Update & TS conference

[Guest guest]

Hi all,

I'm knocking wood before type this, but I'm pleased to report that my son has

gained back 5 lbs. in the past 10 days. Yipee!!!!! He also took some pretty big

leaps forward by participating in experiential therapy this past week and going

on his first short outing with some of the kids to a local pet store ( he loves

animals). Those things were HUGE for him, and I am so thrilled. Granted, none

of it was easy for him and he said it was extremely stressful, but he still

pushed through and did it! Showers are still a struggle for him, but those too

are getting a little bit easier as time goes on.

HIs tics have lessened, however i don't get too excited about that since they

can wax and wane a lot normally. It's hard to know whether it's because of meds,

him getting more adjusted to 's, or just the natural progression of

Tourette's, but whatever it is, I'm grateful for now that they have calmed down.

I think that's a big part of the reason why he's been able to gain back some

weight because he was burning a ton of calories with the tics being so intense

and frequent.

My husband and I are going out to 's this coming Thursday for our first

visit since my son was admitted. I'm SO nervous about the visit! It will be 6

weeks since we've seen him, and the longest he's ever been away from home was 10

days at a summer camp. I'm nervous about how it will all go, what condition

he'll be in (physically and emotionally), and especially nervous about us

leaving to go home and how that will impact him.

On another note, I attended the national Tourette's Association conference in DC

the last 2 days. Because so many TS kids (and adults) also have OCD, the topic

was brought up and discussed quite a bit in the various clinics that were held.

It was a wonderful conference! I learned a lot, and was SO taken by what an

amazing group of people I was surrounded by. Most impressive were the young

adults, now in their twenties, who spoke so candidly and from the heart about

what it was like growing up as a kid with Tourette's and OCD.

I went around and collected video greetings to my son from some of the " celebs "

with TS and OCD at the event to make a video that I will bring to my son. Among

them were a former American Idol contestant; former Miss Louisiana; a

comedienne; a female ventriloquist; a Hollywood producer; a professional

skateboarder; young lady who was the winner of Hell's Kitchen season 2, and

author ( " The Christmas Box " ) who recently came out with the

first in a series titled " Vey, " a fiction novel about a boy who has

Tourette's and possesses electrical powers. gave the keynote speech at the

lunch yesterday and he was AMAZING!! He wasn't diagnosed with TS until his 40s

when he took his son (the book's namesake) to be diagnosed for TS.

So all in all, it's been a good few weeks I'm glad to report....

[Guest guest]

I think said that he was finally diagnosed with TS when he took

his son to a neurologist to be diagnosed. I believe the neurologist recognized

some tics that may not have understood to be TS. He did say that he

literally cried his eyes out after being diagnosed because of all the years as a

kid he didn't know why he was having these strange movements and sounds and was

bullied and teased by other kids. Not sure why his parents didn't take him to

doctors, but don't know the whole story.

The American Idol contestant was Dave Pittman, from season 9. He never made it

to the top 12, but since that time he's been really promoting TS awareness,

recorded an album, and is truly the nicest guy ever! All of them could not have

been more kind or compassionate, they were just wonderful.

In fact, I told the panel of young twenty-somethings they all need to go on

tour. Their stories were so incredibly inspiring and it's not just about TS and

OCD, it's about dealing with adversities in life, overcoming them, and not

letting anything stand in your way.

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> Glad the TS conference went so well, sounds like it's the same as the OCD

conference agenda, ran the same way. I know when you said the former American

Idol contestant, I thought of Durbin, since he has TS and also Aspergers.

How wonderful you did a video, you are such a GREAT mom! So how did

not know he had TS until his 40's, was his just so mild and intermittent?

>

> Thanks for updating us, happy it was all GREAT news!!!!!

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[Guest guest]

I think said that he was finally diagnosed with TS when he took

his son to a neurologist to be diagnosed. I believe the neurologist recognized

some tics that may not have understood to be TS. He did say that he

literally cried his eyes out after being diagnosed because of all the years as a

kid he didn't know why he was having these strange movements and sounds and was

bullied and teased by other kids. Not sure why his parents didn't take him to

doctors, but don't know the whole story.

The American Idol contestant was Dave Pittman, from season 9. He never made it

to the top 12, but since that time he's been really promoting TS awareness,

recorded an album, and is truly the nicest guy ever! All of them could not have

been more kind or compassionate, they were just wonderful.

In fact, I told the panel of young twenty-somethings they all need to go on

tour. Their stories were so incredibly inspiring and it's not just about TS and

OCD, it's about dealing with adversities in life, overcoming them, and not

letting anything stand in your way.

>

>

> Glad the TS conference went so well, sounds like it's the same as the OCD

conference agenda, ran the same way. I know when you said the former American

Idol contestant, I thought of Durbin, since he has TS and also Aspergers.

How wonderful you did a video, you are such a GREAT mom! So how did

not know he had TS until his 40's, was his just so mild and intermittent?

>

> Thanks for updating us, happy it was all GREAT news!!!!!

>

>

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