Frustrated....

A few weeks ago, she woke up popping her arm up and down pretty violently. Her shoulder was jerking up so hard that it was smacking her in the side of the face. After a few hours of this, I put her in the shower to see if the warm water would calm her..

I was standing directly next to the shower curtain when I heard her shoulder pop out of place.

We spent the rest of the day at the hospital. The doctor put her shoulder back into place, put her arm in a sling, and of course changed her meds because she thought that could be the reason her arm was so out of control.

And did I mention that this was the week before we were to leave for Allstar Nationals in Florida??

This week the effects from stopping that medication have kicked in full force. She has been crying A LOT. Crying uncontrollably because she "doesn't like the feelings that are inside" of her. I don't know what that means or how to help her.

Yesterday was so bad that I talked to her doctor several times throughout the day. She screamed and cried hysterically from the time that her eyes opened at 9 am, until she exhausted herself and fell asleep around 2 in the afternoon. She was crying again when she woke up. Admitting her was mentioned, but I really wanted to wait as long as possible before using that option. Instead, the medication that was stopped because of her arm, was restarted. Hopefully that will help start helping her soon.

I have never felt more alone in a situation than I do right now. No one outside of my house understands what my husband and I are going through, and no one could even come close to understanding what my daughter is going through. We don't know how to help her, we don't know how to help ourselves, and we don't know how to deal with the outside disbelief and lack of compassion.

I was able to leave my house with her one day this week. I haven't been able to talk on the phone with anyone other than her doctor because of the screaming in the background. My lack of communication with the outside world is not being handled well by my family and friends. Explaining would be useless, as I have tried. I do not get responses such as "Well, how is she doing?" or "Is she feeling any better today?" or even "What is being done to help her?"

It shocks me that the people that love my daughter seem more concerned with the fact that I haven't called than they do about how she is doing.

How do I make people understand that TS is more than just a few body jerks and squeaks? If that is all it was, I would count her the luckiest child in the world.

It's been a while....

I haven't written a post since May. It is now 2 weeks before Christmas, and I am at a loss as to where to begin. So many things have changed.

I guess I will start with the most obvious- Her tics and OCD are worse than they have ever been. Her behavior and sleep patterns are very unstable. She jumps up and down at least a thousand times every day, counts everything from how many times she jerks to the lines on the floor. She has one drawer in her entire dresser that she wants her clothes to be kept in- ALL of her clothes (panties, blue jeans, skirts, and socks all crammed into one drawer). She has a series of cartwheels, jumps, and blowing out her cheeks that she repeats every so often.

There is a window of about 2 hours every evening when her morning dose of medication is wearing off and it is still too early for her night dose. This time is always the hardest. I try to have her home at this time because I am never sure how she is going to handle it. I made the mistake of taking her in the grocery store at that time of the day not too long ago and we barely got through the first section before I had to take her out. She couldn't stop counting the lines on the floor and she didn't want them to touch her. That is a very hard thing to avoid, however, when her main tic is jumping. The jumping would make her land on the lines, which made her freak out and start counting how many times they touched her. That sort of thing can happen in any store or mall where there are lines on the floor, depending on the time of day.

School became too much to handle. She was having nights when she wouldn't even close her eyes until close to 5 am, so school the next morning would be out of the question. If I got her to bed at a decent hour, and the next morning got her ready on time, one thing would set off a whirlwind of tics and panic over the thought of tic-ing in front of the kids in her class, and she would miss that day as well. I pulled her out and started homeschooling about 2 months ago.

I have no idea how her teacher ever got through the day with her.

She can't sit still, never remembers the things that she learns unless it is presented in an extremely repetitive manner, she screams and hiccups during tests because she gets nervous, and if she's had a restless night, she will literally fall asleep in the middle of a sentence when I am looking directly at her.

The school district finally diagnosed her with having a learning disability a few weeks ago. Since then, she has been attending 3 hours of special education a week and I am overwhelmed with the support and extra help that we both get in every subject. (If anyone ever considers homeschooling, K12 is definitely the way to go!)

She cries a lot out of frustration. She tells me all of the time that she hates Tourettes Syndrome and she wishes that someone could take her brain out and giver her a "slower one". That is the best way that she can describe what she goes through everyday- she can't slow down.

Allstars continues to be her sanctuary. The constant movement and the specific routine of practice keeps her occupied. She says she doesn't even think about TS when she is at the gym because there is always something for her to do with her body. I can't even describe how thankful I am that she has that.

She started seeing a new doctor. There was an issue with her previous doctor not returning our phone calls a few months ago, and because of her pretty serious issues at night we can not afford to have a doctor that isn't dependable. This doctor has helped her night issues some. Unless her tics during the day are extremely bad, the new medication that she has been put on helps her fall asleep at night. That has been a huge relief. Sleep is so valuable when you have a child that needs your constant attention.

We have started going to the nursing home on Tuesday mornings. She sings to the residents and visits with them for a few hours every week. The very first time that I took her, I knew that we would be regulars. She seems to be at ease around the people that live there. She can spend the entire few hours that we are there talking to each one of them, hugging them, and singing about the Lord. We are going in the morning to sing Christmas carols.




The holidays are going to be busy and full of excitement, so I am sure that will only exasperate things. But as long as she holds on to her smile, I will be able to do the same. I know that her Christmas will be fantastic. Her daddy and I will make sure of it.

She deserves more than I would ever be able to do for her. She deserves a day that isn't completely ruined by a brain she can not control.

Frustration....

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.

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.

She's happy :)

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.

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.

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.