to:ANDY

[Guest Guest_Jennifer]

I did not know how to address just Andy-sorry--tried e-mail under response and it didn't work.

 

 

My 8 year old son has the same similar tics during summer months-May June July part of August. During the school year tics are very mild, no one notices. This is the fourth summer that he has had 3 or 4 tics at once. We are also searching for the answer=chlorine, pollen. We did try changing our pool to Baquacil one summer and didn't see a difference. We have waited to swim in June to see it tics begin before swimming and they do--It is so puzzling--Has anyone else experienced this?

 

Thanks-Jennifer

[Claire]

Jennifer and Andy

 

From your post, you don't sound the the Jennifer that normally posts here, so I am assuming that she is new.

 

I would think of the different environment at home vs school, since it sounds like this change happens during the summer months, e.g.:

 

1. Does your home have carpeting where the schoo doesn't? Other differences in the two environments, (e.g. mold) in the home? Try an air filter in their room at night and see if it helps? However, the summer months are usually drier, so maybe not mold.

 

2. Do your children watch more TV and/or play more computer during the summer months than they do during the school year--I would think this is common with so much free time. Screens can be a trigger for some kids.

 

 

Claire

[Guest Guest]

Claire,

 

Thank you for responding.

 

I am a "new" Jennifer.

 

I did not think of mold-I will try an air filter. I read some people use a HEPA humidifier--is that correct?

 

He does watch more t.v. in the summer, as well as play video games.

 

 

I get so down sometimes trying to figure this out. As all parents know, it is so hurtful to not know exactly how to help your child.

 

I am literally in tears now watching him jerk his head back so hard--I know it is so painful for him.

[Guest Guest_jennifer]

Claire,

 

I may have responded twice. I couldn't find my first response.

 

I am a new jennifer.

 

I have not tried an air filter. Are you talking about an humidifier-HEPA-I have read some people try this.

 

More screens are viewed in the summer. Video games etc.

 

Thanks for responding. It is so easy to get discouraged-I have tried and tried to figure this out on my own.

 

I have literally been in tears, as many others hav e, tonight watching Jarrod throw his head back so back it hurts and gives him a headache. As all parents, it hurts so bad to see your child in pain and not know what to do.

 

Thanks! Jennifer

[Guest Guest_Jennifer]

Claire,

 

My son also has picked up a new tic-spitting-only when we go outside. This makes me think-Is there something in the air? or what? He does the neck tic inside and outside? What are your feelings about this?

 

Thanks Again,

Jennifer

[Claire]

Hi Jennifer,

 

We have a HEPA filter, but not a humidifier. With mold concerns, I don't add moisture to the air. Here is the kind we use mostly, purchased based on room size. I like them because they are quiet.

 

http://www.natlallergy.com/allergy/product...aners_HEPA.html

 

You are doing the right thing by trying to notice what helps your child. We have all been there, suffering with our child through their pain. I encourage you to do two things to help you find the path for your child:

 

1. Read these threads, you will learn a LOT. This is a support group, but much more than that, people here have done a ton of research and shared what worked for them. Ask questions on what you read here but don't understand. For example, eliminating 'screen' viewing completely stopped my son from ticcing, while I looked at underlying health issues. For Jeff, eliminating artificial colors and flavors, along the lines of the Feingold diet eliminated his childrens' tics. For others, eliminating certain foods made a huge difference (e.g. corn, milk, wheat, it varies with the child). I will say that usually, things aren't that simple, but when the tics are actually causing your child pain, it might be worth trying.

 

2. Consider finding a 'natural methods' doctor from the list on the top of the forum. Most of us have needed help in helping our kids. This is because the tics can be caused/aggravated by underlying issues that need to be understood and addressed. Most general practitioners don't understand alternate methods, and might prescribe drugs. I personally see drugs as a last resort, given their side effects.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

 

Claire

[Guest Guest]

Thanks for all the information.

 

We do feel like their is a connection and will continue searching for it.

