success stories...please!

[Hedgie]

I know everyones course with TS is different.....but is anyone on this site that has had success......complete elimination with tics or such that no one would know. I have spent hours on the internet looking for answers......but everything is vague. I hear the fortunate few outgrow this condition although it says there is no cure. What does that mean . If things get milder as you get older...what exactly is mild when compared to someone who does not have TS. I'm so worried about my son and need to manage my expectations. Everything seems vague. Can TS actually be disguised as you get older so others don't know you have it? I read about an Arizona Beauty pagent gal that out grew TS by 15 ( Jennifer Smeasted)...is that possible or did she never have real TS. Just trying to get clarity on what TS looks like in the group that has relief as they are older. Is it possible to have it be so mild later in life that no one knows? I read some sites that say they were unaware their spouses had it when the met them...is that possible? So many conflicting stories......just trying to understand how the future looks

 

 

 

 

[Chemar]

Hi

yes

I have my son's success story linked in my signature below .

My son still has genetic TS...there is as yet no known "cure" for that. But his tics are almost non-existant and most people who have not known him since childhood, do not have any idea that he has TS

 

Tics caused by other conditions also often resolve when the cause is addressed

 

There have been many success stories here over the years but remember, most people who have had tics resolve move on and don't keep posting ....

[WriterGenevieve]

Hi there! I tried posting a reply in this section yesterday but it ended up being posted as a new forum post altogether. I have had success with drastically reducing my son's tics with elderberry syrup (you can buy it at a health food store or make it). My full post about my experiences and trials with things and how this has worked for my 9 yr old son is here: http://latitudes.org/forums/index.php?showtopic=22203&hl= I hope it helps!!!

[Chemar]

welcome Genevieve

So happy to hear of the success you are having with the elderberry syrup.

 

Just an FYI that you had placed your first post on a different thread and so it was given it's own so it would not get buried on that long running one related to my son.

 

Also wanted to link another thread that was started here some years ago on various treatments that had brought success

http://latitudes.org/forums/index.php?showtopic=3558

[SafePlate]

Yes. Please visit www.SafePlate.net - too much info to put here. My daughter, Jessica, suffered with a movement disorder for 5 years. The tics, OCD behaviors, ADHD and trouble sleeping were disabling. We tried supplements, diets and other therapies. After years of research, trial and error, I found the least invasive and least expensive therapy to be the most effective. She experienced a 95% improvement in symptoms within a month on a GMO-free diet. SafePlate is informational, safe and without anything for sale. My hope is that if we can help another family, it will bring meaning to the years Jessica suffered. Please contact us through the site if you need any support with a GMO-free diet or to share your success story on a GMO-free diet. Best wishes!

[mar]

Hedgie

 

One can never say it will go on forever. Every one is different. I don't believe you grow out of it without trying something. My dh has ts that never really brought the radar on till ds had symptoms . We controlled my sons with diet. Years of diet has my son at 11 doing so well that he is way better off then dad. Dh tics but ds is doing awesome. You just don't know and you can't compare. You also can't sit back and what to see what happens. This is from my experience. You need to find out what is causing it and making it worse. Do not dwell on the ts diagnosis. If your child is young it could get better. My son was horrible at 8 and tics and what not and now this past year at 11 he is doing well. Diet made a huge change. Bc of dh I assumed he would always be ticking but he is different and doing well because of diet!!!

Mar

[Pilbara]

I think I am having wonderful success with my son's tics. The worse he has been in when I started seeking help and information about his tics which is now 12 months ago. Through the information and support in the TS community and following their advice, my son has been detoxing from heavy metals and on a program of supplementations. He has continued to get better and his tics are at an absolute minimum and most people don't know he has them. He does meet the criteria for TS with both verbal and motor tics now, but the tics are only a few times a day and mostly I'm the only one who is familiar and notices them. So I would class my son as very mild, he does a hand clap, has a breathing tic and his verbal is a "w" sound. They probably only occur between 5-10 times a day, His improvement has been amazing so have hope. The stories of the people in this forum who have had success is inspirational and is the reason I went the alternative route. Best thing I've ever done.

[max_bar]

I think I am having wonderful success with my son's tics. The worse he has been in when I started seeking help and information about his tics which is now 12 months ago. Through the information and support in the TS community and following their advice, my son has been detoxing from heavy metals and on a program of supplementations. He has continued to get better and his tics are at an absolute minimum and most people don't know he has them. He does meet the criteria for TS with both verbal and motor tics now, but the tics are only a few times a day and mostly I'm the only one who is familiar and notices them. So I would class my son as very mild, he does a hand clap, has a breathing tic and his verbal is a "w" sound. They probably only occur between 5-10 times a day, His improvement has been amazing so have hope. The stories of the people in this forum who have had success is inspirational and is the reason I went the alternative route. Best thing I've ever done.

 

 

Could you please describe the detox therapy that your son is undergoing? I am interested in learning about it for my son as well. Thank you.

