Updates from members - successes or not

[kcjstaine]

I have been on the site only once before as a poster. About 2 years ago. My son dx TS 3 years ago. There is sooo much literature out there to sift through and stories to read about. I'm curious how many of you have seen TS proceed in the way most of the medical sites say it should (fully recognizing that this is very much a case-by-case condition). But most of the peer-reviewed studies say that the time of highest symptomology is between ages 8-12 or 9-13. Followed by a reduction in intensity as adolescence continues. For those of you who have travelled through this time period with your children - can your verify this statement/contention? With those who have older children....mid to late teens - what have you observed? The data says that about half of all TS patients are essentially tic free by 18 and another 25-35% are substantially reduced by that age as weel. I am hopeful that my son, as well as the vast majority of children will "grow out of" the days of high symptomology. It's just nice sometimes to get reinforcement of that hope by those who have travelled that road already. Any and all responses are appreciated

[Chemar]

Hi again.....

 

I have documented my son's journey in the link in my signature. He is now 23yo and his TS has become negligible in overall health. But his improvement began back during those ":peak" years, which I attribute directly to the nutritional/environmental changes we implemented. That did not "cure" his TS....but it definitely made what was a very severe case much milder. I do think that as he has passed out of the "hormonal" teen years, so things have also stabilized. yes he still has TS and yes, he still has some tics, but most people would never notice them or know as it really is so mild now.

[croatian mum]

Great topic!!

 

looking forward to see some answers!

[ilovedogs]

My son is 14, he started tics the day he turned 9. It was like a biological switch was turned on for him. His tics are the worst they've ever been in the past 5 years. He got braces put on back in April and has had a few new tics since then including a low vocal breathing tic. He is late going through puberty and is just now showing signs of those 'boy' changes so I also attribute the higher tic increase to hormonal changes. Anyway, he thinks the braces are part of the reason he tics more, which could be likely so I'm hoping that once he's through with treatment that we'll see some improvements. Of course, he'll also be passing through puberty and maybe that will also create positive changes for him.

 

We intend to do more testing on metal allergies and food sensitivities. I will say, however, that it's hard to get teenagers to change their diets. He says the tics just aren't bad enough to him to want to give up bread, milk, or sugar. I do make sure he doesn't eat HFCS and I try my best to keep him away from food dyes, MSG, and nitrates but at this age it gets harder. He spends more time at friend's houses, he is more independent in preparing his own meals, and he resists change in many ways, LOL! Anyway, I really don't have lengthy experience but I am looking forward to hearing other's comments and advice.

[TNLady]

Hi, I'm brand new here. My 9 yr old son has had tics for years but has never been diagnosed. I don't know what benefit there is to having him diagnosed. I'd like to try going gluten-free and other natural remedies, but can do those on my own right? Please let me know what, if any, difference it would make to tell his pediatrician.

 

He started by smelling his hands and grimacing, always pulling his shirt down in the back over and over when he's sitting down, flapping, jumping up and down, and lifting his hands with fingers separated as if in a mime while staring/glaring off in one direction, and also sniffing in suddenly. And now he started also raising one foot in the air so it looks like a Tai Chi move or a pose from the Karate Kid movie.

 

He's always loved numbers and now I notice that he obsessively counts the cars that pass us, the numbers of letters are 7-5-7 in his first, middle and last name, and asks "how many" of everything throughout the day. So - - I suppose I can help him "re-direct" if he gets too OCD with counting weird things. We homeschool, so I'm with him all the time, and his younger brother has none of these traits.

 

When learning to read, he'd count the lines on a page and other odd things, and my husband just thinks he'll be an accountant when he grows up, but I'm concerned he might be too weird. So should we wait it out over the years, trying dietary changes and supplements, or .....? And whether he has Tourrette's or tics, what difference does that make whether it's diagnosed or not?

[Cj60]

The symptoms you describe would lead me to seek help I were to see them in my child.

 

I know that there are forum members who have taken things into their own hands, but when we first noticed tics in our child, we sought help from an environmental medicine practice. We couldn't have figured things out by ourselves.

 

While it seems on the surfact that labeling your son's symptoms with a specific name doesn't seem overly important, it is somewhat significant to have a general idea about what is causing the tics. Are they a manifestation of PANDAS or Lyme and brought on by infection? Are they more in line with TS? Are they caused by a chemical or food sensitivity? Answers to these questions would lead to different plans of treatment. So in that regard, naming might be useful.

