Nervous about Neuorologist

[ML]

You would think by now I'd be more comfortable with the possibility of adding more letters to the mix of diagnosis for manster but I'm not. The apt is coming up in a couple weeks and I'm anxious. I don't know what a diagnosis of Tourette's Syndrome will mean for my son's future. Please, if anyone here lives with Tourette's Syndrome and tics day to day, please either post or pm me with some guidance or perhaps encouragement. ML

 

[smallworld]

ML, can you tell us what kind of tic movements you're seeing in manster?

 

[ML]

Gosh I have just a sec before running out but yes. A few years ago the throat clearing which we didn't recognzie as a tic (also has asthma). Now it is eye blinking and sometimes winking and a new one about a week ago. A low hum in the back of his throat. He's on 2mg of chonidine and I wonder if they would be worse without it. Anyway, I'll check in later. Thanks SW love you, ML

 

[smallworld]

ML, it sounds as if manster has a combination of motor and vocal tics, which might qualify for a diagnosis of Tourette's Syndrome. Simply defined, the criteria for Tourette's Syndrome includes a combo of at least two motor tics and at least one vocal tic; symptoms have lasted at least one year; and onset is before 18 years old.

As far as we know, my son only has motor tics, largely centered around his face -- eye blinking, nose bridge wrinkling, mouth opening and lip licking. We have not noticed vocal tics so we don't think he qualifies for a diagnosis of Tourette's Syndrome but instead a diagnosis of tic disorder. My son's tics started at around age 11, they wax and wane and are exacerbated by anxiety and viruses (and sometimes nothing at all). We've been told that they should improve when he is done with puberty.

Tourette's is a highly co-morbid condition. For example, 60 percent of people with Tourette's Syndrome have ADHD. Obsessive Compulsive Disorder (OCD), anxiety, ADHD and tics run strongly through the same families.

I can't tell you not to be anxious, but if you and manster have already been living with his tics, I'm not sure a diagnosis of Tourette's Syndrome is really going to change anything. We've been living with my son's tics for 5 years, and I can honestly say it has not been his biggest problem (in fact,it doesn't even figure among the top 10). Anxiety, depression, social withdrawal, academic underachievement and lack of emotional connection have been far greater challenges.

Hang in there, ML, and good luck.

 

[tiredmommy]

{{{ML}}}

Just remember that Manster is the same great kid you love as before the appointment. No diagnosis changes that. {{{Hugs}}}

 

[Star*]

ML already has figured out Tourette's Syndrome...... Hoping for something else....BUT it's looking that way for Manster. I have been hoping it was just an allergy to horses. , I don't think so....

Whatever they find......his heart still tics right!!!!!!! And that kid loves his Mommy more than any boy I know. He also loves his Auntie Star....but alas I'm so many miles away. I just think about those beautiful eye lashes and I melt.

Love you girl!
Star*

 

[klmno]

No experience with that here but I wanted to offer support. As always, you and Manster are in my thoughts and prayers. I hope this visit finds some relief and help for you both.

 

[ML]

Thanks everyone. I'm sick to my stomach with worry. It just feels like this kid never catches a break and I don't know how much more either of us can take. I'll post an update after the apt on Feb 15.

 

[Wiped Out]

Many hugs sweetie. Wish I could take your worry away. I always wish difficult appts. could just be scheduled immediately so no one has to deal with the wait.

 

[Marguerite]

The vocal ones sound like both my boys. That "throat clearing" one (forwant of a better description) we've had in slightly different forms in the boys. Then there have been the more obvious noises...

The facial tics - difficult child 1 never really had them. difficult child 3 hasn't had any really obvious ones for some time. His friend (with autism too) has a sort of facial twitch/nose wrinkle twitch (a little like Samantha in Bewitched).

Certainly check out Tourette's Syndrome. But if the neurologist says it's not, then don't be afraid tat no other diagnosis fits. Because it still fits with Pervasive Developmental Disorder (PDD) in some form.

Whatever the guy says - it is what it is. It won't be a sudden change in manster, he will still be the same kid who walked in to that doctor's office.

Marg

 

[Fran]

ML, it seems the onset of puberty brings about many of the behaviors that we see as they age, except worse. Those years from 11 to 14,15 were the scariest of difficult child's life for me as a parent. He was one step from long term institutionalization or hospitalization. We were in despair that difficult child was going to be the same his whole life.
Fortunately, as he aged, things sort of pieced together to form a more stable personality and many of the mental illness aspects seemed to normalize. His learning disabilities and executive function issues are still present and causing function issues but he is not the chaotic ball of destructive and weird energy he once was.
I know how worried you are about your son's future. Try to think of this as the storm before the calm. He isn't going to be cured but hopefully stabilizing will be the goal.
"Courage isn't lack of fear but what you do in the face of fear" You are a warrior mom. Bravo.

 

[ML]

THANK YOU. Wow, you all have lifted me out of my dark thinking. Fran, your description of difficult child then and now gives me so much hope. Believe me, my view of normal has changed drastically over the years and I think I can get back to my normal baseline now. I just got a bit crazy there for a minute but I'm back.