Is this a forum where I can post a quick summary of symptoms my 11-year-old DS had for most of his life? If it sounds to you like he has Tourette's, I will feel a combination of guilt and gratitude:

TICS:
A lifelong pattern of one tic after another. One leaves, only to be replaced in a few months by another.
Examples:
-repeating the final consonant of a word (..d..d..d..., or t..t..t..)
-leg muscle jerking accompanied by high pitched, "squeal"
-shrugging shoulders
-water dripping, "doit, doit" sound with mouth
-sucking sound with lips
-knuckle cracking
-biting shirt
-random singing
and more...

OBSESSIVE FEARS: (and I mean horrors...like won't leave the house...)
-bees
-tornadoes
-flying monorails (after a trip to Disney)
-throwing things away (ran to curb on trash day for a year and dragged trash back in..I had to let him sleep late until garbage truck was gone)
-water sprayers on ceilings of stores
and more...one would come, then leave after 6-8 months, then another

MOOD SWINGS
-when happy, ELATED!!! clapping hands in quasi-childish way,
-when sad, sobbing!!
-when frustrated, totally HOPELESSLY so!
-when angry, ABSOLUTELY FURIOUS!

UNUSUAL TALENTS/CHALLENGES:
-piano prodigy (has an agent, plays jobs for $$ in restaurants...loves and copies jazz like professional)
-"ceiling" math scores (5th grade, tests at 12th grade)
-amazing tap dancer (!)
-charasmatic on-stage actor (performs in community theatre, frequently gets leads of 300+ lines in children's productions, memorizes them instantly)
-"larger than life" personality...huge appetite for performing
-almost ZERO memory for spelling
-great difficulty reading
-very late talker
-almost unable to relate to peers one-on-one..seems to have no "social radar"


HERE IS WHY HE IS NOT OFFICIALLY DIAGNOSED:

I have taken him to three psychologists. At each visit, DS has never exhibited the behaviors. He is charming, funny, and "fine" at the meetings. All three say he's fine, just a struggling reader. How many times do I "take him in?" I have the "feeling" there is something not quite right. I have two other children. I am a pretty laid back mother, my DH is supportive but gets annoyed by the vocal outbursts. We home school, so he doesn't get teased (except sometimes by sisters who also complain about vocalizations). I can tell he is embarassed by the tics, but he's great at covering them up or working them into some other body movement. Plus, when he is focused on some activity obsessively like acting, dancing, or playing piano, he doesn't do the tics. But when he eats ice cream, he has repeated, severe jerking of his leg muscles.

Do any of you think this sounds like a pattern consistent with Tourettes? If so, how do I get him accurately diagnosed, and what is the next step? If I totally ignore this, I will feel like I've really let him down.

Thank you so very much for any advice.

welcome JAM's Mom

honestly, only a developmental pediatrician and/or a neurologist would be able to make an accurate diagnosis

Psychologists arent really the one's who are trained or qualified in dx neurological disorders, which is what Tourette Syndrome is
They can help a lot with therapy (like cognitive behavioral therapy for OCD etc) and with other aspects of psychological symptoms, and behaviour , but may miss some of the finer clues as to neurological issues

when my son was first DX, by a developmental pediatrician (and later confirmed by a neurologist) he did not, to my observance, tic at all during the meeting. But the doctor was able to see certain things by observation and by the questions he asked.

Thank you very much. I am disappointed that I was never advised of that. They all seemed happy just to dismiss my fears. It gets expensive.

I will consult a pediatric neurologist.

Thank you again for the kind reply.

Hi JAM's Mom,
I'd also suggest seeing a Neurologist but after reading your post I'd also suggest a developmental pediatrician. The part you've written listing the tics sounds like tics. Yes. The rest doesn't.

You've also mentioned he has anxiety or obsessive fears, mood swings and some of the other things you've listed are probably the ones that need sorting out the most. A few of the things that you listed in the Talents section sound a lot like my son when he was the same age and he has a condition called Asperger's Syndrome as well as the TS/tics.

As Chemar said, it's quite common for children not to have tics in the doctor's office but a good doctor who is knowledgeable about TS will understand that. If I was in your shoes it's the anxiety and the mood swings that would be of more concern to me.

I must say that your son sounds wonderfully talented! Just amazing.

Depending on what area you're in will in a way influence who you see about these other issues that your son is dealing with. Here's a website that deals with childhood fears and anxiety. As it explains in there, it's not so much the "things" that a child worries about that is the problem, it's more how much all that worry and anxiety is affecting the child. http://www.worrywisekids.org/
Tamar Chansky also has some very good books available. One of them is "Freeing your child from anxiety".

