There is light at the end of the tunnel

[bmom]

Just want to say thank you Lynsey. Your post and info. has helped greatly. You sound much like me. I depend on my mom, prayer, and sometimes a good cry!!!

[patty]

lynsey,

 

So glad that you post about your sons and sharing your experience with us.

 

I cannot tell you how worry i have been over the last 21/2 years since my son's sudden onset of tics. I totally understand how you got sick with stomach problems. I hope that will get better as you are handling your stress better. Via your email, you sound like you are at a good place.

 

I too have been developing nerve pain from neck to shoulder to my elbow, along with anxiety and other issues. I am just overwhelmed by worry most of the time and it is worse when my son is waxing while we are on treatment. The thing that i feel so bad about is when he is waxing and does something kind of strange, I just don't want to be around him because it spikes my anxiety.

 

One question, how long are your boys wax & wane cycle?

 

Anyways, want to say welcome and thx for your encouraging post.

 

Pat

[lynsey]

Hi Patty

 

I think many mothers with children who have TS have similar reactions as you and I. My friend (whose son had very

severe TS - was on many medications, and now is a senior in highschool and is much much better now, and is being taken off meds,

by the way) - she and I used to say that every time we saw a new tic, we got that kicked-in-the-stomach feeling.

Like, oh no, here we go again. I was always worried the most that they would be ostracized for their tics. My mother used

to say to me, god gave you these children because he knew you were the best mother for them and would help them

in whatever way they needed. But I told her, this is killing me, I don't think I'm up for the job! And she said, yes you

are - those children are beautiful and you are doing a wonderful job. I needed her wonderful support to get me through.

 

My kids tics were all different. Some would appear for a week, and then wane. Some for two weeks, and then wane.

Some were 3 weeks or more. Not many lasted more than a month. The severest part of the waxing period was usually

less than a week, and then it was slowly diminishing. But often, just as I was going, "ahh, it's gone", another new tic would

appear, and the cycle would begin again. I finally got to trust that the tic, whatever it was, would be gone in a matter of time.

But this is not always the case with every child with TS. Some tics linger for a longer period. After observing your child through

many tics, and many waxes and wanes, you will soon get to know what is typical for him or her.

 

When you say you didn't want to be around him because it spikes your anxiety, I know how you feel. At first I used to

obsessively watch them to see how bad the tic was. Then I thought - this is really killing me - so I would force myself not

to look. They were no where near as bothered by their tic as I was. I reminded myself of that constantly. Sometimes

(I'm even ashamed to say), when I saw what looked to be a new, particularly strange tic, I would blurt out "what are you

doing? Stop that!" You're emotionally and physically completely sapped and depleted, and sometimes it pushes

you to say and do things you never imagine you would....thankfully they never held it against me

 

 

behaviour they were exhibiting

[Toms_Mom]

Lynsey,

I have a couple of questions if you don't mind. My son's onset of tics started at 6 1/2 -about a year and a half ago. Like you mentioned, I used to watch him constantly to see how he was doing, looking for improvement, to see if certain supplements were working etc. The past few months however, I have been avoiding looking at him. I don't know exactly when or why I started doing this, but I feel so guilty about it. I get such anxiety watching him tic I just try to avoid looking at him- which means I am not spending time doing things with him that I used to. The head tics are the ones that bother/worry me the most. When a new one starts up I feel my stomach just clench and I break out in a sweat. I am trying to get to a point where I can feel like "this isn't the end of the world and he is going to be fine- he will most likely get better in the teen years" but I haven't gotten there yet.

 

At what point did you stop worrying so much and realize your boys were going to be ok? Also, at what age did you start the clonidine? The amino acids all seem to make my sons tics spike so we are limited as far as supplements go. I would like to try the fish oil, but after hearing about so many kids here not doing well on it, I am hesitant. I have thought of trying the flax oil though. Thanks so much for listening.

