I have mentioned co-morbids several times in the past, and I thought it was time to explain more about what co-morbids are and how they affect those with Tourette Syndrome. Co-morbids are other medical conditions (neurological, psychological, or behavioral) that can appear alongside a main condition, such as Tourette Syndrome. You might see a person with TS state that they have TS+, a term used to generalize the diagnosis of TS with co-morbids. Knowing more about co-morbids can help us to gain a better understanding of how much those with TS struggle to overcome just to function on a daily basis.
There are several types of co-morbids that can exist for those with TS. Below are a few examples. Please keep in mind that there could be more conditions not described here.
Obsessive-Compulsive Disorder: Intrusive thoughts, ritualized behavior, OCD related anxiety
Anxiety Disorders: Generalized anxiety disorder, panic disorder, and other non-OCD related anxiety
Mood Disorders: Disorders such as bi-polar and depression
Attention Deficit Disorder: ADD or ADHD
Autism Spectrum Disorders: Asperger's and other forms of autism
Rage Attacks: These can also be known as 'meltdowns' or 'storms'
Sensory Disorders: Sensory Processing Disorder and Sensory Integration Disorder
P.A.N.D.A.S.: TS+ symptoms that can be related to infections such as strep
Sleep Disorders: For example, insomnia
Other Learning Disorders: Dyslexia, dysgraphia, discalculia, and more
Showing posts with label rage. Show all posts
Showing posts with label rage. Show all posts
Friday, May 31, 2013
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!
Friday, July 20, 2012
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.
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.
Wednesday, May 23, 2012
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.
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.
Tuesday, May 22, 2012
Comorbid Conditions & Tourette Syndrome
Today is day 8 of Tourette Syndrome Awareness Month, which (as I've stated in a previous post) runs from May 15 to June 15. I want to take the opportunity today to share a little about comorbid conditions. I've used the term many times in the past, yet I've still received a lot of question about the term "comorbid". It seems that what throws most people off is the word "morbid", which is most commonly thought of as "gruesome" or "unwholesomely gloomy". Dictionary.com gives four definitions for the word "morbid", including the two more common definitions I just mentioned. However, it can also mean "affected by, caused by, causting, or characteristic of disease" or "pertaining to diseased parts". In the case of co-morbid conditions, it would be more the "affected by,..." definition.
Comorbid condition of Tourette Syndrome can include Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), bipolar, depression, anxiety, and rage. They can also include learning disorders, such as dyslexia and dysgraphia. In many cases, these comorbid conditions are actually harder on the individual with TS than the actual tics are.
It is important to remember that these can appear together but do not always. Some people may have one or two comorbids with their TS, some may have none, some may have many. Like the difference in tics, it seems that you can have a room full of ticcers and not see a completely matching list of comorbids between two individuals. It is also important to realize that just because a child exhibits one of the comorbids, it doesn't mean that the child has Tourette Syndrome. A child with ADHD could just have ADHD. A child with OCD could just have OCD. These are all conditions that can occur on their own or along with other conditions.
Monday, May 7, 2012
I thought I'd shared this already
I thought that I'd shared this already, but just found this shown in my saved drafts. If this is a repeat, I apologize for the double post!
I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back. I've made a few changes, but it's mostly written as it was in the newsletter. This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.
I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back. I've made a few changes, but it's mostly written as it was in the newsletter. This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.
Monster Man was always so different from our other two kids, as well as from all my friends’ kids. When he was five weeks old, I woke up to find him blue. He’d developed what turned out to be the first of a series of respiratory infections. By the time that he was 18 months old, he’d spent a total of 15 months sick, with only a few good days in between the many bad ones.
Perhaps because of his lack of energy, he didn’t really hit his terrible twos like most kids do. He would have a few temper tantrums here and there, and he’d have his naughty moments, but his bad moments were few and far between. He spent so much time sick that he rarely had any energy, so we would rejoice at the moments when he would get into the usual toddler mischief, climbing on things, getting into things, and fighting with his big sister over favorite toys. The only times that really stuck out in our minds were the times when he’d get extremely upset and would gain a significant amount of strength – times when he’d flip the end tables, lamps and all, because something wasn’t going his way; when he had to have stitches and it took five adults to hold him down while the doctor stitched; when I wrestled with him in a parking lot for over 45 minutes, holding him tight to keep him from running in front of a car. Those bad moments didn’t happen often, but when he did have his moments he took them to the extreme. We didn’t realize at the time that he was having rage episodes, instead passing off the temper and the strength as being a combination of a temper tantrum and the steroids he was on to strengthen his weakened lungs.
For every bad moment, there have been at least a hundred more good moments, especially once Monster Man started feeling better and his lungs began strengthening. That was when his personality really started to blossom. The boy has been full of character from that moment on! He always keeps us rolling with laughter at his crazy antics, many which start with his incredible imagination. From the time he was about three years old until well after his fifth birthday, he believed that he was Santa Claus. He truly believed that he was the future Santa, “training” daily for the nights he would spend delivering presents. For two years, he walked around wearing a Santa hat (yes, even during the summer), which was often paired with a red sweat suit his Grammy had added white fur to. When he told me one year that all he wanted for Christmas was a sleigh and eight reindeer that could really fly, I was left looking for a present that wouldn’t disappoint him.
