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Old 01-30-2011, 06:52 PM #1
SeekingMom SeekingMom is offline
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Confused Confused and Concerned - New Tourette's Diagnosis

My 12 year old son was diagnosed with Tourette's 3 days ago, and I have a lot of questions. This may get a little long, so I apologize in advance, but I feel that it is important to understand the whole picture when asking for and giving advice.

He has always had a bad temper, but about 6 months ago I noticed that things had been getting a lot worse. 3 months ago he tried to attack my older son with a kitchen chair, pretty much without provocation. This prompted me to seek counseling with one of the local community mental health organizations.

I'm also a few months away from graduating with my Associate's Degree in nursing. When studying psychological nursing last semester I was first exposed to what ADHD is and isn't, which happened to come up in class shortly after he had started the therapy. I had a lot of preconceived notions about the disease, and few of them were positive. After learning the DSM-IV criteria I realized that my son fit the diagnosis. There was another near-violent incident between him and my older son, so this made me much more open to the possibility of a med evaluation. I scheduled an appointment with the psychiatrist affiliated with the community organization.

After a 2 month wait, we finally had our appointment with the psychiatrist Thursday evening. We sat in his office and he introduced himself and asked a couple of general questions. Then he blurted out "Well, you have not been here for 5 minutes, yet I can tell you exactly what is wrong with your son. He has Tourette's syndrome." This totally floored me. I didn't know much about the disease, and was shocked that he would/could give a diagnosis so quickly without really gathering any information. He was basing it entirely on my son't facial twitches, which I have just ignored as mildly distracting for some time. I took him to the eye doctor's a month or so ago for excessive blinking, and he just blamed it on dry eyes. My main concern has been the violent mood swings and other symptoms of the ADHD. He continued to ask us questions for 20 minutes or so and then told us that he was going to give my son a script for tofranil and clonidine. He said that the only side effects might be dry mouth and constipation.

When I got home I decided to do some research. Because I am in college it is easy for me to locate journal articles, and almost 2nd nature to research that way. I was familiar with the clonidine because it is commonly prescribed in adults for blood pressure, but I was unfamiliar with the tofranil. When I realized that it was a tricyclic antidepressant, warning bells began going off in my mind. The extrapyramidal side effects scare the snot out of me.

I have also noticed that my son exhibits a lot of the behaviors of hoarding, which I know is closely related to OCD. I'm just really upset because I don't think that the doctor did a thorough enough evaluation to write a script for such a potentially dangerous drug when there seems to be much safer alternatives out there.

So, I decided to hold off on filling his script, and plan on calling the doc tomorrow with my questions. The tics that my son has are what I would consider more of a minor to moderate annoyance, but the emotional issues are more of a priority. He mainly just blinks and occasionally twitches he cheeks. I haven't noticed any vocal tics at all, but both of my boys said that he does clear his throat a lot. (I asked if either of them had noticed him making random noises for no real reason) And he said that sometimes he clears it because it feels dry, and sometime he just does it because he can. The research I've seen seems evenly divided about whether stimulants will make the tics worse, stay the same, or go away altogether. I saw no current documentation of tofranil being a first-line treatment for Torret's which is another concern. So, here are my questions:

1) Am I overreacting about the tofranil?

2) Has anyone used Strattera successfully with Tourettes?

3) Has anyone successfully used stimulants without the tics getting worse?

I have explored the TSA homepage and found that very helpful. I would greatly appreciate any input and opinions. I just want my son to be happier and help him through the social issues that he has been experiencing. He does well in school, and has never been a discipline problem. He just has problems focusing on the task at hand and relating to others. When he loses his temper, he says that he feels like he is totally separated from himself and cannot control what he's doing. He's a beautiful little boy but very confused and scared by all of the things he has going on in his mind. I'm beside myself with worry and don't want to do something to him that can have life-long negative consequences.
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Old 02-01-2011, 11:22 PM #2
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SeekingMom,

If I were you, I would get a second opinion. It is plausible that he has Tourettes, but given that he doesn't have vocal tics other than clearing his throat, and given that he has a lot of other symptoms that are not directly caused by TS (but granted could certainly be related to it), I think the doctor might have been rather hasty in his diagnosis. It's plausible that his diagnosis was correct, but another doctor might have a different take on it.

