*Disclaimer, I am not a medical professional… just a parent sharing the best ways to go about moving forward with finding out whether or not your child has Tourette syndrome or a tic disorder! Pediatricians and neurologists are the best possible people to help you find out what’s going on! 🙂
Just for reference… we have already shared about how we figured out Ellie’s Tourette Syndrome both on Instagram HERE and on the blog HERE.
But every week I get DMs from parents who are worried… they really don’t know what to make of the “quirks” their child has and they are so scared to jump to conclusions or find out it may be Tourette syndrome. I TOTALLY get the worry and the fear… but just remember (this is coming from someone with major anxiety) – fearing and worrying about something won’t fix it or make it go away. You are brave and capable of moving forward and facing this head on… so let’s get to it 🙂
First.. we want you to hold out hope (we don’t think hope is a bad word, we think it’s a powerful lifeline we all need sometimes) that joy won’t end with a Tourette syndrome diagnosis if that ends up being the card you’ve been dealt. Is TS hard? Yes… for both the person with it and the people around them, but joy does not have to end there. You just have to do whatever you can to communicate very well with others (we have a Tourette Template and Printable in our shop that takes a lot of that burden off of you) and move forward from there figuring this thing out together.
Second.. let’s get to work! Here’s what we MADE SURE to do when figuring out what was going on with Ellie and how we got her diagnosis.
#1 – VIDEO VIDEO VIDEO. Tics don’t happen all of the time, and they change frequently… so if you take your child to the doctor because you suspect Tourette’s or another tic disorder… they may literally have 0 tics in front of the doctor. For Ellie’s appointment, I had three really great examples of tics ready to show the pediatrician on my phone when we got there and then Ellie actually ended up having a lot of tics right in front of her that day – but so many people feel defeated when they are trying to explain the ‘tics’ or ‘quirks’ to the doctor and have nothing to show for it. Video documentation is EVERYTHING!
#2 – Make sure you are writing down or keeping note of when tics occur, what they are and how often. It was very eye-opening to me when I was documenting Ellie’s tics to see that she specifically had a major increase in tics when she was in any heightened state of emotion… both positive AND negative. When Ellie is very anxious and nervous, her tics are bad… but they are also bad when she is really happy and hyper! When she’s reading and concentrating… her tics are way less frequent. This helped us be able to better anticipate when her tics would be worse so we could be there for her and be prepared. Click HERE for a free printable chart you can document tics with!
#3 – There are a lot of great studies and websites online where you can research, but the BEST info I’ve found (take it with a grain of salt though if something seems weird… use your discretion!) is through online Tourette communities and social media accounts of those with TS. I have learned so much more about Tourette syndrome from our pal Evie Meg (This Trippy Hippie) than I have from most websites because she’s a real life example of someone living with it right in the moment and that translates so much better than words on a site. We LOVE sharing Ellie’s story (she knows she is helping people and it gives her such a sense of purpose and pride!) because other parents are witnessing actual tics and Tourette syndrome in action and they are piecing together things they otherwise might not have and that is so important to us! Follow Tourette syndrome advocates (Britney Wolf is AMAZING) and join Tourette parent groups on Facebook. Listen, learn, watch, share and grow TOGETHER in community with each other… don’t do this alone!
I know the feeling of your stomach dropping when this unknown thing starts happening to your child and you just start thinking 1000 crazy things, worrying.. wondering what this is going to mean for their future, I understand. But don’t panic, don’t give up hope. The Tourette syndrome community is by far the warmest one I’ve ever been welcomed into with Ellie and we are so thankful to be here now and be able to make an impact. You guys will get through this together, and we are so happy you’re here.
Looking for some apparel to show your support for the person with Tourette’s in your life? Click here for some cute designs we put together!! 🙂