 

Mary

[lynsey]

Hi Mary

 

What you did sounds very familiar to me. At first, I would obsessively watch both my sons and their ticcing. It was absurd,

but in some dark recesses of my mind, I thought by watching them.....I don't know.....maybe I would "will" their tics away

by mental telepathy or something. I would watch their tics until they stopped!! Absurd, I know, but you go through some crazy emotions.

Then I realized I was literally devastating myself physically and emotionally by doing this - certainly nothing good was coming of it.

Their tics would run their course, regardless if I watched them or not. When I realized this, I went to the other extreme. I forced myself

NOT to look. I was glad when they went to school, because I got a mental break from it all. I felt so guilty for feeling this way! What

kind of mother was I? But I knew I loved them deeply, and that I was human. They needed to learn how to interact with people

at school. It was as simple as that. And I needed to stop hovering over them.

(Then it was like I was waiting for a "shoe" to drop. I don't know what I was waiting for, but I expected something

catastrophic to happen, because I wasn't "watching". Of course, nothing catastrophic happened). They got through each day just fine, they played with

their friends, they had good days and some not-so-good days at school, like every other kid. In short, they were normal. But every time

I saw a new tic, it was the same old kicked-in-the-gut feeling. I had to stop myself from my intense reactions to each new tic.

Each tic would make me frightened again. Are kids gonna see this and make fun of them? Are they going to get worse? But

I had to stop it, because it was doing me no good. I needed to be a mother to these boys, I needed for them to see I was

strong, they were depending on me. But you know what I discovered? These wonderful boys had a strength that I did not posess.

Maybe they were too young and too innocent to know about all the worst possibilities I was imagining in my mind. But good for

them. Once I said to the pre-kindergarten teacher, with tears in my eyes, "he has a lot of tics, but just ignore them". She said

to me, "tons of kids have tics. Why don't you just ignore them and stop stressing? You know what they say, ignorance is

bliss". I thought it was the stupidist thing anyone could have ever said to me, but now I realize the wisdom in what she was saying.

But sadly it took me a long time - years - before my worry lessened and I realized they would be OK, no matter what. Probably my worst years

were pre-kindergarten to grade 6, in terms of worrying. It took me a long time to settle down. I don't recommend any one else

taking this long (but I felt it was out of my control).

 

I started looking at other mothers whose children ticced, and to far greater degrees than my own. How did they react? How did they

interact with their child? and you know what I found? Most of them had no idea about TS, and they DIDN'T WANT TO KNOW.

They certainly didn't want their child diagnosed with it. So they ignored the tics, and

were just going on about their life, and if their child had some tics, so be it. Well, I decided I would adopt that attitude,

but also be knowledgeable on how I could help my child to reduce his tics. So I started them on Clonodine fairly young.

I think it was in the first grade. They took the clonodine at low dose, all throughout their elementary school years.

It didn't eliminate their ticcing completely, but I felt it helped reduce the severity and length of waxing period.

 

One last thing I want to tell you. As I mentioned before, my husband had severe tics, and was teased terribly in school

(this was my fear for my boys). I asked my mother-in-law, how did you cope? Because I feel like I'm falling apart!

She said, "what choice did I have? I had to keep going to work, I had to keep going on with my life as a mother.

My heart ached for him, but there was nothing I could do." Well, Mary, things are very different now. We have many things

we can do - (I even thought, if their tics were bad enough, I could home-school for a while. Their TS doctor talked me

out of this. He said, it was vitally important for them to go to school, to learn how to socialize. He said it was much better

for them to be on medications and go to school, then to stay at home. He told me school is vital

for a child's development). So this is why I started them on the Clonodine. And I've never regretted it.

Also, I was afraid to try all these supplements, because many of them I read would aggravate tics in some

children. I found better results by eliminating artificial colors and flavors from their diet, as little "junk" food

as possible, and healthy eating in general.