 

I would re-post on the PANDAS and Lyme forums to see what members there have to say, in addition to members of this forum.

 

Good luck,

 

Chris

[Chemar]

Hi TNLady

 

Honestly, from what you are describing, things sound pretty mild and do not seem to be disturbing your son's normal functioning. I agree that it is helpful to actually know what is causing the tics and other symptoms like OCD, but frequently finding a good Integrative or Environmental Doctor is easier said than done.

 

Where I agree it is always a good idea to be sure there is no underlying infection triggering the tics and OCD etc, as PANS (as it is now called) is a very real diagnosis that can be better helped if identified and treated early. But please don't become so focused on that, or even a TS diagnosis, and possibly lose sight of the other potential reasons that your child has these symptoms.

 

Most of all, I think it is important for your child not to sense that there is something "wrong" with them and become concerned, as that can often be a trigger in itself. Just do your own sleuthing, and hopefully find one of those rare gem doctors who don't just write a prescription for everything, but are actually clued up and willing to help heal holistically rather than just give stuff to mask symptoms!

[crazy]

I am also curious about what age has highest symptoms and when it begins to taper off. I'm sure that the only people who visit this forum either currently have tics or have kids that have tics. I would love to hear something positive about when it gets easier for the kids. My oldest son is almost 13, he does take topamax but is having a flare up right now (moves mouth to the side all day). This does not bother him. I understand this forum is about natural remedies, which we also use but the medicine has worked wonderful for him. Two years ago the doctors wanted to slowly wean him off to see if he was outgrowing the tics. Within 10 days he had a major flare up, we have kept him on the meds with no side effects. We visit the neurologist ever 6 months. Now my 10 year old has tics and its breaking my heart.

[lmcgill]

I admit, I was obsessed with this forum while we experienced what probably the majority who visit this site do.....panic! We did lots of tests, took many supplements, did NAET treatments, every time hoping for a miracle to stop his tics. Looking back now, when he was about 8 was when they started. He had the arm jerks, shoulder shrug, eye rolling/blinking. He just turned 14 a couple months ago and he has not had body movements since he was about 10, and about the only thing he has now is the odd eye roll or blinking. For us, I think it was and still do think it was wheat or gluten issues. Ever since we took that out of his diet, he has been great. I suppose it doesn't matter to me if he just grew out of it or if the diet changes helped, but the story I want to tell is it gets better but as most people will say, it is a journey. I would like to thank all those that gave me hope, it was appreciated and now I feel qualified to pass that hope along. You can search my old posts and see my journey, when the posts started getting less was a direct time line to my sons tics. I shed a lot of tears and felt helpless and hopeless many times but it does get better, and you will be a stronger more loving parent because of this "journey".

[hopeful2]

Hi all,

 

Our son, D, began a mild tic at age 10 and we were frantic--took him to two neurologists who said he would "out grow it." And, over the

years when I, his mom, could help control the food and environment, we did ok.

 

We noticed a huge link between allergies; digestive problems, and ticcing--all problems that D had. And now research shows that the immune system may be impaired in those suffering tics as well. Our son D has been living on his own, many states away and we knew his diet had really gotten bad--lots of fast food, and

pizza with friends. He is not a drug user but he drinks an occasionally beer.. He does react to mold, dust mites (from earlier allergy testing) and milk has been a problem since he was a baby.

 

However, here he is at 25 with severe ticcing. He did not outgrow it and it has become more severe with almost total body ticcing at times and

it is taking a toll on his mental health, social life, work, and school work. He graduated recently from a big University.

 

So we are back to square one but slowly making progress. The big difference this time, is that he is finally listening and open to try and change his life style. He hates the ticcing and it is starting to cause severe muscle aches as well. Here is what we are doing diet wise (and you MUST read labels!):

 

*Total elimination of any artificial food colors, flavorings, food preservatives, artificial sweeteners, etc. Just real food--if it reads like a chemistry lab, don't buy it.

Point in fact: When D was a kid, he could eat a Twizzler candy, with red food dye, and ticcing would be severe. I never gave him this--but somehow, if he got one

we knew what was going to happen!

 

*Total elimination of gluten (wheat, rye, barley, and sometimes oats) and all gluten byproducts (a massive number!)

