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When you tihink all is fine....


mmazz

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Hi Everyone,

 

2:30 this afternoon marked the end of the 6th day with no screens and the 7th and final day. Well Tuesday proved to blow up in my face. All was good on day 3 and 4 and I thought I had figured it out, but Tuesday proved me wrong. Because of the weather, the school had a movie in class and he wasn't allowed to watch ..yes because of me and the no screen trial. Well needless to say he came home so mad at me that his eye and eye roll tic returned. He refused to go to school on Wednesday and today was not his worst tic day but also not his best. So what TV elimination told me is that anxiety is the biggest trigger of all. I spoke to a nutritionist today who told me that anxiety is the root. What happens on the inside will show up on the outside. If the anxiety causes the tic and the normal stimuli, such as TV, etc, will add to the stimuli of the anxiety causing more and more tics. Sounds sensible. He advised amino acids, some homeopathic treatments, family counseling and of course the vitamin treatment that he is already on but perhaps more powerful. But the urine test will be the first start and that will be done on Tuesday. I know it will take 12 weeks before the vitamins actually take full effect. But like most newbees, I was hoping for that overnight miracle.

 

I must share a bit with all of you though. My 12 year old gave me probably the most valuable piece of advise that anyone could have given me. He said, just let him be him and we will figure out the rest. Such clarity...let him be, slow down and figure it out through time and love. We all will find a solution or a way of life...but just give them the time, support and love so that they can just be!

 

Marie

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Hi Marie,

 

I am sorry to hear this. Chemar's teen son had a similar reaction, with increased tics due to the anxiety/frustration of removing screens.

 

While I agree 100% that anxiety is a real factor, I believe that the real root is a faulty immune system. Your child is a 6 year old and unless you have factors in your household of which I am unaware, I suspect that the daily anxiety he faces is not so different from other 6 year old.

 

In any case, it is always good to reduce the anxiety where you can by loving acceptance and not an over focus on each tic--which can raise anxiety.

 

However, I am glad that your homeopathy has some specific treatments in mind that are geared to the immune system.

 

There is always a balancing act involved while the immune system heals. Whether it is 'forcing' supplements (some of our kids take 20 pills a day, and hate it), or depriving them of favorite foods (e.g. for those with wheat/milk allergies, or sensitive to artificial ingredients in most candies, or others who seem to be allergic to just about everything), or restricting TV, there is a balancing act that parents must do in terms of wanting to help their nervous system without messing them up psychologically.

 

FYI, we made sure our son never missed a movie at school by working with the teacher to bring in an LCD monitor for the day from our home. The kids were so excited to see a movie, they didn't care what screen it was on. My son's minor tramas never focused on TV, but were with regards to food restrictions. We negotiated in advance, e.g. we had substititutes for the cupcakes at school that he missed. It was so tough for my son to have his wheat allergy (he gets bad excema from it), while everyone around him had his favorite foods. Plus it made him different. I hated what he went through--and still goes through with it. To this day, it isn't binary, all or nothing. I constantly assess when it is okay to break the rules! Many here do the same thing.

 

Only you know what is best for your child. I hope you keep posting and share what you learn as you go. I am really glad that you are starting some supplements under the advice of a practioner. This is not a direct path for most of us, we learn as we go.

 

Claire

 

ps I am very sorry for your rough experience! I am glad that you posted it so that others can consider the emotional trade-offs--especially newcomers.

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Hi there mmazz

 

I most definitely understand this as my son was so distressed by even the suggestion that his games/Tv/computer time could be limited that it brought out some of the worst tics and OCD etc ever!!!

Thankfully, he has reached the age (15) where he has taken surprisingly good responsibility for himself and so limits his own screen time and avoids flashing games etc just like he is veru diligent about eating artificial junk. I guess he has figured out what helps and what hinders and acts on it...which is a great consolation for this mom in realising he will be just fine when he is "on his own"

 

Does your child have TS? or is it a transient tic condition?

 

I must tell you that you have one wise 12 year old there! Old timers on this forum know how I have harped on about just letting go and not fretting and fussing too much, especially when the tics are mild and not causing the child distress.

The more we fuss and focus on tics, the worse they seem to be because we are constantly drawing the child's attention to them, which just makes them tic more, especially if it is TS.

 

all the best to you ...... just keep learning and take it at a steady pace...you can make things better for your child by gradually making changes in diet and environment but just go a day at a time :wacko:

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Hi Marie,

 

Sorry to hear about the challenges you are facing. Anxiety is a big one here as well, any emotion, be it excitement, upset, anger, fear, worry etc. He had been tic free almost all day on Monday, probably saw 2 or 3 tics all day that were subtle, he started to get an upset stomach and then vomit and tics appeared immediately and he was telling me he was scared about being sick again. Yesterday after school he had some tics but not too bad, then I saw him standing in the playground watching some other kids and he started ticcing more, I called him over and asked what was up, he was concerned about a smaller kid as 2 bigger kids were playing monkey in the middle with his hat and was worried for this kid. He is a sensitive soul.

I completely understand the wish for an overnight success story - I still wake up every morning and hope things have resolved themselves.