In the months preceding Monster Man’s diagnosis, I joined the National Tourette Syndrome Association Facebook page. It was there that I discovered that so many people with Tourette Syndrome exceed in some type of art. Some are writers, some are singers, some are dancers, some are painters or sculptors, some are photographers, and some work in art in ways I never thought of before. Just about all use their art as a form of therapy. I guess this would be where Monster Man’s overactive imagination comes in handy, especially when he’s drawing…
Friday, April 20, 2012
Made an Appointment... and more
I know it's been a while since I've posted here. The truth is, I didn't want to feel like I was complaining since the majority of the time lately we've been dealing with severe rage episodes. The rage has got to be the worst thing that any of us, including Monster Man, has been dealing with in our journey through life with Tourette Syndrome. I do want to take a few moments to catch you up on the positives, though, and to give you an update on how he's doing.
Last weekend, Monster Man took a trip with some friends from school to Tybee Island and Savannah for a competition with their school. I was very nervous about letting him go, especially since his rage has been so bad and I wouldn't be there to control him if he got upset. I talked with his teacher and with a father that was chaperoning, though, and they assured me that they would help make sure that his temper stayed in check. I gave him some of his medication before the car ride down, and he took more right before the competition, just to be safe. He did really well, and they didn't have a single problem with him during the trip. His team came in third place, so he was very excited about how well they did.
Softball season is back in full-force. This is Monster Man's last season on his division, and he'll be moving up to join Angel Baby on the next division in the fall. He is so excited to be back at the fields, where he can see many of the friends he has made over the past few seasons. Being a Christian softball league, the atmosphere at the ball fields is usually very positive, so it's a wonderful place to have all my kids, especially Monster Man, spend their time.
As I mentioned previously, his rage has gotten out of hand, and he's actually starting to become violent on top of saying horrible things, throwing things, attempting to break or actually breaking objects, and slamming doors so hard that they've come off their hinges. He's also been having issues with short-term memory again. He'll start saying something and stop mid-sentence, forgetting that he was even talking to begin with. We originally associated it with his head-shaking tic, since it was only around when his head-shaking tic was around, but he's been having short-term memory loss all week without the head-shaking tic being present. He seems to be developing more tics daily, and they haven't always gone over well at school (most of his teachers are starting to be understanding, but the school still hasn't gotten his IEP or 504 in place and many teachers don't want to acknowledge the TS without the IEP).
I finally broke down today and called the neurologist to make another appointment. I've been putting it off since we'd decided we wanted to try to avoid medication if possible. He's reached a point, though, that we've had to come to realize that he needs more help than we can give him on our own. His appointment isn't until June 25, but it's better than the original wait we had to see the neurologist the first time for the initial diagnosis. I'll be counting down the days!
Last weekend, Monster Man took a trip with some friends from school to Tybee Island and Savannah for a competition with their school. I was very nervous about letting him go, especially since his rage has been so bad and I wouldn't be there to control him if he got upset. I talked with his teacher and with a father that was chaperoning, though, and they assured me that they would help make sure that his temper stayed in check. I gave him some of his medication before the car ride down, and he took more right before the competition, just to be safe. He did really well, and they didn't have a single problem with him during the trip. His team came in third place, so he was very excited about how well they did.
Softball season is back in full-force. This is Monster Man's last season on his division, and he'll be moving up to join Angel Baby on the next division in the fall. He is so excited to be back at the fields, where he can see many of the friends he has made over the past few seasons. Being a Christian softball league, the atmosphere at the ball fields is usually very positive, so it's a wonderful place to have all my kids, especially Monster Man, spend their time.
As I mentioned previously, his rage has gotten out of hand, and he's actually starting to become violent on top of saying horrible things, throwing things, attempting to break or actually breaking objects, and slamming doors so hard that they've come off their hinges. He's also been having issues with short-term memory again. He'll start saying something and stop mid-sentence, forgetting that he was even talking to begin with. We originally associated it with his head-shaking tic, since it was only around when his head-shaking tic was around, but he's been having short-term memory loss all week without the head-shaking tic being present. He seems to be developing more tics daily, and they haven't always gone over well at school (most of his teachers are starting to be understanding, but the school still hasn't gotten his IEP or 504 in place and many teachers don't want to acknowledge the TS without the IEP).
I finally broke down today and called the neurologist to make another appointment. I've been putting it off since we'd decided we wanted to try to avoid medication if possible. He's reached a point, though, that we've had to come to realize that he needs more help than we can give him on our own. His appointment isn't until June 25, but it's better than the original wait we had to see the neurologist the first time for the initial diagnosis. I'll be counting down the days!
Wednesday, March 21, 2012
Gotta wonder
Knowing that Tourette Syndrome can be hereditary, it's hard to look at Angel Baby and Little Man without wondering if they, too, might have Tourette Syndrome like Monster Man does. What makes us wonder even more is the fact that we know that both Angel Baby and Little Man have issues that can be comorbid with Tourettes.
Angel Baby, like Monster Man, is starting to go through puberty - a time that can increase the symptoms of TS. While she has always had sensory issues (she and I both have a lot of problems with certain textures and sounds) and some problems with anxiety, we've started to realize that some of her other behaviors are actually tics. She has recently started chewing on the inside of her lip more often, too, and she recently sang in a school competition while chewing her lip throughout the entire song. She has always had a tendency to have temper tantrums, as well, and never outgrew it as she got older despite our best efforts to curve this behavior. Things we previously had related to other health issues she's experienced are now being looked at in a new light, and it's hard not to think that she could have TS like her brother.
