Thursday, March 31, 2011

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.

Monday, March 28, 2011

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!

Tuesday, March 22, 2011

Some interesting occurrences

We've had a couple of interesting occurrences over the past few days that have really stuck out as being different, even when it comes to Monster Man.

One day last week, I took the kids to the grocery store with me to get a few items.  Not much, and I planned on being in and out of the store in about 10 minutes' time, if that long.  While walking down one aisle, I happened to notice that Monster Man kept drifting over to the right, along the shelves, so that he could rub his shoulder on the different items hanging down off the sides (like the packs of seasonings that are clipped on chains), as well as rubbing his shoulder on the coupon machines.  I wasn't sure what he was doing, so I pulled him away before he could 'bump into' the next one.  When he realized he'd missed one, he actually had to take a step back and make sure he bumped into it before he could continue down the aisle.  He progressed like this through the whole store, and I don't think he really even realized what he was doing.  He had that glazed over look to his eyes that he sometimes gets with his tics.  Sure enough, after talking to a few other parents of children with TS, this is something they have experienced!  Since that day, he's also done this walking along the plants in a home improvement store.  Needless to say, I'm not taking him down any aisles filled with glass objects for a while.

Yesterday, Monster Man came home from school slapping himself on the arms.  He kept complaining that it felt like someone was biting him on the arms (not the usually feeling of itchiness caused by a bug bite kind of biting, either).  He said he'd that feeling all day long, and it continued until he went to bed.  I am anxious to see if this has continued when he gets home from school.  Someone suggested to me that it could be a tic and that he's trying to explain why he is slapping himself.

Thursday, March 17, 2011

Trying to Reach a New Understanding

Tourette Syndrome is so often misunderstood.  When I first started telling family and friends that Monster Man most likely had Tourette Syndrome, the most common response I got was "He isn't going to start cussing is he?".  Sadly, this is one of the most misunderstood things about Tourette Syndrome.  The reality is that cussing, or coprolalia as it is officially called, is actually very rare.

Most people with Tourette Syndrome have similar tics to what Monster Man is experiencing - eye blinking, throat clearing, sniffing, and other similar movements.  Some are a little more complex, such as the times when Monster Man starts taking three steps and then kicking himself in the back of the leg.  There is such a variety of tics that are experienced, and they range in varying degrees.  Tourette Syndrome has many faces.

In recent weeks, there has been a little more awareness about Tourette Syndrome.  In fact, TS is making headlines thanks to American Idol finalist James Durbin.  James Durbin has both Tourette Syndrome and Asperger's (a form of autism).  His appearance on American Idol has been bringing about a new interest for many looking for find more information on both Tourette Syndrome and Asperger's.  James Durbin is helping Americans reach a new understanding.

I found a great news clip this morning from Atlanta's Fox 5 that talks more about James Durbin and gives a little more insight into life with TS.  Thank you to Fox 5 for helping spread the word!

Tuesday, March 15, 2011

Leg Pain

For many years now, Monster Man has been experiencing severe pain in his legs.  Sometimes the pain gets so bad that he doesn't even want to walk, and he just lays there, holding his legs and crying.  I always feel so bad for him, especially when it sneaks up at times when we don't have medicine on us.  I usually try to remember to keep ibuprofen with me for times like that, but there are occasions when I've taken it out for one reason or another, or I've run out and haven't had a chance to buy more, and he starts hurting when we're away from home.

We usually try to massage his legs when it starts up, hoping to offer him some relief.  Sometimes it requires an ice pack.  Sometimes we have to rub him down with Icy Hot to give him the relief he needs.  Almost always, the ibuprofen is a requirement in order for his legs to stop throbbing.  It is heartbreaking to see him in so much pain!

I've recently discovered that many people with Tourette Syndrome complain of leg pain like this.  From what I'm understanding, they have tics in their legs that are causing the pain to arise and to worsen.  I wish there was a way to train him to have a different tic at those times, like some people are able to do with other tics (screaming being replaced with whistling, cussing being replaced with similar but more acceptable words, etc).

Monday, March 14, 2011

Time Change Rage

We had been doing so well in recent weeks that I'd thought we might be over Monster Man's anger issues.  Sure, he'd had his share of being upset over the things most kids get upset about - sibling rivalry, not getting his way, etc - but he still seemed to have gotten rid of the anger that tends to build up and then come barreling out of him almost in a fit of rage.

He didn't feel really well all weekend.  For the most part, he was fine.  He'd get upset about something and then start laying around.  Whenever he'd start laying down, upset, he'd spike a fever and start complaining of a headache and stomachache.  My hubby used to do the same thing as a child, kind of as a stress reaction, and it didn't take us long to figure out that was what was going on with Monster Man this weekend.  Once he got up and got moving, especially once he found something fun to do, his fever would drop and he'd be back to normal.