I will be getting an LCD tv today - weather permitting, so will post what we find from it. I do think the content of the show will impact him regardless of what is on tv - when he was watching the regular tv a few weeks ago he would tic the most with shows like YuGiOh and POKEMON but was not as bad with shows his younger sibling was watching - so I agree with you there are many factors at play that all interact. We are going to start with calm shows - although he is desperate to watch YuGiOh I have told him we will work up to that!!!

 

Good luck, and keep us posted.

How has he been doing taking the vitamins?

 

 

PS - your older son is a wise boy, I wish we were all less stressed about this, the kids don't seem to mind much. My son has rarely complained about it and I think is oblivious to it most of the time.

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Hi all,

 

THis last week we were doing well. On a scale of 1 to ten- ten being best he was about a 7-8 by Friday. His appetite increased and started craving eggs, meats and fish. THe pasta craving and cookie cravings stopped by Sat. He was even watching TV (LCD) tic free by Sat.. So stupid me went to the Health Food Store and bought an organic Brown Rice Pasta --15% carb or 44gram. In a rush through dinner, I made the pasta plain and in ten minutes we were back at a rate of 1- being the worst. So it must be a sugar thing right? My guess is stay away from the high carbs and the sugarry stuff. Any thoughts?

 

Marie

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Hi Marie,

 

Just a quick note as I am heading out. I know nothing about foods etc - so have no advice there, but try to see this as a positive. You are recognizing clear triggers and that is a step in the right direction, I am also finding as my son is more and more tic free that the triggers become so much more obvious. Although as Claire has said, some tics show up after the trigger maybe even days later. Although heart breaking in the moment you now know something to avoid. I am going ahead with the food sensitivity testing as I cannot deal with a restriction diet etc. so I am looking forward to doing that this week and finding out the results. I am amazed how much better my son is now that we are off milk - although he is starting to tic a little more today - I am thinking it may be the dry air as my throat is feeling sore, so I went out and bought another humidifier - geesh this is costing me a fortune, LCD tv, vitamins, naturopath visits, tests, now humidifier... worth every penny if is makes a difference.

How soon after the tv did you have dinner, could the tics have been related to that? Last night my son was on the computer and usually he plays chess and does not tic, well, he was on a kids website with action video stuff, and when he came down he was ticcing more ( he had not been ticcing all day) I was trying to figure out what caused it and my husband said he had been watching the kids music/dance video. So no more of that for a while!

 

It is a real guessing game. But we are all heading in the right direction, that is amazing that you got to the 7-8/10 on the scale. How is he now after a good nights sleep?

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Marie,

 

I hate to sound like a broken record, but sometimes children have tics AFTER the exposure to the screens, even LCD. They are focused during the activity and they don't always show. So I wouldn't rule out the LCD, especially depending on the content of the show he was watching.

 

Re the pasta, Allergies to rice are so rare, so it could be the carbs as you suggest, which yeast feeds on. Of course, Maybe you should get the IgG test that many of us did for food sensitivities... Foods is a tough one without testing, as the elimination diets are hard.

 

Once he is back to his baseline, I would introduce the pasta OR the LCD one day and see what happens--more detective work. That way you don't restrict both unnecessarily. Or if you stop one or the other and the tics don't improve, then the other may be the culprit.

 

Aren't you glad you have a baseline now to observe what he might react to? Without the triggers, he will go back to the baseline soon enough.

 

Hang in there, you are doing the right things by observing.

 

Claire

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Hi All,

 

LCD TV was limited and in the AM, dinner was 5:30. I let him have about 1/2 hour every other day with the TV all week and most of the time he played while watching. The florescent lights bother him tremdously, so I kept him home Friday/Sat and he was just great. I noticed as the diet changed so did the tics and the bright light tics were more of a slow head thing, like Stevie Wonder but not that noticable- which was a great improvement from head jerking, eye rolling, blinking etc. Last night when I got him in the car after dinner it was an explosion of tics, the mood was horrific, he was crawling out of his skin and then suddenly he crashed. He became tired and actually feel asleep in the car. When I went to get him out he had no energy to even walk to purchase the reward for the week. I actually had to carry him into the store because he did not want to go home without his promised reward. That is when the florescents became an issue and woke him right up and could not fall asleep until 11...three hours past his normal time. When I got home I upped his B complex and his mood became better and researched even more. I understand that magnesuim (lack thereof) is a component to the inflamation to the nervous system which can cause all types of muscle contractions. I understand that sugar causes havoc on the absorbtion of the B's and thereby mag cannot be absorb either. So allergy, depletion of vit/min, etc can mask itself in many different facets, OCD, ADHD, tics,or what other label traditional medicines can create. I think it was more than likely the carbs, it was like a sudden rush. Strange enough last Sunday was the last time he ate pasta at my mothers house and the lights bothered him so much after he ate that he had to shut the lights and played in the dark, and we had no TV all that week. Today, I started juicing to supplement the supps..just carrots and apples and intruduced raw veggies to try to dextox his body of the nasties.

