox injections. I have tried everything in the Natural Treatments big green book you have probably seen on Pinterest. Nothing seems to work. We just keep trying everything we can and keeping a positive attitude about it. Don’t let anyone tell you there is a “miracle cure” because there isn’t. Don’t blindly follow the advice of doctors but don’t be afraid to try some things. I hope there is something out there that works for your son. Prayers!
Thank you Ann. I know you know the difficult road we are traveling. His tics fluctuate so much that when we think it’s time to try some sort of treatment, his tics will stop for a few months. So any treatment (essential oils, etc.) would never show whether they improved because they stop so suddenly. He will go months will terrible tics and then they stop almost as quickly as they started. Right now is a pretty rough time with his vocal tics. His throat hurts from them and his chest hurts from coughing so hard. We’re going to look into hypnotherapy for him. My father-in-law is a psychologist who does this and he recommended some local doctors for us to contact. We don’t know if it will work, but we just aren’t ready to try medications. We’ve also now got him in guitar lessons in hopes that it will be a great therapy for him and we’re planning to up his psychologist appointments from monthly to twice a month. It’s amazing how brave and strong a child can be when it’s their only choice. I’m sure you’ve witnessed that with your own sons. Tyler now, without missing a beat, will explain to kids that ask him why he makes noises that he has TS and what happens to him when his tics are acting up. But he still has so many anxieties about it. He is always worried he’ll disrupt his class, but his teacher does everything in her power to make him feel comfortable and accepted. I pray you will find some sort of treatment that will work for your sons and that they are part of the lucky percentage that seem to grow out of it.
This is a beautiful story, and one that definitely needs to be told! Your son is so handsome and will turn into a better, stronger person because of Tourette Syndrome. I’m 26, and I was diagnosed with TS when I was 7 years old. I found that the best way to deal with possible stares, and kids, as well as adults that don’t understand is to be as open as possible. I’ve always shared my story and my insights with many people and have a blog about TS as well. IT’s so important that more of these stories are told, so that children like your son, and parents of children with TS know that they are not alone. Even though Tourettes makes life very difficult sometimes, I think it has made me a better person. Good luck with your journey with your son, and if you have any questions about it or how I and my parents have dealt with it, I would be happy to share any insight that may help you!
Thank you so much for your kind words. It has definitely been a rollercoaster ride over the past two years since his diagnosis. He has grown so much and has become so strong because of this. It’s a long journey ahead, but I’m confident that he will continue to amaze us with his strength.
I know exactly what you mean. I was diagnosed at 10 months, and the past two years, my tics have been so much worse. Six times so far, my mother has had to drive me home on the floor of her car from my junior high school, and it puts such strain on what I can or cannot do, as I need to always avoid triggering them. However, if you focus on making your entire body limp, it can completely eradicate the tics for the next hour or so. Anyone with TS reading this should try it next time they have issues.
Katie ,
I have just read your story about your little boy & tears were streaming down my face .
As we are about to face the same dilemmas with our little boy .
I feel totally heartbroken at present but reading your words I know we will get through this hopefully .
I wish you and your family all the best for the future , keep posting as your post was v helpful xxx Jo ( UK)
Hi Jo,
Thank you for reading it. It is definitely a tough road, but I hope you as well as your son are able to find strength and peace during this difficult time. All the best.
Thanks for the article. My 7 year old struggles with Tourette’s and it breaks my heart!
Thank you for reading, Jodi! Yes, it is indeed heartbreaking to what your child struggle. I’ve shed so many tears for my son; however, his strength is incredible. There’s been some very difficult times, but it’s been nearly 3 years since he was diagnosed and we’ve watched him go from being heartbroken and wishing it would go away to embracing it as something that makes him unique.
Just came across this as my 4 year old son has just been diagnosed and I have spent hours on end trying to learn anything that might help him. I read through all the comments and I was wondering if any food changes, supplements or therapy helped him any. We live in Tucson and have made appointments with a neurologist, an allergist and a homeopath doctor but I don’t want to put him through any unnecessary stress or make things any harder. He is so young and he has about 15 tics already, my heart breaks for him. I can so relate to all the emotions you experienced and am so thankful for people like you that can put it to words so beautifully to inspire those headed down the same path!
Hi AJ, thank you for reaching out. As of now, we have only had Tyler see a psychologist. He’s been seeing her for the past three years and it definitely seems to help him. I’ve not tried any other supplements or therapies with him, because of the fact that his tics will suddenly worsen seemingly overnight and will stick around for a few weeks or months, then stop just as quickly as they came on. It’s so hard to try any sort of diet, medication, or anything else, because we don’t know if that particular method is actually working or if his tics just stopped. We’ve been very tempted to put him on medication when he goes through his bad spells, but again, his tics will suddenly stop after a few months and I would hate to put him through the side effects of medication and not know if it is actually helping. It definitely is heartbreaking to watch him battle these tics when they are really bad, and I know you can relate to that. I wish I could give you more information. I really think that you following your gut when it comes to treatment and doing as much research as possible is doing more help than you think. Educating his teachers and just finding what works for him as a coping mechanism is huge. We have to do it every year, but it has been huge to helping him to be successful at school.
