Her teacher called me this morning by 8:30 am. She was already hiccuping. I talked to her for a few minutes over the phone, and tried to calmly get her through them. I suggested substituting the hiccups for another tic, that wouldn't disrupt the class.
It did not work.
The teacher just called again.
My only option is to pick her up from school to keep her from disrupting the other students. I can not even describe the level of frustration that I have reached. I am crying now, waiting on her doctor to return my call. I am hoping that he has a miracle solution to her new tic, but I know that he doesn't.
She missed a total of 3 days of school last week, and it is looking like she is going to miss today as well. Those days in addition to previous missed days, puts her over the amount of days that is permitted by the school.
I do not want to home school her next year. I really don't. She has made friends this year, she loves her teacher and the activities. I can not justify sending her to such an expensive school, however, if she can not make it through the year.
I am lost and confused. I wish I knew what to do.
Monday, May 16, 2011
Sunday, May 15, 2011
Rough week.....
This absolutely has been one of the worst weeks we have had in a long time...
Monday morning, my daughter's substitute teacher called me. She had only been at school about 2 hours at that point. She said that my daughter had been complaining of a headache and was really dizzy. Before I could get to the school to pick her up, I received 2 more phone calls. She was so dizzy that she slipped in her desk and was extremely pale.
I knew when I saw her that something was wrong. All of the color was drained from her face, not even her lips were pink. She was walking in slow motion, almost as if she were asleep with her eyes open. I took her to the closest pharmacy so that they could take her blood pressure. One of the medications that controls her tics can also be taken for high blood pressure.
It was 70/48.
The pharmacist sent me to the Urgent Care center that was directly across the street. The nurse there took her blood pressure as well, and then called 911.
By the time the ambulance got onto the interstate heading towards the hospital, she was unconscious. The EMS lady got her to come to after only about a minute, but to me, it was a lifetime.
We spent the rest of the day at the hospital. They got her blood pressure back to normal, and explained that she had too much of that one medication in her system. Her neurologist called, and her dosage was cut in half to keep her blood pressure from being effected again.
She slept most of the next day. By late afternoon, she was bouncing off the walls with energy so I took her to cheer practice. What better way for her to burn off excessive energy than to take her to a gym full of other over-energetic cheerleaders?!
That didn't work out. She became way too stimulated and was doing all of her tics, in addition to outrageous things, like running head first into the padded wall, whistling, and grabbing her face and stretching it out. She drew way too much attention to herself, so I pulled her out, and made her sit for a few minutes. Practice was over shortly afterward, thank goodness, so I took her home.
When they cut her dosage in half to protect her blood pressure, none of us thought about what that meant for her tourette's.
She didn't get to sleep that night until almost 2 am, and woke up on her own before 7 am, WAY too excited about going back to school. I said a prayer for her teacher when she walked out the front door because I knew it was going to be quite a day for her.
That afternoon when I picked her up, the stories I heard from her teacher about her jumping up and down out of her desk, screaming at random moments throughout the day, and complete inattention to everything school related, did not shock me at all. I didn't call her doctor, though. Looking back, I definitely should have called that day. I guess I was hoping that she would adjust to the lowered dose, and calm down.
That night went about the same as the night before. She went to bed extremely late, got up extremely early, and was very energized when she left. Her teacher called before 9 am, to say that she hadn't completed her homework (which I already knew, because it was IMPOSSIBLE to get her to sit down to do it) and to say that she had the hiccups. At the time, it seemed silly to both of us that she was mentioning it, and she even said "It is just strange that she has been hiccuping for over an hour!" We laughed about it and ended the conversation. Within a half an hour she called me back, said that the hiccups were so close together that it seemed like it was getting hard for her to breathe, and that she was starting to panic a little bit. After listening to it myself over the phone, I went to pick her up. By the time I got there, she was on the floor, with her teacher and the principal standing over her. The hiccups got so close together that she couldn't breathe, and she completely hyperventilated.
Turns out, according to her doctor, the hiccups are a common tic for people with TS.
The hiccups stopped once she calmed down, but I took her home anyway. She spent the rest of the day walking around the house, opening and shutting every cabinet in sight, and doing EVERY SINGLE TIC THAT SHE HAS. It was absolutely the most exhausting day ever.
I took her to the doctor the very next day. He adjusted all of her medication, and said that by the end of the weekend, she should be back in order.
I had planned on spending the entire weekend staring at her and taking notes, as most paranoid mothers do to their children, but I came down with strep throat. The only thing I got to stare at was the couch and a bottle of Nyquil. My husband kept the girls out of the house most of the weekend, so I don't really know how she has adjusted to the change in medication. He says she is fine, but that is the same answer I would get from him if one of her arms were completely falling apart.
Hopefully tomorrow's school day will be a lot smoother, for the sake of my precious daughter, and for the sake of her simply amazing teacher.
