Monday, January 7, 2008

Life With Tics

I've backed up a bit to tell our story with our daughter's tics. You can read earlier posts about our journey here and here.

In February of 2007, our then 3 year old daughter was playing a game on the computer. She kept sort of shrugging her shoulders up and rolling her head back. Over and over. I finally decided that maybe her hair was bothering her. My poor baby has never had much hair, but at this point in time the back of her hair was finally growing out a bit in the back. I thought it might be tickling her neck.

"Is your hair bothering you?"


So I somehow managed to get her hair into two tiny ponytails. How cute! I took a picture since it was probably the first time in her life she had enough hair for any kind of ponytail.

And then I forgot about the whole thing.

I'm really glad I took that photograph because it helped us know just how long this had been going on when we looked back at the date on the picture. In order to be diagnosed with Tourette's Syndrome, a person must have both motor and vocal tics for a period of at least one year. By the time we meet with the neurologist next month, Little Bit will meet that criteria. That's why I'll be really surprised if this is not Tourette's. But then again, I'm no neurologist.

After that (since we still really hadn't caught on) I couldn't tell you what she did until at least July. That's when S told me to watch how "nervous" she was and we visited our pediatrician. Since that time I have been keeping a journal of the tics that we see. Some of these are hard to explain:

raising her eyebrows, panting, licking her shoulders, coughing/clearing her throat, moving her head/neck, shrugging one shoulder up and down, facial movements, eye blinking, jerking head back/chin up, tucking her chin down to her chest, looking at her right arm, exhaling in a huff, repeatedly touching the person near her, and licking. Those are just the major ones. All of these stayed for a period of a few days to a few months. They come and go. They come back after being gone for months. She does several of them at once or just one. They get worse when she's tired, scared, stressed, or excited. She does something every day. Some days it's not really all that bad. Some days she just has to be exhausted at the end of the day from all the calories she has burned.

Sometimes the tics scare us. Like when she licked the laundry soap scoop before I could catch her. Or the open pair of scissors. Sometimes the tics are frustrating. Like when she cries before she goes to sleep that she "can't stop." Sometimes the tics hurt. Like when her fingers are sore from clenching them all day. Or when her throat hurts from tensing up her muscles all day. She complained about that one. "Mama, it hurts when I do this (demonstrated)." I told her she needed to stop. "But I need to do it." Those days break our hearts.

A diagnosis won't change our lives. Our life is already different. In a way the doctor's appointment won't really make that much difference. And it's kind of a big thing. But not really.

She's still our daughter. She's healthy. She's funny. She's smart. And we love her.


  1. Oh wow! I didn't know she had those tics. I can imagine how frustrating that is for her. I wish I could just hug her!

    I know a diagnosis won't change anything, but it will help you out with how to handle it, right?

    I'm praying for you!

  2. Much compassion arises within me when I read these posts. I will pray for all of you for her complete healing. If He can forgive a sinner (like me), surely He can heal a sweet little girl like yours...and wants to! God bless you.

  3. Brenda,
    Thank you for sharing all of this with us. I love that you are vulnerable about it.
    I know the Lord wil guide you and your husband and give you wisdom as you wade through all this

  4. My brother and I both had many of the tics you describe.. and I'm the only one who's got rid of it.

    I hope it won't upset you if I write this, but I strongly believe that these things are demonic. I know so; when I became a christian (mind you, the only one in our family) they disappeared like snow for the sun.. after at least 12 years!

    It's sad to see that the young ones who suffer from them can't explain what they are going through very well.. but it's like your daugter says: she (and I had that as well) wants to stop.. when she gets older, she WILL know that she looks funny to other people. It annoys her as much as it annoys anyone else..

    but she CAN'T stop. although she wants it real bad and feels bad about doing these things, there is a force inside that makes her feel even worse when she does NOT do it. It's really hard to explain.. your mind says 'no!', but that inner force says 'yes!' louder..

    And it feels like slavery, that I can say.... and that's exactly what it is..

    Seriously, I hope I'm not offending you, I'm just saying what made me get rid of those tics.. you need to claim authority over her life and body in Jesus name.. he WILL heal her and the devil WILL flee when he hears his name.

    I know it sounds harsh, like 'your little girl is posessed', but please don't take it that way.. it's not her fault and it's not the parent's fault either.. it just something that happens when there was a small moment in time that there might have been an open door....

    But seriously, claim Jesus' blood over her life and like the stories in the bible say, any bad force will HAVE TO flee. I hope I could have been of any assistance :)

    greetings from the netherlands..

  5. Brenda,

    First, Little Bit is such a sweet looking girl. I know if we lived closer, mine and yours would be great friends.:)

    More importantly, I will continue to pray, for Little Bit and for you and S and your family. Our Lord is limitless and powerful. All that He does through this will be no surprise and such a witness to His greatness.

    Thank you for keeping us posted.

  6. Sometimes I wish I hadn't read other's comments before leaving my own but...never mind. Maybe I'll email you. You know that even though we've never met, I've always felt like we are kindred spirits. I am praying for Little Bit, you, and your entire family. Stay encouraged, my friend.

  7. Oh for goodness sake. How I wish I could post my thoughts on another comment (I actually did but deleted most of what I said!) but I wouldn't dream of creating a controversy or argument here without your permission.

    Please just know that God is with you and your daughter, and whatever the circumstances or ailment He will be there to walk alongside you both and give you strength and comfort. His plan for your daughter is perfect, even if we on earth don't understand. Be encouraged and know we are praying.

  8. Brenda.
    I don't know you but found your blog through Terry's Tag challenge, and I must say that your daughter is just as precious as her name sounds.( Loving the pig tails!!!) I will be praying for you and for her and that God touches the her infirmity as his word says He is touched by our infirmities and that he gives you the strength and wisdom to guide her through this. She is a child and as we all know He holds a special reverence for little children. I will keep my comments to myself in reference to other comments, sometimes I just feel that if you can't say anything encouraging then you should just pray inside of your little closet and tell it to God and Him only. I look forward to knowing you through your blog and following you and Little Bit through this journey. My prayers are with you sister! Stay encouraged! smfg

  9. Brenda, my heart goes out to you and your family. I have a somewhat similar situation. Noah does not have TS, but he does have a speech stutter. I can't relate to the physical pain Little Bit suffers, since Noah does not have physical pain. However, the other things, I can completely sympathize with. Noah is completely aware of his stutter. He tries, but sometimes it is beyond his control. And, truthfully, the harder he tries, the worse it is. It also is worse when he is tired, nervous, stressed, etc. Some days are definitely better than others. He has been in speech therapy off and on for 2 years. (The off times, we were told to practice what he had learned and basically live with it.) He is in an off time now, and doing great. The therapy really does help.
    I'm certain you will too find things that work for your little bit. Hang in there. God has a very special plan and purpose for her life. I keep reminding Noah of Paul and how the Lord used him with his disability! However, I'm still holding to the hope (that is in God) that he will outgrow the stutter as his brain and speech continues to develop. Don't give up hope!

  10. I'm not making light here...but it's a wonder I haven't been diagnosed. I have a couple of things I feel compelled to do, too. Doesn't everyone?

    Your last statements are the truest of the whole post! Keep focused on finding the victory in this. Jesus knows. :)


I don't get to talk to a lot of actual grown-ups during the day, so your comments make me really happy! :)