Little Man is much younger (5 1/2 years younger than Monster Man), so we don't see a pattern of behaviors changing for him like they have with his brother and sister. We have, however, had to accept that he has OCD. We kind of joked around about it before, laughing at how picky he was about how the velcro on his shoes was lined up or commenting on the way that he'd sort his M&M's by color before eating them, even when he was too little to know his colors. Grocery shopping used to be a challenge if Little Man was with me; he'd straighten all the shelves within his reach while I was picking items off other shelves. A trashcan lid that was out of place or a bottle of ketchup not standing in the right direction in the refrigerator could lead to a major meltdown if he wasn't given the opportunity to correct the situation immediately. He's recently started having to have his shoes just perfect - not too loose, not too tight, and the velcro or shoelaces have to be done perfectly as well. Last week, he decided to wear sandals (with 3 velcro straps per shoe!) and he spent over 15 minutes getting his shoes to feel and look right before I finally convinced him to just get on with our day (to which he actually started crying because I wouldn't let him finish his task!). The only complaint his teacher has about him is that he can't seem to speed up his schoolwork because he takes so long trying to get each line of each letter perfect.
OCD, anxiety, tantrums that could equate to rage... They can all be comorbids to the tics of Tourette Syndrome. It's so hard not to wonder if we're seeing signs of things to come with our other two children.
Angel Baby, like Monster Man, is starting to go through puberty - a time that can increase the symptoms of TS. While she has always had sensory issues (she and I both have a lot of problems with certain textures and sounds) and some problems with anxiety, we've started to realize that some of her other behaviors are actually tics. She has recently started chewing on the inside of her lip more often, too, and she recently sang in a school competition while chewing her lip throughout the entire song. She has always had a tendency to have temper tantrums, as well, and never outgrew it as she got older despite our best efforts to curve this behavior. Things we previously had related to other health issues she's experienced are now being looked at in a new light, and it's hard not to think that she could have TS like her brother.
Little Man is much younger (5 1/2 years younger than Monster Man), so we don't see a pattern of behaviors changing for him like they have with his brother and sister. We have, however, had to accept that he has OCD. We kind of joked around about it before, laughing at how picky he was about how the velcro on his shoes was lined up or commenting on the way that he'd sort his M&M's by color before eating them, even when he was too little to know his colors. Grocery shopping used to be a challenge if Little Man was with me; he'd straighten all the shelves within his reach while I was picking items off other shelves. A trashcan lid that was out of place or a bottle of ketchup not standing in the right direction in the refrigerator could lead to a major meltdown if he wasn't given the opportunity to correct the situation immediately. He's recently started having to have his shoes just perfect - not too loose, not too tight, and the velcro or shoelaces have to be done perfectly as well. Last week, he decided to wear sandals (with 3 velcro straps per shoe!) and he spent over 15 minutes getting his shoes to feel and look right before I finally convinced him to just get on with our day (to which he actually started crying because I wouldn't let him finish his task!). The only complaint his teacher has about him is that he can't seem to speed up his schoolwork because he takes so long trying to get each line of each letter perfect.
OCD, anxiety, tantrums that could equate to rage... They can all be comorbids to the tics of Tourette Syndrome. It's so hard not to wonder if we're seeing signs of things to come with our other two children.
Monday, February 20, 2012
I came to an upsetting decision
I had to come to a decision over the weekend that has been kind of upsetting for me. I have tried, up until now, to keep Monster Man off any medications for his Tourettes. I know so many people have benefited from them, but the list of side effects and the whole process of finding which one will work best for my child just scares me. I've heard horror stories about what the wrong medications can do (making symptoms worse instead of better, making kids seem like zombies, extreme weight gain...) and I didn't want to see Monster Man possibly go through those experiences. I had debated at one time, trying to get him into a study before I'd heard these horror stories, and I felt like we'd dodged a bullet when the study didn't work out. It was so upsetting for me to realize that I cannot help my son without the help of these medications. I felt like I had failed my child, and it broke my heart to know that I couldn't help make him better on my own.
Friday, Monster Man had the worst rage episode he'd ever had. This time, he got violent with it. He'd never done more than an attempt to hit once or twice in his rage episodes previously, but this time he actually pinned down his little brother, grabbing his shoulders and shaking him until I pulled him off of Little Man. When Little Man ran to my room to hide, and Angel Baby stepped between the two boys in an attempt to protect the youngest, Monster Man knocked her down and starting squeezing her as hard as he could with his hands. I had to pull him off of her and have Angel Baby lock herself and Little Man in my room until I was able to get Monster Man calmed down. For nearly 45 minutes, I watched as my son struggled to get himself under control, an evil look crossing over his face. For nearly 45 minutes, I listened as my son yelled how much he hated us and how he felt like we hated him, too. When it was all over, Monster Man cried along with me, scared of his own actions. He wasn't even aware of everything that had transpired over the previous 45 minutes, and was terrified to learn that he'd tried to hurt his brother and sister. "What if I'd hurt them really bad?" he cried.
