Camp Twitch and Shout - The Movie from Emmett Williams on Vimeo.
Monster Man has been telling me for quite some time now that there is a video available called 'Camp Twitch and Shout: The Movie'. He couldn't find it on YouTube, and he wasn't sure where to find it, but he knew that it existed. He has been wanting to see it ever since he first found out about it. This morning, I found the link to the video posted in a recent post on the Camp Twitch and Shout Facebook Page. The video, which is about 30 minutes long, is so much more than I expected it to be! I knew that it would explain about camp, and about how camp benefits the campers. What I didn't expect was that it would be an incredible source of information for educating others about Tourette Syndrome. Please watch the video and share it. Let's help spread awareness!Monday, March 25, 2013
Thursday, March 14, 2013
Not one, but two
I know I haven't posted here very much recently. There has been a lot going on that has kept me from posting, but I've also kind of avoided posting anything until I could give some information that I didn't want to post until I knew for sure.
I'm pretty sure that I've mentioned before that Tourette syndrome can be hereditary. While there are cases where it seems to come out of nowhere, more often than not there is usually someone in the family (somewhere along the lines) that has had TS or at least tics. It's also not uncommon to find out when one of your children has TS that a sibling has tics or TS.
That has ended up being the case in our home. Our seven-year-old son, Little Man, was diagnosed with Tourette Syndrome this morning. And so our journey begins of raising not one, but two children with TS.
I'm pretty sure that I've mentioned before that Tourette syndrome can be hereditary. While there are cases where it seems to come out of nowhere, more often than not there is usually someone in the family (somewhere along the lines) that has had TS or at least tics. It's also not uncommon to find out when one of your children has TS that a sibling has tics or TS.
That has ended up being the case in our home. Our seven-year-old son, Little Man, was diagnosed with Tourette Syndrome this morning. And so our journey begins of raising not one, but two children with TS.
Thursday, January 24, 2013
It's been a while
I know that it has been a while since I've updated here. The truth is, there hasn't been a whole lot to report. When it comes to a child with TS, that's definitely a good thing!
Monster Man started taking Clonidine over the summer. When he first started taking it, he had a few side effects that were a little bothersome. We almost took him off of it, but decided to give it a few more days since the side effects, while a little worrisome, only happened a couple of times. Sure enough, once his body adjusted to the medication, the side effects went away.
When we first put Monster Man on Clonidine, our biggest concern was the rage issues he was having. The neurologist told us that the Clonidine wouldn't help with the rage itself, but that it could possibly be improved by helping him control his tics. At the time, his rage had gotten so severe that he had gone from having a single rage episode, lasting about an hour, every few weeks - or even months - to having as many as 12 a week, lasting anywhere from 45 minutes to 2 hours.
Interestingly, the rage improved drastically, but the tics seemed to explode! In the six months that Monster Man has been on Clonidine, he's only had two rage episodes, and both were only about 30 minutes in length. And if he accidentally forgets to take his medicine (for example, if he spent the night at a friend's house and failed to take it), we can tell the next day because his behavior is so different. On the other hand, he went from ticcing only a few times each hour to ticcing almost non-stop! He suddenly had to have his fingers to his mouth constantly. If he wasn't chewing the skin around his fingernails (which I previously mentioned), he was twisting the tip of his tongue with the tips of his fingers. He also added a tic similar to blowing a raspberry, but it sounds similar to a horse (my hubby calls it the horse tic), which he had to do multiple times in an hour... Sometimes it seemed he'd only move his fingers from his mouth to do the horse tic before returning his fingers to his mouth once more.
He has learned to control his tics somewhat in certain situations. He doesn't seem to do the horse tic very often at church, and I've been told he rarely does it at school either, but he has to release it all when he gets home, sometimes blowing raspberries for two or three minutes straight. The fingers to the mouth thing, though, seems to be pretty much a constant. I've even seen him twisting his tongue on the ball field in between pitches while at bat! It can be really interesting at meals, when I've seen him pick up tiny pieces of food (sometimes even single grains of rice), roll them into even tinier pieces, and then roll the food along the tip of his tongue with his fingers, rather than twisting the tip of his tongue.
About two weeks ago, the doctor increased his dosage of Clonidine in hopes that it will help control the tics as well as it has been controlling the rage. So far, we've noticed a good improvement. His fingers aren't going to his mouth as often as they were, though he does still do this fairly often, and the horse tic doesn't seem to be present so much either. We're seeing a much happier Monster Man than we've seen in a very long time, though he still has his moments (but what twelve-year-old boy doesn't?). It's so nice to see him happy again!