I hope this helps.

Adam

Quote:
Originally Posted by SeekingMom View Post
My 12 year old son was diagnosed with Tourette's 3 days ago, and I have a lot of questions. This may get a little long, so I apologize in advance, but I feel that it is important to understand the whole picture when asking for and giving advice.

He has always had a bad temper, but about 6 months ago I noticed that things had been getting a lot worse. 3 months ago he tried to attack my older son with a kitchen chair, pretty much without provocation. This prompted me to seek counseling with one of the local community mental health organizations.

I'm also a few months away from graduating with my Associate's Degree in nursing. When studying psychological nursing last semester I was first exposed to what ADHD is and isn't, which happened to come up in class shortly after he had started the therapy. I had a lot of preconceived notions about the disease, and few of them were positive. After learning the DSM-IV criteria I realized that my son fit the diagnosis. There was another near-violent incident between him and my older son, so this made me much more open to the possibility of a med evaluation. I scheduled an appointment with the psychiatrist affiliated with the community organization.

After a 2 month wait, we finally had our appointment with the psychiatrist Thursday evening. We sat in his office and he introduced himself and asked a couple of general questions. Then he blurted out "Well, you have not been here for 5 minutes, yet I can tell you exactly what is wrong with your son. He has Tourette's syndrome." This totally floored me. I didn't know much about the disease, and was shocked that he would/could give a diagnosis so quickly without really gathering any information. He was basing it entirely on my son't facial twitches, which I have just ignored as mildly distracting for some time. I took him to the eye doctor's a month or so ago for excessive blinking, and he just blamed it on dry eyes. My main concern has been the violent mood swings and other symptoms of the ADHD. He continued to ask us questions for 20 minutes or so and then told us that he was going to give my son a script for tofranil and clonidine. He said that the only side effects might be dry mouth and constipation.

When I got home I decided to do some research. Because I am in college it is easy for me to locate journal articles, and almost 2nd nature to research that way. I was familiar with the clonidine because it is commonly prescribed in adults for blood pressure, but I was unfamiliar with the tofranil. When I realized that it was a tricyclic antidepressant, warning bells began going off in my mind. The extrapyramidal side effects scare the snot out of me.

I have also noticed that my son exhibits a lot of the behaviors of hoarding, which I know is closely related to OCD. I'm just really upset because I don't think that the doctor did a thorough enough evaluation to write a script for such a potentially dangerous drug when there seems to be much safer alternatives out there.

So, I decided to hold off on filling his script, and plan on calling the doc tomorrow with my questions. The tics that my son has are what I would consider more of a minor to moderate annoyance, but the emotional issues are more of a priority. He mainly just blinks and occasionally twitches he cheeks. I haven't noticed any vocal tics at all, but both of my boys said that he does clear his throat a lot. (I asked if either of them had noticed him making random noises for no real reason) And he said that sometimes he clears it because it feels dry, and sometime he just does it because he can. The research I've seen seems evenly divided about whether stimulants will make the tics worse, stay the same, or go away altogether. I saw no current documentation of tofranil being a first-line treatment for Torret's which is another concern. So, here are my questions:

1) Am I overreacting about the tofranil?

2) Has anyone used Strattera successfully with Tourettes?

3) Has anyone successfully used stimulants without the tics getting worse?

I have explored the TSA homepage and found that very helpful. I would greatly appreciate any input and opinions. I just want my son to be happier and help him through the social issues that he has been experiencing. He does well in school, and has never been a discipline problem. He just has problems focusing on the task at hand and relating to others. When he loses his temper, he says that he feels like he is totally separated from himself and cannot control what he's doing. He's a beautiful little boy but very confused and scared by all of the things he has going on in his mind. I'm beside myself with worry and don't want to do something to him that can have life-long negative consequences.
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Old 02-02-2011, 04:24 AM #3
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Dear SeekingMom,

How did you get on when you called the doctor back? I actually attempted to respond to your post before now, but wasn't able to I'm sorry due to unforeseen circumstances.

Your son is 12 years old now, but I'm wondering when any of his symptoms actually began. (apart from the anger episodes I mean. You said they began about 6 months ago).