Listening to my son sob as he came to the realization that he'd said and done such horrible things, as he repeated over and over how much he truly loves his family, was enough for me to finally give in and make that decision to finally get him on the medication he needs to hopefully put him in more control of his emotions, where he can finally fend off these horrible rage episodes.
So now I've begun this new journey... one filled with researching for the best doctors, the best medicines, the best therapies... one that I hope will finally bring my son some peace.
Friday, Monster Man had the worst rage episode he'd ever had. This time, he got violent with it. He'd never done more than an attempt to hit once or twice in his rage episodes previously, but this time he actually pinned down his little brother, grabbing his shoulders and shaking him until I pulled him off of Little Man. When Little Man ran to my room to hide, and Angel Baby stepped between the two boys in an attempt to protect the youngest, Monster Man knocked her down and starting squeezing her as hard as he could with his hands. I had to pull him off of her and have Angel Baby lock herself and Little Man in my room until I was able to get Monster Man calmed down. For nearly 45 minutes, I watched as my son struggled to get himself under control, an evil look crossing over his face. For nearly 45 minutes, I listened as my son yelled how much he hated us and how he felt like we hated him, too. When it was all over, Monster Man cried along with me, scared of his own actions. He wasn't even aware of everything that had transpired over the previous 45 minutes, and was terrified to learn that he'd tried to hurt his brother and sister. "What if I'd hurt them really bad?" he cried.
Listening to my son sob as he came to the realization that he'd said and done such horrible things, as he repeated over and over how much he truly loves his family, was enough for me to finally give in and make that decision to finally get him on the medication he needs to hopefully put him in more control of his emotions, where he can finally fend off these horrible rage episodes.
So now I've begun this new journey... one filled with researching for the best doctors, the best medicines, the best therapies... one that I hope will finally bring my son some peace.
Saturday, January 7, 2012
My apologies
I know that I have kind of let this blog slip over the past few months, and I apologize for that. The truth is, I've kind of been afraid to write anything about how Monster Man has been doing. Just when I start to write that things are going really well for him, he has a turn-around, which then gets flipped back to the good side whenever I start to write about that. The roller-coaster we call life has had so many ups and downs lately, and I'm afraid if I get high enough on one hill to share the view, we'll go spiraling downhill faster than I can ever imagine.
School has been going pretty well for Monster Man. His grades had slipped a little at the beginning of the school year, but they've risen at a rather fast rate, and he's shown a significant amount of improvement. He had mostly B's and C's his first grading period, and he's now up to all A's and B's. He's starting to make a few new friends, and he's finally finding things that excite him about some of his classes. I am so proud of him for working so hard to succeed in school.
Our home life has been particularly challenging. Some days, we don't know what is typical preteen boy attitude and sibling rivalry, and what is his Tourettes and rage. Other days, it's very obvious that Tourette Syndrome is taking hold of my sweet boy and shaking him up. We'll go days - or even weeks - without a major episode of rage. Then everything that he must've been bottling up during that time just seems to explode from inside. Whenever possible, we try to let him stay in his room where he can release all the anger and frustration without having to worry about anyone getting in the path of his sometimes violent behavior. When his rage does reach that violent point, however, we're still relying heavily on the anti-histamine his doctor had previously prescribed for anxiety. The good news is that we seem to be having more good days then bad.
His tics have become a part of our daily life, with very short periods of off-time in the typical wax-wan pattern that is common with Tourette Syndrome. Thankfully, most of those are easy to live with for all of us, especially for Monster Man. Who cares if he's blinking a lot, clearing his throat, tapping his hands (a new tic), sniffling, or chewing his fingers (a tic we've been dealing with for several years without me realizing it was a tic)? We'll take those tics if it means having our sweet boy around!
School has been going pretty well for Monster Man. His grades had slipped a little at the beginning of the school year, but they've risen at a rather fast rate, and he's shown a significant amount of improvement. He had mostly B's and C's his first grading period, and he's now up to all A's and B's. He's starting to make a few new friends, and he's finally finding things that excite him about some of his classes. I am so proud of him for working so hard to succeed in school.
Our home life has been particularly challenging. Some days, we don't know what is typical preteen boy attitude and sibling rivalry, and what is his Tourettes and rage. Other days, it's very obvious that Tourette Syndrome is taking hold of my sweet boy and shaking him up. We'll go days - or even weeks - without a major episode of rage. Then everything that he must've been bottling up during that time just seems to explode from inside. Whenever possible, we try to let him stay in his room where he can release all the anger and frustration without having to worry about anyone getting in the path of his sometimes violent behavior. When his rage does reach that violent point, however, we're still relying heavily on the anti-histamine his doctor had previously prescribed for anxiety. The good news is that we seem to be having more good days then bad.
His tics have become a part of our daily life, with very short periods of off-time in the typical wax-wan pattern that is common with Tourette Syndrome. Thankfully, most of those are easy to live with for all of us, especially for Monster Man. Who cares if he's blinking a lot, clearing his throat, tapping his hands (a new tic), sniffling, or chewing his fingers (a tic we've been dealing with for several years without me realizing it was a tic)? We'll take those tics if it means having our sweet boy around!
