View Full Version : New to board parent of a child with Tourettes


eileen
04-23-05, 12:04 AM
Hi,

I'm a parent of a recently diagnosed child (he's 8) with Tourettes. I have so many questions and can't seem to get anywhere on the internet. I know the basics. My son started with sniffing about 2 years ago. His Doctor assured me it was only allergies and treated it as so. I remained persistant and kept bringing my son's recurring sniffing and thorat clearing to his attention only to be told it was all allergy related. This year--finally---I insisted we see a neurologist and what we suspected was indeed Tourettes (wish Dr.s would LISTEN to parents).
Anyway here we are 1 month after being diagnosed. My son started with the simple tics---sniffing, throat clearing then moved on to tongue clicking and rqapid blinking. My son is intelligent, in gifted at his school and so far shows no signs of ADD or ADHD. There are some underlying OCD traits and panic/anxiety runs in the family.
The tics however in the last month alone are increasingly becoming more noticable such as shoulder shrugging, rapid head nodding, eye blinking. We do not want to resort to meds if possible but the refocusing excercises we use do not help him longer than a minute or too. I feel like he's finally been given the chance to "relax" and now several tics are presenting themselves and it's only now that I notice others noticing him. I'm not embarrassed by him but so concerned that his self esteem could be compromised.
I'm asking this board for help and guidance. What resources are out there to help us here? Any information is greatly appreciated whether it be websites, support groups or books. We're starting at the beginning and want to know as much as possible to do whats best for our son.
Thanks for taking the time to read my post.

Eileen

jaz-z0r
02-08-06, 10:45 AM
I have had tourettes since I was 8. I wasnt being medicated until I was 16.
Knowing how your son feels, I would hope you would put him on medication.
My tics started off as sniffing and clearing my throat to full blown screeching at the top of my lungs, yelling derogatories, and making random loud noises. This was really hard for me in middle school, and in my 11th grade year in HS, I couldnt handle it anymore. I dropped out from the redicule and fun I was recieving just about from everybody. Eventually I got my highschool diploma, but the tourettes still pretty much controls my life. I was medicated on a medicine called 'Orap' which worked very well for many years(5), until I started getting horrible anixety attacks which was linked back to the Orap. Now I don't even leave the house because I can't stop the motion and vocal tics. Please for your sons sake get him on medication. It is WAY too hard to deal with without. I am now (again) finding that out.

glasgowchick
02-11-06, 12:22 PM
Hi,

I'm a parent of a recently diagnosed child (he's 8) with Tourettes. I have so many questions and can't seem to get anywhere on the internet. I know the basics. My son started with sniffing about 2 years ago. His Doctor assured me it was only allergies and treated it as so. I remained persistant and kept bringing my son's recurring sniffing and thorat clearing to his attention only to be told it was all allergy related. This year--finally---I insisted we see a neurologist and what we suspected was indeed Tourettes (wish Dr.s would LISTEN to parents).
Anyway here we are 1 month after being diagnosed. My son started with the simple tics---sniffing, throat clearing then moved on to tongue clicking and rqapid blinking. My son is intelligent, in gifted at his school and so far shows no signs of ADD or ADHD. There are some underlying OCD traits and panic/anxiety runs in the family.
The tics however in the last month alone are increasingly becoming more noticable such as shoulder shrugging, rapid head nodding, eye blinking. We do not want to resort to meds if possible but the refocusing excercises we use do not help him longer than a minute or too. I feel like he's finally been given the chance to "relax" and now several tics are presenting themselves and it's only now that I notice others noticing him. I'm not embarrassed by him but so concerned that his self esteem could be compromised.
I'm asking this board for help and guidance. What resources are out there to help us here? Any information is greatly appreciated whether it be websites, support groups or books. We're starting at the beginning and want to know as much as possible to do whats best for our son.
Thanks for taking the time to read my post.

EileenHi Eileen, this must be so hard for you and your son, My 9 year old daughter started facial tics about 9 months ago, she screws her nose up and she kind of rapidly pulls and jerks her chin towards the back of her throat, she makes a Huh sound now and then. very hard to explain, I thought she was picking up bad habits and was intentionally pulling these faces, she also had one where she pulled such a face, a few of her brothers friends asked if my daughter was mad at someone, it was like she couldn't squeeze the muscles in her face hard enough. She has just ben reffered to the neurologist and her first appointment is 15th of march. Her brother, when he was about 8-9 he used to pull the same face with some eye rolling, his lasted about 4 months and he doesn't do it anymore, he will be 13 this August. So I am hoping for Laura's sake it will stop. Please keep me posted with all your info, I haven't had a diagnose of anything yet so this is all new to me too and for the past 4 weeks I have been reading up on facial tics. here is a website I just found which look interesting. www.intelihealth.com (http://www.intelihealth.com) take care.

Naomi2
03-04-06, 03:43 PM
it was like she couldn't squeeze the muscles in her face hard enough.
Hmm...that sounds familiar :rolleyes: :eyebrow: :cool:

(I will try to write another, more useful reply soon but I have no time now.)

joanneb
05-12-06, 05:34 AM
hello my son is 7 and has had tics for a few years now he has been diagnosed earlier this year with ts ocd and adhd but i think meds should be used as a lest resort as some of the side effects are worse than the tics.I always try to ignore my sons tics and dont draw attention to them or mention them unless he does.It is scarey and it did help me at first to read everything i could on ts.

Orchide
09-18-06, 08:18 PM
My daughter has been diagnosed with ADD several years ago. She is not diagnosed with tourette yet, but it is obvious that she has it. She has many facial and body tics. She also sniffles. The tics changes; sometime they stop for a while and start all over again. She just started another round of tics that are much worst then before. She is now jumping as well.

I may not be politically correct, but I have to say the things the way I feel them in order to progress here. My daughter and me have not talked about tourette yet. ADD is already not easy to deal with, I don't know how to break out the topic of tourette to her. For what I read, their is very little to do for mild tourette. I wonder if I should even mention it to her at all; however, I want to help her as much as I can in order for her to maintain her self-estime and grow to be a accomplished adult. Any advice?

My question. In your experience, is there a way to answer peers and friends questions about the tics without making too much a medical case out of it. My daughter is now 13, very self-conscious, and like many kids of her age she does not like to stand out.

flosspot
11-28-06, 03:26 PM
Hello :) - I have just read your message about lack of help,support on the internet and feeling lost and alone :( - My son Sam was diagnosed a year ago aged 6 with TS, ADHD, Aspergers and OBD. We managed to get a diagnosis from London but it has taken a long time of me feeling like a fussy paranoid mother to get to where we are today. Because of the lack of support we have in England in my local area I have launched my own website all about Sam which hopefully will be a lifeline for other familes who need support and advice. The site is www.samuelsworld.co.uk (http://www.samuelsworld.co.uk) I hope it will answer some of your questions regarding TS - Good luck and God Bless.

xxxx :D