Update on Family Camp

As you might have noticed, the widget on the side of the page ------->  has been changed to one specifically raising money for Camp Twitch and Shout.  This change has been made because we now have enough money for our family to attend Camp Twitch and Shout's family camp weekend.

We'd had a few unexpected expenses that took away the money we had saved for camp.  Georgia Boy has to travel for work soon, and he had some travel expenses that we're still waiting to be reimbursed for.  To top it off, he ended up needed both new tires on his car and a repair for a leak that made the car unsafe to drive.  It's amazing how fast something like that can hit and take away the money we'd saved up.

I originally started my fundraising specifically on GoFundMe.com.  I encountered a few problems with the links not wanting to post to that site, so I also added a wish on WishUponAHero.com to help bring in the money we needed.  We also had a garage sale to help earn what money we could to help pay for camp.  As of today, we officially have enough money to pay for family camp in full!

We do not like having to ask for help with things like this, so we have made the promise to ourselves that we will pay it forward by donating to Camp Twitch and Shout in hopes that it will help pay for another child to attend camp next summer.  To help with this, we've started a new fundraising page on GoFundMe that will allow us to take in extra donations specifically to help the camp.  When we're ready to send the funds to the camp, we can add our own to the total.

We are now looking forward both to attending family camp and to helping raise funds to help keep Camp Twitch and Shout affordable for families like ours.

A New Widget

I have added a new widget to the side of my blog.  It will be here for about the next month, when it will change to something a little different.   We're trying to save up for this year's family camp at Camp Twitch and Shout.  I don't usually like asking for help, but we've run across a slight (temporary) situation that is kind of freezing the money that we'd planned to use for family camp.  My husband is going to have to go out of town soon for work, and he's having to pay for his expenses and then be reimbursed.  This means that the money we'd planned for family camp is now going to have to be used to pay his expenses.  It was a hard decision for me, but I decided to give Gofundme.com a try.

The current widget is being used as a way to accept donations to help us with the cost of family camp.  Any help we can get with the cost of camp is very much appreciated.  Monster Man's birthday is next month, and I would love to be able to tell him for his birthday that family camp is paid for (whether by partial donations or not).  Even a small donation of around $5 will help make camp more affordable for this session.

I plan to pay the favor forward, giving money directly to the camp to help keep the costs down for next summer's campers, which brings me to the widget that I plan to replace the current widget with.  Once family camp is over, I am planning to replace the widget with another Gofundme.com widget, this time being one that will go to Camp Twitch and Shout to help other campers.

Please check out the new widget (and the one that will replace it) and, if you feel led to, please make a donation to help the camp.  Camp Twitch and Shout means so much to our family, and I am looking forward to doing my best to help the camp soon!

Dermatophagia and Trichophagia

 One of the things that Monster Man has been dealing with for a very long time (since well before his diagnosis) is biting his own fingers.  It started out with nail-biting and progressed into chewing on the skin around his nails. I cannot remember the last time that I actually had to clip Monster Man's fingernails because he's bit them down so short for so long.  

At first, we didn't realize that this was in any way, shape, or form related to Tourette Syndrome.  A few months after his diagnosis, I started noticing that other parents were talking about how they fight the chewing by using things such as chewelry (jewelry that can be chewed on).  With all the posts I was seeing online in the Tourettes groups that I am on, I came to realize that chewing of skin (whether it be on the fingers, the toes, or wherever), as well as the chewing of hair, is very common in the TS world.

I finally discovered today that there are actually names for the chewing of skin and hair.  Those that chew on their skin most likely suffer from dermatophagia, while those that chew on their hair most likely suffer from trichophagia.  Both conditions are not part of Tourette Syndrome itself, but are actually part of a TS comorbid... Obsessive Compulsive Disorder.  

In my reading on dermatophagia, I came to realize that it is something I've always struggled with myself.  I have always chewed the inside of my mouth, often leaving sores on the inside of my cheek and on the inside of my lip.  As a kid, I tried to control it either by chewing on pencils or chewing gum.  I ended up with TMJ in middle school, and I had to cut back on the gum chewing.  I've been chewing the inside of my mouth off and on ever since.

I still haven't found something to help Monster Man compensate for the need to chew his fingers.  We've tried multiple times, unsuccessfully, to at least limit how much he chews on his fingers. He often chews on them until they bleed or scab, and we're concerned about the possibility of infection if he doesn't start controlling how much he chews.  We're hoping something will come to us soon, but at least we know now what we're really dealing with. 

I don't see it...

There is one comment that seems to be heard by just about every single one of us that has a child with TS.  At some point or another, quite often within the first few months of diagnosis, it seems like we all hear the words "I don't see it".  While the words may be quite harmless, there are other times when the words can end up being more hurtful.  Often times, it seems those words come at a time when we need the support of our family and friends, and rather than getting that support, we instead hear them casting their doubt.

