I'm new here, and don't ever post much on mothering, but recently my son was diagnosed with ADHD and a tics disorder, looking like it is full on Tourette's Syndrome. This has all been an emotional roller coaster ride for me. I knew the ADHD diagnosis was coming, but the tics disorder has me worried for his school years and I don't feel like I have fully excepted it as reality yet. I so just want to shield my baby from the world, but I know I can't do that. Anyone else have a child with a tics disorder and/or ADHD?
When did you know something was off?
I noticed something different with my son really since he could crawl. He never grasped personal space, always was impulsive and very aggressive. He exhausted me. I was always living in fear of what would happen next, what he would do. I was a "hovering" parent b/c I honestly had to be. I have always felt isolated as a mother b/c of it. I am just thankful now that I can finally get him help and our family can heal.
The eye blinking tic started when he was around 4 1/2 and it now consists of coughing, clearing the throat, hacking at times, snorting, and scratching. I always thought it was allergies.... but no. I'm curious as to what other people have experienced and how it all started and what age.
I haven't been to Mothering for a long time and I specifically came on this morning to check their SN forum for this same issue. My dd2 was diagnosed with Tourette's last month and we are working on the ADD or ADHD diagnosis. I've known about the ADD for awhile now, but not bothered with diagnosing until now. The neurologist we went to thinks she has OCD as well :(. Emotional rollercoaster is definitely the right way to word what we are going through. I've looked for Tourette's support groups but the nearest is 1.5 hours away. I'd love someone to talk to about this.
I got a book on Tourette's and every time I open it I just get more depressed. One day I opened it and found out my 2 year old son has a 50% chance of getting TS. That one left me depressed for days :(. My husband was diagnosed with ADD and OCD as a child and now that we are going through all this with dd2 my husband starts telling me about all his tics as a child, motor and vocal. He has this eye twitch that he does sometimes and I think that is related. So I guess he has Tourette's and it has just gotten better with age (which can happen). Tourette's is a genetic disorder so all this makes sense.
I could write a lot more but I don't want to bombard you with my ventings ;)
My son (age 8) was just diagnosed with Tourette's & OCD a few months ago. He is also extremely hyperactive, but didn't get an ADHD diagnosis because he focused really well during observations...I am still very sure ADHD.
I knew something was off since he was a toddler...he spent most of his days in a make-believe world and it was hard to get him to break character. He has very intense obsessions. His tics started at age 4 and have been mostly vocal. He also goes into rages easily, and goes through periods where he is aggressive. Sometimes he will hit someone at school completely impulsively, and have no idea why he did it. On top of all that, he has learning difficulties (slow processing speed), and is very socially awkward.
It's been tough. Just wanted to say "hi", and that I know how you are both feeling.
Hi Winnie, so happy another Mom replied. A year ago my husband and I watched a movie "Phoebe in Wonderland" on Netflix. It was about a girl with Tourette's and it showed all the different sides of Tourette's. In the movie she spits at people when she becomes upset, it is a tic. I just thought I would recommend it to you and other other TS parents :)
My dd2 sat still and read a book for her ADHD evaluation! For the first time in her life!!! Great timing kid lol. After we left the doctors office we went grocery shopping and she hopped throughout the entire store and even started climbing on the checkout stand lol. Wouldn't that be a wonderful place to evaluate kids for ADHD? Let's just make the doctor take them to a grocery store lol.
We started my daughter on a medication a week and a half ago and it's been strange. It's a non-stimulant ADHD medication that can help with TS. The first little dose she was given, helped a bit with the ADHD but did nothing for her tics. The higher dose seems to have depressed a lot of her motor tics, but made her irritated and "off". I really hate this. I know that she needs help, she is behind in school and cant concentrate at all. It is hard though.
I am a mom to a 3 year old boy. I grew up with TS. My son has 50% chance of getting it from his genetics. He is a lively and curious toddler who's energy is infectious! There isn't a day that goes by that I don't wonder if he will have the symptoms of TS.
