For the past two years I’ve noticed tics in our older son. During his yearly check-ups I would mention it to the doctors and they would more or less brush it off as “normal” behavior. To me it was a red flag. Why, because my brother was diagnosed with Tourette syndrome around the age of 6. My brother’s TS is on the milder side with mainly non-verbal tics however he does have one verbal tic which is clearing his throat. The verbal tics (vocalizations) that include shouting, barking or obscene language is very uncommon actually.
Tourette syndrome or TS is a neurobiological disorder characterized by tics–involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly. Genetic studies indicate that TS is inherited as a dominant gene, with about 50% chance of passing the gene from parent to child. Sons are three to four times more likely than daughters to exhibit TS. The very unfortunate thing is no definite cause has yet been established in finding the cause or cure for TS over the last several decades however considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine.
Over the past few months I’ve seen an increase in our sons tics which include raising his eyebrows, blinking, clenched jaw and a shoulder movement. The tic’s are typically more noticeable when he’s upset or tired and are intensified after playing a computer game or iPad/iPhone game. After a recent in-depth conversation with my brother about TS I was even more certain that our lil man had “it”. I cried my eyes out when I got home. It was my bad genes! I felt so guilty I had passed this onto our son. After speaking with my husband, we were in agreement that it was time for action. I called the pediatrician and remained firm that I wanted our son tested by a specialist for tics.
This past week we took our son to a Neurologist. I requested an appointment with the Head of Neurology at one of the major Orlando hospitals. Because there is no “test” for TS the doctor simply observed our sons behavior and asked my husband and I several questions regarding our son. The conclusion was he has a tic disorder. I flat out asked him if he thought our son had Tourette’s and his reply was, “there is no benefit to labeling it for now”. His reasoning being that there is no cure for TS and because we have not encountered any issues or barriers regarding our son and his tics. I exhaled. A tic disorder somehow sounded better to me.
We also learned that there are several associated conditions including ADHD/ADD, OCD and learning disabilities. My husband has worked in the school system for several years and has come across many students who were undiagnosed with ADHD and ADD and had them evaluated. He’s mentioned to me before that our lil guy has ADHD and I always reasoned it out to our son being an excited kid who sometimes doesn’t listen. That sounds like any 4-year-old to me! The Neurologist seemed hesitant to “label” our son with anything, but did imply that it was evident our son had several of the characteristics of ADHD. He sent us home with a pamphlet that offered a scoring system and based on the answers we supplied it reflected where on the ADHD scale our son lies.
Of course the doctor talked meds with us, but my husband and I had discussed our stance on medicating our child before going in and we both agreed: NO. The doctor respected our decision, but rattled off several statistics about children who do not get ADHD “under control”. He also said that if the tic disorder becomes an issue socially (bullying) or the ADHD becomes an issue education-wise we are welcome to have our son re-evaluated. I asked for constructive non-medicated ways of helping our son with ADHD and he directed me to their website for examples. Not to push any buttons here, but I’m for finding a solution, not masking it with medication. That’s just my opinion and other situations may differ from our sons.
All of this news has been a bit overwhelming and quite upsetting for me. 🙁 I don’t want my son to have challenges, especially since bullying is a HUGE issue in schools. I am glad bullying is finally being recognized and action is being taken, but I don’t see enough change to feel comfortable just yet. On the flip side, our lil guy hasn’t noticed his tics or complained about them so possibly his 4-year-old school mates won’t either? He begins pre-k at the end of the month so we’ll see how it goes….
Crazed in the Kitchen says
Your son is so lucky to have parents who advocate for him as you two do. Being aware of these issues from such a young age will undoubtedly help him as he gets older. It sounds like you are doing a great job!
Andrea says
God Bless you & your family as you deal with this. I hope for all the best for your son!!
Anne says
Sounds like a lot to cope with, and I agree medication should be a last resort. Hopefully it won’t be a problem at school, young kids are pretty oblivious to many things.
Leigh @oneandoneequalstwinfun.com says
Thanks for not only an nformative post but a heart felt one. Let me applaud you for keeping your head in the game and following up even when the doc s were brushing it off. You are his biggest advocate – and even if there isn’t a “cure” there are coping mechanisms. I know a teacher who has tics – imagine being “on stage” all the time with it. Bravo to him. So your support will mean everything. I am posting an entry on “labeling your children” this week – you might find that useful.
Leigh
Jennifer H says
Thank you girls and Leigh I will def check out that post!
Columba Lisa Smith says
So sorry to hear this. Health issues are very upsetting. My son was diagnosed with type 1 diabetes a year ago, at 14. He’s learning to self-manage it.
Don’t hesitate to ask if you want information about homeschooling. I’ve always homeschooled my three, and I’ve been very thankful my son has been home this past year.
Blessings.
Rachel says
Good for you for pushing to get him tested. I agree with you on the no medication. Especially at his age. And who knows, he could get in school hang out with some new friends and end up dropping the tics.
Justice Montgomery says
I just wanted to offer a tiny bit of encouragement as far as other kids noticing the tics in the early years….they probably won’t. Not until kids get older and mean, do they pick on kids for their differences really. My son started to stutter in first grade. He was a late talker and his speech was still developing. I approached the subject with his teacher when we requested that it be evaluated along with some other issues, and she said that there are quite a few kids that stutter in his class. He’s starting 3rd grade this year and stressful situations still make him stutter. He’s also medicated for his ADHD, which is on the severe side of things, and has some other underlying conditions that the psych/doctors don’t want to ‘label’ him with, but the medications do cause several ticks. The two most notable are this twitchy thing that he does with his nose, and the eye blinking. Which also have not been noticed by the other kids. The teacher didn’t pick up on it, until I pointed it out last year. Unless your son is causing a huge disruption and getting the direct attention of the kids, most of the kids probably aren’t going to be watching him, and be too busy doing their own work or playing with their stuff to even notice. 🙂
Jennifer H says
Great info, thanx Justice!
Kiersten @ Oh My Veggies says
I’m sorry you’re having to deal with this! 🙁 I went to school with someone who had TS (the twitching, not the vocalizations) and no one ever made fun of him for it & he’s gone on to be very successful. Having supportive parents and friends makes a big difference!
Jennifer H says
Thanx Kiersten!
Jennifer says
I can’t imagine what you’re feeling and going through. The only thing I see a positive in is that you’ve already been through it with your brother so you kind of already know what to expect and how to deal in a way.
Jennifer H says
Thanx Jenn!
christina flores pozzo says
WOW… That is a lot for me to take in, I can only imagine how you are doing… J is a good boy and he has two great parents that are by his side. Please let us know if there is anything we can do for you and your family… XOXO
Jennifer H says
Thanx Christina!
Shell Fruscione says
I’m so glad that you at least know what it is now so that you don’t have to wonder & worry all the time. I mean, you’ll still worry about bullying but at least you know it’s something manageable. I hope you’re successful in finding ways to treat it without medication!
Jennifer H says
Thanx Shell!
Kathy says
Wow! (((HUGS)))
Jennifer H says
Thanx!!
Jennifer H says
Thanx Steph!
stephanie webb says
Thanks for sharing! I’m sure thats not easy! Good job to you and nate for being proactive, as with any syndrome or disorder the sooner you catch it the better. Alot of parents though feel like if they ignore it, it’s not really happening.. which of course just makes the situation worse. I think regardless of whether it is isn’t labled something at some point, he will come out of it well, because you and Nate have his back!
Jennifer H says
Thanx girl!
Ashlee Schnelle says
Wow, sounds like a lot to take in. I’m glad you have some insight now though instead of just thinking it. I hope it gets better though. Ill be thinking of you and your family