Sunday, November 13, 2011
Church Retreat
I sent Monster Man and Angel Baby on a youth retreat with the church this weekend. While it normally wouldn't have been such a big deal, I was having a hard time deciding whether or not they should go this time. Their fighting has gotten pretty bad lately, which has really affected Monster Man's mood. He's been getting angry much quicker, which means that I've had to be on lookout for it to turn into full-blown rage. Thankfully, it hasn't gotten that far, and we've been able to avoid having to use his medicine, but I was still nervous about how he'd do without me there to watch for telltale signs. After all, I'm the one that usually gets to see him at his worse, so I know what to look for before it turns into something really bad.
Add to all the fact that we have a new youth minister, and you can see why I wasn't as sure about them going this time. I love the new youth minister and his wife, and I know they will be a positive influence in our church, but I am more than a little nervous about them seeing this whole other side of Monster Man... the side that people who don't know about his issues might see and think that he's a bratty, disruptive, or disrespectful kid. I have informed the new youth minister about Monster Man's TS, and about all that goes with it, but he had almost 40 kids with him that he were new to him, and I know that it could be hard to remember what I told him when he's trying to remember all the details about each and every one of the kids in the group. There were other chaperons on the trip, some that might be able to distinguish what is normal Monster Man behavior and what might be him getting into trouble, but I've still been nervous about not being there with him this weekend. Still, I've had to learn to put my faith in God and to trust that he'll be okay without me there to intervene.
I am looking forward to having both Monster Man and Angel Baby home tonight. I want to hear how everything went, to find out if they enjoyed their weekend away, and to find out what they learned.
Add to all the fact that we have a new youth minister, and you can see why I wasn't as sure about them going this time. I love the new youth minister and his wife, and I know they will be a positive influence in our church, but I am more than a little nervous about them seeing this whole other side of Monster Man... the side that people who don't know about his issues might see and think that he's a bratty, disruptive, or disrespectful kid. I have informed the new youth minister about Monster Man's TS, and about all that goes with it, but he had almost 40 kids with him that he were new to him, and I know that it could be hard to remember what I told him when he's trying to remember all the details about each and every one of the kids in the group. There were other chaperons on the trip, some that might be able to distinguish what is normal Monster Man behavior and what might be him getting into trouble, but I've still been nervous about not being there with him this weekend. Still, I've had to learn to put my faith in God and to trust that he'll be okay without me there to intervene.
I am looking forward to having both Monster Man and Angel Baby home tonight. I want to hear how everything went, to find out if they enjoyed their weekend away, and to find out what they learned.
Tuesday, June 28, 2011
Comfort Zone
I was talking to my aunt over the weekend, explaining some of the obstacles Monster Man faces after she'd asked about Tourette Syndrome, when my mom reminded me that I needed to explain to her about being Monster Man's "comfort zone". I realized then that I've talked a little about being his comfort zone, but I haven't really explained what I mean when I say that I am his comfort zone.
Those with Tourette Syndrome often try to suppress their tics, their rage, or their anxiety. Rather than letting others see their struggles, they hold them in as long as they can. After all, the public isn't always as accepting of their tendencies as they should be. As the tics and emotions are held inside, they build up more and more, just waiting to be released. Then, when the Touretter can't hold it in any longer or gets somewhere where he or she can release the tics or emotions without worrying about being judged, the bottled up tics and emotions come out ... and they come out much stronger and much more severe than they would've had they initially been released.
That safe place to release the tics and emotions - that place where the Touretter knows that he or she will not be judged by the tics, the rage, the anxiety, etc - is his or her "comfort zone". The comfort zone isn't just a place, however. It is often times a person or a group of people. In Monster Man's case, his comfort zone isn't at home; it is anywhere that I am. He knows that my love is unconditional, that I won't stop loving him when he lashes out at me or when he shakes his head so hard it makes him dizzy. He knows that, when he finally calms down (sometimes hours after his rage starts), I will always be there for a hug. He knows that, no matter how many times he tells me he hates me, I continue to love him and I know that he really does love me.
Sometimes, being the comfort zone is a hard job. It isn't easy to hear him call me names, to hear the hateful tone in his voice, and to have him blame me for all the struggles he is facing. It isn't easy to have him aim all that anger directly at me. But at the end of the day, when all is said and done, I know that he really does love me, and that he's only aiming his aggression at me because I am doing a good job of loving him and letting him know that he is loved. And I know that all those harsh words will eventually be followed by hugs, apologies, and a much happier, more loving Monster Man.
Those with Tourette Syndrome often try to suppress their tics, their rage, or their anxiety. Rather than letting others see their struggles, they hold them in as long as they can. After all, the public isn't always as accepting of their tendencies as they should be. As the tics and emotions are held inside, they build up more and more, just waiting to be released. Then, when the Touretter can't hold it in any longer or gets somewhere where he or she can release the tics or emotions without worrying about being judged, the bottled up tics and emotions come out ... and they come out much stronger and much more severe than they would've had they initially been released.
That safe place to release the tics and emotions - that place where the Touretter knows that he or she will not be judged by the tics, the rage, the anxiety, etc - is his or her "comfort zone". The comfort zone isn't just a place, however. It is often times a person or a group of people. In Monster Man's case, his comfort zone isn't at home; it is anywhere that I am. He knows that my love is unconditional, that I won't stop loving him when he lashes out at me or when he shakes his head so hard it makes him dizzy. He knows that, when he finally calms down (sometimes hours after his rage starts), I will always be there for a hug. He knows that, no matter how many times he tells me he hates me, I continue to love him and I know that he really does love me.
