A good read with lots of info.

Dana - posted on 01/26/2011

Jennifer, I'm glad you've found this group! I hope you find many helpful posts. My son Matthew is 10 and has had TS since he was 5. Two years ago he started showing other symptoms such as anxiety, adhd, mood issues, so he is defintely TS Plus. The biggest issue we're dealing with is the anger. I'm at the end of my rope mentally trying to deal with his anger and yelling. He is our little Jekyll and Hyde! I have to go for now but I hope to hear from you soon.

Jennifer - posted on 01/26/2011

I am new on this site- I have a 9year old daughter DX with TS- and my son is quickly moving that same direction- his "pig snorting" throat clearing and chronic sniffing has taken his tics to a different level now- I"m sure it's just a matter of time now that he has some vocals too.. anyway- this book was wonderful- I keep it at hand and use it all the time- esp on those days I feel like I"m going crazy (our house can get very noisy- from tics....between my daughters throat clearing, humming and coughing- it's quite a chorus- along with my son's new noises... so this book has helped us so much understand TS, the complexities in TS and my kids are both on the plus of TS- severe sensory processing disorder, anxiety, ADD.....it's so helpful to read how this all goes hand in hand and how to help them, esp with school and social things! I"m glad to have found this site because there are so many days I just watch my daughter, talk, tic away with all her facial tics, stop to cough, throat clear (very dramatically (everyone always thinks she's sick all the time).. you all probably know that.., neck jerk, flap her hands, etc ,etc- they don't affect her much now, but she's only 9- . my niece has TS as well, she's now 15- we had no idea we have this familial component, my mom now admits at age 67 she has hidden her tics all her life, and really didn't know this is what is is- and she just thought she always had to throat clear, and blink, and some other tics- but with 2 , maybe 3 grandkids getting this TS diagnosis, now she's understanding to what she experiences- pretty interesting... I"m glad to be here-
Jennifer

Leslie - posted on 10/13/2010

I tell myself that all the time. I see the kids in O.T. that have severe autism, cerebral palsy and much more severe developmental disorders, and I think I am blessed...but it was really hard to think that when Scotie was picking the septum out of her nose. All I could see was the damage she was doing to herself...the blood...and it almost drove me crazy. I couldn't get it off my mind, and I knew that I was making myself sick with worry...and I knew that if I let myself get off-kilter that I wouldn't be able to help her.
My husband also doesn't quite get it...I love him dearly, but I married a redneck boy who just isn't that sophisticated. He wants her to snap out of it...especially when her tics are complex and look so controlled. He can understand twitches and jerks...He can't understand picking, burping, grunting or repeating the same words over and over again. I am blessed that she has learned to control her outbursts...The therapy swing has been the best thing that has happened to our family. She likes to swing and crash into things...they have these big foam rubber blocks at O.T. that she stacks and swings into. I don't know how it works, but at the end of it, she is smiling, calm and happy. Therapeutic Listening helps a lot too.
When Scotie was 10, she still only had a diagnosis of ADHD....and she was still taking stimulant meds. I remember having to leave work because she had a tic where she would lick her fingers and then rub her eyelids...and we all would just tell her to stop...and one day, she rubbed almost all the way through her eyelids. I took her to the doctor and we took her off them stimulants, put her on the Tenex and Strattera...but all we did for the next two years was treat the symptoms...Dana, you are ahead of where we were, so there is a lot of hope that you will find therapies that will help him sooner! And we've got this book now, too. Isn't it awesome???? Why didn't I find it sooner? It is the most comprehensive guide to understanding and dealing with TS that I have found. Doctors should be recommending it to us....but we probably are more educated and have done more research than they have at this point!
Take care, Dana...My prayers are always with you and your family. I know this sounds weird, but the Moms in this forum have become my best friends. I don't have a life outside of my family...We got to O.T. and B.T. and I have to go to the school all of the time, and homework is hell....I really look forward to talking to you.

Dana - posted on 10/12/2010

Leslie, Matthew will be 10 in December. I know I'm not looking forward to those years 12-14!! It's bad enough right now that I honestly don't know how I'm getting through it!!! Matthew was also tested negative for Aspergers although he also has alot of the same symptoms. Every month that we see his doctor he's trying to pinpoint a diagnoses. He's always putting checklists in front of me and asking "does he have any of these symptoms?" or "how about these, does he do any of these things?" Last month it was possible Multiple Complex Developmental Disorder and Temper Dysregulation Disorder with Dysphoria. Where do they get this stuff?!! I think it's all just Tourette's Syndrome Plus. That book is great that you recommended. I'm going to make my husband read it because he's having a hard time understanding the Matthew can't help alot of what he does. My husband is too quick to punish him because he just doesn't get it. He needs to go to some of the doctor appts with me I think. It helps so much that there's other mothers like you who feel just like I do!! I'm also a laid back person most of the time but this has left me so full of stress and wondering how I'm going to get through this for the rest of my life! But I definetly don't feel sorry for myself, there are alot of moms out there that have it worse than me!!

Leslie - posted on 10/06/2010

Oh yeah, Dana...Isn't Mattew 12? TS symptoms are worst between the ages of 12 -14...So, some of the stuff we are going through now will be over in a couple of years.

Leslie - posted on 10/06/2010

There is a chapter about "To label or not to label." I think it has helped me...because for years, I believed that my daughter had Asperger's Syndrome. I could not get that diagnosis because her testing didn't show the lack of empathy or inability to recognize other people's feelings that is so characteristic of AS. However, she has EVERY other symptom. She is a "little professor" in areas that she is interested in. Her inattention only applies to subjects that don't capture her imagination. She lacks organization...And socially, she is a train wreck. Life is very literal for her. A rule is a rule, and if you aren't doing what you have been told to do, she is going to announce it to the world. She doesn't recognize social niceties...for instance, you and I would never point out another person's weight, but she might ask them what its like to be so fluffy. Anyway, I believed for years that her diagnosis of ADHD was at best, incomplete...and since we re-tested her in December, I have felt...guilty that I had not pushed sooner for a more complete diagnosis. Maybe she wouldn't need reconstructive surgury on her nose if I had understood her co-morbid conditions better.
The truth is, I am coming to realize, that each child with TS is different, just like "normal" kids...and each child's treatment may need to be as unique as the individual. I also have learned that I am first and foremost my daughter's advocate...with educators, doctors and in social situations. I am a laid back, comfortable person...I don't know if I was cut out for this. But, I am getting better at it.

Dana - posted on 10/05/2010

Thanks, I'll have to check it out. Over the past year or two my son has gotten so many other symptoms and issues that now we're trying to figure out if he has something on top of the TS or if it's all TS!

Cynthia - posted on 10/03/2010

I have this on hold at my library. I will make sure to go pick it up soon! I am trying to read as much as I can before my son's first appointment Oct 21,