 

Don't be hard on yourself. You are first and foremost a mother, who cares deeply about her child and are

doing the best you can for him. By the way, mine are 18 and 15 now, and I still have a "small" physical reaction

when I see tics....can't help it

[CSP]

lynsey,

 

i have been out of town, buty saw this post and wanted to thank you. We are going on 3 years with my son who will be 15yo in 2 weeks. I was so warmed with how you discribed your feelings, as I have been dealing with the same.

 

I'm seeing in myself a sense of calm too, and so happy I'm not the only one who has taken such a long time getting to this point. Most of the calm is coming from my son. He just has been dealing with this in such a way I can't even explain. I'm just amazed at his baseball skills, and he told me today he wants to go to the homecoming dance. Not taking a girl just going with friends, but that is a hugh jump from what I was thinking. I thought he would never do anything like this, to scared.

 

I just wanted to ask I hope you had not mentioned this I just don't have time to check all the posts I've missed, but was there an increase in the waxing during times of rapid growth?

 

Thanks again for sharing,

CP

[lynsey]

Hi CP

 

thanks for your kind words about my posts, I'm happy it helps others to know they are going through

the same feelings, emotions....

 

I can't say that I found their tics increased during times of rapid growth, but having said that, my kids were

on low-dose of Clonodine, so that could have been muting their tendency to tic. It could very well be that tics

increase during times of rapid growth, as the brain is developing at an astronomical rate during

these times, and it would make sense that this might increase tics temporarily. But, again, TS doesn't

follow any "rules" regarding how it presents and how it progresses, it is completely unique to each

child. My husband's tics were much much worse during his childhood and diminished during his

adolescence, which our TS doctor told is is "generally, but not always" the way it goes.

I found my sons tics increased when the seasons changed, when school started, and mid-way

through the school year.....don't know if you find this too.

 

You said your son has been dealing with this in a way that you can't even explain. You said that

beautifully!! I found that to be true for both my sons. I said they had an "inner strength", at their

young ages, that I lacked. They are truly bright shining stars, these children, (yours, mine, and all kids

with TS) - we at first think this TS is a huge flaw, a disability, but God gives these children something special. They will grow up

to be unique unlike any other child you have seen in terms of inner strength, understanding character, kindness, empathy for others,

all the important things you want your child to have. Your son sounds wonderful, amazing, yes - they surprise you,

don't they? He sounds just like my youngest, and I get strength from them, as you do too!

[Toms_Mom]

Lynsey,

I can't thank you enough for your kind words and encouragement. I'm hoping I can learn from your experience and stop worrying so much! I have thought about homeschooling too, but thought to myself "why am I trying to hold him back when he is happy and content at school?" He needs to have a life. Not that i'm against homeschooling- i did homeschool my older 3 for a while when they were younger and it was great, but to homeschool my youngest at home alone didn't seem right. He wouldn't have siblings at home to have fun with ( they are 17,15 and 13) and he has wonderful friends at a small Christian school. His teachers have been great and I dont think they have noticed much. Like you said when you walk into that 1st and 2nd grade classroom there are so many kids doing wierd things, acting hyper and silly that I don't think my son stands out at all.

 

What you said about some parents just ignoring the tics is something I've seen as well. I wish I could be that oblivious! To tell you the truth that's pretty much the attitude my husband takes and I really envy his ability to do that. The tics don't bother him one bit and he just goes on with life and says " they come, they go and one day he'll outgrow this" If hes out with my son somewhere and I call him and say "hows he doing? " ( and i know this is crazy for me to do!) he says "perfectly fine" and I'll say "you know what I mean- has he been doing that neck thing a lot?" and he'll say "I don't know - I'm not watching him - I'm watching the game!"

 

Actually, my husband has been after me lately to loosen up on the diet. We've sort of agreed to do exactly what you did. Avoid artificial ingred. and colors , and preservative and continue to feed him a healthy organic diet. But when we're out or visiting people to allow him to eat like the rest of the family. We're also considering clonodine.

 

Your posting has been a tremendous amount of help for me and I really appreciate it!

