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New and having a hard time Coping.


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If there was a script to write about my son it would be very similar to yours. I was obsessed, depressed and had that feeling of helplessness. He started when he was 8 and turned 11 a couple months ago. You can look at some of my older posts, but he is so much better today. He is still on Bonnies pills and we still give him "kids calm" at night. Our breakthrough was when we put him on a gluten free diet, my mom is extreme celiac, so there is a history. He did not test positive to the celiac test, but I found out that gluten/wheat can affect lots of different parts of the body. His tics are some eye blinking and eye rolling every once in awhile now. No one else knows, his body tics seem to be over for about 2 years now. This is a long journey, but this forum will make it shorter and less painful. Don't worry too much, I wished I could of saved all that energy in tears and anxiety looking back.....and I am supposed to be a tough guy!

I had my God to help me along, I just kept remembering something I read that "He will never give you more than you can bare" and I was at that brink many times. I don't want to go back to the beginning, I felt compelled to write to you even though I want to forget those years, even as I write I find myself wiping tears from my face....a combination of emotions that include feeling sorry for your situation and emotions of relief that things do and will continue to get better. He knows now what makes him tic, video games and foods are his triggers.

Take care,

Lenny

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Molly, Kim, Patty, Abbe & Lenny – Thank you so much for sharing your stories and information with me and most of all for caring and encouraging me. I am still waking up panic stricken in the middle of the night & in the morning. However, I am trying to make peace with this and do what I can to find the triggers and make this as manageable as possible for all of us. I threw out almost a whole pantry of food last weekend and we have gone completely organic and we are almost gluten free. I couldn’t find gluten free crackers at the store (he loves crackers), so I bought organic ones and for now I’m still letting him have those in moderation. My son has been so good about the diet; he’s just such a great kid! We are up to 8 Bontech supplements today and by Monday we will be on the full recommended dose for his weight. We have already seen improvement over the past week, however I’m praying it’s not just the natural waning of symptoms and that the supplements are in fact helping him.

 

Lenny, I’m so happy you decided to share your story with me. I am such a skeptic when it comes to diet and supplements, I guess you could say I’m usually a western medicine kind of girl. However, after reading all of the information and hearing stories of how diet changes and supplements have helped kids with Tourette’s, I had to get on board for my baby! I’m thrilled for you that your son is doing well and it gives me hope, it really does. I have one question, I was thinking of trying the kids calm, but wasn’t sure if it’s okay to mix with the Bontech supps. Most days my son is actually pretty good up until dinner time then for some reason his tics increase and so does his excitability. That said, he doesn’t have trouble sleeping, but I thought maybe the kids calm would take the edge off during the evening hours. Thoughts?

 

I have told so many people that same thing over the years – “God will never give you more then you can handle”. In this situation, I’m beginning to wonder, but he’s seen me through many things and I continue to pray this time won’t be the exception.

 

Thanks again everyone! You are all truly GREAT.

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Molly, Kim, Patty, Abbe & Lenny – Thank you so much for sharing your stories and information with me and most of all for caring and encouraging me. I am still waking up panic stricken in the middle of the night & in the morning. However, I am trying to make peace with this and do what I can to find the triggers and make this as manageable as possible for all of us. I threw out almost a whole pantry of food last weekend and we have gone completely organic and we are almost gluten free. I couldn’t find gluten free crackers at the store (he loves crackers), so I bought organic ones and for now I’m still letting him have those in moderation. My son has been so good about the diet; he’s just such a great kid! We are up to 8 Bontech supplements today and by Monday we will be on the full recommended dose for his weight. We have already seen improvement over the past week, however I’m praying it’s not just the natural waning of symptoms and that the supplements are in fact helping him.

 

Lenny, I’m so happy you decided to share your story with me. I am such a skeptic when it comes to diet and supplements, I guess you could say I’m usually a western medicine kind of girl. However, after reading all of the information and hearing stories of how diet changes and supplements have helped kids with Tourette’s, I had to get on board for my baby! I’m thrilled for you that your son is doing well and it gives me hope, it really does. I have one question, I was thinking of trying the kids calm, but wasn’t sure if it’s okay to mix with the Bontech supps. Most days my son is actually pretty good up until dinner time then for some reason his tics increase and so does his excitability. That said, he doesn’t have trouble sleeping, but I thought maybe the kids calm would take the edge off during the evening hours. Thoughts?

 

I have told so many people that same thing over the years – “God will never give you more then you can handle”. In this situation, I’m beginning to wonder, but he’s seen me through many things and I continue to pray this time won’t be the exception.

 

Thanks again everyone! You are all truly GREAT.

We have always given him Kids calm, (about 1 tsp before bed) and he is taking 12 bonnies, 6 in the morning and 6 in the evening. The calm is completely harmless and is part of our evening routine. He has a twin sister that also takes it, makes her feel important too!

I know now when he has had some gluten, he gets a bit of a wild look to him and starts blinking or eye rolling. He also seems to blink when he plays his Wii or he DSI. I do not think he has Tourettes, we at least not the genetic type. We know of none in both our families.

Hey, I don't want to go back to 2006, I was a mess! But after IGg testing, NAET treatments etc etc, I feel we are under control. That feeling in my stomach when I knew I had to see him at the beginning and end of each day, is mostly gone. I know now, that when he does tic, it will be over in a few days to a week.

The bonnies vitamins take a few weeks to a couple months to notice much, but they do seem to work. Like I mentioned, going totally GF has been what I think has made the most difference.

We are in Vancouver BC, and we find it very easy to get GF products, restaurants are excellent too. Don't give up, I promise you it will eventually get better

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What exactly is IGg testing. I have done allergy testing with Nicholas one food at a time is that it? I also sent a blood sample away. For now we avoid all dairy, limit soy and beef. I don't limit gluten though

 

abbe

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Hi Lynn,

I've read your post, and it was like myself talking.

I am going through the same as you, for us it is also very new, and it is very scary and sad.

I wish your son to get healthy soon .

I am trying also Bonnies supplements, Epson salt, avoid MSG, food coloring etc.

I'll let you know if anything works for us.

Good luck!

Deby

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