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.

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.

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.

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!).

Fish Oil

I think I've mentioned before that my hubby has epilepsy.  About six months ago, we got to noticing that he has had an improvement even in the number of little 'spasms' he has when he first wakes up, and that the improvements have seemed to have started since he began taking fish oil pills to help lower his cholesterol.  We thought it was a coincidence, but we kind of questioned whether or not it really could've played a role in his improvements.

While I was reading "Against Medical Advice", I happened to look at the back at the list of medications and vitamins that Cory Friedman had tried in an effort to improve his tics.  I notice that one of the items on the list was fish oil.  This really sparked my curiosity.  I mean, we'd already noticed that my hubby had improved.  Was it really possible that fish oil could improve the symptoms of neurological disorders?

I got to researching online, and it looks like it really is a possibility.  The DHA from the omega-3 fatty acids are linked both to brain and eye function.  I'd known that it was recommended for women to take during pregnancy to benefit the unborn baby, but I hadn't realized that adults could just as easily benefit from it.  From what I've read, it is possible that the DHA levels - required for brain and eye function - are lower in those with neurological disorders.  Since the levels are lower, and the small amount is being split between brain and eye function, there can symptoms such as the 'spasms' my hubby has been experiencing and the tics that Monster Man experiences on a daily basis.

I picked up a bottle of gummy vitamins today.  These are supposed to be mainly the omega-3 fatty acids from fish oil.  I'm going to have Monster Man start taking them every day to see if they help him like they have his dad.  Right now, anything that won't harm him is worth a shot.

Facing his biggest fear

Monster Man's biggest fear, especially since he's started having problems with anxiety, has been heights.  Going to a hockey game, he had to be calmed down and eased to our seats when he realized we were sitting higher up than he expected.  When we stopped to see Tallulah Gorge last fall (we stopped at a gift shop after a camping trip, and the gift shop had a viewing deck), he spent 45 minutes working himself up to the point that he could go to the railing of the viewing deck and look out at the gorge, though we had told him he could stay inside the gift shop with one of us while everyone else looked at the gorge - a stop that could've taken about 10 minutes.  Just knowing that he was visiting my mom in the mountains last summer (you can't even tell you're in the mountains where she is at), he was sure he was too high up and was going to fall off the mountain.  Like I said, heights terrify him.

The fact that he's so scare of heights is what makes his latest behavior so interesting.  I've heard from so many other parents of children with TS about this desire to do dangerous things.  In 'Against Medical Advice', Cory Friedman grabbed the steering wheel and pulled it in the opposite direction she was trying to turn.  Another time, he climbed as high up in a tree as he possibly could, almost falling on multiple occasions.  In Monster Man's case, he is trying to climb up different things to jump off of them!  At church, he gets on the outer edge of the porch, about six feet off the ground, and tries to jump off.  At the ball fields, I've caught him climbing up a wall that is approximately ten feet high, getting ready to jump off of that.  We stopped at a park this past Friday, and I caught him getting ready to jump off the playground equipment, right next to the top of the slide. I've been able to stop him in all these cases, before he could manage to get hurt in the process of his jumping. I can't imagine what he's doing when I'm not looking!

In Monster Man suddenly having this desire to face his biggest fear, and to overcome it by jumping off of high places, he has given me a new fear, one I'm half-expecting to become a reality at some point in the future.  I am scared that he will end up jumping off something one day, before anyone can stop him, and that I'll be getting a phone call to take him to the ER for a broken arm or leg.  Hopefully he'll get over this desire before he manages to hurt himself.

James Patterson's Against Medical Advice

I have recently started reading "Against Medical Advice" by James Patterson and Hal Friedman.  The story centers around Hal Friedman's son, Cory, and his struggles with Tourette Syndrome.  Cory's story began at a much younger age than Monster Man's, with his tics becoming noticeable shortly before his 5th birthday.  That led the family on a long journey, filled with many medications and even more struggles.

I'm not quite 100 pages in yet (I've only been reading it for two days), but I've already noticed so many parallels between Cory Friedman's experiences and the experiences Monster Man has had thus far.  The tics coming on suddenly.  The waxing and waning of the tics (getting better, worse, better, worse, and so on).  The constant repeating of the word "sorry".  Repeating what others say (Monster Man does this on rare occasion).  The anxiety that seems to increase the severity of the tics.  Even the need to laugh off some of the problems so he's laughing with the other kids instead of them laughing at him.   I've already found myself heartbroken at times just realizing what Monster Man is really going through.

I'm really enjoying reading this book.  It has given me so much insight into what my son, and others like him, experience on a daily basis.  I was told by many on the TSA Facebook page that it is a must-read, and I have to say that I agree with them!