She started her new medication about 2 weeks ago. It only took about 2 days to notice the change in her. She is happy again! She hasn't had any panic attacks, some of her tics have eased off, and she is altogether a much more at-ease child.
Some tics still have a pretty strong hold on her little body. The leg jerk is the most dominant one. But she is HAPPY.
And not a "I'm on happy drugs" kind of happy. She is energetic, full of laughter and jokes, and just seems to have some peace for the first time in a really long time.
I can't wait to go back to the TS specialist and tell him that he has already made such a positive difference in her life, just like he promised he would. I am so happy with that doctor that I want to buy him a present! Haha!
Next month is National Tourette's Syndrome Awareness Month. The awareness ribbon color is teal. I am looking into buying some of the awareness bracelets so that she can pass them out to all of her family and friends to raise awareness of TS. It is such a misunderstood disorder and I believe that telling people more about it will help with that. I may even type up little cards and have her pass those out with the bracelets.
Right now, life is easier. I am thankful for that. I pray that her body doesn't become adjusted to that medication too quickly. She deserves this time of rest.
Friday, April 15, 2011
Thursday, April 7, 2011
A new medication....
One of her many tics is a constant leg jerk. She snaps her legs out at the knees in a way that my husband describes as "kick-starting a dirt bike". I have gotten many bruised shins from fixing her hair in the morning. She has been doing it for years, but I always seem to forget when I am standing right behind her, brushing her hair and putting in bows.
This morning was one of those mornings. I was almost completely finished when she kicked me, extremely hard, right in the shin. It is actually funny now that I think about it. I was just about to slide the bow into her hair when she tic'ed, first the top of her body, and before I could move, she snapped her leg. It kicked me right on my skinny little shin bone, causing me to slide my hand through her pony tail, messing up everything that I had done. I screamed, of course, which startled her, and she started crying.
"I am so sorry, Mommy! I am so sorry! Are you ok? Did I break your leg?"
I laughed uncontrollably through the pain, and re-fixed her hair. I explained that she was going to have to kick me a few more hundred times to actually cause a break.
I wish all of her tics were that funny. That leg jerk has caused her to trip, fall, kick people, kick walls... The people that are closest to her have learned to stay clear of her back side like they would stay clear of the back of a horse.
The specialist that we met with yesterday was amazing. He answered alot of questions, eased alot of fears, and most importantly, he talked with my very nervous little girl like they had been best friends her entire life. She doesn't like seeing new doctors. She becomes very stiff and quiet. Even getting her to talk louder than a whisper is a challenge.
At the end of the appointment, the doctor hugged her and said "Your life is going to be so much easier now that we have met."
I wanted to cry and BEG him to make that a promise.
He prescribed her a new medication to take in addition with what she is already taking for tics. He said that it would calm her down enough to be able to suppress the tics easier through out the day. It should also help with her panic attacks, and her obsessive need to rub and scratch her skin away.
I didn't give it to her this morning, though. I was suppose to, but I was so afraid that she would fall asleep in class or that she would have an allergic reaction and I wouldn't be there to help her. I have crazy anxiety of my own when it comes to her. Probably because we have been through so much already, I just want to protect her from anything else going wrong. So, she will start the new medicine on Saturday, when she will be with me all day and I will know if any side effects or allergic reactions occur.
She will see the specialist every 4 weeks. He will monitor the tics, make sure the medication is working, and make adjustments as needed. He will also teach her how to suppress her tics better when she is away from home. I think she already does that pretty well, but he says that he can show her a way to handle that so that it doesn't stress her out.
I pray that this doctor helps her. I am so ready to see her happy again. I miss her.
This morning was one of those mornings. I was almost completely finished when she kicked me, extremely hard, right in the shin. It is actually funny now that I think about it. I was just about to slide the bow into her hair when she tic'ed, first the top of her body, and before I could move, she snapped her leg. It kicked me right on my skinny little shin bone, causing me to slide my hand through her pony tail, messing up everything that I had done. I screamed, of course, which startled her, and she started crying.
"I am so sorry, Mommy! I am so sorry! Are you ok? Did I break your leg?"
I laughed uncontrollably through the pain, and re-fixed her hair. I explained that she was going to have to kick me a few more hundred times to actually cause a break.
