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two steps forward, one step back?


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DS was doing great all week, tics almost nonexistent as of friday...then saturday morning he woke up ticcing. has been ticcing ever since. still doing the same diet. no extra stress, although he is out of the school routine on the weekend. this is part of wax and wane? i thought the wax and wane thing happened in longer phases -- when the tic disorder first started, he'd tic for a few weeks, a month or two, then no tics for months....but that doesn't seem to be happening this time. yet. ugh.

ps: he's begging to play a video game (he never played a lot to begin with, except for during christmas break, right before the latest flare up started.) it's been about three weeks with no screens, except for the few they use in school from time to time. i can't expect the child to never watch tv or play a video game again. and if i wait for this flare up to end, i may be waiting forever. what to do?

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Hi Ladyd

 

I know how you feel!

I have been watching my son and some days I only see a couple of tics and think - hey, it might be going. Then the next day I see loads.

We have been off dairy for nearly 3 weeks to see if it helps the vocal ( sniffing) but in the last couple of days we have had a little grunting ( like clearing the throat) so I don't believe eliminating dairy is making any difference. The next thing we are going to try is gluten free to see if that makes a difference.

We are still doing Kids Calm, Epsom Salt baths and Omega 3. I have bought a stronger Omega 3 but can't get him to take this as it tastes horrible so we are still on the off the shelf kids one.

Good luck and keep trying.

We will get there in the end.

 

As I said in a previous post - whatever happened to the old posters? This forum has been going since 2003. There must be a lot of success stories in here.

 

Keep Positive

Edited by cloudy
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Hi

 

just to encourage you both.....most of the "old" posters are gone because thankfully, most kids with tics do seem to improve greatly once they leave the teenage years. :)

I know that is small consolation when you are dealing with the here and now..

 

Waxing and waning can sometimes be related to tic triggers, but, with TS, it can also just "happen" mysteriously.

 

have you checked the informal list of potential triggers yet?

 

http://www.latitudes...ng_triggers.htm

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thanks for all of the words of encouragement. we're doing gluten free and mostly dairy free, which we thought was doing the trick all week...but then, suddently, the return of the tics...

makes me question refusing my sweet DS his beloved bagels...

we're weeks away from the blood test, which may give us some answers about food intolerance (the scratch test showed nothing).

i did revisit the triggers page, chemar; i think we need to check his chocolate intake (again, wish i knew -- is it dairy? gluten? sugar? eggs? i want to take away the bad foods but know what i can give him that he will enjoy, and he's such a picky eater!)and again, the trigger could be something else entirely; again, like you said chemar, they can be mysterious. i think a few days of sunshine and outside play would be good for us all.

so much guesswork involved. but i won't give up on searching for answers. ever.

it was distressing today, he was so busy ticcing he was practically tripping over himself. ugh.

but i will keep the chin up. it's best for me, and especially for him :)

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Hang in there. I remember when my daughter was younger there was way more time between tic flare ups. She'd be very tic'y and then we'd have months or entire summer tic free etc. But as she has gotten older (10) there is not so much time between now. We have periods of very very minimal tics - where I've forgotten she even has them (well not really - I could never forget LOL) - they are that good, but then they will often flare. I am noticing that they seem to flare up before she gets sick, even if we keep her on her diets and supplements, if she has a flare up, she'll often be sick the following week. something to consider???

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Thanks Chemar and Mythree

I have spent the weekend trawling through old posts. It is quite humbling to see what other parents have been through in the past and hopefully are no longer experiencing now.

I hope we will all be in a better place in the next couple of years.

It is very disheartening to try diets ( in my sons case dairy free for the last 3 weeks) and the tics have got worse! I am now going to try gluten free.

I am finding it quite hard at the moment.

Sal

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Well, he's still ticcing today, but it's better again, and he just seems more focused in general. Maybe he subconsciously pulls it together for the schoolweek.

February seems to be a tough month for many of our kids... Or am I overanalyzing everything now?

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Well, he's still ticcing today, but it's better again, and he just seems more focused in general. Maybe he subconsciously pulls it together for the schoolweek.

February seems to be a tough month for many of our kids... Or am I overanalyzing everything now?

 

Ha! Get used to overanalyzing everything!! LOL. My decision making skills are becoming so bad for I second guess everything I expose my kids to - food, activities, elmination diets, supplements etc etc. But I guess you kind of get used to it all. I can totally see why Feb would be a hard month. I can't remember if you said this or not - but is your son on a vit D supplement? My daughter was severely depleted in Vit D, and the winter months it would get even worse. She is on high levels of Vit D now. That seems to have made a big difference. With her focus and attention span as well.

