Tuesday, April 26, 2011

A Little Control

After a rage-filled night at the ball park on Friday night, I was beginning to get a little desperate to help Monster Man find a way to control the rage.  Since I coach his team, I have to be at the ball fields for every game.  Since my hubby is working long hours, Monster Man has to be at the fields with me.  And since softball is one of the few things he looks forward to all week, Monster Man does not sit out at the games.  There is no leaving him home when he's had a bad day, no having him 'sit one out'.  I knew I had to find a way to help him have a calmer day at the ball park on Saturday.

I think I've mentioned before that the kids' current insurance will not cover anything for Tourette Syndrome.  I cannot get him the additional testing he needs for school, the therapy he needs to help him learn to control certain behaviors, or the medications he needs to help with the anxiety.  His pediatrician had previously prescribed something very mild that is similar to a stronger form of Benadryl.  In fact, Angel Baby has the same prescription for when she has allergic reactions.  In Monster Man's case, the medicine is supposed to be used to help mellow him out when his anxiety starts up.  We had never given it to him before because I'd never seemed to have it with me in cases when he ended up needing it, and I've had to talk him through controlling his breathing to help calm him down when I couldn't easily remove him from the situation.  I wasn't really sure how well the medication worked, but I decided that if it was supposed to help calm him down when the anxiety attacked, maybe it would help with the rage.

Before heading to the fields on Saturday morning, I gave him a dose of the medicine.  Within 30 minutes, he actually seemed happier than he had in days.  He was laughing and telling jokes with his sister, rather than yelling at her every time she even looked his direction (the way he had been for over a week).  When we first got to the fields, he wanted to love on me and kept giving me hugs rather than glaring at me and yelling over every little thing that didn't go his way.  During his game, he only had two minor setbacks, nothing compared to the experiences he'd had a week earlier.  He was able to calm down much quicker and to get back under control.  In fact, he told me that he felt more in control of his emotions than he had in a long time.

This particular medicine is not going to be a daily thing for him.  It is still going to just be used on days when he needs more help controlling his rage.  It now has a home in my purse, where I can easily find it and distribute it when he's starting to have a meltdown (hopefully before he goes in full rage mode).  It isn't a long-term solution, but I know it's there if we need it.  It's comforting to know that we have finally found something to help Monster Man for now.

Sunday, April 17, 2011

His Worst Day Yet

Yesterday was Monster Man's worst TS day so far.  We were at the softball fields all day, as we had three games to play between the kids.  By the time I took him to the house of a friend that was watching him for part of the afternoon, he'd had three rough episodes of rage, and he'd developed two new tics.  His painful tic was back in full-force, which I think added to the rage he was experiencing.  While on the field for his game, I noticed he'd started a new head-shaking tic.  He was shaking his head, very similar to shaking it no, very hard.  He did this multiple times throughout the day.  On the way to our friend's house, he told me that he'd started a tooth-grinding tic, as well.  He was grinding his teeth in a way that wasn't noisy, but it was with enough force that it was painful.

He did pretty well at our friend's house, though all three tics continued to be a problem until he went to bed.  After we picked the kids up, we went back to the ball fields to watch the adults play and to let the kids play on the playground.  He had one more episode of rage during that time, and then another when we got home and it was time for the kids to go to bed.

By the time that bedtime came around last night, we were all ready for him to get to bed.  He needed to rest his brain and the rest of us needed to get away from the rage.  I also needed to get a chance to get away from seeing him struggle so much.  It's so hard to see him going through all of this.

Thankfully, today has been better than yesterday.  He's still having the same tics, but he hasn't had any problems with rage today at all.

Thursday, April 14, 2011

Another Inspiring Artist

A couple of weeks ago, we were listening to our favorite radio station - 104.7 The Fish - out of Atlanta while we were driving to the ball fields.  We heard a new artist on the radio that my kids and I all truly enjoyed.  This young lady was the latest artist to be picked up on Toby Mac's record label, Gotee Records. My kids were especially excited to find out that this she was from Atlanta.  This new artist is 19-year-old Jamie-Grace.

My kids were excited to learn that someone that young could already be on the road to a successful singing career (something Angel Baby hopes to do one day), singing Christian music and sharing her gift with the world.  Two days after hearing the song 'Hold Me' for the first time, I found out something about Jamie-Grace that made her even more of an inspiration to our family.  Jamie-Grace has Tourette Syndrome.  Since her diagnosis at the age of 11, Jamie-Grace has been sharing her story and her faith with audiences around the United States.

Jamie-Grace joins the ranks of many others who have soared through the challenges of Tourette Syndrome, not allowing it to hold them back.  It is so important for those with TS to see others following their dreams and to realize that they can achieve their dreams if they just believe.

Please enjoy the video of Jamie-Grace's 'Hold Me'.

