Tourette's info??

[Once]

Seriously, I had something longer typed up but I lost it.

 

Does anyone have Tourette's info, links to forums, support group names, books or whatever?

 

My son has been having mild tic like behavior for about a year and it seems that it has become more obvious lately.....a louder coughing "tic", with a mmm, and a sniffle. He is not sick......really. He isn't. It is more rhythmic not patterned.....and fast. Sounds like a sneeze not a cough. His previous tics were face grimaces and they were fast!!! Completley involuntary but I didn't take him in because it was mild and it passed and the web says you wait a year for dx. Before his tics were quieter and less lilely for others to notice. The cough is tough because people assume he is contagious.....but he isn't. Anyway, I was going to take him to a dr appointment but wasnt sure how people handled it. Do you go and say you think it is Tourette's or to you let the dr go through all the other options first?

 

Anyone have tips or btdt advice?

 

TIA!!

[GingerPoppy]

I've dealt with this too, so I've definitely BTDT. My absolute favourite, sanity-saving site was the ACN forums: http://www.latitudes.org/forums/index.php?showforum=1

 

There are so many helpful, experienced, intelligent people there. I spent a lot of time reading, learning, and asking questions. It really helps to have people to talk to who have been there, and that board is full of them.

 

Best of luck.

[Once]

Thank you, GingerPoppy. Looks like a great start.

[SwallowTail]

I would also look into PANDAS, as well as sensory issues and food allergies. My dd's tics are escalating lately, and I need to head down this path further as well. We had hoped her OT would help reduce anxiety levels, which would theoretically reduce tics, but it isn't happening.

 

I have long suspected allergies and PANDAS, so that will be our next step.

[Julie of KY]

The Tourette Syndrome Association has a lot of good information on their site. Speaking as both a pediatrician and a mom of two kids with Tourette's, I would tell your doctor specificallly what you are concerned about. Also, I think it is worthwhile to be evaluated by a nuerologist who deals with Tourettes. They are able to determine if the movements are tics as well as if the tics are caused by other problems. They can also be a wealth of information for you as a parent.

 

I'll have to get back with you on some good books. The ones on my bookshelf are good, but too technical - I've borrowed a bunch of good books from our Children's Hospital library, but I don't have the names at my fingertips.

 

LOTS of kids tic. Many have multiple tics that are bad enough to be diagnosed as mild Tourettes, but not bothersome enough to want to do anything about. There are some good non-medicine treatments that are very effective with some training.

 

Just having some information and a diagnosis makes it much easier to explain to others that the cough is just a tic, etc. Also, it often helps the child understand what is going on.

[akalori]

My son has vocal and motor tics. I don't like to think of it as Tourette's, because of the stereotypical association with uncontrollable cursing. I know that only small portion of kids with Tourette's have such inappropriate vocalizations. But I worry that if I call it Tourette's that I'll jinx him and he'll get those stereotypical symptoms. My son isn't on any medication. Fortunately my son's tics are usually unnoticeble. Around others, he limits himself to throat clearing and gulping. Sometimes people notice facial grimaces if they have some intimate knowledge of tics. Then they are sympthetic. The good news is that symptoms generally lessen after age 12. This is great because previously it was believed that symptoms increase during puberty. I can see that a coughing tic may alarm others. I think my son has done that too. It is hard to tell because he has asthma. You could just tell strangers that it is an allergic cough. I think you should tell the doctor about all of your concerns. Doctors seem overbooked, overwhelmed, and distracted. If you don't get your concerns right out in the open it won't get adequate attention. Tourette's is a common childhood disorder. If it isn't causing your son distress he probably doesn't need medication. Hang in there because it will probably get better. At least that is what I tell myself.

 

Lori

Edited April 23, 2012 by akalori
Added more info

[Once]

Thank you for the link and info, everyone.

 

I made an appointment for Friday before lunch. My husband had thought of just asking about the cough but it just slipped out when I was booking the appointment about our concern of tics. So far on the books it is a well child visit.

 

Looks like lots of learning to be done in the future for me. I want to look into diet so anymore info on that would be great. The hope that my husband and I both have is that we can avoid meds. I can overlook alot of ticing but the cough was uncomfortable for me because it felt like poeple were thinking he was too sick to be out and around others. My closest friends will understand and help me have a sense of humor about it but when out at restaurants and such it is harder. We may have to avoid some places when he is in the middle of an episode.

 

 

Thank you!

Anymore tips and ideas are welcome!

[Misty]

All of my kids have had tics and one of them has a Tourette's diagnosis, but is no longer symptomatic after treatment. Look into PANDAS and food sensitivities.. There is almost always an autoimmune component.