Read Dr Mercola’s Article “Mold in your home may be making you ill’ My Son has dealt with similar issues. MDs are not trained about mold and the symptoms of exposure. I have spent the last 6 months or more doing massive research. Trust me take the 5 min to read this article it will blow your mind.
Thank you, Alicia. I will definitely give it a read!
Katie,
Thank you for sharing your sons story. It was inspiring and filled me with hope. My son (12 yrs old now) was formally diagnosed with TS last year and unfortunately his “previous” pediatric doctor kept brushing off his symptoms as just “boy stuff” and saying he will outgrow it. But when it started affecting his schooling and kids started teasing him, his then principal asked us in to a meeting to discuss what was happening and she suggested that he be diagnosed by a neurologist because he may have TS. His tics were very familiar to her because her son has TS. That was a huge eye opener for my husband and I. I remember feeling nervous and scared of the unknown, but quickly educated myself and made an appointment with a neurologist who confirmed that it was TS. Now he is on a very mild medication, because his anxiety about trying to control all of his tics and OCD’s was stressing him out to the point he couldn’t concentrate in school and his grades were slipping. Once we started him on medication, he had more control of his tics and his grades went back up. However, I don’t like the idea of having him medicated long term, so we are now trying acupuncture, which has been a HUGE success. After two consecutive sessions all within 4-5 days of each other, 90% of his tics are no longer visible. The doctor says that with continued sessions all of his tics could eventually go away. That being said, if he stops attending the sessions his tics will eventually return. For now, this is an organic means of helping him, which I’m all for. Something else to note is, most insurances won’t cover the cost of acupuncture sessions, which can be costly, so you may want to call your insurance ahead of time to check. This is an option to consider if your son is willing to sit through a session of being poked with a hair thin needle in multiple areas (my son gets six: one in each shin of his leg, one in each side of his elbows and one in each area between his thumb and forefinger) and then electric pulses run through them for approx. 20 mins. My son says it doesn’t hurt and the pulsing tickles a little. I just wanted to share this information since it’s been such a blessing to see my son be a “normal” kid for the first time in a long time.
God bless you all!
Denise Fong
Brooklyn, NY
Hi Denise. Thank you so much for sharing your son’s story. What a great comfort to know that your son’s principal will be an advocate for him. Having the leadership in the school on your side is always helpful. I’m glad to hear that the acupuncture is working for your son. I will have to discuss this with my husband as well as my own son. He absolutely HATES needles, but maybe he would be willing to give it a try if he knew it would help him. I hope that your son continues to benefit from this and that his upcoming school year is a great success!
Hi Katie,
it’s an amazing thing you have done here writing this post about your son out of your heart, putting it all out there. I came across your page as I was researching tourette syndrome because my friend’s son has it and I wanted to learn more and maybe help her. I see that you are not considering medications because of possible side effects and the sudden start and stop of his symptoms and think you have done an amazing job learning about this syndrome on your own and taking it in your hands to do what is best for Tyler and your family. In reading your post and writing this response I think it’s great that you are putting your story out there for others. You have a kind and caring heart! Me too! I am always looking for ways to give to others and if you ever consider it I would love to give to you. If you ever consider natural solutions I would love to gift you some essential oil blends if you ever decide to go that route. I am sure you are well aware of them and have done your research on them but I just want to be a blessing for others and if it could help Tyler, as you say in those really rough times, then my heart would melt knowing I helped Tyler. I am not looking for in any way anything in return from you, ever. If there is a chance that I could give a gift of my knowledge and oils that could potentially help a young boy, I will and that is why I write you, to maybe be a blessing to Tyler and your family and if you ever do decide to try this natural route. Oils have virtually zero side effects but still need to be used carefully and properly. (I’m sure you may already know that.) I can’t wait to see if my friend’s son has improvements. I would love to share with you and others though if he does! I pray for your son’s improvement of symptoms whatever paths he may go down. Thank you for posting and giving others a snapshot of this syndrome so that they may benefit from reading it. Blessings to you, Tyler and your family. <3
Erica,
Thank you so very much for your generous and kind offer! I, too, am interested to hear how it works for your friend’s son. Essential oils are not something we have tried yet, but I have done extensive research on them. Even now, his tics wax and wane in severity so trying anything is so hard because of the sudden onset and then the sudden decrease in severity. He always has them, but at times (like now), they are mild and not bothering him. I will do some more research and definitely reach out, should/when the need arises. You are too kind and I really truly appreciate you wanting to help others. Your friend is incredibly lucky to have someone like you in their corner!
Thank you so much for this. My 10-year-old son Caleb was just diagnosed with Tourette’s, his is very severe. I could relate to so much of this post. He was clearing his throat all the time for about a year, but we had no idea it was a tick. Just this summer he began screeching and having severe facial expressions. He’s been made fun of at school and left out recently at a birthday party with a close friend. May God give you strength for this hard journey. *hugs*
My heart goes out to you and the struggles your family is going through. We are very very thankful that our son has not been excluded or made fun of at school. There have been a few times when he’s been teased during sports; however, we’ve had so many talks about how he can advocate for himself as well as his brother advocating for him as well. It’s definitely difficult as a parent to watch your child struggle through something that you can’t control, but it’s incredible how strong they become when they are faced with something like this. I hope and pray that your son will find the same strength and realize this disability won’t hold him back as long as he keeps pushing forward.