Monster Man started taking Clonidine over the summer. When he first started taking it, he had a few side effects that were a little bothersome. We almost took him off of it, but decided to give it a few more days since the side effects, while a little worrisome, only happened a couple of times. Sure enough, once his body adjusted to the medication, the side effects went away.
When we first put Monster Man on Clonidine, our biggest concern was the rage issues he was having. The neurologist told us that the Clonidine wouldn't help with the rage itself, but that it could possibly be improved by helping him control his tics. At the time, his rage had gotten so severe that he had gone from having a single rage episode, lasting about an hour, every few weeks - or even months - to having as many as 12 a week, lasting anywhere from 45 minutes to 2 hours.
Interestingly, the rage improved drastically, but the tics seemed to explode! In the six months that Monster Man has been on Clonidine, he's only had two rage episodes, and both were only about 30 minutes in length. And if he accidentally forgets to take his medicine (for example, if he spent the night at a friend's house and failed to take it), we can tell the next day because his behavior is so different. On the other hand, he went from ticcing only a few times each hour to ticcing almost non-stop! He suddenly had to have his fingers to his mouth constantly. If he wasn't chewing the skin around his fingernails (which I previously mentioned), he was twisting the tip of his tongue with the tips of his fingers. He also added a tic similar to blowing a raspberry, but it sounds similar to a horse (my hubby calls it the horse tic), which he had to do multiple times in an hour... Sometimes it seemed he'd only move his fingers from his mouth to do the horse tic before returning his fingers to his mouth once more.
He has learned to control his tics somewhat in certain situations. He doesn't seem to do the horse tic very often at church, and I've been told he rarely does it at school either, but he has to release it all when he gets home, sometimes blowing raspberries for two or three minutes straight. The fingers to the mouth thing, though, seems to be pretty much a constant. I've even seen him twisting his tongue on the ball field in between pitches while at bat! It can be really interesting at meals, when I've seen him pick up tiny pieces of food (sometimes even single grains of rice), roll them into even tinier pieces, and then roll the food along the tip of his tongue with his fingers, rather than twisting the tip of his tongue.
About two weeks ago, the doctor increased his dosage of Clonidine in hopes that it will help control the tics as well as it has been controlling the rage. So far, we've noticed a good improvement. His fingers aren't going to his mouth as often as they were, though he does still do this fairly often, and the horse tic doesn't seem to be present so much either. We're seeing a much happier Monster Man than we've seen in a very long time, though he still has his moments (but what twelve-year-old boy doesn't?). It's so nice to see him happy again!
Wednesday, October 3, 2012
Family Camp Photos
I just realized that I never did update and tell everyone how Camp Twitch and Shout's family camp went. I apologize for not doing so sooner.
The month of September was crazy for us. Georgia Boy had a business trip to England, which left me home with Angel Baby, Monster Man, and Little Man for two weeks. Family camp happened to fall during the time that he was gone, so the kids and I went to camp without him. My mom was supposed to go with us, but she was unable to take the time off of work. It was a great experience for the kids and I to have this extra time alone, and it gave us a fun distraction from missing their Daddy.
The camp weekend was filled with activity! Dodgeball, kayaking, archery, wall climbing... There were so many great activities that we all got to enjoy.
Meal times were great, and they were often followed by dancing while the kids got to dress up in different costumes.
The kids were shocked that I was more than willing to dig for worms and even put them on the hooks when we went fishing.
What would a camp experience be without some s'mores?!
The group was smaller than usual, but we still had a blast. We're already looking forward to next year's family camp!
The month of September was crazy for us. Georgia Boy had a business trip to England, which left me home with Angel Baby, Monster Man, and Little Man for two weeks. Family camp happened to fall during the time that he was gone, so the kids and I went to camp without him. My mom was supposed to go with us, but she was unable to take the time off of work. It was a great experience for the kids and I to have this extra time alone, and it gave us a fun distraction from missing their Daddy.
The camp weekend was filled with activity! Dodgeball, kayaking, archery, wall climbing... There were so many great activities that we all got to enjoy.
Meal times were great, and they were often followed by dancing while the kids got to dress up in different costumes.
The kids were shocked that I was more than willing to dig for worms and even put them on the hooks when we went fishing.
What would a camp experience be without some s'mores?!
The group was smaller than usual, but we still had a blast. We're already looking forward to next year's family camp!
Tuesday, September 4, 2012
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.
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.
Thursday, August 9, 2012
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!
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!
Tuesday, August 7, 2012
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.
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