Are these tics really new?

Is he doing well in school? Have any of his teachers over the years suggested any concerns with him there, or with his peers?

I would be very concerned about a doctor prescribing medication and giving an all encompassing diagnosis after only 5 minutes.

If you wish to get another opinion, then there is information at the TSA-USA site. Link Below. If you live elsewhere, please let us know.
TSA-USA Newly Diagnosed
Quote:
Call TSA at 718-224-2999 or email us to find a doctor who specializes or Allied Professional (Counselor, Psychologist, Social Worker) in Tourette Syndrome - to confirm the diagnosis and to advise you of available treatment options. We'll send you a list of practitioners in your area. We'll also send you a packet which gives basic information about Tourette Syndrome.
Just my personal opinion, but I would be wanting to know exactly what's going on with my son before taking the advice about medication for anything really... tics, or otherwise.

I'm wondering also if you see any triggers to his anger episodes at all? Do they happen just out of the blue, or can you figure out that they happen after school, or when the household is really hectic, or in any other particular situations?

Up until this past doctor's visit, has your son ever had any other diagnoses or ill health? Has he been physically ill prior to any of his symptoms occurring.

DSM-IV-TR: Tourette's Disorder (TR is text revised)
http://www.behavenet.com/capsules/di...touretteTR.htm

Common Tics of TS (pdf)

Last edited by Lara; 02-02-2011 at 05:07 AM.
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Old 02-03-2011, 09:51 AM #4
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Hi
I just wanted to agree with what Adam and Lara have suggested as it really does *not* seem that this doctor has evaluated and monitored your son sufficiently to make a diagnosis of TS, nor to be prescribing the strong drugs at this point.

Does your child have any history of strep infection? I ask because a condition known as PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcus) can mimic TS in some ways, but requires very different treatment. When onset of the neuropsychiatric symptoms seems sudden, and if there is a history of strep, it is worth checking into

Here are 2 sites that explains PANDAS http://www.pandasresourcenetwork.com/
http://pandasnetwork.org/

There is also growing evidence that Lyme Disease (from tick bites) can also mimic extreme TS symptoms

I am not saying your child does not have TS, but just that given the symptoms your describe, I would investigate other possibilities before putting him on those drugs
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Last edited by Chemar; 02-05-2011 at 08:43 AM. Reason: wording error
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Old 02-04-2011, 09:53 AM #5
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Tourettes labels movement and vocal tics seen for a a period of a YEAR. Otherwise the person gets other diagnoses such as transient tic disorder, motor tic disorder, etc.

Although OCD and other brain issues are more commonly comorbidly seen with TS, they are not part of the diagnostic criteria, and those other symptoms get diagnoses of their own.
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Old 04-04-2011, 12:50 AM #6
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I haven't been on this site for a long time, just happened to be passing by. My daughter was diagnosed with TS about the same age as your son. I have spent years trying to understand TS and advocating for my daughter. She is 23 and graduating from college. She has been practically on every medicine that could be prescribed for TS in the book. For her, none of them were successful and they created horrible side effects. I would consider consulting with a pediatric neurologist or a pediatric psychiatrist. Ideally, it would be good if they were well versed in TS. With your son's tics being so mild and without the vocal tics, if it was me, I would just let the facial tics exist. My daughter is med free and prefers to just deal with it and she has both vocal & motor tics. To be diagnosed with TS, a person has to have vocal and motor tics for one year. Obviously the anger management must be dealt with. My daughter had anger issues. It seems to be comorbid with TS, but it is a separate issue. I don't know much about ADHD. Many medications can make TS worst, including stimulants. You definitely need to deal with the behavioral issues. I'll keep in touch here. Good luck and just know you are a good mother and your son is lucky that you love him and are intelligent enough to question.
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Old 04-06-2011, 09:08 PM #7
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Good to see you again Dawnee
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Old 02-04-2013, 11:46 AM #8
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Default wow. Very familiar

Quote:
Originally Posted by SeekingMom View Post
My 12 year old son was diagnosed with Tourette's 3 days ago, and I have a lot of questions. This may get a little long, so I apologize in advance, but I feel that it is important to understand the whole picture when asking for and giving advice.