Between this and the time change, it was not much of a surprise that Monster Man was in such a bad mood this morning.  He had napped quite a bit over the weekend when he wasn't feeling well, but he could not seem to get to sleep last night when he was sent to bed for the night.  This morning, he dragged to get around and then had to be rushed to get out of the door before the bus arrived to pick him up.

He seemed to get upset over everything this morning.  I told him to make sure he got his jacket, he yelled that he knew and then glared at me.  I told him that he needed to make sure he had his backpack, he yelled that he already had it.  At one point, he got mad and sat on the steps because I told him not to stand with the front door open (didn't want him letting out the dog).  Then he refused to talk to me except to yell at me even more.  I was proud of him, though, because I saw him pick something up to throw it, and then he caught himself and put it down before he could act on impulse.

Unless you've seen Monster Man at his worse, or unless you've lived with someone with the same anger issues as Monster Man, you might easily pass it off as just being typical moodiness in a boy his age.  However, those who have experienced what I have with Monster Man realize that there is quite a difference between the two.

I am hoping he will be back to my happy little boy once he gets home from school today.

Friday, March 11, 2011

He's a winner

Last night, Monster Man had his first ever science fair.  For his project, he made a couple of hovercrafts.  The first used a CD, a bottle cap (like the caps on a dish soap bottle), and a balloon.  The second used a paper plate instead of the CD.  He wanted to test which made the better hovercraft.  As he suspected, the CD worked much better.  It was a lot of fun putting the two on the floor and seeing how they traveled.  The CD glided almost three feet from it's starting point, while the plate only moved about an inch.

The experiment went really well, and he did a great job with the display.  When we went to the science fair last night, we got to see all the other science fair projects.  This was for the gifted program in his school, and there were science fair projects from second grade, third grade, fourth grade, and fifth grade.  There were so many great experiments, and it was fun checking out all the displays.

The best moment for Monster Man, though, came when he was awarded second place for the fifth grade level.  I am one proud mom.  He did so well!

Tuesday, March 8, 2011

Changing my own focus

One of the mothers on the National Tourette Syndrome Association's Facebook page posted a link last night to a blog post she had written on Giving up vs. Letting up.  She originally wrote the article almost a year ago, but I think she shared it with us at the perfect time.

Lately, I've had a lot of concern over about Monster Man and the issues he has had alongside the Tourette Syndrome.  Most of the time, we don't notice his tics anymore.  However, we can't help but notice his anxiety, the recent problems with lying, and the fact that he's been so easily distracted the past few days.  It's hard not to notice the anger he has been quick to express on more than one occasion.  Some days, it has seemed like my little boy has been slipping away from me, and it's been easy to want to search for any possible way to bring him back to me.

I've mentioned before that Monster Man has told me that he doesn't want any medication to take away his TS.  Instead, he's told me that God gave him TS to make him special.  He likes his tics because they are part of what makes him who he is.

The article reminded me that the TS is just a part of who Monster Man is.  He is so much more first.  I just have to stay focused on the comic, the artist, the softball player, the wanna be Nascar driver, the hockey fan, the intelligent student, ...

Sunday, March 6, 2011

Anxiety + Ice Hockey = Calmness?!

My mom pointed out to me something last night that I hadn't really taken notice of before.  With all of Monster Man's issues with anxiety and nervousness, she said, you would think that all of the action of ice hockey would make him one very nervous little boy.  I could see what she means - the puck is always flying from one side of the arena to the other, sometimes flying over the glass; the sport is very fast-paced, which can be hard to keep up with and can be very intense in itself; the players get into fights, oftentimes ramming other players against the glass.  It really is an exciting, very active sport.  It made her wonder how Monster Man can sit and watch the games without his anxiety getting the best of him.

It took me a moment to realize that ice hockey has the opposite effect on him.  With all the games we've gone to, he's rarely expressed concern over anything other than the time we sat higher up than he was comfortable with.  In fact, ice hockey seems to have a calming effect on him.  It's my guess that all the action gives him something to place  his focus on, something that serves as a distraction from the things that seem to bother him the most.  He does tic quite often during hockey games, and there are times when it seems like the severity of the tics seems to coincide with the intensity of the game, but his fears seem to melt away completely during game time.

He recently asked me if I could find him a little league hockey team to play on.  We're going to be busy with softball until the end of May, but I think that I might have to give in and either get him on a league or at least get him a few lessons so that we can see where it goes from there.  As much as the thought of him out there in the middle of the action worries me, I still think it might be good for him.

