These Treatments Helped us!

[Chemar]

I thought it might be helpful if we keep a running thread where we can try to compile a database, all in one thread, of the many things we discuss that have helped reduce tics, OCD & other associated issues that we represent here. Having each member "summarize" their child's diagnosis and /or symptoms and then document what has helped, would really be so beneficial for all of us as reference, and especially for newcomers to be encouraged by

It would be appreciated if we not use this thread for discussion but *ONLY TO DOCUMENT* our stories

thanks!

----------------------------------------------------------------------------------------------

here is our story:

( I have the details at this link(long thread!) 

Short version:

My son has had "issues" since birth (conception if genetics considered, as he has inherited Tourette Syndrome spectrum of disorders) and is dx with ADD (no H) Central Auditory Processing Disorder, Sensory integration Dysfunction, Tourette Syndrome, OCD, anxiety ( and more recently Crohn's)

Meds have all had horrid side effects, and it wasnt till we drastically changed his diet & added needed supplements that we saw relief!

Important factors:

----nothing chemical or artificial 

eg no sugar substitutes like aspartame/nutrasweet and sucralose/splenda, absolutely no high fructose corn syrup,

no artificial food colorings-dyes

no artificial chemical additives ....if it has a long list of ingredients it is usually a big NoNo,!

no MSG which is so prevalent and goes by hidden names

no preservatives including ubiquitous sodium benzoate,

NOTHING chlorinated and no white flour, white sugar etc (my son is very reactive to chlorine & derivatives)

etc

My son doesnt appear to have any natural food Allergies ie no gluten or dairy intolerance but is highly reactive to chemicals in foods and environment, and has dustmite and some other environmental allergies. He has a diagnosis of Multiple Chemical Sensitivity (MCS)

We found out via alternative physicians testing and personal research what nutrients my son was deficient in

Bonnie Grimaldi's pioneering research and sharing of what she had used successfully was a blessing and helped formulate a supplement program for my son! Her Bontech supps werent around then but she had a website with her program which I and his physicians used to formulate his regimin (Sadly BonTech now discontinued) Magnesium and taurine along with good multi vitamin/mineral supplemts(s) seemed to have greatest benefit for his tics-- tho I firmly believe they need to be in combination with other vital nutrients (eg omega 3) to work optimally, and that it was his combinations of supplements that helped his tics reduce in frequency, duration and intensity, as well as helped in not having the OCD such a controlling factor in his life.

Heavy Metal testing required chlorella to help chelate mercury out of his system and also then had cilantro and ALA to mop up any remaining mercury (note ALA should never be used first as it can carry mercury into the brain from what I understand)

Initial treatment for the Candida albicans ("yeast") infection to his GIT was a very careful diet for a couple of months with capprylate (caprillic acid) as the yeast buster, and organic Kefir and natural yoghurt to restore good flora. We later found Candida Support by NOW and find it excellent whenever yeast regrowth is suspected

We did have strep antibody bloodwork done at Shands (Dr Murphy) bu he was considered not to be PANDAS, tho PITANDS is very likely IMHO as he has had microbial exposures according to radiogenics/transdermal testing we had done, and he has used anti-microbial supplements like monolaurin, olive leaf extract and oregano oil, amongst others

He finds acupuncture the most helpful therapy (we have a therapist who does it in combination with biofeedback therapy and other holistic electronic therapies,plus reflexology, chinese cupping, aromatherapy, herbal teas etc!--all in one hourlong session @ $85!!! )

He also has monthly chiropractic adjustments to help what tics tend to put out of alignment

He had some Cognitive Behavioral Therapy for the OCD and Tourettic OCD (when Tics and OCD morph into each other)

Occupational Therapy was also very helpful for the sensory integration problems (he has always been very sensitive to light, certain sounds, smells, some tastes and oh so hypersensitive tactily)

Epsom salt (magnesium sulfate) tub soaks are very helpful to his tics and general relaxation

His Crohn's is also being wonderfully controlled with careful diet and GIT healing plus substances plus anti-inflammatory supplements, which seemed to also benefit the tics

Also--Minimizing stress and keeping things as stable and relaxed as is possible has made an enormous impact on his overall health.

OK I think I covered all ours tho I will likely remember more and need to edit in

 

It would be so helpful if other members would share their effective testing and treatments here too please

thanks

[CSP]

Great idea Chemar,

 

Son has TS passed down from his father and grandfather.

