Is this TS?

[lauramacf]

Hello all, I'm new to the forum and am investigating the possibility of my son having TS. This isn't the first time I've wondered--back when he was a toddler I would occasionally notice strange facial grimaces and worried a bit, but never looked further into it. He has frequently had excessive sniffing and throat clearing, but we thought it was mild allergies; now i'm realizing it could be TS. He was diagnosed with an ocular motor dysfunction and is currently in vision therapy for that, so when he started having some odd eye movements, I thought it had to do with the exercises he was doing. The eye issues started a little over a month ago; he would open his eyes really wide and then they would dart from side to side. This occurred regularly and excessively for about 2 weeks and slowly got to the point where it happens just a few times a day. His teachers, the vision clinic staff, and I all thought it was just an oddity and when we noticed it happening would ask if he was having a problem with his eyes and if he needed some eye drops (he once told me he did it because his eyes were dry).

 

Just a few days ago he began non-stop sniffing and throat-clearing, and that is when TS really occurred to me, probably because all of my reasearch has led me frequently to sites where TS is mentioned. I twice gave him antihistamines to see if the sniffing/clearing responded, but didn't feel it helped. Additionally we frequently notice him rolling his head, like someone who has a crick in his neck. Looking over a list of TS symptoms in Dr. Rapp's book, I checked the following 12 out of 35 symptoms listed: making faces, eye rolling, eye blinking, neck snapping, shoulder shrugging, leg swinging, leg jerking, sniffling, snorting, throat clearing, poor concentration, licking lips. Obviously, these don't all occur all the time, and some may not be significiant enough to fit into the syndrome possibility, but the two recent experiences with the eyes and throat clearing seem very significant to me.

 

He was recently assessed by his school to see if special services are required; the only service he qualified for was for a mild speech impediment. Aspergers and PDD were things that had been mentioned previously as potential diagnoses for him, but after their assessment the focus has been on ADHD. His inattention, distractability, and behavior issues all seem to point in that direction. I've been volunteering in his class every morning and can see how severely these issues are affecting his learning. I began searching for alternative treatments for ADHD.

 

We've recently joined the Feingold association and have been gearing up for going on the diet (we've already eliminated natural salycilates and significantly reduced artificial additives--but are not yet 100% on board). We've also recently eliminated dairy (2 months ago) and gluten (2 weeks ago). I thought i was seeing improvement after dropping gluten, but that was short-lived. I also had been giving B-complex and niacinamide daily. Just two days ago we decided to try combating his constant flatulence by taking some anti-candida measures--since that seems compatible with the other dietary interventions it doesn't seem it would hurt to try. But now I'm wondering if any of these dietary changes are really helping, since rather than seeing improvement I am seeing tics!! I no longer feel certain about any of the actions we are taking and am quickly getting mired down in confusion and apathy! My mind is running in circles and the internet research is non-stop. I'm driving myself crazy wanting to help him, and feeling frustrated that every turn seems to bring out something new to deal with.

 

If any of you can share some ideas about getting a good diagnosis I'd really appreciate it. We use homeopathic MDs who aren't interested in medicating for ADHD and they support my recent decision to test for lead and gluten intolerance; are there any other tests I should consider while we are drawing blood? I wondered about iron levels too. I'm a little worried about seeking a mainstream specialist because we are really hesitant to consider medications, but I did recently contact a psychological services clinic to see about professional assessment for ADHD.

 

Sorry this is so long. Thanks in advance for any ideas.

[ntbowen]

I'm sorry for all your frustration. I am new to this forum here too. My son was just diagnosed with Tourettes (well the docs are pretty sure), and my attempts at helping him sound a lot like yours. If you see my post from last week, you can read some of our background. My son is only three years old, but we have seen tics for a long time now. We eliminated corn after having allergy testing done which greatly improved his disposition (he just felt better and his stools finally became solid). After reading in great detail about milk and wheat, we gave that a try too. We also think this helped some and have continued on this diet. Then we started vitamins. We originally started with a product called the Super Nu Thera by Kirkman because at the time we also were worried about a possible Aspergers. These vitamins are a mulitvitamin with a very high dose of B6 and Mg. Our son became much calmer and immediately would play by himself in his room. They definitely made him more content, but no change in tics. In fact, my husband and I were a little skeptical if they acutually made the tics worse. His normal tensing movements and grimaces seemed more jerky after about four hours after taking the vitamin. Now we are pretty sure that we are dealing with Tourettes, and have decided to switch to Bonnie's program which is geared toward Tourettes. Bonnie thought maybe the B6 was too high which could increase the tics. We just started yesterday, and have seen nothing yet but are praying that they help us. We just recently started him on a probiotic from Kirkman called Pro Bio Gold, but I think we may need to be more aggressive than just adding a probiotic to really get rid of yeast. My son has lived on antibiotics since he was born prematurely, and many ear infections so we think yeast could be a problem. Sounds like you are on track with some alternative approaches. We also give him flax seed oil instead of fish oil because he can't swallow the pills but are going to switch him when we get a liquid version. There is a lot of talk about getting rid on mercury and other heavy metals which seem worth exploring. It can be so overwhelming to do this by yourself so I definitely think working with a doctor on these alternative approaches is a good idea. We are in the process of finding one now.