 

Mary

[lynsey]

Lynsey,

I can't thank you enough for your kind words and encouragement. I'm hoping I can learn from your experience and stop worrying so much! I have thought about homeschooling too, but thought to myself "why am I trying to hold him back when he is happy and content at school?" He needs to have a life. Not that i'm against homeschooling- i did homeschool my older 3 for a while when they were younger and it was great, but to homeschool my youngest at home alone didn't seem right. He wouldn't have siblings at home to have fun with ( they are 17,15 and 13) and he has wonderful friends at a small Christian school. His teachers have been great and I dont think they have noticed much. Like you said when you walk into that 1st and 2nd grade classroom there are so many kids doing wierd things, acting hyper and silly that I don't think my son stands out at all.

 

What you said about some parents just ignoring the tics is something I've seen as well. I wish I could be that oblivious! To tell you the truth that's pretty much the attitude my husband takes and I really envy his ability to do that. The tics don't bother him one bit and he just goes on with life and says " they come, they go and one day he'll outgrow this" If hes out with my son somewhere and I call him and say "hows he doing? " ( and i know this is crazy for me to do!) he says "perfectly fine" and I'll say "you know what I mean- has he been doing that neck thing a lot?" and he'll say "I don't know - I'm not watching him - I'm watching the game!"

 

Actually, my husband has been after me lately to loosen up on the diet. We've sort of agreed to do exactly what you did. Avoid artificial ingred. and colors , and preservative and continue to feed him a healthy organic diet. But when we're out or visiting people to allow him to eat like the rest of the family. We're also considering clonodine.

 

Your posting has been a tremendous amount of help for me and I really appreciate it!

 

Mary

 

 

Hi Mary

 

Oh my goodness, your husband sounds EXACTLY like my husband! (and you sound just like me, god bless you!!)

Your husband had the same attitude, same responses. What a godsend they are, these husbands of ours. I NEEDED to hear the things that

my husband said. I needed to hear him "minimize" the things I thought were catastrophic. I needed him to

remind me that no matter what, we had to live a normal life, it was essential for not just me, but our children!

I thanked God many times for my husband, during these times. Where would I have been if my husband was

an emotional wreck like me? I needed him to say, "it's nothing Lyn! There's fine!" (but look at that tic! I would say)

so what?!! he would respond. It's nothing. It'll go away just like the rest of them. Would you quit worrying?"

 

When you marry a man, you never know - you can't possibly know - how he will be during thesestressful times of life when

you are faced with life's tremendous difficulties, especially as regards to your children. How thankful I was that

he was a perfect opposite to me....calm, rational, not obsessive, maintaining his sense of humor and maintaining our

"normal" life. I don't think this was an accident by the way - God gives us these challenges, and he gives us the

people to help us with these challenges (my husband, my parents, this forum!!) don't you think?

You are a special person Mary, I'm glad to have met you here

[ilovedogs]

I agree, Lynsey, about the husband thing! My dh will get upset over every little thing that goes wrong. He is very prone to being negative,etc. except when it comes to our son. Whenever I express concern and say that I'm worried, he comes back with, "Well, I'm not...he'll be fine!" He doesn't even notice the tics the way I do. I see every single one and I watch the frequency, etc. If I say that I saw a new one starting up, my dh is like,"Really, I hadn't noticed!" Too funny.

 

But, like I said before: the tics don't bother ME as much as the anxiety issues. Those are the things that bug me the most. Many times I wonder if it's my fault, etc, since we homeschool and he's an only child. But, I remind myself that he has lots of friends, he goes to classes at a Co-op with other kids his age, he plays many sports with kids his age, and he is VERY friendly and will talk to anyone who wants to talk to him. And, if you have a football in your hand, you'll be his very best friend. Yesterday he was playing football with our neighbors and their family and no one was younger than 13, except my son! He had a blast! Age doesn't matter to him when it comes to sports.