I want more than anything for her to fit in. It breaks my heart that everything that went wrong this week, happened at school in front of all of her friends. Being different seems to be her biggest fear, and I must admit, it is mine as well. The thought of her being teased or made fun of, especially because of something that she can not help, absolutely kills me.
I just want for the doctor to find a medicine that will help her forever, a medicine that doesn't stop working because the disorder worsens over time.... or better yet- I want the cause of Tourette's Syndrome to be discovered, and a cure to be found.
Monday morning, my daughter's substitute teacher called me. She had only been at school about 2 hours at that point. She said that my daughter had been complaining of a headache and was really dizzy. Before I could get to the school to pick her up, I received 2 more phone calls. She was so dizzy that she slipped in her desk and was extremely pale.
I knew when I saw her that something was wrong. All of the color was drained from her face, not even her lips were pink. She was walking in slow motion, almost as if she were asleep with her eyes open. I took her to the closest pharmacy so that they could take her blood pressure. One of the medications that controls her tics can also be taken for high blood pressure.
It was 70/48.
The pharmacist sent me to the Urgent Care center that was directly across the street. The nurse there took her blood pressure as well, and then called 911.
By the time the ambulance got onto the interstate heading towards the hospital, she was unconscious. The EMS lady got her to come to after only about a minute, but to me, it was a lifetime.
We spent the rest of the day at the hospital. They got her blood pressure back to normal, and explained that she had too much of that one medication in her system. Her neurologist called, and her dosage was cut in half to keep her blood pressure from being effected again.
She slept most of the next day. By late afternoon, she was bouncing off the walls with energy so I took her to cheer practice. What better way for her to burn off excessive energy than to take her to a gym full of other over-energetic cheerleaders?!
That didn't work out. She became way too stimulated and was doing all of her tics, in addition to outrageous things, like running head first into the padded wall, whistling, and grabbing her face and stretching it out. She drew way too much attention to herself, so I pulled her out, and made her sit for a few minutes. Practice was over shortly afterward, thank goodness, so I took her home.
When they cut her dosage in half to protect her blood pressure, none of us thought about what that meant for her tourette's.
She didn't get to sleep that night until almost 2 am, and woke up on her own before 7 am, WAY too excited about going back to school. I said a prayer for her teacher when she walked out the front door because I knew it was going to be quite a day for her.
That afternoon when I picked her up, the stories I heard from her teacher about her jumping up and down out of her desk, screaming at random moments throughout the day, and complete inattention to everything school related, did not shock me at all. I didn't call her doctor, though. Looking back, I definitely should have called that day. I guess I was hoping that she would adjust to the lowered dose, and calm down.
That night went about the same as the night before. She went to bed extremely late, got up extremely early, and was very energized when she left. Her teacher called before 9 am, to say that she hadn't completed her homework (which I already knew, because it was IMPOSSIBLE to get her to sit down to do it) and to say that she had the hiccups. At the time, it seemed silly to both of us that she was mentioning it, and she even said "It is just strange that she has been hiccuping for over an hour!" We laughed about it and ended the conversation. Within a half an hour she called me back, said that the hiccups were so close together that it seemed like it was getting hard for her to breathe, and that she was starting to panic a little bit. After listening to it myself over the phone, I went to pick her up. By the time I got there, she was on the floor, with her teacher and the principal standing over her. The hiccups got so close together that she couldn't breathe, and she completely hyperventilated.
Turns out, according to her doctor, the hiccups are a common tic for people with TS.
The hiccups stopped once she calmed down, but I took her home anyway. She spent the rest of the day walking around the house, opening and shutting every cabinet in sight, and doing EVERY SINGLE TIC THAT SHE HAS. It was absolutely the most exhausting day ever.
I took her to the doctor the very next day. He adjusted all of her medication, and said that by the end of the weekend, she should be back in order.
I had planned on spending the entire weekend staring at her and taking notes, as most paranoid mothers do to their children, but I came down with strep throat. The only thing I got to stare at was the couch and a bottle of Nyquil. My husband kept the girls out of the house most of the weekend, so I don't really know how she has adjusted to the change in medication. He says she is fine, but that is the same answer I would get from him if one of her arms were completely falling apart.
Hopefully tomorrow's school day will be a lot smoother, for the sake of my precious daughter, and for the sake of her simply amazing teacher.
I want more than anything for her to fit in. It breaks my heart that everything that went wrong this week, happened at school in front of all of her friends. Being different seems to be her biggest fear, and I must admit, it is mine as well. The thought of her being teased or made fun of, especially because of something that she can not help, absolutely kills me.
I just want for the doctor to find a medicine that will help her forever, a medicine that doesn't stop working because the disorder worsens over time.... or better yet- I want the cause of Tourette's Syndrome to be discovered, and a cure to be found.
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