 

Please let me know what you discover works for you son. You will find many people helpful on this post. I'm probably not the one to give advice because I am so new and experimenting myself. I feel your pain though, and can understand what you are going through. Feel free to email me anytime.

[Claire]

Hi Laura,

 

You are doing so many of the right things. Given you are already eliminating common food triggers and artificial ingredients with no tic improvement (these are very common triggers), I will suggest trying....

 

1) Trying the 'no screens' test for a week. Check out the TV/computer link on this page for more information. I think 13 of the 14 parents here who did this saw significant tic improvement.

 

2) Testing for elevated mercury/metals could be an issue, and that interferes with the healing of the gut and yeast elimination. Lead is only one of the metals that do damage. Great Smokies Lab does a blood test for mercury and other metals (elemental analysis test) that I highly recommend you do if you are drawing blood anyway.

 

3) IgG blood test (if you are drawing blood..) for other food sensitivities. www.elisaact.com. If they can't draw that much blood at once, I would do the metals test first.

 

4) www.spectracell.com blood test for vitamin deficiencies You are supplementing with some, but this takes some of the guess work out of what else to supplement with.

 

5) There may be chemicals or dust mites or mold in the house that he is reacting to--both with tics and/or throat clearing. Try a HEPA filter in his room for a week (and vacuum and clean the whole room first, including all the bedding) to see if that helps.

 

Very few of us here had luck with mainstream doctors and most (not all) of us shy away from prescription drugs.

 

I too was overwhelmed with info and last January went to a DAN doctor. If you want guidance from a doctor who does this testing, here is a great list:

 

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

 

For the DAN doctors--they do much more than just autism, so don't be misled by their name. I would call first to see if they treat tics and ADHD, and if you like their style. They hopefully would do both. Ours does phone consults, so after the first visit, I didn't have to drag our son around.

 

How old is your child?

 

Claire

[lauramacf]

Thanks Claire and ntbowen for your responses. Nt, I'll definitely keep you informed as I (hopefully) find things that are working. I am also going to get started with Bonnie G's supplement program (although for now I'll be buying them separately since I already started getting them before I knew about BonTech). I'm still feeling a bit like I'm jumping from thing to thing, but maybe that will start feeling more calm after I get a grip on the idea of tourette's and stop freaking out!

 

Claire, in answer/response to your questions and suggestions:

 

My son is 7 and in first grade.

 

*"no screens" was the very first suggestion our doctors gave us (they've wanted to see that for many years, in fact!) and we are TV-free during the week, but I haven't the complete cooperation of my husband so he is watching on the weekends--I mentioned the information in the "no screens" posts to him tonight, so hopefully he'll be more willing to do it more completely after we discuss it some more. Funny, we'd gone computer-free for him on weekdays too, until this last week when I found a program called brainbuilder that I was certain would be helpful to him . . . in retrospect, maybe those flashing "focus" exercises have done him more harm than good! Wow. I really think there could be a connection there. I was making him do two ten-minute sessions a day all last week. I think I'll stop that now.

 

*Thank you for the testing suggestions. I will talk to the doctor abot what we can add from drawing this week. I definitely think metals should happen this week.

 

*Allergies have long been suspected with all this sniffling and throat clearing (given we have a younger daughter with very severe food allergies and asthma it would make sense that he'd have some too). He does sleep in a room with allergy coverings on beds and pillows and with a HEPA filter running all night, but there is always room for improvement in cleaning. I've also been wondering if he is reacting to mold--my daughter's asthma has been flared up for a month due to the high mold levels in our area for the last few months--or maybe something at school.

 

I looked up some area doctors on the DAN list and will make some calls on Monday. Thanks so much Claire for the ideas--I feel much clearer now! And thanks, too, NT for the commiseration. I hope we can both find the help our kids need!

 

Laura

[Chemar]

Hi Laura and welcome

 

in addition to the good pointers that Claire has already posted, I would also suggest that you read the article on tic triggers by Dr Rogers

 

http://latitudes.org/articles/finding_triggers.htm

 

You are truly already on a very good path, so congratulations! Especially as your son is still young, you can be very hopeful of seeing tremendous improvements.

 

Do keep us posted as your experiences can shed lots of light for others.

[Claire]

Laura,

 

Very glad to hear re the HEPA filters. We found we had a mold problem also, fortunately it was very contained. Do you have carpeting? For all your research, I suspect that you are aware that certain household cleaning chemicals, certain carpeting, and new paints can contribute?