 

Son exploded with tics late in the year 2005, he had turned 12yo and had 2 shots 6 weeks earlier. This is also his first year in public school.

 

Started with the diet and allergies. He was put on clonidine patch and his body calmed down a lot, but he was not the same child, and it did not take any of the vocal tics away. Took him off the patch after a month and lots of prayer. His body tics were almost all gone, but the vocals were still real bad. Then after 10 months med free his screaming got so bad he was put on Risperdal. Vocals did go down but never gone. After 6 months on risperdal weaned him off and his vocals have been the same as they were on the risperdal. (does wax and wane though)

 

Tests done anywhere from 2006-2008

 

tested for PANDAS, (neg)

OAT- done by Metametrix

Tissue Mineral Analysis, and Dietary profile- done by Analytical Labs

Vitamin deficiencys- done by Spectracell Labs (Feb. 2007 and then again Nov. 2007)

IgE- done by LabCorp

IgG- done by Great Plains Lab

gluten free as of May, 2008 (really no change in over a month so far)

 

 

He is now 14 1/2yo. As far as I can tell excitment is his biggest trigger. He has days where he will go up to 30min tic free, to days ticcing every second.

Overall he is doing much better then in 2005/2006 but it has been so slow that it is hard to see the improvments.

 

Good Luck to all,

[patty]

Shortly after my son turned 6, he had a sudden & acute head tic, then later with other motor & vocal tics.

 

We have done the following treatments: acunpuncture, chiropractic, CST, Chinese medicine, ND with supplements, NAET & Bioset.

 

My son's tics did calm down after about 2 acunpuncture sessions, but the needles caused him much stress & anxiety, so we abandon this treatment plan.

 

My son had modest improvement with chiropractic.

 

NAET has eliminated his asthma and chronic bloody nose. It also helped some with his environmental allergies.

 

CST has been very helpful with his neck pain that triggers his neck tic. It is almost completely gone.

 

Unda #s from my son's ND seems to be helpful as well.

 

Kids Calm & epsom bath is very helpful for stablizing the tics.

 

I have switched from NAET to Bioset recently. I believe this will eliminate my son's allergies and tics. I will report more on this after more treatments.

 

Finding a qualified practitioner made a world of difference in my son's well being & tics. We have gone thru 2 CST therapists and the 3rd one who is also my son's ND gave very positive result. Also, we have gone thru 2 NDs. My son's first ND caused more damage than good. However, our current ND made progress with my son.

 

My son is 98% tic free and when he is waxing, it is mild & infrequent and gone within days or sometimes just hours. Even when he is waxing, he is about 90% better than before. For parents out there who are new to this, i would say things do get better and become manageable. I have great hope that many of you will find your way and my son will be completely tic-free.

 

Pat

[Nan]

My daughter's tics (at that time I didn't know they were tics) started soon after she turned 5. It started as a throat clearing tic which we thought was due to seasonal allergies and kept treating her for it. The tics did not improve at all and we were really confused as to why none of the allergy meds are helping her.

 

A year went by with her throat clearing tics still present. A few months ago, her throat clearing tics stopped completely and were replaced by eye blinking tics. That is when I stumbled upon this website and realized that what she has been having all along were tics.

 

Then we tried magnesium for a while with minimal improvements. I discontinued magnesium when I didn't see any value in giving it to her.

 

We did allergy testing and found she was allergic to quite a few common food allergens, egg being the main one. After we eliminated the food allergens from her diet, she is now completely tic free and has been like this for a couple of months .

 

I will continue to monitor her and update the boards if anything changes.

 

Hope everyone here finds the path to recovery from tics soon.

 

-Nan

[JennyC]

My daughter had small tics when she was as young as one but at the time I didnt realize what they were. When she was 2 1/2 she woke up one day and just started blinking this prolonged blink with both eyes, within a day she was ticking with both arms and within a week her legs were going too. Taking her off of dairy has drastically reduced her tics.

[Guest]

I was diagnosed with Tourette Syndrome at age five after visiting several doctors. At two years of age, I also stopped eating all of my favorite foods and had a very limited diet which included only 2 fruits, and 3 vegetables, along the meat, bread, dairy, etc. My TS became very severe with tics occuring every few seconds, and I was taken to Yale Hospital and also to a hospital about five hours away from our house.