He has always had a bad temper, but about 6 months ago I noticed that things had been getting a lot worse. 3 months ago he tried to attack my older son with a kitchen chair, pretty much without provocation. This prompted me to seek counseling with one of the local community mental health organizations.

I'm also a few months away from graduating with my Associate's Degree in nursing. When studying psychological nursing last semester I was first exposed to what ADHD is and isn't, which happened to come up in class shortly after he had started the therapy. I had a lot of preconceived notions about the disease, and few of them were positive. After learning the DSM-IV criteria I realized that my son fit the diagnosis. There was another near-violent incident between him and my older son, so this made me much more open to the possibility of a med evaluation. I scheduled an appointment with the psychiatrist affiliated with the community organization.

After a 2 month wait, we finally had our appointment with the psychiatrist Thursday evening. We sat in his office and he introduced himself and asked a couple of general questions. Then he blurted out "Well, you have not been here for 5 minutes, yet I can tell you exactly what is wrong with your son. He has Tourette's syndrome." This totally floored me. I didn't know much about the disease, and was shocked that he would/could give a diagnosis so quickly without really gathering any information. He was basing it entirely on my son't facial twitches, which I have just ignored as mildly distracting for some time. I took him to the eye doctor's a month or so ago for excessive blinking, and he just blamed it on dry eyes. My main concern has been the violent mood swings and other symptoms of the ADHD. He continued to ask us questions for 20 minutes or so and then told us that he was going to give my son a script for tofranil and clonidine. He said that the only side effects might be dry mouth and constipation.

When I got home I decided to do some research. Because I am in college it is easy for me to locate journal articles, and almost 2nd nature to research that way. I was familiar with the clonidine because it is commonly prescribed in adults for blood pressure, but I was unfamiliar with the tofranil. When I realized that it was a tricyclic antidepressant, warning bells began going off in my mind. The extrapyramidal side effects scare the snot out of me.

I have also noticed that my son exhibits a lot of the behaviors of hoarding, which I know is closely related to OCD. I'm just really upset because I don't think that the doctor did a thorough enough evaluation to write a script for such a potentially dangerous drug when there seems to be much safer alternatives out there.

So, I decided to hold off on filling his script, and plan on calling the doc tomorrow with my questions. The tics that my son has are what I would consider more of a minor to moderate annoyance, but the emotional issues are more of a priority. He mainly just blinks and occasionally twitches he cheeks. I haven't noticed any vocal tics at all, but both of my boys said that he does clear his throat a lot. (I asked if either of them had noticed him making random noises for no real reason) And he said that sometimes he clears it because it feels dry, and sometime he just does it because he can. The research I've seen seems evenly divided about whether stimulants will make the tics worse, stay the same, or go away altogether. I saw no current documentation of tofranil being a first-line treatment for Torret's which is another concern. So, here are my questions:

1) Am I overreacting about the tofranil?

2) Has anyone used Strattera successfully with Tourettes?

3) Has anyone successfully used stimulants without the tics getting worse?

I have explored the TSA homepage and found that very helpful. I would greatly appreciate any input and opinions. I just want my son to be happier and help him through the social issues that he has been experiencing. He does well in school, and has never been a discipline problem. He just has problems focusing on the task at hand and relating to others. When he loses his temper, he says that he feels like he is totally separated from himself and cannot control what he's doing. He's a beautiful little boy but very confused and scared by all of the things he has going on in his mind. I'm beside myself with worry and don't want to do something to him that can have life-long negative consequences.
Your note sounds like you have my children in your home. Your story is so commom. It is not a disease. It's a disorder. I have a husband and 3 boys with this disorder. There is no test to diagnosis but there is criteria that must be met before a diagnosis can be made. I would definitely recommend an appointment with a pediatric neurologist.
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Old 05-18-2013, 08:01 PM #9
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Hi there. I'm a new mom to a 12yr old with TS as well. He also has ADHD. looking back now I can see where my son has had minor tics for ages. Our Dr. said that most of the med had so many side effects that it simply wasn't worth it. So I think I would try for a second opinion before I started my son on the medicine. Hang in there
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