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When do you come to terms with it?


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Hi everyone, I have been reading the posts on this forum for a while now and it's really comforting to know that i'm not the only one going through this. My son was diagnosed with a chronic tic disorder when he was approx 7 years old as he was constantly clearing his throat. Up until approx 7 weeks ago, (2 months after his 12th birthday) he hasn't really been too bad and then for no apparant reason he developed more vocal tics, like a high pitched squeal and another one where he says 'a' really loudly and a couple of other throat sounds. He has been doing these every day, every few seconds! We are waiting for another appointment with the pediatrician to come through. I have cried myself to sleep many times and have a constant knot in my stomach worrying about my gorgeous boy and how he will be in the future. I have been doing tons of research on how to help him and went to see a Nutritionist yesterday who will arrange for comprehensive testing to see if ds is lacking minerals or has any sensitivities. Anyway I was starting, only just, to lose that horrible constant knot in stomach feeling and I was starting to get a grip on things when today my little angel started a swearing tic :o and now i'm back to square one. My blood ran cold when I first heard him and then I just felt so angry thinking 'why is my son having to go through this? what's he ever done to anybody'? and now i'm just very sad and tearful, I know there are children and adults who are a lot worse off with life threatening illnesses and I should put things into perspective but it's so hard. Anyway, I feel a little better now typing this, thanks for listening x

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Hello,

I don't have any answers for you - just to say I understand. It is so hard. That constant anxiety as a parent we have. When the tics are gone - life is good. If the tics come back but they are not really 'bad tics' then life is okay - with that feeling that it could get worse at any moment. Then when your child has the tics that terrify you - like what you are going through - everything is just awful again. All I can say is hang in there. You are at an awful low right now, but you know that it will get better again. I understand your anger - of why does your beautiful child have to go through this. It really is unfair.

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Thanks for you reply mythree, although i truly wouldn't wish this on anyone, it's really comforting to know that i'm not alone and other parents are feeling the exact same way as me (and you described it exactly). Going back to School is the part i'm dreading most at the moment, as there is no one in ds school who has tics, not that he's noticed anyway, so he feels as if he's the only one suffering with this, but we will just have to take each day as it comes x

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Hi! Our son who's 10 also has Chronic Vocal Tic Disorder and I too have felt the crushing emotional rollercoaster and the fear as school approaches etc. We have had some really good results with a good multi and eliminating wheat, dairy, ALL artificials, soy and some other foods we have found as triggers along the way...but he still tics, much less and the waxing and waning is less severe but I don't think the fear really ever goes away, it can become dormant in good phases and come roaring back at the first rise of a new tic or waxing period. The only thing that really helps me is remembering that since changing his diet etc. he is in a far better place than he was in 3-4 years ago. Not to mention generally it seems to upset me more than him. You seem to be setting up a good plan of action and I really wish you the best and hang in there...this stage of looking for triggers can feel very overwhelming especially changing food choices but there is a good chance you may see positive results. I think when I stopped expecting big miracles and started recognizing the little steps forward I began moving into a healthier place, that's not to say I don't still have emotional crashes anymore, it's just less and I've learned to not take it so personally, my advice: do your research, try to look for triggers, change what you can, stick to it and then widen your focus again...sometimes we get tunnel vision and all we begin to hear and see are the tics, and everything focuses around the tics, and our moods are controlled by the tics and everything else becomes secondary. I know I've been there :wacko: but the good days do come too.

 

Short thought I saw your son was 12 is he gaming more because it's summer? I can tell right away with our son when he's been playing longer at a friends because the high pitch squeal or repetition when watching TV later...just a thought. Chlorine in swimming pools can be a big trigger. More easy meals in the summer usually means more wheat and artificials and dairy etc. Just some ideas to consider...

 

Best wishes,

 

megan

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