 

Thanks, Jennifer

[Guest Guest_Jennifer]

Claire,

I responded to your note earlier today. Throughout the day I kept thinking about your child and the screens. I was curious-did he tic during watching t.v. or was it a constant tic sometimes that resulted from watching/playing at screens? Do you notice tics if he just watches for a little while or long periods? That is very interesting. During the school year ,during breaks. we sometimes would notice our son to start blinking or diff. eye tics when playing the video game excessively. We would make him quit and tell him his eyes were getting tired and then limit his time.

 

Thanks again,

Jennifer

[Claire]

Hi Jennifer,

 

If you notice that your child's tics are worse during the video games, then there is a good chance that there is a correlation.

 

My started getting tics shortly before his 8th birthday, and they started to get more severe--multiple facial tics--over a period of weeks. It took me some time to determine that the trigger was computer games for 2 reasons: 1) he had been playing computer for years with no visible problems, and 2) the tics continued to occur on days that he didn’t have any computer games or TV.

 

His tics were constant, though they seemed to get worse during a particular game (not others), which gave me the idea for the correlation. Fortunately, our monitor broke so we could do an elimination 'test' without him feeling punished.

 

It took a few days for us to notice any improvement, but eliminating all computer activity eliminated the tics 100% within a week or so!! We were soooo relieved. Subsequent exposure showed a direct correlation with the computer---multiple times over the next couple of years, either daycare providers or the school would let him work/play on the computer without our knowledge and the tics would return. However, since we would catch it right away, it would be a single tic and wouldn't get worse from cumulative and prolonged viewing.

 

Several months later from computer elimination we noticed him ticcing during TV--it was as though his sensitivity got worse with age, and the tics would linger. In the end even 15 minutes of exposure was enough to set him off. Finally we had to eliminate both TV and computer. Since then no more problems.

 

The tricky part about computer/TV as a trigger: 1) IF your child is like some of us here, the tics triggered by the computer linger for several days after exposure. 2) For my child, he wouldn't tic during certain games, but would later, so that it was misleading to see this as a trigger.

 

Given your comment on the video games, I really recommend doing the one week screen elimination test sometime --it may not even take you a full week to notice a change, but again I think it takes that long to see the most improvement. Please note that even watching someone else play computer 'counts' --it is all in the viewing of the flicerk. IF this ends up being the problem for your son, I consider it GOOD news, because:

 

1) You and your child can determine the trade-off between viewing and ticcing. You can experiment with how much he can tolerate without issues. There would be a lot of trial and error involved. This is in answer to your question of 'how much' is okay--to me the only way to find out is elimination then reintroduction every other day or whatever until you see the tics getting worse again, then starting over. My son watches ZERO TV/Computer on a CRT screen even now.

 

2) 15" LCD monitors (with TV tuners) and static computer games are THE solution for my son. (e.g. no 'flickering' computer games). He plays computer for up to an hour each day and watches movies on the LCD monitor on weekends. We don't allow more than this because of our views on excessive computer play and children, so I have not tested more exposure.

 

3) If you go through the testing for and correcting of underlying health issues as many of us are, this sensitivity may be greatly reduced and possibly eliminated. Phil, Heather and Ronnas have seen this trigger become less of a factor or not a factor at all through the supplement and food elimination programs they have done. efgh, Jean, JCandKc and my child still have this sensitivity (or last I heard from them anyway). I should note that my understanding is that Phil never really focused on TV as a trigger--it was more hindsight for him

 

As I have said 8% of the non-epileptic population has an abnormal reaction to flicker--the link I have posted on this even discusses tics in 'normal' people during the testing. But for some reason, no tests have been done on the longer term impact of continued viewing.

 

JcandKc told me off-line of a GREAT test for those of us who don't 'see' flicker. She videotaped something on both an LCD monitor and an LCD monitor and viewed both later--it was quite obvious in the replay.

 

I hope this answers your question. I didn't see other notes from you vs the ones on this thread.