Wednesday, April 13, 2011

Rage - Looking Back

I often catch myself saying that Monster Man's symptoms appeared out of nowhere - that one day he was a normal, happy-go-lucky boy and then suddenly he was filled with tics, anxiety, etc.  Looking back, though, I realize that the rage started much earlier than his other symptoms did.

Somewhere between the ages of two and three, Monster Man developed a temper that went far beyond the terrible twos, no matter how much I tried to pass it off as just that.  I remember him being about two and a half and getting extremely upset about not getting his way.  He went to the end table by the coach and flipped the table over with one large yank on one of the legs.  The lamp, picture frames, etc that were on top of the end table went flying.

Another time, when he was almost three, he through a fit in a parking lot that resulted in me holding him tightly while sitting on a grassy median, trying desperately to get him to calm down.  I finally managed to get him inside the car, sitting in my lap until he calmed down (at which point I put him in his car seat so we could head home).  I didn't want him running in front of a car, something he'd almost done in the process of our struggles.  As I closed the car door, an off-duty police officer knocked on the car window asking if he could help me, stating he'd watched me struggling for over 45 minutes.  Just seeing the officer finally helped to calm him down, and we were able to get him in his car seat and ready to leave.

Still another time, a few months after his third birthday, I remember sitting with him in my lap, trying to get him to stay quiet at an event at his sister's school.  When I told him he needed to calm down, he suddenly got so angry that he turned around and tried to choke me.  It didn't take long for me to get him under control, but you could still see that look in his eyes that he gets to this day with his rage episodes.  Once he calmed down, he was back to snuggling with me and telling me how much he loves me.

It always amazes me that he can be so loving one minute and so angry the next.  He reminds me of Jekyll and Hyde, suddenly changing from good to bad and then back to good, usually without any warning.

Tuesday, April 12, 2011

Another sleepless night

Nothing gets Monster Man's anxiety acting up like knowing there is the possibility of severe weather heading our way.  Yesterday, we were told to expect severe storms overnight.  Our county was amongst the many included in a tornado watch effective until 3am today.  Usually, I try to keep Monster Man from finding out about these watches, not wanting to scare him.  Last night, though, he heard me talking to my hubby as I went through the process of setting our weather alert radio (which my hubby had previously packed away when trying to help clean up our room).

The process of setting the radio only took a few short minutes, and we didn't even think Monster Man had heard the conversation.  About five minutes after the radio was set, though, Monster Man started 'hearing' the storms (they hadn't even reached Georgia yet when he was already sure he heard the storms).  While my hubby was watching television, Monster Man was sure he heard the weather radio alerting us of a tornado.  He kept jumping out of bed, telling us that the bad weather was hear.

Oddly enough, it never even stormed at our house.  In fact, it barely even rained.  Either way, just knowing it could've happened was enough to keep Monster Man awake most of the night.

Wednesday, April 6, 2011

Wax and Wan

Just as is characteristic of the tics associated with Tourette Syndrome, Monster Man's painful tic has wanned for now.  Tics seem to go through a wax and wan cycle.  They come, they go.  Some reappear.  Some stay gone.  We are hoping that this is one that will not make a reappearance.

Monster Man has had a number of tics that have stayed gone for quite some time after they've disappeared.  Some of them have been gone for so long that we are hopeful that they are gone permanently.  These all tend to be the more complex ones, too, like the painful tic or the 'take three steps and kick myself in the back of the leg' tic.

In place of the painful tic, Monster Man seems to have developed a head shaking tic.  He doesn't shake it all the time.  Instead, it's a sudden big shake, similar to a female tossing her hair over her shoulders in beach scenes in movies.  It involves a good portion of his upper body, from about his chest up, twisting to the side as he shakes his head like this.  I have seen this one before, about three or four months ago, and it lasted about a week last time.  It will be interesting to see how long it will stick around this time.

Sunday, April 3, 2011

Painful tics

Today is the fourth day of Monster Man's newest tic - one that is actually physically causing him pain, but he can't control it.  He has started this new weird eye squinting thing.  Each time he does it, his eyes try to look in different directions.  It's like he's trying to look to the upper right and the upper left at the same time.  The first day and a half of it, he covered his face.  We were unable to see what he was doing.  Later that evening and most of yesterday, he started uncovering his face and I could see it was just the eyes.  Late last night, the tic progressed to include the majority of his face, opening his mouth in the really wide smile that almost seems to wide to be possible at the same time that his eyes are looking in two different directions like that.

It's so hard to know how much it is hurting my little boy.  I want nothing more than to see my son happy and healthy, and this latest tic has got to be his worst so far.  In fact, until this tic came along, he has always said that he likes his tics - that the tics make him special.  With this latest tic, though, he has started saying that he thinks that God is punishing him, that there must be something that he has done wrong, but he doesn't know what it is.  It breaks my heart to hear him saying things like that, and I am spending a good portion of my time reassuring him that he is not being punished. 

I am hoping that this tic will do like most of the others and that it won't be long before he's lost this tic and moved on to another one (less painful please!).