So really, it's the anxiety and the mood swings that would be my first priority and in some areas in the world (I'm in Australia) it'd be a Psychiatrist who might be the best type of person to see for those issues. It really depends so much on where you live and who you have available in your area that might be able to help sort out all the issues.

You also might find that the tics settle down a bit once those other issues are smoothed out. The difficult thing is figuring out what's driving the anxiety and the mood swings and that could be quite a number of things, so finding someone who is knowledgeable is the best way to go and the sooner the better for your son. I'd also be thinking about some social skills training if there's anything like that available in your area. That might help your son with his relationship skills especially at school.

TSA-USA has a referral form on their website ...
http://www.tsa-usa.org/forms/prl_aprl_inq_form1005.html
Physicians and Allied Professionals
Referral Lists Inquiry

It might help if you were able to give a general idea of where you're situated as there may be someone else here who has good experience with someone in your area. I don't mean exact details or anything. Just general area. If you do end up finding someone and they dismiss the anxiety and the other details as being part of Tourette's Syndrome and they focus on your son's tics then I personally would suggest that you get another opinion... that's just "my" opinion though.

all the best to you and your son. Let us know how things are going there.

EDITED to add:
site crashed for a few minutes so I couldn't finish posting these...

I don't want to confuse the issue for you JAM's Mom or to worry you more, but did want to post this site in case any of it rang some bells. Sorting it all out can be tedious and it can take a little time, but it'll all be worth it in the long run for your son.

http://www.thegraycenter.org/identifyingachild.cfm
Identifying the child with ASD
By Laurel A. Hoekman

Jam's Mom,

Welcome! Id agree that the tics sound very much like TS. As you read about it (and it sounds like you have) you'll see that there are many other issues that often crop up (or, as they say.....co-morbid-I hate that term ). There are so many things to read and learn...take your time and read a lot.

In a way it is nice to have verification (and hopefully some guidance) from a doctor. But, really, it doesn't matter. You have described your son beautifully and you know him best. You know that something is cooking with him. These kids are talented, bright and, at times, intensely frustrating-particularly at your son's age. This is a tough age for all kids. He sounds like he has many goals and gifts.

The most important thing is to be there for your son. He will need this during the tough times. I do agree with the socialization skills training, though, to help with other kids and adults. Often the social turmoil is so much worse than the tics.

Lara is right......if you do post your general area then someone may suggest a name to you.

Good luck.

Take care,
Tessa

Thank you all so very much. I will find the professionals you suggest and take more steps.

The obsessive behaviors and the mood swings are tough, but the lack of social "radar' is the worst. Tonight, at a dance recital, some girls were teasing him backstage. He got so frustrated with their teasing that he scraped the back of his hand until it bled, "because they were making fun of me and it would make them even happier if I was bleeding."

All this occurred in a span of five minutes, with me no more than ten feet away, just out of earshot of the "teasing." I constantly tell him to come to an adult if there is teasing going on (he has ZERO tolerance for being kidded, even good-naturedly)

Anyway, thank you, new friends, and I will take your advice.

One final thought: thank you for the kind comments regarding his exceptional talents. His almost incredibly abilities are a side-effect of his obsessions. In an attempt to "focus" his obsessions, I have to find things he likes to do. Then he does them CONSTANTLY, and therefore acquires high level skills very quickly. Does this sound familiar to you?

Hi JAM's Mom and Welcome

If you still have trouble getting a diagnoses for your son from a qualified doctor, depending on your son's feelings, maybe you could video tape his tics. By doing this the doctor would be able to see the tics that you are describing. However, if your son refuses to be video taped for this purpose I wouldn't push it.

The one thing that stands out at me is that you said your son has severe leg jerking when he eats ice cream. I would consider removing dairy from your son's diet to see if dairy is a tic trigger for him. Dairy is a large tic trigger for me. There are many tic triggers that can be found here: http://www.latitudes.org/articles/finding_triggers.htm

I hope this helps. Also if you get a diagnoses and the doctor gives you a med for your son to try, just remember that there are also med free options to try that doctors may not educate you about. I suggest doing your own research to find the best plan for your son.

Carolyn

Thanks!

It was on this board that I read about the dairy connection, and the lights started to go on!! I have already removed dairy from his diet. I am also eliminating sugar, but that's a lot harder.