Ladies and gentlemen, we have had two weeks of non-stop excitement from birthday parties to sleepovers to Wii time to pool dates and, lo and behold, the tics are back!
Introducing, the squeaky gulp. It is happiest when interrupting Stink’s sentences at a rate of 20 times/minute, but it will make its appearance during quiet times, reading, chewing and teeth brushing.
While it is doing its best to unnerve me – and trust me – it’s doing a great job of it – I am hanging in there. I make no apologies for having my husband read bedtime stories to my little dude, wear ear plugs when needed, or just go for a walk (or 10) when I find myself losing it.
I refer to episodes like these as “Silver Bullet Denied”, for while I had hoped that the Intuniv would just blast these suckers away all together, alas, such is not the case. It is what is.
God, grant me the serenity to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.
And really, although I’m entitled to my pity party, I have so much to be grateful for. Just three hours earlier, my friend of 40 years asked me to visit her in the hospital.
“What can I bring you?” I asked, happy to finally have a chance to visit since her diagnosis two weeks ago.
“Bring your sharpest scissors,” she asked.
“Um… why?” I asked, not thinking she was planning on doing anything drastic, but it sounded odd.
“You’re giving me a haircut,” she said. “My hair will be gone by the weekend anyway, so at least get it off my shoulders. It’s so dry. I hate the clumps.”
“No problem!” I said.
One hour later, and a few snips that lasted five minutes due to her increasing chemo-induced headaches, she proudly sported a very short flapper hair cut.
“You’re like the Betty Paige of Leukemia,” I quipped.
She smiled and said she was tired, but asked me to come back Thursday.
I said I would and started to hug her goodbye.
She braced herself against the bed, and then I realized, “Oh, yeah. I can’t hug her. Her immune system is still too compromised. You’d think the surgical mask on my face would remind me. But no. Like thinking I can cure T.S., I’m a slow learner.”
Moms and dads, a cancer ward is not fun, but if my friend can name her chemo pumps Penelope and Kujo and dance on good days, we can get through T.S.. She will survive this – I know she will – and so will we! And so will our kids!
Andrea
Photo above my daughter’s favorite ballerina from her tea party. Bella is pure joy, and if you think she’s bugged one ounce by the squeaky tic, you would be wrong! She just dances on her little fat paws and encourages tu tu girls everywhere to squeak with joy.
Happily Ticked Off 
I am sorry to hear they are back. I wish I was there to give you a hug ( ) Nick’s are back as well, neck thrusting and head bobbing and eye blinking almost constantly. I believe his are anticipation of school starting in a week…….but all we can do is guess and do the best we can. And pray, pray, pray.
Yes, pray pray pray. I have been. It has helped calm me down big time. I’m so sorry about Nick’s, too. He is on the Intuniv also, yes?
yes he is on 1 mg. He has had lots of excitement though……school starting soon, is now in football (for the first time), is going on vacation with his dad in 2 days, have had family birthdays, etc. I am taking him in Tues to meet his teachers before school starts Wed. He is nervous as last year his teacher kept telling him to “stop doing that” (after we repeatedly tried to educate her) the last 3 months of the school year. Praying for all of our kids to have understanding teachers, friends, and support network.
Here too, and with a vengeance. Seasonal allergy trigger anyone?
@ Joy – I am wondering about that myself. Claritin? I also wonder if they are getting sick? Likely, though, just excitement of school. Sigh…
Andrea, I’m sorry to hear that the tics are back. I bet once you get through the next two weeks and cut back on some of those stimulating activities, they’ll slow down.
My boy is on Intuniv, too. It’s been over a year now and it’s really helped with the tics. He takes 2mg at night. We notice a huge difference when he has much less screen time. Also, he gets ticky during a movie in the movie theater, but that dies off later.
It’s a journey… Thanks for sharing yours! We’re overdue for a get together!
JCK – Thank you. I always forget your son had tics for a while. And hey, good job on the all Huffington Post stuff! Best to Lorraine, too. All three of us are due for a meeting.
I can so relate.
The first half of the summer, only someone on hyper alert for these things (cough, me, cough) would know he even had tics. And then they started back. Slowly, at first, but when we came home from vacation two weeks ago they were back with a vengeance. Something new: A snort that, when he’s talking, comes out like he’s trying to say the word “snurf” while mumbling through his nose.
“You want to snurake a snurath? What? Oh, a bath. Snure. I mean, sure. With lots of epsom salts, please.”
The other day he was talking about something Star Wars related, which is already Greek to me, and I literally had no idea what he said.
We’d been giving him dairy very sporadically earlier in the summer at the suggestion of the allergist who concurred we should stay away from wheat but thought dairy might be fine due to the way it’s processed by the body. But I wonder if we didn’t overdo it on vacation where, after 9 months off we went a little crazy with the froyo. But the tics didn’t hit epic proportions until a few days after we got home. Is it dairy? Is it being off our regular sleep patterns due to time differences? Is it what seems like a minor cold coming on? Or is it the natural ebb and flow of the tics? Wish I knew.
We’re going through anti-tic boot camp right now in anticipation of school starting later this week. The snorts are still there but not as frequent. The snurfs appear to be taking their leave only to replaced by what sounds like whooping cough. His teacher might send him to the nurse thinking he’s contagious, but at least she’ll be able to understand what he’s saying. (Knock on wood!)
I am thankful for the early summer reprieve, though. Honestly, it’s what keeps me sane, knowing there is another wane on the horizon. I worry about school, though…
Gwennnnnnnnnnnnnnn! Uggg. Sorry. Hugs hugs hugs YOU ARE GOOD!!!!!!!!!!!!!!!!!!!
Hey guys! Question…What is it that triggers more tics around eating, brushing teeth, eating suckers, etc. Seems to be mouth related stuff? Have you read or know anything about the mouth device that Dr. Simms works with in Tourettes kids?
Hi Carla – I did indeed read about Dr. Sims. I”ll do a post today on it and get you some feedback.
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