Sometimes, being the comfort zone is a hard job. It isn't easy to hear him call me names, to hear the hateful tone in his voice, and to have him blame me for all the struggles he is facing. It isn't easy to have him aim all that anger directly at me. But at the end of the day, when all is said and done, I know that he really does love me, and that he's only aiming his aggression at me because I am doing a good job of loving him and letting him know that he is loved. And I know that all those harsh words will eventually be followed by hugs, apologies, and a much happier, more loving Monster Man.
Thursday, June 16, 2011
The End of a Good Break
Monster Man has had such a good break from some of the worst problems he faces with Tourette Syndrome. After about five days in a row of panic attacks, which were also days filled with many episodes of rage, as well as about two weeks of a really bad head-shaking tic, he has managed to have almost a full week with no rage, no panic attacks, and very few mild tics.
Of course, Tourette Syndrome seems to like to throw us all for a loop. We had some storms come through last night that evidently brought back some of Monster Man's anxiety. He didn't come downstairs to let us know that he was scared, so he instead stayed in his room where he didn't sleep well last night. Of course, that has affected his attitude for today. We've already seen the start of what easily could've turned into episodes of rage had we not been able to get him calmed down before they worsened. To top it all off, the storms started while we were at church last night, with us driving home in the storm, which set off the head shaking tic and also brought back his 'painful tic'. As Monster Man's nerves were getting hit harder, his head was shaking faster, his eyes kept looking up in opposite directions, and he'd get that really wide smile. Between the eyes and the smile, he had quite a headache when we got home.
It is so sad to see him go through these sudden changes, when even Monster Man isn't sure what to expect with each passing moment. Sometimes, he asks me if he is 'losing it'. Other times, he asks me what is wrong with him and why he can't learn to control the tics, the anger, and the anxiety. I still don't have all the answers he needs, so all I can do is hug him and reassure him that everything will be okay.
Of course, Tourette Syndrome seems to like to throw us all for a loop. We had some storms come through last night that evidently brought back some of Monster Man's anxiety. He didn't come downstairs to let us know that he was scared, so he instead stayed in his room where he didn't sleep well last night. Of course, that has affected his attitude for today. We've already seen the start of what easily could've turned into episodes of rage had we not been able to get him calmed down before they worsened. To top it all off, the storms started while we were at church last night, with us driving home in the storm, which set off the head shaking tic and also brought back his 'painful tic'. As Monster Man's nerves were getting hit harder, his head was shaking faster, his eyes kept looking up in opposite directions, and he'd get that really wide smile. Between the eyes and the smile, he had quite a headache when we got home.
It is so sad to see him go through these sudden changes, when even Monster Man isn't sure what to expect with each passing moment. Sometimes, he asks me if he is 'losing it'. Other times, he asks me what is wrong with him and why he can't learn to control the tics, the anger, and the anxiety. I still don't have all the answers he needs, so all I can do is hug him and reassure him that everything will be okay.
Monday, May 30, 2011
The Need to Protect Him
There are times when I feel like there is such a strong need to protect Monster Man. It seems like there is always something, somewhere that he needs me to protect him from.
The outside world can be such a cruel place, especially with those who don't understand what he is going through. During the early stages of one of his rage episodes, I overheard someone who was witnessing it state that he was being a brat and that he needed disciplined. They had no idea what he and I were both dealing with at that particular moment, that his rage was not something that he could easily control, and that disciplining him in any way other than to remove him from the situation and give him time to 'cool down' would only have made the situation worse.
The cruelty of those that make remarks like that are not the only thing he needs protected from, though. He's recently started having a severe head-shaking tic. There are times when it is very mild, and there are other times when he shakes his head repeatedly to the point that he makes himself dizzy. As you can imagine, this means that certain situations are not the best to have him in while his tics are at their worst. We were at a cookout yesterday, and he was swinging rather high on a swing right near our picnic table. As he was swinging, he was shaking his head worse than he had all day. I had images in my head of him getting dizzy and falling from the swing. Later, we were swimming in the lake where we were having the cookout, and he was still shaking his head rather hard. I could tell by his expression that he was getting dizzy, but he was refusing to admit it because he didn't want me taking away the fun he was having with his friends in the water. He isn't a very strong swimmer, so I already didn't want him going anywhere where he couldn't touch the ground, and the head shaking made me even more determined to keep him in shallow water. He was heartbroken that I didn't trust him enough to let him go into deeper water, but I had that need to protect him.
The sad thing is that I know I will not always be there to protect him from things that some people might not see the danger in. I won't be there to keep him from going headfirst into deeper water, to keep him from getting in over his head in a situation that he might not be able to get himself out of. And I won't always be there to keep him from being subjected to the cruel comments and stares of people who don't understand the challenges he faces on a daily basis. I will eventually have to allow him to protect himself and to know how to handle these situations.
The outside world can be such a cruel place, especially with those who don't understand what he is going through. During the early stages of one of his rage episodes, I overheard someone who was witnessing it state that he was being a brat and that he needed disciplined. They had no idea what he and I were both dealing with at that particular moment, that his rage was not something that he could easily control, and that disciplining him in any way other than to remove him from the situation and give him time to 'cool down' would only have made the situation worse.