 

Claire

[Andy]

Jennifer thank you for trying to contact me and thank you Claire for your thoughts. When my son was two years old we noticed after he was sick and did watch alot of children's videos that he was demonstrating tic like behavior. Our doctor then in Queens, New York stated that it was nothing more then an over active brain and that he was just a smart kid who is thinking two much. Well, I took the video shows away, the only T.V. he was allowed to watch then, for a month and the tics then went away. A year later at 3 they came back during the summer and I moved my family to Southeast Florida. At 4 years of age, the tics were back and out of control in all respects. At this time we were living in South West Florida in our new home. Three doctors later that summer our son was tested for extreme negative reactions to gluten. At this point I wondered if my son's first bout was due to a bad vaccination shot or two much anti-biotics when he was sick. It all seemed to have happened around the same time and we ran him over to the hospital in the winter for his temperture dropped way two much and way two soon. Anyway, I think the TV makes his condition worse when he is already weak with whatever is causing the tics. He was doing so well for so long that I thought his diet change ended the major problems and slowly the vitamins and pro/bactaria would help repair his stomach. I was wrong and unforuntally lost alot of research time and potential proactive measures. Now I just found out, after questioning the company, that his zucchini bread that is only suppose to have is organic millet flour, zucchini, broccoli, cabbage, carrot, carrot juice, water, baking powder and sea salt does have traces of wheat, gluten and yeast for it is not processed in a non gluten facility. Yesterday we bought a bread maker, a juicer, and a fryer to get a better contol of the ingredients that my child is taking into his body. So maybe this was the issue or maybe it is the summer connection. Anyway I will also look into an envirnomental allergist. This Monday we are going to our Nuerologist who is highly rated in his field but is concentrating more on antibotic treatments in an attempt to kill any lingering infection that may be undetectable but still inside of my oldest boy. I'll will keep anyone who is interested in what occurs in case the information may be of use. I am glad that Jennifer shared her information for it suggests a summer pattern like my son's and I am thankful for Claires input for every avenue must be searched for an answer.

[Claire]

Andy,

 

It is interesting that you speak of lost time, because your child is still so young at age 5! I didn't do food allergy testing until my son was 10 a few months ago.

 

As far as the zuccini bread not truly being 'gluten/wheat free', I just did something similar. I meticulously removed all the food allergy triggers my son was tested for. Since he had issues with yeast, I gave him treats with Malitol, an alcohol sugar. I just found out it is derived from corn, which is one of his allergies. Since one big goal of removing these foods is healing his gut (you probably know about them causing inflammation and in turn creating an environment where among other things yeast can flourish). I feel like we have wasted months---aaargh!!

 

We had been using a bread maker for a while. Be careful of the mixes, some of them are also made in facilities that make other grain products. If you come up with a new zucchini bread recipe let me know. Does millet flour = rice flour?

 

I have to say, I don't know how you do it with your child. To be allergic to 'cane sugar'! Corn sugar is tough enough. Have you checked out xylitol and/or stevia as a sweetener? Also, no rice? That saves us from no wheat or corn! Interesting though that milk or casein isn't an issue for him.

 

As far as the vaccines goes, I am sure you have seen people's comments on mercury. I have posted on this before, but Jennifer (the first Jennifer, not Guest_Jennifer) recommended "Children with Starving Brains" and of all the resources I have read, this is the best at trying to link everything together. Again, it discussed ASD (Autisim Spectrum disorder) and she doesn't mention tics directly, but our doctor says they are part of ASD and based on the test results for people's children here, the protocol and treatments are so similar.

 

This book is focused on understanding the underlying issues that can be corrected. For example, she says that ASD kids have 5x the amount of mercury during a trial of DMSA (which pulls out mercury)! Immune issues such as food allergies are so common as are yeast issues.

 

As for the antibiotics, just check with your doctor about extra probiotics during that time and timing them 2-3 hours from the antibiotics.

 

Claire

[Guest Guest]

Claire and Andy,

Thanks so much for replying to all of my questions and comments. Sometimes my answers and questions may be short-I also have a 5 year old-every time I sit down - I hear "MAMA" !!.

Claire, the screen info. is so interesting to me because after reading your info. I really feel like there is a connection. Sunday and today we have done "no" screens and I can see an improvement. While he was doing the neck tic, he could lean back on the sofa or video chair and not do the tic at that time. So, I would encourage him to go watch t.v. or play his game, just so he wouldn't have the pain. In about 2 weeks it seemed he had only 1 "good" day--we usually see the normal waxing and waning in the summer months, but it was just like the neck tic wouldn't let up any. Now I can see that was probably a terrible thing to do. He normally doesn't watch this much t.v/games. Today I even mentioned going to the library and he said, "oh no, not the library that's where I do my neck the worsed!" Guess what he does at the library-plays the online computer games!

