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No more tics....update on my son


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Hi all,

It has been a long journey for us and our son. He started tics when he was 7, he is now 11 and is doing so good. We were coming back from the Oregon Coast today and was thinking about this same time 4 years ago when he was going into grade 3 what a difference he was. His words will never leave me: "daddy, I am going to be in a new school tomorrow aren't I?" His tics were bad, body jerks, arm movements....his whole body moved with uncontrollable jerks. He is now calm and I am so much better as well! This site has done wonders, we did the blood tests, we did the NAET, but finally we found out what the main issue was. After we put him on a gluten/wheat free diet, everything started to become clear. We still keep his diet clean, still give him Kids Calm every night, still give him Bonnies supps. twice a day and as of today I can say he is doing wonderful. Thanks all for you help, and for all those that can't sleep and are depressed and cry for your child on a daily basis, there is hope and things will get better, love them and hold them and tell them you love them every day no matter what they are like. I had that sick feeling in my stomach for years, wandering when he got off the school bus how he would be, oh how I wish I could have those days back, but I can't. I had the darkest days of my life the last several years, between God and my endless search for help I feel I am now prepared to help others by telling them there is hope and it will get better. It may not be gluten free, but it will be something that you will find that is the root cause.

Lenny

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Thank you for posting this. It came at a much needed time. My DD is off to school tomorrow. I am in that 'dark phase' right now. Trying everything and trying to track down any or every cause. Nervous when I see her after school that she will be ticc'ing like mad.

 

I like how you said you can't get these days back. You are so right. I spend so much time worrying that the days are flying by. Thank you for your encouraging and hopeful post.

 

I wish you and your son all the best.

Lisa

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OH MY GOODNESS, LENNY.

 

I can't tell you how many times I have thought about you and your son. I'm so happy you ALL are doing well.

 

God is good and I know we don't want to wait for our children to get better, we want it NOW. Time has a way of clearing things up, and we see God's plan in all of our lives.

 

I know you and I have shared the same emotions, and when you said darkest days you really meant it and lived it with every breath you took.

 

I don't know if you have been reading here much, but I too have come a long way, and our son has done some things I never in a million years thought he could do 4 1/2 years ago. My son has certificates for completion plastered on the walls of Firefighter 1, Haz Mat, vehicle rescue, Mayday firefighter down, and L.P Gas emergencies.

 

He volunteers one night a week at the fire house and this past week he helped rescue 3 teens after a drunk driving accident. One girl was air lifted after she flew out of the car, he helped put her in the helicopter and told me all about what it felt like to see all of this. As a parent I'm so glad he can see first hand what driving under age can do. He said it was hard to watch the families crying, and he felt fear for the driver as the police took care of the DUI.

 

He has the best job any boy could have working at a country club. He can tic all he wants during the day driving colf carts around.

 

He will be 17 next month and boy can I relate to what a difference 4 years can make. Not only did God hear and answer my prayers, He went far beyond what I ever asked for. Thats how good He is.

 

God Bless and look forward the the next 4 years when your wildest dreams will come true for your son. Thanks for being there for those who are just starting their journey with TS.

 

CP

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Hi Lenny,

Your post brought me to tears...our ds9 has come some ways but we are still in the middle of searching and trial and error. There are so many moments when it all feels so overwhelming and every waxing moment is like a punch in the gut. Thank you for your update, it revives my resolve to continue searching for answers for him. You have no idea how much hope this brings and a reminder that prayer isn't always answered with an easy solution... but they are answered. Thank you again and I celebrate with your son and family!

 

Megan

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Hi Lenny,

Your post brought me to tears...our ds9 has come some ways but we are still in the middle of searching and trial and error. There are so many moments when it all feels so overwhelming and every waxing moment is like a punch in the gut. Thank you for your update, it revives my resolve to continue searching for answers for him. You have no idea how much hope this brings and a reminder that prayer isn't always answered with an easy solution... but they are answered. Thank you again and I celebrate with your son and family!

 

Megan

Well Okay then, we are even, my post brought me to tears writing it! Never give up hope. I have come to realize that most of the stories you hear on the internet are mostly there because they are "sensational". Once you figure out what is making your child tic, then it doesn't really become a story after that. I am just thankful there are people like the ones on this site exist. They don't get paid for there information expertise, they just do it because they want to.

I remember hearing a doctor say he had a "mild form of torettes" and to deal with it, he could care less that I was trying to hold back my emotions. He totally blew off the fact he could have something else going on inside his body, I did, and I didn't give up. My mom was and still is extreme celiac. His tests didn't show much of an issue with wheat, but once he was taken off it, he just continued to improve. He has other issues, he will need open heart surgery at some time to fix his aortic valve, we will cross that bridge when we have to. For now, I have my God to help and give thanks to and two kids (twins, boy girl) that I live for.....isn't that enough?

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Lenny,

Thanks for posting what has helped your son. I am glad to hear your good news!! How long on the gluten/wheat free diet, did you notice it help your sons tics? I know first hand how searching for answers has taken all my time up.I have also had many tearful days also. I am still searching for that one right thing for my son. So your post really gives me HOPE, for a better days. Thanks again:) Char..

