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Tourette Syndrome Community
This is a patient support community for discussion relating to Tourette syndryome.
Our Journey with Tourettes
by Soprano35, Jul 18, 2008 02:30AM
I just discovered this site. My eighteen year old son has Tourettes. Looking back I realize it really has been a journey. Though I never would have believed it back then..fear and anxiety doesn't grip my mothers heart anymore. Realizing your child's symptoms are adding up (us parents notice things so much more than others) is so difficult. If you have concerns I would advise that you make an appointment with a pediatric neurologist. Pediatricians can be wonderful and are often the ones who catch the diagnosis, but when it comes down to truly telling you if you are on the right track the doctor to do that is a neurologist. I think one of the most important reasons to identify if it is Tourettes is because as parents you will be the ones in your kids life to really educate and understand symptoms and give your child a chance at keeping their self esteem and allow them to navigate the ups and downs and sometimes plain craziness that growing up can be, without making things worse by not understanding why they may do what they do.
I remember exactly where I was when I voiced my first concern to a neighbor (a mother of eight) about why my son was doing something that caught my eye. She calmed my fear by recanting how one of her sons used to do something similar and it was just how kids can be. Still, I do remember that as the first time I felt worried. He was five. He had lots of symptoms from then until fifth grade when his tics became very active. That's when we hooked up with a formal diagnosis. Some of those early things:
Looking up to the side with his eyes-clenching his stomach-smelling things-being tactilely sensitive (couldn't handle tags in his shirts, didn't like the way shirts felt on him and would shift them around, couldn't stand the seams of socks under his toes, etc.)-doing a little yelp under his breath-if I waited too long to cut his bangs he would get a head shake as if his hair was bothering him-etc. These things weren't all at the same time. One would show up gradually and one would recess. There were times he did nothing and I am sure times I didn't notice something he knew he had to do. Mostly, he seemed not bothered by it at all, but it was constantly on my radar. Us mothers!! If he was relaxed watching T.V. a tic would be very active.
I know one of the worst parts of Tourettes can be worrying about what might be ahead. Looking back my son and our family have had a wonderful life and his tics are not the first or even the tenth thing I think of when I look back. If only I had been able to look in a crystal ball and know it would be alright I could have coped so much better! I wish I could have had a little more faith instead of fretting, but I suppose that is being a mother. I also like to hope that my vigilance in getting him the right help and helping him understand where these symptoms fit into who he is helped to get him to such a good place. There are a lot of associated conditions that are often found in patients with Tourettes. The one that worried my more than tics was that a lot of patients also have OCD. That didn't end up being a problem for him. ADD and ADHD are also more prevalent. I would say my son's overall profile included some things like weak small hand dexterity (he couldn't tie his shoe until third grade), bad handwriting, awful spelling, kind of clumsy and didn't excel at sports. Unfortunately, grade school is the nuts and bolts of education and the drive is to stay inside the lines, write neatly, spell correctly and do math times tables FAST. He had a great second grade teacher who told me at his conference that he was very bright and that she felt he would peak in college not grade school. I didn't really know what she exactly meant, but there were times later on that I clung to that little grain of hope. Another thing I was told along the way was that often kids outgrow this.
My son has ADD for sure. I was too scared to try stimulant drug therapy because they can provoke tics. He also had very bad headaches from about fifth grade through ninth. I think those were the most difficult thing we dealt with. At times I think physical tics like stretching his neck would trigger headaches. An I.E.P. in school helped as did working with a really great nuero-phsycologist to help pinpoint his learning difficulties and give us good advice. Our number one priority was to keep his self esteem intact. He tested gifted and his doctor predicted that with his ADD and intelligence he was probably bored in school. They were talking solar system and he was thinking about the big bang theory. Yet, with his learning issues he wasn't TAG material.
His tics did abate and almost were gone by ninth grade. I feel like they always lurk under the surface, but we were in a very good place by ninth grade. In tenth grade he did go on Concerta (a form of Ritalin). That, and maturity kicking in, his grades soared. His social life improved greatly. I think during those early years he was on the one hand very mature, but yet in sixth grade was still sweet and young acting like he skipped in the halls (not realizing the social cost of this). There have been times that the Concerta does provoke a mild tic, but taking Tennex in concert with it seems to help minimize it.