Friday, March 4, 2011

Anxiety leads to lying

Wednesday was Angel Baby's birthday.  While I was out running errands that day, I stopped at McDonald's and bought myself a Happy meal for lunch.  I threw the toy in Angel Baby's seat, knowing she'd find it when we left for church that evening.  Instead, Monster Man was the first to enter the van.  He gave Angel Baby the toy, insisting that he'd found it at school and had brought it home to give to her as a present.  Since I didn't want to encourage any lying, I told him that he knew that wasn't the truth and that I knew where it had come from.  Even as I explained what the toy was and where it had come from, he kept insisting that he was telling the truth.  He started crying, saying that no one ever believes him anymore and that it's almost like we don't love him anymore.  How are we supposed to believe the things that we know for certain are lies?

It took almost 10 minutes for him to finally calm down and to admit that he'd found the toy in the car.  Since he and Angel Baby had been arguing earlier, he explained that he'd given it to and come up with the story in hopes that it would make her like him again.  

It was kind of scary, though, when it first happened.  He didn't show his usual signs that he was lying.  He looked me straight in the eyes and didn't even blink, rather than looking away and getting tears in his eyes (the tears came afterward).  It was almost like he'd begun to believe his story as he was telling it.  No matter how much I tried to calm him down, he just became more and more agitated that I didn't believe his story.

When I got home that evening, I immediately got online to ask the members of the National Tourette Syndrome Association's Facebook Page if they'd had any experience with anything like this.  Many reported both lying and stealing being part of their compulsive side of their anxiety/OCD.  One said that her child would lie like that in her continued efforts to be a people-pleaser.  Again, it was related to the anxiety.  Monster Man has always been the people-pleaser type, too, so I wouldn't be surprised if his lying stemmed from similar anxiety.  

The members of the group gave me some great advice on handling it, recommending that I talk to him individually about it (rather than in front of even his siblings) so that he wouldn't get embarrassed.  The embarrassment tends to make the anxiety and the situation as a whole a lot worse.  Next time, I'll be better prepared.  

God's Special Angels

I remember talking to one of my friends many years ago, back when Monster Man was a toddler and had not yet started showing signs of having Tourette Syndrome.  My friend's son has Down Syndrome, and she was telling me how some people asked her what had happened to him - if she'd done anything wrong to have a 'child like him'.  I remember telling her that God had chosen her to raise her son because He knew she was the perfect person to take care of His special angel.  

When Monster Man started having tics, and then when he added the anxiety to the mix, she turned those words right around on me.  It's true.  God only gives the job of raising His special angels to those He knows can handle it.  There might be times that seem tougher than others, but there are so many blessings to go right along with it, and we can rest assured that God is holding us in his arms and carrying us through those tougher times.

No, the challenges of raising a child with Tourette Syndrome are not the same as the challenges of raising a child with Down Syndrome, but they are both very challenging experiences.  It is comforting to know that God is in control and that He will not give us more than we can handle.

Wednesday, March 2, 2011

Anxiety strikes again

As storms made their way through Georgia on Monday night, we found ourselves under a severe thunderstorm warning and a tornado watch.  Some areas around us got hit really hard by nasty storms that caused damage to cars, homes, etc.  Some areas were pummeled by golf ball sized hail.  Just knowing that there were storms nearby was enough to get Monster Man's anxiety working in overdrive.

Monster Man was in his room, drawing cartoons, when the first few flashes of lightning and rolls of thunder reached our area.  Evidently, even with the storm still in the distance, it was enough to make him look out his window 'just to check' because he heard a noise.  That was when he became certain that he had seen a funnel cloud swirling around in the sky across the street.  The poor boy came running down the stairs to warn me, afraid that we needed to find shelter.  I opened the front door to look outside, hoping to calm him down by showing him that there was no funnel cloud.  He was so worried about me opening the door that I had to reassure him that it was safe before he'd even let me unlock the deadbolt to open the door.

Of course, the storm was in the distance as I'd mentioned before.  We had no hail.  The wind had only picked up a very little bit, to the point that you had to really look to notice the difference.  The storm never got any closer to our house than that, either.  It was probably a few miles from us at it's closest point.  Still, just knowing that the storm was out there somewhere was enough to have Monster Man in panic mode.  Even after the storms died down, it was another hour before he was finally calm enough to be able to get ready for bed.

It must be hard on Monster Man, having to fight off so many fears like that.  He told me that he thinks his anxiety has him seeing and hearing things that aren't really there.  I love that he has a very active imagination the rest of the time, but I feel so bad for him knowing that the active imagination gets in the way of his happiness at times like this.