My husband and I had a little suspicion before that it was making his ticcs worse-at times. But had never heard about a situation like yours. Thanks again for sharing. I will write back soon. We're going to the library-TO READ BOOKS!

 

Jennifer

[Claire]

Jennifer,

 

That is sooo encouraging! I sure hope that this makes a big difference for your son. If this is a factor, it should get better and better throughout the week. If not, at least he can play without any worries on your end that it is a contributing factor.

 

Getting through the whole week can be tough, and if your son is interested in book tapes at all, I recommend them. My son still needed the 'down time' of passive listening. Those Harry Potter tapes saved us! Also, we did family board games--I had less parent free time during the adjustment stage, but it was well worth it. And if your son is like ours, then LCD monitors will still allow him to have his time later. I personally think it is best not to try them out until the week is over because 1) no need to spend $ unless you are sure and 2) I am not sure if LCD monitors impact some kids, so it could mess up the test.

 

Please keep me posted!

 

Claire

 

ps Re your encouraging your son to play to get his mind off his tic, reminds me of my son who is allergic to wheat. Before we knew of his allergy, he kept wanting buttered toast and I told him to at least have some peanut butter on the toast to get some protein. It turns out he is even more allergic to peanuts, ugh! We still joke about my error back then.

[Guest Guest]

Hello everyone. Today my son's tics have decreased in harshness and frequency. This is one week with no pool so if they continue to lessen, maybe there is a connection there. I agree with everyone about the T.V and in another week, we will phase that out to see if there is any more lessening of tics. Our doctor decided not to start the anti-biotic treatments. My son's results from SpectraCell Lab in Texas came back and the doctor wants to boost my son's deficiences in B1, Biotin, Magnesium, B6, Glutamine, Coenzyme Q-10, B12, Oleic Acid , Alpha Lipoic Acid, and Glutathione. If anyone had the same result, I would be interested in knowing where they went from there. We were given a list of what is needed but not a brand. I saw Bonnie's vitamins listed but it has soy and that's a no- no for my son. As for our baking success everything so far has turned out blaa but we just started.

[Claire]

Is this 'guest' Andy? I just can't tell from the new content.

 

Spectracell should provide you with a list of exactly how much of each supplement to give your child depending on their age. How old is your child (I know Andy's is 5, but I am not sure who this is). Plus they always provide 2 copies of the results, plus a supplemental sheet which will tell you the implications of the deficiencies. Can you have your doctor send you your copy? I ask because they give an overall antioxidant rating, and the fact that your child, like mine, has low alpha lipoic acid and glutathione means they are likely low in antioxidants. I can tell you exactly what brands and kinds our doctor gave us (guided by the Spectracell guidelines) if you have this information. Most he research them for ones he is comfortable with. Between my son's and my deficiencies, I think I have all but one of those vitamins, though some are in an antioxidant combo pill.

 

Now that you have specialized results, you can have a customized program where you buy them individually. I go to Whole Foods and a health food vitamin store near my doctor. You don't want anything artificial in the vitamins--they can cause there own problems.. I consider Bonnie's vitamins for those who don't have specific testing done or don't wish to experiment on their own (that covers a lot of people).

 

Our doctor said to start adding the supplements one at a time--we had added them all at once and my son got severe leg pains after 2 days. This is because the antioxidants help the body to detox and must be added in gradually for some.

We had zero problems this way.

 

Finally, I should point out, that when my son's doctor saw the low antioxidant levels he had, he decided that he should run the elemental analysis (Great Smokies Diagnostics /Genova) 888-201-8333. It is a test for elevated mercury, lead and other toxic metals. His reasoning was that kids with low antioxidants generally don't detox these metals from their body well, so they tend to have elevated levels.

 

Now the supplements raising the antioxidants should over a period of months help reduce the metals if they are an issue.

 

I consider this very positive in that you now have something to work with!

 

Claire