I am trying to pull my thoughts together and found that at age four my older son was diagnosed as an asthmatic after years of antibiotics for the cough. Then came the round of asthma meds including steriods I was convinced that he would be some sort of bubble boy. I did everything conventional medicine told me to do. But I noticed that when my older son started playing hockey his asthma decreased. Everything I read told me that hockey was a bad sport for asthmatics, but I did not listen and let him play. Hind sight being what it is, I believe that his excercise (to the point that he is soaking wet when he comes off the ice), is the detox he required from the meds the doctors placed him on for all of those years. That's where the claim that "some grow out it" comes from. This site is testiment that they don't grow out it, some find a way concious way to aid the body to cure itself and others fall upon it ..like me. Those who do not change their lifestyle live and coupe. Right??

So as of today, I did not try the homeopathic stuff the nutritionist gave him, there is just so much I'm trying that I don't want to rush into anything new (possible bad move..who knows). I too suffer from information overload and want to quickly fix this, but supps take 12 weeks and I'm starting week three on some of it and day two on the rest. Wish me luck, anything you can offer please know that I am so appreciative. I need more infor on how to get an Igg test.

 

Marie

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Marie,

 

With the additional info you just gave (e.g. his crashing after the meal), it definitely sounds like a food reaction.

 

www.elisaact.com does a IgG blood test for 150 foods (including a specific test for gluten/casein/salycilates/different sugars) for $300. If you want to add molds, artif. ingredients/chemicals...the test is $600. You need a doctor's signature. It is important to get the IgG test (not the IgE test--which is more for things like hives.)

 

Great Plains does a yeast test.

 

Claire

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Hi Everyone,

 

Well Sunday was a mess. He was toe crunching, holding his breath and body tensing. To get him to sleep was painful. Monday the facial stuff slowed dramatically but the body tensing was still there (less than Sunday). My question, I know I blamed the borwn rice for in onset, but on Sat. afternoon I added to his supps probiotics and cal/mag. Could this be why the increase? Could this be the "healing crisis"?

 

Please any help?

 

Marie

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Hi Marie,

 

Sorry to hear things are getting worse, not better - another blip that will pass... I have had MANY. I have to say that when I first started probiotics back in November I felt my sons tics increased so I stopped after two days, called the naturopath and she assured me the probiotic should not increase tics. I stopped giving them for fear it was causing it and at that point we were on full antibiotics for the PANDAS and I did not want to mess anything up as the antibiotics were working. When I did re-introduce probiotics in December I introduced small amounts at a time, as with all the other vitamins, about 1/4 of the dose for a few days then 1/2 for a few days etc. in the end he had no reaction to any of the vitamins/supplements. ( I first started full doses and he did have an increase in tics, so stopped and started over again a little slower) I know very little about all this stuff - ie vitamins/supplements/healing crisis etc as I am also new at all of this, but have read some things about helping prevent a healing crisis, or reduce a healing crisis by giving gradual amounts of whatever treatment you are giving. It makes sense I think, I certainly know regardless if the 'healing crisis' is only temporary the thought of increasing my child's tics is not appealing.

Can you think of anything else that may have set him off? Are you keeping a diary of food/activity? This was very helpful for me, and looking back I could see patterns. I did find in general that tics seemed to get worse right before they got MUCH better, and I have read things about 'detoxing' from the tic. It always seems that for every step or two forward you have to take one back. In the end we will figure it all out. It seems like it is taking forever but one day we will look back and say, oh yeah, remember when....

 

Good Luck, I am thinking of you.

 

 

PS we did the blood work today for food sensitivity and the hair test for heavy metals, we should have the results in a week. My son is doing AMAZING, I really believe in the end the switch to Soya Milk and reduction of the flicker effect have done wonders, as well as, of course the supplements.

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Marie,

 

Yes, indeed, the probiotic increase could also increase tics. Many experience a healing crisis as new supplements are introduced (including my son whose tics are now gone). It stirs things up in the body and thus the reaction with yeast die off.

 

Hang in there and things will get better but as Allison said, reduce the amount and gradually build up.

 

Heather

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Heather

 

Glad to know that your son's tics are gone now.. Do you mean to say that he is TIC FREE even when you introduce his triggers? My son's tics have much improved but still they are visible only to his MOM! .. I guess since we watch them so keenly, we see those tics.. In my son's case, tv is a big tigger. else , he is fine.

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Thanks to all,

 

Well it is Wed and I just spoke with his teacher, yesterday she let him watch TV with the class and eat junk with the class because she feels that the anxieity level would cause more of a reaction than the TV/junk itself. She had a 20 min. movie and noticed minor facial grimacing which quickly went away after the movie. When he came home he had really no facial, head and neck stuff, just time to time body stretching. As of today she said if not for me telling her about his tics she would have not noticed and that I should stop stressing and continue what I am doing because he just seems happier. I have not kept a diary, but my friend told me to start since I will have him see a neurologist next month. Her father is a Doctor who told me that under lying siezures may be an issue, which scared me even more than I am. He also said that what I am doing with the supps are okay but it is just keeping me busy and has done nothing else. That's when I wanted to jump off the nearest bridge!!! I don;t think I have cried so much in my life. I hope one day I will be the one advising people, but for now thank you to all who help me!

Marie

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