Earlier this year we were drowning. Our family felt like it was going down a big ol' whirlpool and we were desperately trying to claw our way out. Something had taken over our life and absolutely everything we did--from sleeping to eating to going to church to running errands--everything was rotating around one thing: Tourette Syndrome.
Our younger daughter (7 year old Little Bit), was diagnosed with Tourette Syndrome when she was 4. We thought the tics had been bad before. We thought it was awful that our little girl had to live with such a thing.
What we did not know is up until this year, it had been a walk in the park. With balloons. And possibly cotton candy.
When she was diagnosed the neurologist told us he would not consider medication for her unless "she just isn't able to function in daily life." Well let me tell you, we were there. But still we did NOT want to put her on any of the drugs that are offered to control the symptoms of TS.
You may ask why? Why would you refuse to get medicine that might help your daughter? Well, the medicines are big and bad. And none of them work on all people with TS. And she is so tiny. I could not even imagine having her take some of those medicines. We still thought there was more we could try before we got there.
Before I tell you what we tried, I'd like to tell you how life was. It all feels like one big blur, but I will try to describe how our definition of "bad" changed.
You know, there are two kinds of tics: motor tics (any repetitive movement that they "have to do") and vocal tics (any repetitive noise that they "have to make"). Little Bit had mostly had motor tics since she's been showing symptoms just before she turned 2. Lots of motor tics. Lots and lots and lots of motor tics.
Jumping, shrugging one shoulder, touching her thumb to her head, tucking her chin towards her chest, touching the arm of whoever is next to her, touching her tongue to whatever item was in her hand, head shaking, blinking, touching her tongue to each shoulder, raising her eyebrows, clenching her fingers, tightening her neck, wiping her eyes....the list goes on and on. There is no way to record them all. The motor tics, they are aplenty. I remember one night when she was 3 or 4, her motor tics were going so crazy that S just picked her up, put her on his lap, and wrapped his arms completely around her trying to help her calm down and be able to be still for a just a few seconds. She would get so exhausted from all the movement all day long.
But the vocal tics were very few: clearing her throat (the one that prompted us to the doctor originally), making sort of a huffy breath by exhaling quickly, repeating certain words or sounds...not that much to report.
Then, around April, everything changed. We aren't really sure what set it off. Usually, her tics tend to get worse around her birthday and Christmas. That makes sense, huh? Exciting. Anticipation. But in April? One thing that did happen was my Dad was in the hospital for about a week. We thought that might have had something to do with it. But even after he was home, things continued to get worse.
This time the tics were mostly vocal. Here was the tic: screaming. As loud as she could. Until the veins in her neck stood out. Her whole body would tense up during the scream. Rest a few seconds. Repeat. For HOURS. In between screams she would fuss and cry that her throat hurt and that she didn't want to do it anymore. She was exhausted. The screaming carried on off and on throughout the day. It went away while she was swimming so we did a lot of physical activity! But no matter how the day went, at bedtime it all got worse. The girls share a room so we pulled Little Bit out onto a mattress in the living room so Sweetheart had some hope of getting to sleep. Although she could certainly still hear the screaming, she eventually went to sleep each night. Back in the living room, S and I tag teamed trying to help Little Bit get to sleep. We tried everything: ignore it, rub her back, give her the iPhone to play Angry Birds (which seemed to help calm her down because she was concentrating), play soft music (couldn't hear it), drive around in the car, go on a walk, get up and play longer until she was so tired she would surely be able to fall asleep, pray (throughout all of it), rocking her, reading to her (couldn't hear it). The list goes on. No matter what we tried, it took almost 2 hours to get her to sleep each night. The entire time punctuated by screams.
And church? Or outings in public? Oh dear. We switched churches during this time (a good change--less stress actually). At our old church, the music was so loud she could actually scream into a little pillow we brought and no one would hear her! We had to leave early as she couldn't hold it together very long and didn't want to go to class. At our new church, she and I would just go sit in the cry room or go outside where she could scream. We went out to eat for S and my Dad's birthday one evening and she was worried about "what if I have to scream?" I was so over the tics by that point I told her to just go ahead. I honestly knew that I wouldn't have cared who looked. But, she was horrified by the thought, so we went to the parking lot.
The screams really did hurt your ears. We tried to not cover our ears or react as though it was hurting but one time I did rub my ear after a particularly loud scream right by my ear and Little Bit just dissolved into tears. "I'm sorry Mommy! I'm sorry I hurt your ears!" Oh my heart. Sweetheart is sensitive to loud sounds anyway so she came to school each day with cotton in her ears so she could get her work done. School was done in segments. There is only so much frustration a 1st grader can handle. It was during this time that I realized--we are definitely at the point where she is not able to function in daily life.
We were drowning in tics. She was drowning in frustration and exhaustion.
Tomorrow I will share how we drowned those tics and what is working for us (right now!). If you have a child with TS, then you know how difficult it is to find answers on the Internet. I am sharing our story so that it might help others who are dealing with this. Stay tuned!