 

My dh and I are supposed to be going on vacation from the 21st-26th of Oct. and my mom is coming out to stay with my ds. I am always concerned about leaving ds b/c of his anxiety issues. Every year (we go away every year together) I go through this and I make myself sick with worrying that he won't do well without me and that he'll have meltdowns with my mom. Every year he does fine! And, of course, this year is no different. I'm dreading the trip already. My mom is also a great strength in my life b/c she is not a worrier at all. She is a great grandmother and her laid back attitude really helps my son relax and I think he knows that grandma is fun,etc. She's one of those grandmothers who likes to rollerblade, bike ride, hike, go for walks, etc. So, she doesn't just sit at home with him, she gets involved and they have fun. Anyway, I'm sure he'll be fine and he'll survive no matter what anyway(even if he cries for 5 days straight!).

 

Oh, wow! I got off topic but I have to say that I am enjoying this thread b/c it makes me realize that I'm not the only mom who thinks the way I do!!!

 

Bonnie

[lynsey]

I agree, Lynsey, about the husband thing! My dh will get upset over every little thing that goes wrong. He is very prone to being negative,etc. except when it comes to our son. Whenever I express concern and say that I'm worried, he comes back with, "Well, I'm not...he'll be fine!" He doesn't even notice the tics the way I do. I see every single one and I watch the frequency, etc. If I say that I saw a new one starting up, my dh is like,"Really, I hadn't noticed!" Too funny.

 

But, like I said before: the tics don't bother ME as much as the anxiety issues. Those are the things that bug me the most. Many times I wonder if it's my fault, etc, since we homeschool and he's an only child. But, I remind myself that he has lots of friends, he goes to classes at a Co-op with other kids his age, he plays many sports with kids his age, and he is VERY friendly and will talk to anyone who wants to talk to him. And, if you have a football in your hand, you'll be his very best friend. Yesterday he was playing football with our neighbors and their family and no one was younger than 13, except my son! He had a blast! Age doesn't matter to him when it comes to sports.

 

My dh and I are supposed to be going on vacation from the 21st-26th of Oct. and my mom is coming out to stay with my ds. I am always concerned about leaving ds b/c of his anxiety issues. Every year (we go away every year together) I go through this and I make myself sick with worrying that he won't do well without me and that he'll have meltdowns with my mom. Every year he does fine! And, of course, this year is no different. I'm dreading the trip already. My mom is also a great strength in my life b/c she is not a worrier at all. She is a great grandmother and her laid back attitude really helps my son relax and I think he knows that grandma is fun,etc. She's one of those grandmothers who likes to rollerblade, bike ride, hike, go for walks, etc. So, she doesn't just sit at home with him, she gets involved and they have fun. Anyway, I'm sure he'll be fine and he'll survive no matter what anyway(even if he cries for 5 days straight!).

 

Oh, wow! I got off topic but I have to say that I am enjoying this thread b/c it makes me realize that I'm not the only mom who thinks the way I do!!!

 

Bonnie

 

 

 

Bonnie

 

I think these "off-topic" things are a super-important part of living with someone

who has TS. It is so important for us to share these things. These are the "human"

issues. How we react, how our husband's react, what we do to maintain our sanity,

and maintain a "regular life". We need to know what others go through, to see that

what we are going through is just the same as others.

Both my sons have severe anxiety, but they have gotten much better over the

years. My youngest had such separation anxiety, he cried every day at school

for YEARS. He got better around grade 5, and now he has a inner strength that

amazes me.

Bonnie, I remember when I took my 6 yr old son to a birthday party of a friend -

she had the party at a recreation centre, complete with a clown and all kinds of fun.

My son cried non-stop. The other 20 kids sat around the clown, completely happy,

while my son sat by the wall (next to me) and cried and cried. He was so anxious. I thought, he cries

at a birthday party??? It was so hard. Luckily, several understanding moms came over to me

and told me, don't sweat it, he's a cutie, he'll get over it. God puts understanding people in

your life at the moment you need it most...

