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Just needed some encouragement


CSP

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I am having a hard time with my son's eye tic which has moved to his head too. I'm not used to this kind of motor tics with him, and I feel so bad, because I find it hard to look at him. You would think I would be happy the vocals are really down to almost nothing. I guess I got comfortable with the vocals and now I'm watching my son look like Kramer, from Seinfeld.

 

Please pass along any encouragement my way, I feel so bad turning my head away from him.

 

Thanks everyone,

C.P.

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C.P.,

:) I'm right there with you.... Maybe you could go re-read all the lovely things you posted about him?....

 

I know we are dealing with pretty much the same type tics, always vocal, and now the eye/head. I'm wondering, with regard to all the things you were implementing in the past year, ..have you changed or stopped anything that you may not realize? (aside from the recent new things, like the taurine and salmon oil). I mean are following the same type regimen, or backsliding on anything dietary, etc. that seemed to be working for him before? Just figured I'd throw that out.

 

Hugs,

Faith

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((((((((HUGS))))))))))))))) CP. I am so sorry for what you are going thru right now.. I was a bit down today too as I got a call from my daughter's teacher who said that she ticcing all day today. She wanted to mention it as she thought my daughter was doing better and wanted to know what happenned to make it worse again. I told her I had no clue..

 

Just wanted to offer you support and some cyber hugs. We are all right here with you.. feel free to vent if you need to.

 

-Nan

 

P.S: I have turned my head away from my daughter a few times too in order to stop myself from saying something. So, don't feel bad.

 

 

 

 

I am having a hard time with my son's eye tic which has moved to his head too. I'm not used to this kind of motor tics with him, and I feel so bad, because I find it hard to look at him. You would think I would be happy the vocals are really down to almost nothing. I guess I got comfortable with the vocals and now I'm watching my son look like Kramer, from Seinfeld.

 

Please pass along any encouragement my way, I feel so bad turning my head away from him.

 

Thanks everyone,

C.P.

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C.P.,

 

I feel your pain.

 

Has he been sick recently? Could he be coming down with something?

 

It seems like some of our kids consistently react right before showing symptoms of illness, some during, and some after.

My son's tics had been gone for about a month. He cought something and still didn't tic (although he was somewhat sensitive). Then he started ticcing again (slight shaking of the head as in "no") and I noticed large swollen lymph nodes in his neck. Then I noticed a golf ball sized one in my neck, and my sister (I see her once a week) has them too. I guess what I'm saying is that three of us having it means it has to be a virus or bacteria, and it set him off again.

 

Can you rule out a low grade infection?

 

Tami

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C.P.,

I hear ya! [big hug]

We saw the tics come back too after being tic free for three months. We over-used the enzymes, I think, and ate out too much. Lots of stuff was going on: the excitement of the holidays, a visiting uncle, a week off of school.... some dietary infractions....

Maybe it will be short lived and it is just a little excitement/anxiety that will wind down soon?

It is frustrating to see them come back when you work so hard to keep them away. Sometimes the momxiety is worse than the tics themselves!

Caryn

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Every time you look into that child's face think about the love you have for your baby....not the tics that have come on. When it was happening to my son the first few times I would break into tears at the dinner table. I then told myself that I had to be what made him stronger (to deal with other children's comments). I would stare into his eyes while he told me a story (with head jerking like crazy) and the whole time I would be thinking of every reason that made him so special! It helps!!!

 

Sorry you are feeling this way!!!!! Diet changes worked for us on the head jerking......we had already eliminated most artificials, but were high salicylate....once we reduced these the head shakes went away (1-2 weeks???).......I hope your child's do soon!!!!

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I am sending positive thoughts your way! I understand exactly how you feel. And I do not think you are horrible to turn away. I sometimes feel the tics really are harder on the moms!!! You are doing what you need to do so that you can move forward and do what is best for your child.

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Hi CSP

I agree with Emma it's harder on the moms. Don't feel bad by turning away . I always felt the eye tics where the worst. I use to look and my daughter felt me looking and that upset her. So, your doing the right thing. It will go away soon, my thoughts are with you. Maryann

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I am sending positive thoughts your way! I understand exactly how you feel. And I do not think you are horrible to turn away. I sometimes feel the tics really are harder on the moms!!! You are doing what you need to do so that you can move forward and do what is best for your child.