 

*Total (as much as possible) elimination of casein (a protein in milk products) we use organic rice or nuts milks instead.

 

*Total elimination of GM foods (mainly corn, soy, canola--see NonGmoProject.org) Genetically modified foods have been linked to immune disorders and other health effects. I've read accounts from Pediatric Allergy specialists who have success treating ADHD, etc. by eliminating GMO foods.

 

*Buying organic when possible for the worst offending foods (see ewg.org Environmental Working Group for a list of their dirty dozen foods that should be purchased organically). This is because so many neurotoxins can be sprayed on produce that will, again, cause neurological problems.

 

*In addition, we are following the work of Dr. Bruce Semon (who promotes most of the steps mentioned above) along with foods that can reduce Candida, an intestional yeast, in the digestive tract. That means foods that do not promote yeast overgrowth: Eliminating all vinegars and malted products, all alchohol, etc.

 

Within 4 weeks time, D is reporting some relief. We know it could take a while, as his symptoms are severe. We are also supplementing with Nordic cod liver oil for Omega 3 fatty acids. In general, D's food choices are getting a major revamping.

 

I would highly recommend these books for all parents dealing with ticcing disorders:

 

An Extraordinary Power to Heal by Bruce Semon, M.D. Ph.D (in Nutrition)--he has reduced ticcing by 95% in some patients just by food choices--eliminating the ones that cause problems--in general much like I just mentioned. See his Stage 4 plans which eliminates all gluten, yeast-promoting foods, etc.

 

Natural Treatments for Tics and Tourette's by Sheila Rogers (who helped found latitudes.org)

 

Wheat Belly by Dr. William Davis (he pulls together all the research on Gluten and its adverse effects--this is honestly one of the most frightening books I have ever read!)

 

Minding My Mitochondria by Terry Wahls, M.D.--a overview of her recent research in how she reversed her disabling Multiple Sclerosis. --mainly through food choices. Her work is based on research by Dr. David Perlmutter, in Naples, FL. (You also need to view Youtube, etc. and find out more about Dr. Perlmutter's and Dr. Wahl's work). Dr. Wahls did a big TED talk that outlines what she did. Instead of being wheel-chair bound, she can now bicycle 18 miles!

 

In addition, D is scheduled to see an Environmental Doctor for further allergen testing and we will fly to Florida to see Dr. Perlmutter. We are very impressed

with his work. Perlmutter advocates a functional approach to neurological disorders--that means looking at food we eat, nutritional deficiencies, environmental factors, etc. He is really doing ground-breaking work.

 

We are hopeful that we are on the right track. In addition we bought D a good HEPA vacuum cleaner (he has carpets in his apt.) and we got a good HEPA air purifier that is completely free of any ozone creation (stay away from ion generators!) We went with Consumer Reports and got a WhirlPool Whispure for a moderate sized room. It has a carbon prefilter and a HEPA main filter. The sound is also very soothing for D.

 

I know this is a lot of absorb--but once you understand the basics, it become easy. We are hopeful that D can follow this and he has shown willingness to

try. He does not want to take hard-line pharmaceuticals that can cause permanent side effects.

 

Thanks, hope this helps, Hopeful 2 (a mom reporting)

[Chemar]

I do just want to mention that where I agree that good nutrition is an essential component to maintaining health and healing disease.......this too is not the "magic cure" for all tic problems.

 

We have had many posters pass through here who have tried all the nutritional suggestions (which btw go back years in multiple threads here) and where yes, many have found it a good thing for overall health, sometimes kids tic for other reasons, and so those issues do need to be dealt with primarily.

 

And for some kids with genetic Tourette Syndrome, nomatter how perfect their diet and environment, some still have waxing phases of their tics. Personally, I do feel there is some inherent "trigger" that is just not identified yet...but still...we have had some posters become very despondent here when they were told that changing diet or adding supplements or whatever else has been helpful for others would help their child too...only to find it did not. So I always add a word of caution that not everyone responds the same way to the same treatment or modifications.

 

Do I personally feel that nutritional changes are important?...most definitely.!!..in fact, I consider them essential, even if they don't bring THE fix on their own. My own son's dramatic improvement and transition from multiple supplements to obtaining most of what he needs from food has been documented here for years! But I know from experience that I cannot tell everyone else that this will work the same way it has for my son...only suggest they try it as imho cleaning up diet and environment is always a good thing, whether people have health problems or not