[mommyof2]

wow reading this really hit home with me... My son had such separation anxiety up until about 2 nd grade He cried when i left him almost everyday at preschool and in k-garden i found i could not take him to school...he could not separate but getting on the bus at our house was better... He had a kissing hand i made him in his pocket everyday through 2nd grade and in 3rd kept it in his bookbag incase he needed it. Now he is better at going to school... except for the teasing he gets he enjoys school

mary

[CSP]

Thanks to all, everyone really has cont. to be a wonderful support no matter what the age of our kids.

 

Lyn, my husband has TS too and has been a rock!!! I use to think he was so far in the TS closet he was in Narnia. I see Narnia is where I would like to go.

 

DS is taking his life where he wants to go and I think he really does not worry about anything. He just plays and does all the things kids do. He plans to try out for the high school baseball team, that will be an all winter tryout after school and Sat. We pretty much know he wont make the team, too many kids in this town with only one high school. But if he did I'll be posting the biggest miracle thread you all have ever seen.

 

I love to watch how the other boys just respect him for his talent, they don't notice the TS. It really makes it so much easier to deal with it when your child does well in something. One can see God didn't forget to give them a talent along with the TS.

 

God Bless,

CP

[lynsey]

Dear Mary and CP

 

Mary, you mentioned that except for the teasing he gets at school, he otherwise enjoys school.

I would not put up with the teasing! I would go to the school principal and say, this should

not be happening, you should make this stop immediately. I would get your son to tell you names of

who is teasing him, and I would put the kaibosh on the teasing, pronto. This is an era of "zero tolerance".

I have intervened on my son's behalf MANY times. Some of the more aggressive episodes of

teasing were handled by giving the offender a suspension of anywhere of 1-3 days. The teasing issues were addressed right away,

and believe me, they stopped. I didn't care if the principal told the teasing student that the parents had called him,

I WANTED them to know that there was a mother lioness behind my son, and damned if I was going

to let them get away with teasing or bullying. Thereafter, they treated my sons with the respect they deserved,

and if they saw me in the school, it was "Hello Mrs.", they treated me respectfully too.

Those that demand respect, get it. Don't be afraid to intervene if you think the teasing is excessive.

He doesn't have to put up with it.

 

Also, the "routine" you used with the "kissing hand" - absolutely PERFECT. What you did was you offered him a strategy

to deal with an anxious situation. This is "cognitive behaviour therapy". You instinctively did the absolute

right thing, and soon enough, he didn't even need this strategy, he slowly learned to handle it as he matured.

BRAVO TO YOU! You are a very instinctual and smart mom and your son is blessed to have you.

 

CP, yes it is wonderful when you see other friends appreciate your child for all the qualities and talents they possess.

Most children really do ignore the tics, they get used to seeing them, and then they don't pay attention to them any more

and they just look at the "great friend" they have.

Did you notice the TS in your husband when you met him? My husband wasn't ticcing when I met him, but later on he

did, and when I asked him what it was, he told me he was afraid to tell me about it before because maybe I wouldn't

love him. Oh my goodness, he had so many wonderful qualities, I didn't care at all about the TS, but only that it

hurt his neck sometimes. I never met anyone like him. He's never gotten angry at me (in 20 years marriage!), he's gentle, he's

hardworking, he's devoted.....all the things I wanted in a man.

[CSP]

lynsey,

 

No, my DH did not tic, really still does not tic. He has 2 vocal words, "BUDDY" and "LOVE" He put these words in between sentences. No body tics at all, but did have them when he was younger. He did not know he had TS his family told him he had "Habits."

 

 

Yes, my husband is a very hard worker too, and a wonderful father. Always making the kids laugh, and giving me the most tight hugs. I'm hoping our son will be just like him.

 

Did your husband's father have ts too? My father-in-law does, but a very smart man and retired as head of IRS. He is very healthy and enjoys golf every day in CA. I'm very hopeful.

 

CP