 

Around 13 years of age we started vitamins using Bonnie's old vitamin program before the all in one vitamins. This helped a lot with my tics, and my tics became moderate. Around age 18 I started getting massage therapy about every month to find out that this stopped my head jerking tic. So massage helps a lot because the head jerking tic was always very painful. When I was 20 years of age, I started receiving acupuncture once a month with Chinese cupping. I found that Chinese cupping provided the same benefits as the massage did so I discontinued to the massage therapy and just went with the acupuncture and Chinese cupping.

 

Also at 20 years of age, I had allergy testing and IGG sensitivities done. I found out that I was allergic/sensitive to many foods, dust/molds, and pollens, so I started allergy shots. Prior to allergy testing I had been on Risperdal and Clonidine for about 10 years, but for the allergy testing to be done I had to go off the Risperdal. I remained on the Clonidine. The allergy shots helped a lot in bringing my tics to a mild condition. Soon after starting the allergy shots I was able to go off of Clonidine and become medication free. I continued the shots for about 3 years.

 

I am now almost 23 years old and doing well. I have remained medication free. I had to stop allergy shots and all supplements except for a basic supplement recently because of other health reasons(nothing to do with the tics). I plan to go back on them in 1-2 years from now because they help so much with the tics.

 

Carolyn

[JennyC]

I forgot to add that we also removed all chemicals from our daughters diet and as many from her enviornment as we could. We follow the Feingold Diet

[Phyl]

My now-16-year-old son had severe tics that started as throat clearing and eye squeezing in 1st or 2nd grade. These came on gradually just after we tried him on 10 days of the stimulant Ritalin for attention deficit problems. He developed both small tics like jaw stretching and finger to thumb rubbing, and full body tics, like doing pirouettes while walking and painful stomach tics. One of his most difficult verbal tics was when his speech became interspersed with "t-t-t-t's". Most all of his motor tics, however, were bilateral - he'd do them on both sides of his body simultaneously and symmetrically. Also, an important part of his history is that he had had numerous ear infections while an infant as well as fluid behind his ear drum that wouldn't go away. His doctor had prescribed him a continuous regimen of antibiotics to try to lessen the fluid, but of course that was useless and he had tubes put into both ears at 21 months old.

 

After he would eat, I often thought that I noticed my son’s tics would worsen. Sometimes, his tics would seem to be taking a break, but they would develop again after a meal or snack. After a while, I could pinpoint certain foods in particular that would cause him to tic. Anything made with milk (like cheese that he loved), sometimes made him repeat a “hmm, hmm, hmm” sound, sometimes so quietly that I had to be very close by to hear it. We took away milk and milk products from his diet for a while, and if perchance he ate any dairy by accident, he’d get a violent reaction, clucking and almost retching. Also, whenever he had a food or candy colored with artificial dyes, these also caused his tics to accelerate. Worse, he’d behave uncharacteristically antsy, literally unable to sit still, and would wander around after ingesting these dyes for hours. Bright lights also were a trigger for him, as was even a tiny amount of MSG.

 

When he was in 3rd grade we began to work with an MD here who practices holistic and orthomolecular medicine. She's also a DAN doctor. For a long time I gave him Bontech vitamins which seemed to help some. Through lab testing. we found that neither allergies nor heavy metals were causing him problems. Rather, he had a heavy overgrowth of both yeast and clostridia in his gut as well as other parasites (like Dientamoeba fragilis). The Microbial Organic Acid Test through Great Plains Lab was the check we used to see the levels of yeast and clostridia metabolites. Needless to say, he also didn't have enough good bacteria - all this was probably due to the excessive use of antibiotics. We tried large amounts of probiotics and also nystatin, but though we continued the probiotics neither of these helped reduce his tics or the metabolite levels. What did finally help him were a series of three different homeopathic drops by Pleomorphic that very gradually reduced his yeast overgrowth (they were Pleo Alb, Pleo Forte, and one other I've now forgotten) and oil of wild oregano that reduced the clostridia overgrowth. I was quite disbelieving that the homeopathic drops worked but they clearly did, because his tics gradually diminished as we verified that the yeast overgrowth kept getting reduced as shown through repeated Microbial OAT's by Great Plains. The oil of oregano was so strong that he couldn't abide it, so I put drops of it inside empty capsules that I got at the health food store. When the Microbial OAT results showed that he no longer had either yeast or clostridia overgrowth, his tics were at a very very low level and eventually they went away completely. By then he was in 5th grade.

