Tourette's - How do you know?

[Guest guest]

Hi Ellen, I'm glad things are improving, though I understand not nearly as

fast as you would like! My daughter started having tics a couple months

after OCD onset, shortly after she was placed on the first SSRI she tried.

Her doctor said the SSRI probably " unmasked " a tendency to tic. Since then

she has been on four different SSRIs and from that I can attest that in her,

different ones seem to cause or provoke tics more than others. Though her

tics wax and wane, for years seemed to be " taking turns " with OCD, being

more prevalent as OCD waned and vice versa, they have never gone completely

away for any appreciable length of time. I think it's probably simplistic

to say taking an SSRI " caused " her to tic, instead OCD and tics/TS are

intertwined disorders and many, many kids with TS and OCD have significant

aspects of the other disorder. Risperdal made a significant dent in my

child's tics and other TSy behaviors such as impulsiveness.

Whenever my child has been in the midst of a med adjustment, I jotted short

notes to myself of behaviors, problems, etc. anything " different " to mention

to the doctor. The doctor can assess which are important, which less so,

etc. and will likely use the info to make decisions about dosage and so on.

There is a chance that your dd is having more ticcing just now, but these

will fade as she acclimates to the new SSRI.

Is your daughter uncomfortable with the suspected tics? I suggest you just

note the behaviors and let the doc decide if they are likely tics,

compulsions, med side effects or what have you. If they are tics, it's best

to just ignore them as much as possible.

I know how everything is so up in the air when in the midst of med

adjustments. It's just cruel how long the SSRIs can take before it's plain

how well they will reduce OCD symptoms, what if any side effects are just

temporary nuisances vs. ongoing problems, and so on. Hang in there, it

sounds like dropping Zoloft was the right thing to do and soon, you will be

able to look back on this episode with more clarity and assuredness. I'm so

glad of the improvements you are seeing already, and hope they are only the

first of many to come.

Take care,

Kathy R. in Indiana

----- Original Message -----

From: " musicgirl9395 " <musicgirl9395@...

> Hi all,

> Things have improved here during the daytime. I have a happier

> daughter who I can actually talk to again. Morning and evenings

> rituals are still difficult, but hopefully improving.

> She is on 40mg prozac now, and 25-37.5 seroquel. The facial grimace

> is better, but now I am noticing other things, or am I being too

> critical? She makes sounds at inappropriate times, I don't know

> why. And occasionally (maybe more, but I don't look at her all the

> time), she puts her chin down or something a little unusual with her

> mouth. I am not really sure. At first, her mouth was really dry from

> the seroquel, and she was licking her lips a lot.

> Are these tics or side effects to the seroquel? Or the prozac? I

> really believe that the zoloft made her nuts. She is back now, that

> she is not on it, however, the OCD is still here too.

> How do I know if she has TS? I worry about the rare serious side

> effects of seroquel (I am a worrywart), and wish I could know what

> these things are. We see the doctor in the middle of the month, but

> until then, I am watching carefully and not sure what would be

> important to report to him or not. I don't want to overreact about

> anything, but I also don't want to not tell him something that might

> be important.

> She has copied peoples' sounds for years, but that was all I noticed

> until now. I am sad because I feel like the zoloft brought this

> out. Might this all go away? Kind of confused, Ellen

[Guest guest]

I am not sure that my daughter is aware of it. I haven't brought it

up to her because I remember reading that it is best to not bring

more attention to tics. I only asked her why she was doing it at

first, and she said " because my lips are really chapped " . Now there

seem to be other movements too. Is that typical for there to be

different movements? I also have noticed that they are worse at

nighttime; I am assuming they worsen with tiredness.

Kathy, how much risperdal was your daughter on and for how long?