My son is in his first year at college. He just LOVES it!! His teacher was right.....he is majoring in chemical engineering and was a 4.0 his entire first year. He has been put in the honors program for next year. I tell you...he barely passed the ninth grade and his senior year had to take a night class and correspondence class to re-do those grades, plus take a very heavy load for that years requirements. He really had to fight to get there, but it makes him so much more aware of how great it is and never do I worry he won't continue working so hard. He has had two serious girlfriends and I never asked him if he told them about his Tourettes. Again, others often are not as aware as we are.
To note: both my two daughters showed signs of tics in about second grade. They were gone by fourth and I believe they were what they call transient tics. Also, when I was in the fifth grade I had facial grimaces. Being the sixties they sent me to a psychiatrist for one session. I guess according to my next sister up - they blamed it on her stressing me out. It went away and I truly had no memory of it. It's not like when I got married I told my husband "when I was in fifth grade I had some tic problem for a while". It wasn't until my son's diagnosis that I remembered and started asking my older sisters. Point...it is hereditary. Bigger point is don't waste time feeling guilty if it came from your side of the family. All families have all kinds of things that can crop up. It's the luck of the genetic draw.
I know each case is unique. I would say that my son's case falls into the medium category. Our family life has been great and we were able to cope with this condition and thrive in our love and fun times together. It's really up to you to set the tone for how this is going to unfold. You are your child's strongest and most constant advocate. You will occasionally have to wield your mama or papa bear to the outside world, educate well meaning friends and especially relatives, be there for the emotional strength your child may have to borrow from you when theirs is tested. Hang in there and good luck in your families journey.
Patty
I remember exactly where I was when I voiced my first concern to a neighbor (a mother of eight) about why my son was doing something that caught my eye. She calmed my fear by recanting how one of her sons used to do something similar and it was just how kids can be. Still, I do remember that as the first time I felt worried. He was five. He had lots of symptoms from then until fifth grade when his tics became very active. That's when we hooked up with a formal diagnosis. Some of those early things:
Looking up to the side with his eyes-clenching his stomach-smelling things-being tactilely sensitive (couldn't handle tags in his shirts, didn't like the way shirts felt on him and would shift them around, couldn't stand the seams of socks under his toes, etc.)-doing a little yelp under his breath-if I waited too long to cut his bangs he would get a head shake as if his hair was bothering him-etc. These things weren't all at the same time. One would show up gradually and one would recess. There were times he did nothing and I am sure times I didn't notice something he knew he had to do. Mostly, he seemed not bothered by it at all, but it was constantly on my radar. Us mothers!! If he was relaxed watching T.V. a tic would be very active.
I know one of the worst parts of Tourettes can be worrying about what might be ahead. Looking back my son and our family have had a wonderful life and his tics are not the first or even the tenth thing I think of when I look back. If only I had been able to look in a crystal ball and know it would be alright I could have coped so much better! I wish I could have had a little more faith instead of fretting, but I suppose that is being a mother. I also like to hope that my vigilance in getting him the right help and helping him understand where these symptoms fit into who he is helped to get him to such a good place. There are a lot of associated conditions that are often found in patients with Tourettes. The one that worried my more than tics was that a lot of patients also have OCD. That didn't end up being a problem for him. ADD and ADHD are also more prevalent. I would say my son's overall profile included some things like weak small hand dexterity (he couldn't tie his shoe until third grade), bad handwriting, awful spelling, kind of clumsy and didn't excel at sports. Unfortunately, grade school is the nuts and bolts of education and the drive is to stay inside the lines, write neatly, spell correctly and do math times tables FAST. He had a great second grade teacher who told me at his conference that he was very bright and that she felt he would peak in college not grade school. I didn't really know what she exactly meant, but there were times later on that I clung to that little grain of hope. Another thing I was told along the way was that often kids outgrow this.
My son has ADD for sure. I was too scared to try stimulant drug therapy because they can provoke tics. He also had very bad headaches from about fifth grade through ninth. I think those were the most difficult thing we dealt with. At times I think physical tics like stretching his neck would trigger headaches. An I.E.P. in school helped as did working with a really great nuero-phsycologist to help pinpoint his learning difficulties and give us good advice. Our number one priority was to keep his self esteem intact. He tested gifted and his doctor predicted that with his ADD and intelligence he was probably bored in school. They were talking solar system and he was thinking about the big bang theory. Yet, with his learning issues he wasn't TAG material.