 

So maybe the gluten was doing him some good after all? Corn can be a trigger too, but I hate to restrict food unnecessarily, thus the IgG test rather than guesswork This is very different from the IgE/RAST test--make sure they do the right test if you do it.

 

Unfortunately, you can only take so much blood at once. Do you know to give your child lots of water 2-3 days before the blood draw to increase the fluids and minimize the impact? Also they have A topical cream to lessen the prick.

 

You are the FIRST poster here EVER whose doctor suggested cutting out TV!!! Big step for tic syndrome kids. Good for your doctor. When I brought it up, our pediatrician said he saw tics from computer all the time, but never recommended stopping it. (I did tell him on the last visit that he should recommend that too!). If you talk to your husband about this, tell him you just need the test period. (no gameboy too). Hopefully he doesn't have computer monitors on all day (with screensavers?) at school? I would not be surprised if those recent focus exercises were indeed the recent cause. The great news is that it will be so easy to find out, won't it?

 

Claire

[lauramacf]

Chemar, thanks for the link, it's good to have a list of possibilities to refer to! Claire, I'm with you, I think the computer focus exercises all this week explain the emergence of throat-clearing-with-a-vengence! I showed my husband the threads on screens and he agrees with the assessment of the computer as a cause of this episode (but he's still very against eliminating--he wants to get an LCD, instead because he's a big proponent of LCD monitors at his work too). The computer monitor he was using is particularly bad, very fuzzy and low hz rate, then add to that the flashing aspect of the focus exercises--most definitely I think we've found something major here.

 

Unfortunately there are computers in his classroom, but they don't spend much time at them (my son actually never gets to use them and is really mad about it because he gets pulled out of the class for special instruction at center time). His desk doesn't face the computers, so at least I know he isn't staring into them all day. I help out with the computers everyday so I may sneak a peek at the refresh rates and see what I can do to lessen the impact they may have on all the children in the class.

 

Thanks for the advice on drinking water, I didn't know that! There is only carpeting in one room in our house (the playroom), but I've long felt that we need to get serious about investigating for mold. As for the GF diet making a difference, I'm just not certain about it. He had two really awesome days as far as both flatulence and behavior, and now no real sign of a difference--being semi-feingold and doing supplements may be playing a role too, so it is rather confusing. But I am still concerned about a gluten connection for him and think it is worth looking into. I'll admit that corn elimination is just about the scariest thing I can imagine!! Gluten and Casein are a breeze for us, because wheat and dairy are among my daughter's food allergies. She is wheat-dairy-soy-egg-oat-nuts-seeds free, so she relies really heavily on corn!! Feeding the two of them so differently would be a royal pain, but I've been learning I can do just about anything to help them out!

 

Yes, we have unusual doctors. I consider us really lucky to have them because I always know for certain that they will never recommend pharmaceuticals unless it is absolutely necessary. I haven't brought up the TS concerns yet, though I've mentioned previously the things I am now thinking of as tics. I think I'm going to take him in asap to have ear nose throat check to rule out problems there, then get talking about diagnosis.

 

Thanks again to you all for your responses. This forum is amazing!!

[Claire]

Lara,

 

I am going to sound like a broken record to the regulars here, but the screen elimination is JUST for the test period, which is a week --if he continues to improve even on day 7, then you could go a few more days until he doesn't improve anymore--e.g. you have found his 'tic' baseline with no screens. After that by all means introduce an LCD monitor. But I would look at the research on the links I posted on that thread and others. Sometimes the patterns themselves are triggers--this is why you need to do no screens to find the true baseline--and save the LCD introduction until after you know for sure his baseline.

 

When we reintroduced TV, he watched TV on an 15" LCD TV monitor (doubles as computer), with the monitor brightness turned down (not enough to make it blurry at all--play with the level) from across a well-lit room to minimize the impact. Try 20 minutes every other day (that's a 1/2 hour sitcome with fast forwarding through commercial). If no problems, move to daily. Then you can try 30 minutes If static LCD viewing (meaning not the flashy/rapid computer games) is not an issue, you can even loan an LCD monitor to the school so he can participate in the school program. You need to find out his level. Anyway, for us, LCD viewing (allowed, but limited) for a while, plus treating the immune issues (mercury and vitamin deficiencies) means he can now watch 2 hours a day of LCD TV/Computer combo with no issues. And 10 minutes used to be enough CRT time to set him off for several days. Others here have found the same, I think you need to still find the healing needed to get past this. IF it is a trigger of course.