I wish all of her tics were that funny. That leg jerk has caused her to trip, fall, kick people, kick walls... The people that are closest to her have learned to stay clear of her back side like they would stay clear of the back of a horse.
The specialist that we met with yesterday was amazing. He answered alot of questions, eased alot of fears, and most importantly, he talked with my very nervous little girl like they had been best friends her entire life. She doesn't like seeing new doctors. She becomes very stiff and quiet. Even getting her to talk louder than a whisper is a challenge.
At the end of the appointment, the doctor hugged her and said "Your life is going to be so much easier now that we have met."
I wanted to cry and BEG him to make that a promise.
He prescribed her a new medication to take in addition with what she is already taking for tics. He said that it would calm her down enough to be able to suppress the tics easier through out the day. It should also help with her panic attacks, and her obsessive need to rub and scratch her skin away.
I didn't give it to her this morning, though. I was suppose to, but I was so afraid that she would fall asleep in class or that she would have an allergic reaction and I wouldn't be there to help her. I have crazy anxiety of my own when it comes to her. Probably because we have been through so much already, I just want to protect her from anything else going wrong. So, she will start the new medicine on Saturday, when she will be with me all day and I will know if any side effects or allergic reactions occur.
She will see the specialist every 4 weeks. He will monitor the tics, make sure the medication is working, and make adjustments as needed. He will also teach her how to suppress her tics better when she is away from home. I think she already does that pretty well, but he says that he can show her a way to handle that so that it doesn't stress her out.
I pray that this doctor helps her. I am so ready to see her happy again. I miss her.
Tuesday, April 5, 2011
A new day, a new doctor...
She didn't go to school today.
Her little sister was sick and her daddy had to go to work early this morning. So instead of waking up the sick baby, I called my mother and asked if she would stop by and give her a ride to school.
My mother pulled up at 8:19 am- 4 minutes after the last bell at school rang, announcing tardiness. By the time Mom walked in our front door, my daughter was sobbing.
Being late, even 5 seconds late, causes her to panic.
I could have made her go to school anyway, which is what I am sure everyone reading this is thinking that I should have done.
She wouldn't have been able to breath by the time she had gotten to class if I had done that. She would have spent the first half of the day crying and jumping and jerking, and her teacher would have called me by lunch time.
So I just kept her home.
She counted her jumps, snapped her legs, and walked around the house for about 30 minutes or so, and then she was calm again.
Tomorrow she is seeing a pediatric TS specialist for the first time. It will be quite a change from her neurologist. I am not looking forward to the initial visit, re-explaining every symptom, watching as they observe her and ask her questions... But I am looking forward to talking to someone whose main focus is on her disorder.
I pray that this specialist can help her. I know that TS can not be cured, but it can be treated. She needs this doctor to understand what she goes through every day. She needs help with her tics, her panic attacks, and her night terrors.... And I need help, too. I need to know how I can help her.
Her little sister was sick and her daddy had to go to work early this morning. So instead of waking up the sick baby, I called my mother and asked if she would stop by and give her a ride to school.
My mother pulled up at 8:19 am- 4 minutes after the last bell at school rang, announcing tardiness. By the time Mom walked in our front door, my daughter was sobbing.
Being late, even 5 seconds late, causes her to panic.
I could have made her go to school anyway, which is what I am sure everyone reading this is thinking that I should have done.
She wouldn't have been able to breath by the time she had gotten to class if I had done that. She would have spent the first half of the day crying and jumping and jerking, and her teacher would have called me by lunch time.
So I just kept her home.
She counted her jumps, snapped her legs, and walked around the house for about 30 minutes or so, and then she was calm again.
Tomorrow she is seeing a pediatric TS specialist for the first time. It will be quite a change from her neurologist. I am not looking forward to the initial visit, re-explaining every symptom, watching as they observe her and ask her questions... But I am looking forward to talking to someone whose main focus is on her disorder.
I pray that this specialist can help her. I know that TS can not be cured, but it can be treated. She needs this doctor to understand what she goes through every day. She needs help with her tics, her panic attacks, and her night terrors.... And I need help, too. I need to know how I can help her.
Subscribe to:
Posts (Atom)