 

Good luck. I hope he has a good day - and you too!

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Hi Ladyd,

 

I just had this same thought today! Why are my son's tics lasting so long? Why are they so severe all of the sudden? Why isn't he getting more of a break in between? Gosh, I'm not really sure what to say but I wanted you to know that you're not alone. It makes me feel good that I'm not alone. Hoping that this does getter better as they get older. Ugh! My son's only 8!

 

Nola

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Thanks for the support. Do you notice that your child seems more pale with bags under the eyes on the days the ticcing is worse? I do. I need to look into the vitamin d levels too. I myself have insufficient levels. Unfortunately the naturopath we see can't order blood tests herself so we have to wait until march 4th appt with a naturopath friendly ped to see if the tests can even be ordered. It's a shame our health care system isn't more natural medicine friendly. We are forced to do so much running around.

Also, if we see no food intolerances in the blood test, then what? Do we keep eating gluten free?

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Thanks for the support. Do you notice that your child seems more pale with bags under the eyes on the days the ticcing is worse? I do. I need to look into the vitamin d levels too. I myself have insufficient levels. Unfortunately the naturopath we see can't order blood tests herself so we have to wait until march 4th appt with a naturopath friendly ped to see if the tests can even be ordered. It's a shame our health care system isn't more natural medicine friendly. We are forced to do so much running around.

Also, if we see no food intolerances in the blood test, then what? Do we keep eating gluten free?

 

Hi ladyd,

Did the tics increase around the time you upped the Omega 3's , many kids on here cannot use fish oils (my son for example, or probiotic supps, or even Vit. D)

Yes, at times we do see the pale skin and bags when ticcing waxes although with his clean diet we see this far less. Dark circles generally speak of milk allergy but can also mean immune deficiency... Often this comes for our son when he has a virus or has had repeated exposure to a trigger.

As far as the blood tests, I personally believe that elimination is the most effective and true indicator of sensitivity. It can be overwhelming at first but keeping even a basic food diary can be most helpful. Just wanted to also add that alot of gluten free foods sub in soy or corn which can also be triggers for some, so you may need to watch for those ingredients when you see triggers. When you went dairy free, what did you substitute with? This beginning stage is by far the hardest but hang in there, soon you may be able to start seeing patterns and triggers and it becomes more second nature to cook and live with these diets. Ask as many questions as you need, brainstorming with others on the forum has been most helpful for us in finding many of our son's trigger foods, supps. etc.

 

 

Megan

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Thanks so much Megan. You are right, going gluten and dairy free has been more challenging than I thought it would be. We are also trying to do less eggs, which has been challenging, because for so long his healthy non carb breakfast was an egg omelette. We haven't really substituted much dairy, he just doesn't eat it. He didn't like almond milk and hasn't tried rice milk yet. Meals are a challenge, and he's getting bored of gluten free pancakes, chicken nuggets, fish sticks, rolled up ham-- that's his lunch-- French fries and sunflower seeds. Still can't get him to eat any veggies or fruits, or other meats. He'll occasionally eat shrimp. We did let him have a slice of regular pizza last Friday with no I'll effects. Were also screen free but we let him watch a movie on Saturday. He's been much better the last few days; the clean diet is totally helping.

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Hi ladyd,

 

Hang in there...it does get easier. It would certainly help to know what foods he's sensitive to - are you sure he's reacting to eggs? As for veggies...I suggest you try hiding them in stews and soups if he'll eat them...spag bol is good - I just grate veggies into it as my son loves it whatever I do to it. (And he gets it for breakfast too - I know that sounds weird but whatever works!) Will he eat hamburgers or rissoles? You can grated veggies into those too. Keep posting...do you need any recipes? I'll try to help if I can.

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My son had a sudden onset of tics when he just turned 6 in kindergarten and now he is 11. Based on my son, the wax & wane was spardic initially. But as we get more into our treatment protocol and going thru trial of errors, his tics did become more manageable and the wax & wane period gets farther apart and less severe. It does get better over time.

 

If your child has a sudden spike and no change in diet or routine, it could be environmental allergy induced. My son has enviromental allergies and it triggers his tics.

 

Pat

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When you refer to environmental allergies, is that like an allergy to dust or pollen, or something else entirely? DS got his official ADD inattentive diagnosis today, btw. The tics were worse today, but have been all over the place, mostly better, though. He has a new one where he flares his nostrils rapidly, which I can't even do if I try! But he has been a bit sniffly. The pediatrician gave us nasonex and said to give him zyryec, but I'm afraid to give him anything that might increase the tics, although drying up his sinuses could possibly help the tics ? I'm all over the place myself.

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