 

Re the corn, I hear you!! We had to remove to wheat/milk/corn/eggs (plus others) for a while and that eliminated most attractive gluten free choices for 5 months--glad that time is over. My point was that they have pretty accurate IgG tests for the casein and gluten issues (www.enterolab.com, $99 each), so that you don't need trial and error restriction. Same with the general foods...www.elisaact.com

 

As for the gluten elimination trial, here is a wonderful forum--the only other forum I have found as supportive as this one--that is dedicated to gluten-free eating, including issues and recipe ideas, and open discussion of symptoms, how long it takes, etc. You might ask how long it took them to see 'nicely formed stools', as they call them. The diahrea is likely indicative of a food and/or yeast issue, as you know.

 

Though Great Smokies does a stool test (our DAN doctor ordered it) to rule out parasites or other pathogens, e.g. clostrodia..(sp).

 

Houston Neutriceuticals makes 3 enzymes--one for milk/wheat/soy proteins--with the commonly missing DDPIV enzyme, one for flatulence/diarhea due to poor carb/fat digestion, and one for phenols. I just tried the second one for carrots 2 times (my only issue) and it actually worked. THe FDA considers these safe foods, so you could just try them--I think it only takes a week to see results. We are just doing the protein one and the carb one as needed. I don't want to test too much at once. You can order them on-line. The one nice thing about irritable bowel is that you can tell for sure if it works. However most people require elimination if gluten is a big issue. Some use enzymes for infractions such as Thanksgiving.

 

Good luck again...please let us know if you do no screens for a week what the improvement from this week was or wasn't. Given no studies, this anecdotal compilation is the only measure we as a group have, so it is important to know either way.

 

Given the diahrea, I expect other nutrient deficiencies such as magnesium are contributing--I really hope you do a vitamin tests. There are other vitamin tests, but spectracell does antioxidants too, which is important to understand if he does have metal issues, as it impacts treatement.

 

Claire

[lauramacf]

Claire,

 

Don't worry about sounding like a broken record! I'll keep working on my husband on the screens tests because I believe you are right about that, and also because the doctor ordered no tv and computers (she says no more than 1/2 hour per week--at which point it is probably better to just drop it altogether). It is really hard to gain DH's cooperation on this matter even for just a weekend, since DS is not watching or using the computer at home during the week. TV issues are a flashpoint in our relationsip, for some reason. I was actually thinking last night of looking into taking a mini-vacation to get away from the screens (though hubby bought a van with a dvd player in it!! so even that may be tricky!)

 

We tried houston enzymes this summer and really only stopped due to finances. I think doing the enzymes does help him with gas, and if we learn that he doesn't have celiac or some other reason for complete avoidance, we'll probably go back to using the houston enzymes. A friend has offered some spare no-fenol, but I'm feeling overloaded with stuff right now, so i think I'm going to stick to what we're doing with diet for now.

 

On the vitamin testing, do you know if the results would be better if I stopped giving him all the supplements I've been giving?

 

Also, back on the subject of whether this is tourettes or not, how is tourette's differentiated from other tic disorders? Is the presence of tics the only significant symptom of tourette's?

[lauramacf]

Oh yes, Calire, what is the GF forum you referred to? I don't see a link!

[Claire]

Laura

 

whoops, forgot the link to the gluten free/celiac board

http://brain.hastypastry.net/forums/forumd...splay.php?f=141

 

I am impressed--I just heard about Houston Neutriceuticals from Jennifer this month. I agree, best only if not a serious issue vs a temporary sensitivity.

 

Even so, I have heard that they help even for those already gluten/casein-free. e.g. for egg and corn protein also. We are doing them while gluten free. No milk, but some cheese. I try to limit cheese though...

 

I have the no-fenol too, but am just doing the protein one for him right now--too many pills, too many factors. The Zine-prime (carb/fat) one is great for me and carrots--my problem food. It actually works, amazing.

 

I love the mini-vacation idea. Can't you forget to pack dvds? Booktapes are great for long car rides.

 

Call Spectracell and ask if they require no vitamins a few days before. I don't think so. It is at the cell level, so they are looking at cell absorption vs intake. However, certainly if you have addressed a vitamin deficiency, it won't show.

 

Did you see my note asking if you could email the site editor sheila@latitudes.org?

She is writing a book and would love to quote a doctor about the TV/computer restriction. You would stay anonymous.

 

Claire

[lauramacf]

Claire,

 

Just saw the note, I'll email her, but I should clarify that the doctor's recommendation wasn't regarding tics in particular. This doctor is just pretty anti-tv in general and I haven't yet mentioned the tics to her since it has only just occurred to me that these may be tics (I'm taking him in tomorrow to rule out any othr explaination for the throat clearing).

 

The doctor's recommendations for eliminating TV viewing followed consultation about ADHD, and is just a big part of the philosophy of this particular medical practice that TV is harmful. I'm quite sure she would agree with the conclusion that TVs and computers trigger tics, however. I'd be more than happy to ask the doctor if she wouldn't mind being contacted about screen issues.

 

thanks for the links and info!!