Does your daughter know that she has TS and OCD? I think my daughter

would be quite upset to know this, if this is what she has. (I think

she does, but my husband isn't sure). Tonight as we were watching TV

together, she was REALLY tired. I noticed different movements and if

I asked her a question, she would answer it and follow it by the

word " bitch " . Sometimes I make her go to her room for this; other

times I feel like it is either a compulsion or a tic. SO confusing

and hard to discipline!!!!! That is another reason I think it is

TS. I guess the only good thing is that this may help with finding

the right medication and that may help her pay attention better and

her impulsivity.

I would go to a neurologist, but I don't want to tell her what is

going on, as I think it would upset her too much.

Tonight she fell asleep on her own, in our bed, with her clothes on.

She avoided the whole " dressing " business. I was relieved to not

have a fight. We'll work on it during the daytime hours, I guess.

Thanks for the constant support and for listening!!!!! Ellen

[Guest guest]

Hi Kim I just sent you an email as to our experience at the TS clinic

at Toronto Western. I think the kids want to know, my son did. He is

a triplet and the other 2 are fine. He always asks what is wrong with

him. When we finally got the diagnosis from Dr Sandor, he told

everyone family and friends himself what is wrong with him, and they

asked him questions and everyone was interested. I think family and

friends need to know as well so they can accept the odd behaviour, that

way no one says " why is he acting crazy " behind my sons back. Or

family will discuss him with other family members instead of coming to

me with their questions, at least that was what happened to us. Glenn

has always been on Risperdal and this will be increased from 3 mg to

4mg in Feb when he starts the Prozac. He is being weaned off Seroquel

as the clinic didn't know why he was on both, and I said because the

psychiatrist gave it to him for the voices that he hears. Also it was

a relief to know these voices are obsessive thoughts and not SZ. But I

do question the Prozac. Is this normally the first drug kids go on for

OCD? How do they choose from the 4 SSRI'S that I have read about?

So I feel just knowing what is wrong is easier to live with for both my

son and my family. Hope this helps.

Rose

[Guest guest]

> But I

> do question the Prozac. Is this normally the first drug kids go on for

> OCD? How do they choose from the 4 SSRI'S that I have read about?

*****Prozac is the oldest SSRI and so there are more studies of it in

children. Some doctors have the most experience with it and so turn to it

first, it's available in liquid, pills, generic... Doctors decide on which

SSRI to try first based on a mix of considerations. Some SSRIs are

considered activating in most people while others are calming, so that may

come in to the decision. Another consideration is if someone in the family

(Mom, Dad, sibs) have used a particular SSRI with good effect, that may mean

the child will have good response too. All SSRIs may worsen TS symptoms,

unfortunately, so part of your son's doc's considerations will be the SSRIs'

effect on ticcing in him.

Despite this, there is still considerable trial and error for many of us

when finding the right SSRI and right dosage. I hope Prozac is " the one "

for your son!

Kathy R. in Indiana

----- Original Message -----

From: " labattcave " <labattcave@...>

> Hi Kim I just sent you an email as to our experience at the TS clinic

> at Toronto Western. I think the kids want to know, my son did. He is

> a triplet and the other 2 are fine. He always asks what is wrong with

> him. When we finally got the diagnosis from Dr Sandor, he told

> everyone family and friends himself what is wrong with him, and they

> asked him questions and everyone was interested. I think family and

> friends need to know as well so they can accept the odd behaviour, that

> way no one says " why is he acting crazy " behind my sons back. Or

> family will discuss him with other family members instead of coming to

> me with their questions, at least that was what happened to us. Glenn

> has always been on Risperdal and this will be increased from 3 mg to

> 4mg in Feb when he starts the Prozac. He is being weaned off Seroquel

> as the clinic didn't know why he was on both, and I said because the

> psychiatrist gave it to him for the voices that he hears. Also it was

> a relief to know these voices are obsessive thoughts and not SZ. But I

> do question the Prozac. Is this normally the first drug kids go on for

> OCD? How do they choose from the 4 SSRI'S that I have read about?

> So I feel just knowing what is wrong is easier to live with for both my

> son and my family. Hope this helps.

> Rose