[rowingmom]

In our journey through PANS-induced Tourette's (in my daughter's case a bartonella infection caused her PANS symptoms) and daily charting (stacked Excel bar chart) of symptom level (1-10) against protocol change, I have come to the realization that for our daughter at least, ticcing is associated with toxin buildup.

 

She probably has some trouble detoxing because of her MTHFR deletion, but the extent to which this has impacted her methylation pathways is unknown. Gut health is very important, so leaky gut (caused by lectins in grains/legumes, or from yeast overgrowth) may be a significant contributor to toxin levels as well.

 

In our daughter's case toxins may have come from any number of places - metal in vaccinations, pesticide burden, yeast and bacterial die-off (resulting either from her own immune system addressing infection or the result of die-off from multiple abx protocols), flouride in water which binds iodine receptor sites in the thyroid. EMFs which cause improper electrical stimulation of cells (our cells and nerves function using the exchange of small electrical charges). Stuff is everywhere these days.

 

I do know that by eliminating most pesticide laden food and GMOs (which impact the gut by killing friendly probiotic bacteria), healing the gut by using a mostly Paleo diet (no grains other than fermented organic oats and California grown organic white rice), addressing bartonella infection using abx and now herbals, parallel treatment with probiotics to replace bacteria killed by abx, we have seen a huge improvement in ticcing.

 

Before bartonella treatment we were seeing complex motor ticcing (spinning, jumping, hand sniffing) as well as other vocal/motor ticcing which included mouth stretching, eye blinking, eye rolling, neck stretching, arm pumping, leg stamping, hair flipping, head nodding, tongue protrusion...the list went on, no complex vocals though, just single vocalizations.

 

During treatment we saw an increase in these behaviours with protocol change, I assume because more or different bacteria were dieing off with each increase/change in antibiotic. With detox (epsom salt, lemon water, psyllium husk) these herxes would resolve within a week leaving her with less ticcing each time than the time before.

 

Her ticcing has been at a low level now since April. At a 1/10 (which for me means her ticcing only happens when I question her about it for daily charting information) her Tourette's is in remission. This would make sense in the light of other's observations that changing to a GF/ CF/non-GMO/organic diet (which would essentially eliminate any number of toxins) could have positive results.

 

Her ped psychologist is quite impressed that we have discovered that, for our daughter anyway, Tourette's seems to be a toxin overload reaction.

Edited February 2, 2014 by rowingmom

[Pilbara]

Max-Bar If you think heavy metals may be an issue for son, then the best place to start is with a hair analysis. My son proved to be toxic in Aluminium, that in itself lodges in the brain and central nervous system. Aluminium is everywhere from our water supply to cooking appliances, personal care products, food storage, it's the most heavily used metal on earth. If you have gone through this forum, you will find a lot of children with tics also have an inability to cleanse their system from heavy metals due to low glutathione levels.

For us, we have had to carefully consider all sources of exposure and either removed or controlled them as much as possible.

Epsom salt baths help and my son has been taking Chelatox for the past 6 months. In any detoxing you need to go slow and steady, you want to remove it slowly in order to allow the body to rid itself of it and not cause more damage in the process. Lots of information on the internet about detoxing, so do your research. Rowing Mom has said a lot of what you need to know. I've been lucky and not had to be so extreme with diet, however my son is TS only and has shown no reactions to foods. I personally follow Paleo myself which does tend to flow onto my children. I think we are fairly luck in Australia in that we don't have so many GMO foods, but I am concerned about food quality and buy organic where possible and all our meat is grass fed.

Supplement wise my son takes a good quality Probiotic with 4 strains, minerals, a multi, liver and bowel tonic (from herbalist), Magnesium/Taurine in his CalmX, a powder called Gut Health and Omega 3. Everything should be tailored to your child's needs and no two children seem to be on the same routine. What I do find is that when he is not on his supplements the tics increase once his stores start to deplete, so I know everything that he is taking is really helping.

Just reading under Rowingmon's post the issues her child has gone through. I just want to say, how amazing it is to read this information and know that her child is currently symptom free. It just gives you so much encouragement that we are on the right track.

[JaneFBH]

Thank you all for this extremely hopeful and helpful thread. My daughter's tics also got much, much worse when we started looking into the cause and treating her - has anyone else had that experience? Waiting for more bloodwork to determine if PANS related.

 

Question - Assuming not PANS - How long did it take to see results on different regimens? My DD is so sad, so tired of this interfering with her life. I have just started her on KidsCalm and am planning to add Taurine. She has been gluten free and virtually dairy free for almost 2 years since when tics first began (they just got worse in last 2 months). Working on lowering sugar intake and no GMO's. She does have MTFHR and is taking a probiotic, but nothing else for gut yet - she is resistant to taking meds/supps so I am waiting to introduce more supplements. Also taking elderberry for autoimmune issues as I read that is good.

 

Also - my DD feels so alone. She is 12 and we live in NJ. Does anyone know of any support groups, or is anyone willing to start one?

 

Thank you all - this forum is a lifesaver.