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. 

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.

Anxiety leads to lying

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


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


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


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


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

Clingy-ness, I love you, and I'm sorry

Monster Man has always been a bit clingy to me. The clingy-ness comes in spurts, getting progressively worse, then better, then worse again. He's always loved to be by my side when he isn't playing a video game, reading a book, or drawing. If I'm sitting by him when he's playing a video game, there are even times when he practically sits on top of me. We just figured he was a cuddly kind of boy, one who loved to hug and to spend time with me. There are times that the clinging seems to resemble separation anxiety, but we can usually work past it when it gets that bad. He also likes to say "I love you" a lot more than the other kids. Again, we just figured it was part of how loving he is. It never occurred to us that this isn't normal, that this might be part of something bigger.

I learned yesterday that this is actually part of his Tourette Syndrome. It seems to be more of the OCD side, if I'm reading right. It appears that many kids with TS seem to fear that something might happen to their parents, to the point that some call their parents, text them, etc multiple times a day just to say "I love you". Though he doesn't call me or text me, he does seem to feel the need to say it multiple times a day, even multiple times in an hour. He can be in one room and I'll be in another, and he'll yell "Mommy" from where he is. As soon as I ask what he needs, he'll just answer with "I love you." To me, there seems to be many worse problems to have than to have a child that loves you, but it does tend to be a problem when the clingy-ness gets to be a little disruptive to my classwork, his homework, and getting other things done.

Another part of his OCD and TS that I hadn't realized was part of the big picture was how often he apologizes. It broke my heart before to realize how much he was apologizing, since I thought that he must constantly think he is doing wrong. I thought that he might be a little depressed thinking that he was this person that needed to apologize for everything. He apologizes for every little thing sometimes, including apologizing for apologizing. Sometimes he apologizes for his "I love you"s because he thinks it's an inconvenience (I've told him that, while there are times that I need him to be quiet - like when I'm taking a test for school - I don't mind him saying "I love you", and that there is never a need to apologize for loving anyone). This need to apologize also seems to come in spurts, but I never realized that the need to apologize was part of his TS and OCD until I read about this yesterday, right along with the information on the clinging and the need to say "I love you".

I must say that I am a bit relieved to find out that his need to apologize is all part of what he is already dealing with. It is much easier to think about than the depression that I had previously thought might be to blame.

Obsessive Compulsive

From what I've been reading about Tourette Syndrome through both the TSA website and from the National Tourette Syndrome Association facebook page, I've discovered that Monster Man's anxiety issues aren't just anxiety. In fact, they are labeled as a form of OCD. With TS, people who have obsessive compulsive disorder tend to dwell on fear of disasters. It's more a fear of the uncontrollable, rather than a fear of what could happen if you don't do things a certain way (which is the more common form of OCD in patients without TS). This really explains a lot about his anxiety. I mentioned previously about his fear of a hurricane coming up the mountain and his fear about roller coasters coming off the tracks or displayed rockets falling over on top of him. From what I've been reading, this is actually more OCD than just general anxiety.

Monster Man's fears seem to be a big problem sometimes. They seemed to develop overnight, and they've really hit him hard. I was really worried at first that he was alone in these fears, and that something more was really wrong. It is a relief to me to know that this is just a part of his TS, and that so many others with TS are going through the same thing.