I think there are a number of factors that can come into play as to whether or not someone "sees it."  Those that only see the child once in a while may just be seeing him at times when tics are waning rather than waxing (at a calm time rather than a time when tics are more out of control).  Another factor can be whether or not the child is comfortable around the person that doesn't see it.  Oftentimes, the child will hold in the tics until they are more comfortable, leading to an overabundance of tics once the child is once again in his comfort zone.  There is also the possibility that those that see the child regularly aren't seeing the tics because they've come to be typical behavior for the child, leading to the tics going unnoticed.

Mothers, on the other hand, are often more tuned in to the things that affect our children.  We have a sense when something is wrong, when there is something more than just habitual behaviors going on.  We tend to have a better understanding that our children need our help to overcome the obstacles that they are facing ahead of them.  Just because you don't see it doesn't mean that we don't see it.  When we do come to that realization, when we accept that our children are different, we need the support of those around us.  We don't want to hear the doubts cast our way.  We don't want to have to explain what or why or how... We just want to know that we can turn to our friends and family for support.  Most importantly, we want to know that you accept our children for who they are, not for who you want them to be.

Adjustment Period

Monster Man has been going through a bit of an adjustment period.  About three weeks ago, he started taking Clonidine to help control some of his tics.  The hope is that by controlling the severity of his tics, we might be able to control some of the excess stress that builds up and leads to a rage episode, resulting in better control of his rage.  We were told that it would take over two weeks before we start seeing results.  So far, we're not sure if the results we're seeing are an improvement or not.  Some of his tics have seemed to decrease, but others seem to have increased.  He also seems a little more 'jumpy'.  His anxiety level is higher, but we're not sure if that is related to the Clonidine or not.

This past Saturday, we left for a camping trip to the mountains.  Sometimes, he seemed much better than he previously would have.  In the past, he's been very nervous going over the mountain roads, afraid he'd fall off.  He didn't seem to have those fears this time.  However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic.  He had gotten upset because he was ticcing a little and noticed someone was watching him.  The stress from being stared at caused him to start ticcing 100 times worse.  I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL).  A few minutes later, he was happily drawing again.  Seeing him struggle like that was so hard on both me and my husband.

We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening.  We're also keeping our eye out for signs of improvement.  We're really hoping that this medication will help improve Monster Man's symptoms.  He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.

No one "at fault"

I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month.  Life has gotten in the way, as it tends to do sometimes.  We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write.  I did want to take a little time to write about something that has been weighing on my mind, though.

Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome.  Sometimes, it can come on with strep infections, in which case it would likely be PANDAS.  In many cases, however, there is a genetic link.  Heredity does seem to play a role in many TS cases.  However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.

Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS.  This came after another relative started showing signs of having TS, as well.  The comment really grated on my nerves.

The truth is, no one is "at fault" for Tourette Syndrome.  There is no one to blame, and there should be no one to blame.  Sure, TS has its ups and downs; but doesn't most of life?!  While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift.  That's exactly how we choose to look at it.

Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known.  We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease".  We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases.  We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout.  We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.

Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS.  He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box.  He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation.  He wouldn't be the boy that taught us that being so different can be so much more fun.

We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise.  He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well).  We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!

The Last Day of School

Today is day 9 of Tourette Syndrome Awareness Month.  It also happens to be the last day of school for Monster Man, his siblings, and their classmates.  What does this mean for kids with TS?  As with any other kid, it means an incredible amount of excitement.  However, excitement (just like stress) can lead to an overabundance of tics.

The truth is, tics tend to increase in both number and severity during periods of high stress or excitement.  It's almost as if the ticcer's body doesn't know how to handle the extra stimuli, and thus goes into overdrive.  In Monster Man's case, he's been doing this half shoulder-shrug/half head-shake thing, which he only does during high excitement or high stress periods, and he's been doing this multiple times a minute.  Sometimes, he doesn't even notice he's doing it.  Other times, he's annoyed because he feels like he can't stop doing it.

Sadly, the high levels of stress and excitement can also lead to increased problems with other issues, like irritability that can lead to a rage episode.  When just the right trigger comes along, he can become like a stick of dynamite, exploding when the lit fuse finally reaches the stick.  As if he's suddenly been triggered, he just explodes, losing control of his emotions.

He was put to the test just a couple of days ago at school.  His teachers have all recently told me that they've never seen his lose his temper or get anywhere close to a rage episode, but they apparently spoke too soon.  With all the excitement of the end-of-the-year activities, he's been building up all the extra emotion inside him.  During field day, a classmate poured water over him, and he immediately responded by putting the kid in a headlock.  Thankfully the episode didn't go past there, as it very easily could have.  The teachers could have seen much worse had he not been able to regain his self-control as fast as he did.

It concerns me greatly to know that he did start to lose his temper at school, that a trigger set him off outside his usual comfort zone at home.  This only proves to me even more that I am doing the right thing in taking him back to the neurologist next month to see about getting him on a medication that can help him better control some of the issues he has.