His tics did abate and almost were gone by ninth grade. I feel like they always lurk under the surface, but we were in a very good place by ninth grade. In tenth grade he did go on Concerta (a form of Ritalin). That, and maturity kicking in, his grades soared. His social life improved greatly. I think during those early years he was on the one hand very mature, but yet in sixth grade was still sweet and young acting like he skipped in the halls (not realizing the social cost of this). There have been times that the Concerta does provoke a mild tic, but taking Tennex in concert with it seems to help minimize it.
My son is in his first year at college. He just LOVES it!! His teacher was right.....he is majoring in chemical engineering and was a 4.0 his entire first year. He has been put in the honors program for next year. I tell you...he barely passed the ninth grade and his senior year had to take a night class and correspondence class to re-do those grades, plus take a very heavy load for that years requirements. He really had to fight to get there, but it makes him so much more aware of how great it is and never do I worry he won't continue working so hard. He has had two serious girlfriends and I never asked him if he told them about his Tourettes. Again, others often are not as aware as we are.
To note: both my two daughters showed signs of tics in about second grade. They were gone by fourth and I believe they were what they call transient tics. Also, when I was in the fifth grade I had facial grimaces. Being the sixties they sent me to a psychiatrist for one session. I guess according to my next sister up - they blamed it on her stressing me out. It went away and I truly had no memory of it. It's not like when I got married I told my husband "when I was in fifth grade I had some tic problem for a while". It wasn't until my son's diagnosis that I remembered and started asking my older sisters. Point...it is hereditary. Bigger point is don't waste time feeling guilty if it came from your side of the family. All families have all kinds of things that can crop up. It's the luck of the genetic draw.
I know each case is unique. I would say that my son's case falls into the medium category. Our family life has been great and we were able to cope with this condition and thrive in our love and fun times together. It's really up to you to set the tone for how this is going to unfold. You are your child's strongest and most constant advocate. You will occasionally have to wield your mama or papa bear to the outside world, educate well meaning friends and especially relatives, be there for the emotional strength your child may have to borrow from you when theirs is tested. Hang in there and good luck in your families journey.
Patty
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God Bless you and a great big hug,
Zepora
I don't think enough is known about Tourettes at this stage, and I often wonder how much research is going on.
I agree that so much of our stress and worry as parents is wondering what is ahead. I often think "if only i knew it was all going to be o.k. I'd be o.k. now."
My son is 8 and has just recently been diagnosed, though I sort of had suspicions. My older brother had tourettes too, but he is now 52 and it was abit of a taboo subject back when he was a kid. It has never been talked about, however I would like to talk to him about it now that my own son has it. The reason I know my brother has this is because I personally did research many years ago, so at least it made it easier for me to pick up with my son.
I want to thank you for the lovely words you wrote, and to tell you that your post will surely give mums and dads abit of faith... we all need that don't we?
Lyn.
I'm sorry for babbling on and probably not making any sense. I have just come across this support group and will continue to come back.
Thank you!
I think the social part of our kids is very important, TS or not.
On the other hand my son who does have tourettes is the most out going child,,, he has heaps of friends and can just walk up to anyone and ask if he can play... i admire that... gee when I was a kid I could never have been so bold, ha.
Being a parent opens us up to a lot of heartache in life, regardless iof if our child has a problem or not. It's because we love them so much and want them to have a wonderful life... but we should remember that quite often the kids grow and find different friends, or just become more comfortable within themselves. Most of the time everything is ok. I know I cried alot over my daughter {when she couldn't see me ofcourse} and now I look back and wonder why? ... she is in highschool and has a group of 29 friends and they all hang out together.
All the best to you... and I agree this support group is a godsend... we all need support don't we?
My daughter is starting at the middle school this September. I'm hoping this will be an opportunity for her to meet a whole new group of kids and maybe make a new friend or two. I'm keeping my fingers crossed!!!
I've come acrossed a local group, ran by a women who is a Ph.D. It meets for 8 weeks and is a Social Skills Group. They do role playing and cover things like how to approach new peers, how to handle certain situations, etc. They have separate groups for boys and girls and are broken up by age. I plan on signing my daughter up and am hoping she will get alot out of the class.