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Lenny,

Thanks for posting what has helped your son. I am glad to hear your good news!! How long on the gluten/wheat free diet, did you notice it help your sons tics? I know first hand how searching for answers has taken all my time up.I have also had many tearful days also. I am still searching for that one right thing for my son. So your post really gives me HOPE, for a better days. Thanks again:) Char..

Hi Char,

It took a long time to notice the full effects after taking him off Wheat/gluten. The only bad part now is that we notice the eye blinking tics will start within a couple hours after he has something, so we have made him so clean that even a little bit will show up in some tics. I also add that if he has milk chocolate he can get the same reaction. We have a clean diet now, it has not been that bad, in fact we like it!

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Thank you lmcgill for the update.

 

Did your son show any signs of digestive problems prior to going gluten free, or did you just try gluten-free to see if it would eliminate the tics?

 

We've tried magnesium/natural calm, no change, but I'm somehow brainwashed into continuing using it, can't hurt.

Taurine, stopped using this, I think it actually brought on a vocal tic/lip smacking, now gone.

5htp, again, not helping tics, but my son doesn't object to taking this

multi, vitamin C and omega gummies

 

We tried HFCS and dairy free for 2 weeks and didn't see any change either.

My next step is to try gluten free.

 

I know my son, age 15 Tourettes is genetic, an 8 y/o nephew is now doing occasional hard blinks. Older male relatives have outgrown mild tics (but we didn't know about them then) but now, I do recognize mild OCD, anxiety and ADD in my brother,dad and late grandfather.

 

My son has no digestive issues, nor behavioral problems so I wonder if gluten free will work for him.

 

Our doctor did mention trying a very low dose of Abilify (.5-1mg per day) I've held off on this, but with my son learning to drive now, I do notice him blinking/grimacing while driving and that concerns me. Obviously if the side effects are worse, we would discontinue.

 

Has anyone had any experience with Abilify?

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Hi all,

It has been a long journey for us and our son. He started tics when he was 7, he is now 11 and is doing so good. We were coming back from the Oregon Coast today and was thinking about this same time 4 years ago when he was going into grade 3 what a difference he was. His words will never leave me: "daddy, I am going to be in a new school tomorrow aren't I?" His tics were bad, body jerks, arm movements....his whole body moved with uncontrollable jerks. He is now calm and I am so much better as well! This site has done wonders, we did the blood tests, we did the NAET, but finally we found out what the main issue was. After we put him on a gluten/wheat free diet, everything started to become clear. We still keep his diet clean, still give him Kids Calm every night, still give him Bonnies supps. twice a day and as of today I can say he is doing wonderful. Thanks all for you help, and for all those that can't sleep and are depressed and cry for your child on a daily basis, there is hope and things will get better, love them and hold them and tell them you love them every day no matter what they are like. I had that sick feeling in my stomach for years, wandering when he got off the school bus how he would be, oh how I wish I could have those days back, but I can't. I had the darkest days of my life the last several years, between God and my endless search for help I feel I am now prepared to help others by telling them there is hope and it will get better. It may not be gluten free, but it will be something that you will find that is the root cause.

Lenny

 

This is great to hear...can i ask if you are dairy free too??

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Hi all,

It has been a long journey for us and our son. He started tics when he was 7, he is now 11 and is doing so good. We were coming back from the Oregon Coast today and was thinking about this same time 4 years ago when he was going into grade 3 what a difference he was. His words will never leave me: "daddy, I am going to be in a new school tomorrow aren't I?" His tics were bad, body jerks, arm movements....his whole body moved with uncontrollable jerks. He is now calm and I am so much better as well! This site has done wonders, we did the blood tests, we did the NAET, but finally we found out what the main issue was. After we put him on a gluten/wheat free diet, everything started to become clear. We still keep his diet clean, still give him Kids Calm every night, still give him Bonnies supps. twice a day and as of today I can say he is doing wonderful. Thanks all for you help, and for all those that can't sleep and are depressed and cry for your child on a daily basis, there is hope and things will get better, love them and hold them and tell them you love them every day no matter what they are like. I had that sick feeling in my stomach for years, wandering when he got off the school bus how he would be, oh how I wish I could have those days back, but I can't. I had the darkest days of my life the last several years, between God and my endless search for help I feel I am now prepared to help others by telling them there is hope and it will get better. It may not be gluten free, but it will be something that you will find that is the root cause.

Lenny

 

This is great to hear...can i ask if you are dairy free too??

We limit dairy, he couldn't take it as a baby, he only takes yogurt and cheeze, not any milk.

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When you say a long time, what exactly does that mean, months? Can you give a approximate time frame?

 

Linda

We did so many things prior to gluten free, but even after we went totally gluten free, it still took about two months for us to see a more even tic sequence. I am stuck on the Bonnies supps. but have put him down to 5 in the morning and 5 at night. I also still give him the calm at night. This has been his longest stretch without tics, and even if he does have a few eye blinks I can usually find out he had something.

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Regarding Bonnies Supps; are you doing both the ts plus and the mag taurate? This initially helped our son, then stopped. We are into our 2nd week of gluten free, so I'm wondering if I should retry Bonnies supps again.

 

Thanks for your info.

 

Linda

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