I've had a beautiful life. I have a university degree, critical thinking, writer, compassionate and empathetic person who is no stranger to adversity. I was medicated for a long time on drugs that aren't legal for kids anymore - might be my only regret - but then who knows where I'd be if I hadn't been able to make it through school as well as I did. If I can help you understand, share my experience, I am more than happy to demystify TS if I can.
My 5yo DD has Tourette's, OCD, SPD, anxiety, is extremely bright and the doctor says ADHD too. I don't agree with the ADHD diagnosis in the typical sense in that she can and does happily sit still for long stretches of time, reading or drawing, but he says that ADHD applies to the mind too, and it's true that she's been saying for YEARS that her brain just won't stop when she tries to go to sleep at night, so who knows.
She has had tics for as long as I can remember, both motor and vocal.
Right now she is in a storm of motor tics; coughing, throat clearing, grunting, stretching her fingers, stretching her jaw. Her verbal tics (at the moment): "How old are you?" and "Are you 69?"
When she was an infant, we joked about her OCD (lining her little plastic animals up in perfect lines according to size), embraced her constant need for physical contact, and celebrated her brightness. Now those things have shadows, and seem so much darker than before.
Other kids and parents are starting to notice her differences now that she's school-aged. We homeschool, so we've avoided a lot of environments where she'd stand out. I tailor her day with her needs in mind (she chooses her clothes, we limit social obligations, we time outings for when she rested and able to interact, she has hours and hours at her disposal to read), but my heart still hurts to think of how she struggles.
We're waiting to get in to the Neuro-psych program at the local Children's Hospital, and my hope in connecting with them is that we'll be able to get some OT for the sensory-stuff, and some supports and resources for her Tourette's.
I've appreciated everyone's contributions to this thread. Thank you for sharing.
I only come to these forums occasionally these days, but when I do, I keep my eyes open for threads like this. My 10-yr old was diagnosed with Tourette syndrome when he was...hmmmm, I think he was 7. My younger sister has Ts, and I grew up seeing and hearing her tics. It was like seeing my sister as a child again when my son started doing the exact things I'd seen Lisa do, so many years ago. I kept an eye on his vocal and motor tics for over a year, then went off to get an official diagnosis. Just so we would know, and just so we could empower Micah with that same knowledge when he started getting questions or comments.
It's a roller coaster, for sure. There are certain characteristics that Micah has that are so positive---he can channel his intensity into incredible projects, when he commits to something, he really commits to something; he is amazingly creative. But those same characteristics can take on a negative tone, too---he can display incredible anger, he has a very difficult time letting go of an idea or thought, and he finds it almost unbearably frustrating when he can't realize his creative visions. He's like The Spirited Child on steroids, with a huge extra dose of impulsiveness and tendency to anger. And he's been this way since he was a baby. He's the youngest of our kids, and he's simply...different.
It can be really difficult for the entire family at times. We all understand the tics, and can overlook them, even the ones that involve profanity, but it's much more difficult to work with the other challenges he has that are related to Ts---the impulsiveness, the anger, the lack of self-control. We homeschool, and that's a mixed blessing. I think it's very, very good for Micah, but it also means that the other kids never get a break from him (that's hard to type, but I know that's how they sometimes feel). It takes a great deal of energy most days for me to keep the ship sailing relatively smoothly.
Having a lot of activities for Micah helps, as does keeping him supplied with lots and lots of supplies for his creative endeavors. Fortunately, his interests tend to lay in what he can make with cardboard boxes, duct tape, foil, and markers, so it doesn't take too much money to keep him healthy and happy, lol. We have also, after a lot of discussion with doctors and with my sister, decided to use meds judiciously. These have really helped, and Micah himself notices a huge difference on the rare day when he forgets to take his meds. I know that's controversial, but when you reach your limit, you reach your limit.
Fwiw, there are some pretty active Ts Facebook groups. I've founds some good connections there.
Joni and kids, incl. Micah, 10, w/Tourette syndrome