 

He has just completed 10th grade and has not tic-ced since probably the beginning of 6th grade. He can now enjoy dairy again with no repercussions. Bright lights (fluorescent or other) no longer affect him. He sometimes has food or candy with food coloring and they also no longer bother him. I believe that it was the lack of balance of good bacteria and the overgrowth of yeast and clostridia that made him sensitive and caused him these issues. We don't have tourettes in our family history, but do have some ocd. This site was very helpful to me back when he had tics and I still come here at times to check on things. I'm glad to have the chance to contribute and hope this can help someone.

[andreafrazer]

Thanks everyone for your help so far. This forum has been invaluable to me.

 

My son is 5.5 and is seeing a kinsieologist/homeopath for his tics. He used to have severe eye rolls, grimaces, shoulder shrugging and minor vocals. Thanks to food allergy testing and eliminating chemicals, he only really tics noticeably when he is ill or on antibiotics. My questions are 3 fold:

 

1. What is the difference between a DAN doc vs. a homeopath? (I can also research, but any personal advice would be helpful)

2. Are any of your kids really tic free? If so, why the heck is the medical community so against homeopathic treatment? My HMO looks at me like I have 2 heads when I ask about nutrition. It really does seem to help my son.

3. Pandas? My son has this super annoying coughing tic now that came on very suddenly with his strep infection a few weeks ago. How do diagnose Pandas, and if it is Pandas, what to do?

 

Thanks in advance! I'd really love to talk to someone about a direction I'm heading in. I'm driving my husband bonkers! Ha!

[Phyl]

In answering a question to someone, I recalled a suggestion that I wanted to make for anyone trying to help their child or themselves with tics. Keep a "tic log" to try to see any progress and any triggers. When my son had tics, upon a friend's recommendation, I was very consistent about keeping a log in one of those hard composition-type notebooks and that is how I could see which foods and environments were triggers for him. Eventually I could also see how much better he was getting with treatment. Truly, I had forgotten some of the horrible times he had, and so the log was very helpful to look back upon, both for reporting to the doctor and for understanding myself what was happening.

~Phyl

[lurker]

Phyl,

 

Please know how much we appreciate you. Coming back after your journey has ended, so to speak, to encourage, advise, and help others is just so helpful and encouraging.

 

Thank you,

 

Tami

 

Ps.

 

Cheri, I don't believe I have properly thanked you either! Thanks.

[deby]

My now-16-year-old son had severe tics that started as throat clearing and eye squeezing in 1st or 2nd grade. These came on gradually just after we tried him on 10 days of the stimulant Ritalin for attention deficit problems. He developed both small tics like jaw stretching and finger to thumb rubbing, and full body tics, like doing pirouettes while walking and painful stomach tics. One of his most difficult verbal tics was when his speech became interspersed with "t-t-t-t's". Most all of his motor tics, however, were bilateral - he'd do them on both sides of his body simultaneously and symmetrically. Also, an important part of his history is that he had had numerous ear infections while an infant as well as fluid behind his ear drum that wouldn't go away. His doctor had prescribed him a continuous regimen of antibiotics to try to lessen the fluid, but of course that was useless and he had tubes put into both ears at 21 months old.

 

After he would eat, I often thought that I noticed my son’s tics would worsen. Sometimes, his tics would seem to be taking a break, but they would develop again after a meal or snack. After a while, I could pinpoint certain foods in particular that would cause him to tic. Anything made with milk (like cheese that he loved), sometimes made him repeat a “hmm, hmm, hmm” sound, sometimes so quietly that I had to be very close by to hear it. We took away milk and milk products from his diet for a while, and if perchance he ate any dairy by accident, he’d get a violent reaction, clucking and almost retching. Also, whenever he had a food or candy colored with artificial dyes, these also caused his tics to accelerate. Worse, he’d behave uncharacteristically antsy, literally unable to sit still, and would wander around after ingesting these dyes for hours. Bright lights also were a trigger for him, as was even a tiny amount of MSG.