What is all this about the tics being harder on the moms??? What about the dads? I am feeling like a big sissy here today! I am glad my wife is stronger then me on this issue. We couldn't be the same, she feels very sad when our son tics, but she knows how it affects me and tries to be the equalizer. She is very supportive with all our diet/specialists/tests/etc. that I have initiated and has seen the results.

One Friday evening in August we sat down for dinner and had my mom over. Friday night is a special dinner for us, always has been, but my son was doing some very weird ticcing with his nose and eyes when his twin sister said to him, "you are freaking me out with the way your nose is moving". At that point I burst into tears and had to excuse myself. Since then I have vowed never to let my son see me anxious or emotional over his tics. I hate the fact it affects me so much, but we can't always change the way we are.

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CP,

 

So sorry that your son is ticcing and you are having a hard time. I feel your pain as i have been there. When my son was at his worst, i avoided looking at him as much as possible, as the ticcing upsetted me more than him. And the last thing i wanted to do is make him feel self conscious and feel bad over something he can't control. What helped me was to have my husband spend more time with my kids instead of me, so i can get a break.

 

Has your son tried CST? We have pretty good & immediate result from it.

 

I will keep you & your son in my prayer. I know this too will pass. I just hope the neck tic is not hurting him or giving him a headache. The magnesium creme is really helpful for my son when he had the neck tic.

 

God bless.

 

Pat

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I can't thank you all enough, you all are so wonderful. ((((((((((((all))))))))))))))

 

I was so taken back by my son's new tic, only because vocals are the big problem, and he hardly ever has motor tics, that I was so ashamed for feeling the need to look away.

 

Thurs. evening I thought he was choking because of the face he was making while eating.

 

And... oh, Lenny, you'll love this one... my 16yo daughter who has never said anything to him about his vocals, and her bedroom is the one upstairs with him. Even when he was at his worst (screeming) she would NOT shut her door so do her homework, came down to breakfast yesterday morning and told me she felt like punching him in the face, to get him to stop.

 

BTW, Lenny, if my husband had not had TS as a child he would have been devastated. Father and son very close on this end.

 

I would not say he is ticcing worst then normal he is just changing the tic, thats what caught me off guard. Husband said he only made one vocal all evening.

 

Tracy, I have a huge portrait of him when he was 8yo I can't tell you how many times I look at that picture during the day, with his big puppy dog eyes.

 

Thanks again for all the support, this forum is a huge reason we do not want to medicate, and you all are great reinforcers.

 

God Bless,

C.P.

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Something to think about which may help.............

 

As I sat on the couch next to the fire this morning with my cup of coffee hoping to spend a few quite moments alone with God in thought and prayer, my older son came bounding down the stairs with recorder in hand, plopped down next to me shoulder to shoulder, and started to blare out loud, beginner, squeaky tunes right in my ear. :blink: Then, my 5 year old came running down too and crawled up in my lap and snuggled with me under the blanket while we sat there together listening to this wonderful music. :lol: Ahhhh.............. nirvana. Although I got no quiet time, I was there with my sons and I began to think of a freind from High School, Holly. See, my friend lost her 5 year old daughter to a rare cancer this past summer. She was a healthy little girl when they noticed one day she wasn't putting weight on her one leg.. long story short she was diagnosed with cancer. (her story at www.paytonwright.org)

Anyway, her parents had to watch their little girl suffer and slowly deteriorate until she passed this past May. I can think of no heavier burden to bear. What would her parents give to be in our shoes? What would they give to have their daughter here and just "have tics."? I know we have been irritated to hear Doctors say, "just tics." But, really, they are right. They are "just tics." They have no terminal disease. I began to feel ashamed at how "woe is me" I have felt about this at times. Yes, I am not saying it is not hard and heartbreaking, it is. We love our kids and want the best for them and hate to see they have to endure any hardships. But.. we HAVE our kids here with us. We can hold them, see their faces and smiles, enjoy them...hear their laughter, share in their pain. What would parents who have lost their kids give to be able to do that? Then I remembered a news story I saw last night about a dying 10 year old girl who just wanted to see her Dad (in Iraq) before she died. I looked at her little, almost lifeless body lying in a bed waiting..just trying to hold on....... I squeezed my 5 year old tighter to me, and began to rejoice in the squeaky sounds of my sons recorder blaring in my ear next to me. :wub: Thank you God, thank-you, thank-you....... thank-you for my kids... thank you for the honor and priveledge to have them here with me, every day with them is a gift and blessing.......tics and all!

 

God Bless you all and enjoy your kids!

 

Kelly

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