The cruelty of those that make remarks like that are not the only thing he needs protected from, though. He's recently started having a severe head-shaking tic. There are times when it is very mild, and there are other times when he shakes his head repeatedly to the point that he makes himself dizzy. As you can imagine, this means that certain situations are not the best to have him in while his tics are at their worst. We were at a cookout yesterday, and he was swinging rather high on a swing right near our picnic table. As he was swinging, he was shaking his head worse than he had all day. I had images in my head of him getting dizzy and falling from the swing. Later, we were swimming in the lake where we were having the cookout, and he was still shaking his head rather hard. I could tell by his expression that he was getting dizzy, but he was refusing to admit it because he didn't want me taking away the fun he was having with his friends in the water. He isn't a very strong swimmer, so I already didn't want him going anywhere where he couldn't touch the ground, and the head shaking made me even more determined to keep him in shallow water. He was heartbroken that I didn't trust him enough to let him go into deeper water, but I had that need to protect him.
The sad thing is that I know I will not always be there to protect him from things that some people might not see the danger in. I won't be there to keep him from going headfirst into deeper water, to keep him from getting in over his head in a situation that he might not be able to get himself out of. And I won't always be there to keep him from being subjected to the cruel comments and stares of people who don't understand the challenges he faces on a daily basis. I will eventually have to allow him to protect himself and to know how to handle these situations.
Friday, May 13, 2011
A mixture of emotions
The past couple of weeks have been pretty tough. Monster Man is alternating between episodes of rage and episodes of extreme clingy-ness. One minute, he's in full rage mode, yelling and throwing things over what seems to us as no big deal (like asking him to clean his room, help unload the dishwasher, or even brush his teeth). The next minute, he's practically attached to my hip, begging for forgiveness for having been in an episode of rage previously. No matter how many times I tell him that it's okay, that I understand he is having a hard time controlling his emotions, he still apologizes. And then he apologizes for apologizing. And sometimes he apologizes for apologizing for apologizing...
I'm beginning to think that he's living in a constant fear of hurting someone's feelings. While he's having an episode, he tells us how much he hates us and how much he thinks we hate him. He says things that he doesn't mean to say, throws things at us, even occasionally tries to hit us. He also tries hurting himself, smacking himself in the face most of the time, but he tried to slam an aluminum pot into his foot the other day and a few days prior had tried to jump over the railing to the stairs. It's so hard seeing him struggling like that and knowing that there is very little that I can do to make it all better with the exception of reassuring him and continuing to show him how much I love him.
The medicine that I've been giving him continues to help with the rage, though I'm trying to limit when I give it to him so that he doesn't build a resistance to it. I try to give it to him only before softball games or other times when I know he lets himself get worked up, or at times when he's already starting to show signs that his emotions are getting out of control and we have to go somewhere. If we're staying home, I try to just let him work through the emotions. If we don't have to be somewhere, then we stay home when he's having a bad day. It's hard on Angel Baby and Little Man to know that we are choosing to cancel outings that aren't needed when he's at his worst, but I can't take the risk of taking him out somewhere (especially when it is just me and the kids) and trying to keep him under control while keeping an eye on the other two as well. We're getting through this bit-by-bit, and I'm hopeful that we'll still be able to do a lot of the fun things we do together each summer.
In the midst of all of this, my husband and I are starting to worry that Little Man might be following in his brother's footsteps. While Little Man does not have any noticeable tics just yet, he has always had a bit of an OCD side to him (he has to have certain things placed in the perfect position or he'll do what he has to do to get it right). He doesn't have anxiety issues, but he is most definitely starting to show signs of having some rage issues. My husband and I see the changes in Little Man's temper and often question whether it is just a stage or if it is signs of things to come. I guess only time will tell.
I'm beginning to think that he's living in a constant fear of hurting someone's feelings. While he's having an episode, he tells us how much he hates us and how much he thinks we hate him. He says things that he doesn't mean to say, throws things at us, even occasionally tries to hit us. He also tries hurting himself, smacking himself in the face most of the time, but he tried to slam an aluminum pot into his foot the other day and a few days prior had tried to jump over the railing to the stairs. It's so hard seeing him struggling like that and knowing that there is very little that I can do to make it all better with the exception of reassuring him and continuing to show him how much I love him.
The medicine that I've been giving him continues to help with the rage, though I'm trying to limit when I give it to him so that he doesn't build a resistance to it. I try to give it to him only before softball games or other times when I know he lets himself get worked up, or at times when he's already starting to show signs that his emotions are getting out of control and we have to go somewhere. If we're staying home, I try to just let him work through the emotions. If we don't have to be somewhere, then we stay home when he's having a bad day. It's hard on Angel Baby and Little Man to know that we are choosing to cancel outings that aren't needed when he's at his worst, but I can't take the risk of taking him out somewhere (especially when it is just me and the kids) and trying to keep him under control while keeping an eye on the other two as well. We're getting through this bit-by-bit, and I'm hopeful that we'll still be able to do a lot of the fun things we do together each summer.
In the midst of all of this, my husband and I are starting to worry that Little Man might be following in his brother's footsteps. While Little Man does not have any noticeable tics just yet, he has always had a bit of an OCD side to him (he has to have certain things placed in the perfect position or he'll do what he has to do to get it right). He doesn't have anxiety issues, but he is most definitely starting to show signs of having some rage issues. My husband and I see the changes in Little Man's temper and often question whether it is just a stage or if it is signs of things to come. I guess only time will tell.