 

When he was in 3rd grade we began to work with an MD here who practices holistic and orthomolecular medicine. She's also a DAN doctor. For a long time I gave him Bontech vitamins which seemed to help some. Through lab testing. we found that neither allergies nor heavy metals were causing him problems. Rather, he had a heavy overgrowth of both yeast and clostridia in his gut as well as other parasites (like Dientamoeba fragilis). The Microbial Organic Acid Test through Great Plains Lab was the check we used to see the levels of yeast and clostridia metabolites. Needless to say, he also didn't have enough good bacteria - all this was probably due to the excessive use of antibiotics. We tried large amounts of probiotics and also nystatin, but though we continued the probiotics neither of these helped reduce his tics or the metabolite levels. What did finally help him were a series of three different homeopathic drops by Pleomorphic that very gradually reduced his yeast overgrowth (they were Pleo Alb, Pleo Forte, and one other I've now forgotten) and oil of wild oregano that reduced the clostridia overgrowth. I was quite disbelieving that the homeopathic drops worked but they clearly did, because his tics gradually diminished as we verified that the yeast overgrowth kept getting reduced as shown through repeated Microbial OAT's by Great Plains. The oil of oregano was so strong that he couldn't abide it, so I put drops of it inside empty capsules that I got at the health food store. When the Microbial OAT results showed that he no longer had either yeast or clostridia overgrowth, his tics were at a very very low level and eventually they went away completely. By then he was in 5th grade.

 

He has just completed 10th grade and has not tic-ced since probably the beginning of 6th grade. He can now enjoy dairy again with no repercussions. Bright lights (fluorescent or other) no longer affect him. He sometimes has food or candy with food coloring and they also no longer bother him. I believe that it was the lack of balance of good bacteria and the overgrowth of yeast and clostridia that made him sensitive and caused him these issues. We don't have tourettes in our family history, but do have some ocd. This site was very helpful to me back when he had tics and I still come here at times to check on things. I'm glad to have the chance to contribute and hope this can help someone.

 

Phyl,

Could you tell me who was your son's DAN doctor? did she recommended the Great plains tests?

I'm starting to think that my son has the same problems.

Thank you!

[laurena82]

I guess I hadnt seen this thread before.

 

To add my son's story: (he's in his 20's now)

 

His tics started around age 5-6, heavily noticeable by age 7.

 

At age 8, I took him to a chiropractor who did APPLIED KINESEOLOGY and determined a variety of food allergies. (corn/wheat/eggs/dairy/chocolate). When we removed all of these food allergans from his diet, his motor tics were reduced at least 90%.

 

He also stuttered and had vocal tics. Stuttering itself is considered a vocal tic as well. The food allergy avoidance did NOT help the stuttering, and he still had some of the other vocal tics (high pitched sounds at intervals, etc).

 

However, at age 10....although he had BEEN seeing a speech therapist through the school weekly since age 6......I took him to a DIFFERENT speech therapist, who had additional training in treating DYSFLUENCIES (of which stuttering is). In less than 6 months,....he was fluent.

 

Now, a good 15-20 years later....he is still fluent, and doesnt have noticeable tics.

 

 

 

 

 

(note: the food elimination was VERY difficult to manage to eliminate EVERYTHING....so, there were a few years where we eased off on the diet, then put him on clonadine --Catapres---a low dose, and it was effective as well. )

 

I would also note that we tried allergy NEUTRALIZATION drops for the food allergies....and , for whatever reason, those DIDNT reduce the motor tics, however completely avoiding those foods did. I know many other people would swear up and down that the neutralization drops worked for them.....but ---for what it's worth--that's not what we found.

 

 

BEST WISHES to all of you !

[Nate]

I hope this is posted correctly and helps someone. For the past couple years my wife and I have tried "everything" for our daughters tics. Getting rid of decor and furniture, removing duct work from house, no fragrances whatsoever, food rotation, no gluten and other dietary regimens, magnesium, and many others. I have had gout for the past 15 years and daily check my uric acid with a home meter. It runs in my family as well as migraines and vertigo. We recently figured out that if my daughter and I eat a very strict low histamine diet that her tics are much much better and I can keep my uric acid below 6mg/dl. Raw goat milk is the mosy beneficial food for both of us. Our diet consists of fresh beef, eggs, einkorn flour(not whole and no yeast),raw honey, kale,bok choy,cucumber, frozen blueberries, apple, watermelon, dried and boiled fresh pintos (no leftovers), corn, and a little potato. Many things raise our histamine such as exercise and fragrances. The diet allows us to keep histamine lower. Her tics were horrible (constant jerking head back, eyes, sniffing, shoulders, and others) and she would get extremely emotional and irritable after eating anything with citric acid. There is clearly a genetic issue with breaking down histamine (mthfr?). Eating low histamine has been miraculous for both of us! She had always eaten a healthy no processed diet so this shook us. She has never even had processed sugar. I hope this helps someone else.

[Chemar]

Bumping up this old thread as it just might have helpful info for anyone looking for tips on what may help to reduce tics, and others may want to add their own helpful info too.