Monday, May 2, 2011
More control
We had another softball game on Saturday morning. The past few weeks at softball, as I've mentioned, had been filled with on-again/off-again episodes of rage. One of the big things we were dealing with as a result of the rage was that Monster Man didn't want anyone touching his softball equipment, nor did he want to share his treasured spot on the pitcher's mound. He skinned his knees up pretty badly early in the week last week and was still having problems walking as a result, so I'd been warning him for a few days that I was going to put him in the outfield so he didn't have to run as much. At first, he was okay with it, but as game day rolled around he let me know that he was not happy at all with this arrangement, and he kept begging me to put him in the pitcher's circle. He even went as far as refusing to get dressed Saturday morning until the very last possible second, when I threatened to take him in his pajamas (I've mentioned before that I am coaching, so I have to be at the fields). He was NOT playing if he couldn't be pitcher.
Once at the fields, he sat in a chair and pouted while watching Angel Baby's game. During that time, I decided to go ahead and give him another one of the anti-histamine pills that he'd had the previous weekend. I knew we had seen improvements at the last game thanks to the medication, and I thought it was best to give it another try. By the time we had to head to the field where his game was taking place, he was perfectly happy with me telling him that 'we'll see' about putting him in the pitcher's circle later in the game. He went into the outfield without a single complaint.
The biggest surprise of all came when he was in the batting circle, waiting for his turn to hit. The little girl that batted before him is one that he has been fighting the most with, possibly because she is the one with an attitude closest to what he's had recently, and the two seem to play off each other with their attitudes sometimes. She is the one person that he fights the hardest not to let her touch his softball equipment. So imagine everyone's surprise when, as she was selecting a different bat, he said "Do you want to use my bat?" and handed it to her! And he didn't throw a fit when I decided to keep him in the outfield for the entire game. Everyone was commenting on the difference in him by the end of the game - the parents, the assistant coach, even the other players.
The anti-histamine that he's started using when he needs help controlling his rage has been an amazing help. I am so relieved that I have found something to help him control himself when his emotions get the best of him.
Once at the fields, he sat in a chair and pouted while watching Angel Baby's game. During that time, I decided to go ahead and give him another one of the anti-histamine pills that he'd had the previous weekend. I knew we had seen improvements at the last game thanks to the medication, and I thought it was best to give it another try. By the time we had to head to the field where his game was taking place, he was perfectly happy with me telling him that 'we'll see' about putting him in the pitcher's circle later in the game. He went into the outfield without a single complaint.
The biggest surprise of all came when he was in the batting circle, waiting for his turn to hit. The little girl that batted before him is one that he has been fighting the most with, possibly because she is the one with an attitude closest to what he's had recently, and the two seem to play off each other with their attitudes sometimes. She is the one person that he fights the hardest not to let her touch his softball equipment. So imagine everyone's surprise when, as she was selecting a different bat, he said "Do you want to use my bat?" and handed it to her! And he didn't throw a fit when I decided to keep him in the outfield for the entire game. Everyone was commenting on the difference in him by the end of the game - the parents, the assistant coach, even the other players.
The anti-histamine that he's started using when he needs help controlling his rage has been an amazing help. I am so relieved that I have found something to help him control himself when his emotions get the best of him.
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.
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.
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.
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.
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.
Thursday, January 27, 2011
Rage
While laughter is the best medicine, I have a hard time finding the humor in the rage that Monster Man seems to experience quite often. He'll go through several great days, with little anxiety and very few tics. Then he gets hit with days where he seems angry at the world. He isn't feeling well today, which is adding to the anger.
Some days, his anger is aimed more at his brother and sister. Most days, though, it seems like his anger is aimed more at me. I've heard that because I am his "comfort zone" (the person he feels most comfortable around, who he can feel free to tic around and who he gets the most comfort from when he's experiencing anxiety), he feels more comfortable expressing his anger to me. Sometimes I wish that he wasn't so comfortable expressing that anger around me because the attitude always comes out that he can't stand me. Yes, he's even told me he hates me (which is completely unacceptable) during these times of rage. Hearing the tone of his voice, the yelling, the spite, and the choices of words while he's so angry is not just upsetting, it's hurtful.
After he calms down, he always apologizes and comes to me for hugs, and then he starts to get clingy and seems to have developed another stage of separation anxiety, and he's the complete opposite of the child he was only a few minutes earlier. It's amazing how fast his attitude shifts.
Some days, his anger is aimed more at his brother and sister. Most days, though, it seems like his anger is aimed more at me. I've heard that because I am his "comfort zone" (the person he feels most comfortable around, who he can feel free to tic around and who he gets the most comfort from when he's experiencing anxiety), he feels more comfortable expressing his anger to me. Sometimes I wish that he wasn't so comfortable expressing that anger around me because the attitude always comes out that he can't stand me. Yes, he's even told me he hates me (which is completely unacceptable) during these times of rage. Hearing the tone of his voice, the yelling, the spite, and the choices of words while he's so angry is not just upsetting, it's hurtful.
After he calms down, he always apologizes and comes to me for hugs, and then he starts to get clingy and seems to have developed another stage of separation anxiety, and he's the complete opposite of the child he was only a few minutes earlier. It's amazing how fast his attitude shifts.
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