My daughter has had a throat clearing tic as well as a squeaking tic. BUT she is doing remarkably well and is not medicated. The average person would never know she tics. I know that vocal tics are viewed with dread, I just want to assure parents out there that simple vocal tics are no worse than simple motor tics.
We started a gluten free, dairy free, soy free, egg free, sugar free, no artificial flavours /colours diet on February 20 of this year. At this point my dd had been ticcing for 3 to 4 weeks. We had a couple of her worst days AFTER her diet changes. It was disheartening to say the least But we persevered and her tics are now 99% gone. We’ve since reintroduced eggs and I’ll be trying soy next. She will always be gluten free however. I should also add nightmares and stomach pains and joint pains are also gone. Don’t give up!
I thought this important enough to post. In our healing process we have definitely experienced 'flairs' or flipping of the pages..... While I attribute some of this to new exposures, I also attribute some to Herxheimer's Reaction. Over the last 7 months we have definitely seen the saw tooth recovery with a movement up in baseline of symptoms with less and less of reaction to exposures. It has been a long a tedious recovery BUT because our son's primary presentation was TICS we are able to see a very physical response that is easier to measure than emotional.
The body eliminates toxins by coughing, sweating, peeing or pooping it out of the body. Our son has definitely had coughing jags, chapped lips, yellow poops that all come and go with flairs of symptoms......
I guess what I wanted to say to is 'expect flairs' and anything you can do to help your child eliminate toxins will move recovery process along and their reaction to the flairs of symptoms.
What Is The Herxheimer Reaction?
The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.
A Rose By Any Other Name
Technically known as the Jarisch-Herxheimer Reaction, this syndrome goes by many names, including JHR, the Herxheimer Effect, the Herxheimer Response, a Herx Reaction, Herx or Herks. The most common terminology used is the Herxheimer Reaction. It is also often referred to as a healing crisis, a detox reaction, or die-off syndrome.
History
The phenomenon was first described by Adolf Jarisch (1860-1902) working in Vienna, Austria, and a few years later by Karl Herxheimer (1861-1942), working in Frankfort, Germany. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They noticed that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing. Interestingly, they found that those who had the most extreme reactions healed the best and fastest. The patient might be ill for 2-3 days, but then their lesions resolved.
A Medical Example
The Herxheimer reaction is caused by the release of toxic chemicals (endotoxins) released from the cell walls of dying bacteria due to effective treatment. The Herxheimer Reaction is well recognized in medical circles and is certainly not confined to the world of natural medicine or supplements.
For example, a recent study report (Feb ’04) on the treatment of Sarcoidosis found that, “. . . without exception, the improving patients are reporting periodic aggravation of their symptoms as an apparent direct response to the antibiotics. In other words, these patients say that their treatment makes them feel much worse before they experience symptom-relief.” The abstract of the study goes on to say, “This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues faster than the body can comfortably handle it. . . . This provokes a sudden and exaggerated inflammatory response . . . . In Sarcoidosis patients, the Herxheimer reaction seems to be a valuable indication that an antibiotic is reaching its target.” In the conclusion, the author states: “In my work with Sarcoidosis patients, it is my experience that recovering MP patients understand and welcome the Herxheimer reactions even when they must endure temporary increased suffering. They accept it as the price that they must pay in order to get well and they even seem to find it gratifying to experience tangible evidence of bacterial elimination. “
It's very scary the first time around. I feel your struggle. After 5 years tic-free, it was also kind of scary to recognize that my daughter had started experiencing tics. But then we realized that we know what to do. So far it's been manageable. Hopefully it stays that way.
Doctors may tell you that these things are only treatable with medications. For us, that was just not true. The neuro even rolled his eyes when I told him I was seeing a nutritionist rather than treating it medically. They have their schools of thought and not all of them are based in reality. You're taking the right path. Good luck!
I have been asked to post our treatment protocol a number of times here and by emails so I have finally put it together in what I hope is a simple summary for anyone who needs more info on it.
Although I have a background in Medical Research, with a postgrad degree in Physiology I am not a physician...this is the program that worked for my son, and and I must stress that we were at all times guided by a team of knowledgeable doctors. I urge everyone to work with a qualified physician!
PLEASE NOTE! this post was originally written in 2004, and so has been updated with current information in the later posts of this thread
Hope this answers your question...feel free to contact me if you need more details -------------------------------------------------------------------------- FIRST: I need to clarify that my son has genetically inherited Tourette Syndrome, and that my husband and his father before also manifest TS etc
My son uses mainly supplements (vitamins, minerals, herbs and certain amino acids) and healthy diet as his "treatments"
He was on prescription meds for a year, but had very bad side effects, and not much improvement in tics as well as a worsening of his OCD etc.
His natural treatment plan was enhanced by detoxification from heavy metals (in his case mercury, and chlorella supplement was used followed at the end by alpha lipoic acid)) and also controlling yeast overgrowth(candida) in his digestive tract. (we initially used caprylate by Solgar but then found Candida Clear by NOW to be most effective)
We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG ( beware its hidden names in food...!!), chemical preservatives and high fructose corn syrup) We ran allergy tests and did a process of food elimination, but he doesnt have any natural food allergies per se, only mild p-nut sensitivity so we avoid those. For some folks tho, things like dairy, wheat(gluten) etc can be allergens and so intensify tics, OCD etc
My son was also able to identify other tic triggers that he has such as chlorine (he avoids pools now) and dustmite, mold etc and also most strong smells like in perfumes, and some household cleaners, air fresheners etc (some of this is probably related to his hypersensitivity to sensory things..ie taste, smell, touch, sight and sounds) Occupational therapy [/b] made a big improvement in his sensory issues from the Sensory Integration Dysfunction that so many folks with TS etc seem to have....tho he still removes all labels from inside clothing and wears his sox inside out as the seams drive him nuts
There is an excellent article here at Latitudes on Tic Triggers
http://latitudes.org...ng_triggers.htm
Acupuncture has greatly benefited him too, as has reflexology and biofeedback (NOT neurofeedback) In addition he sees a NUCCA chiropractor who uses gentle pressure methods to help reallign him as ticcing frequently causes skeletal misalignment with resultant neuromuscular problems which cause pain and can even trigger more tics too! ( http://www.nucca.org )
He also had Cognitive Behavioural Therapy for the OCD, and occupational therapy helped with many of his Sensory Integration issues
In addition we tested for PANDAs (strep negative) and Pyroluria (not an issue) as these can also be conditions that exacerbate tics, OCD etc
We saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) and she and her team worked together on my son's treatment and testing
The OCD, depression, anxiety and other mood issues were always the most troubling for him, and the improvement that the supplements like primarily 5HTP & Inositol have made there are remarkable! (It is not a good idea to mix some of these with meds tho, so do note that!)
I based the rest of his supplements on Bonnie Grimaldi's researched plan for her child.
http://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but I still use the combinations that I initially implemented for my son, based on Bonnie's protocol but fine tuned to suit my son's specific needs, under guidance from a physician, as it WORKS and so I am reluctant to change anything. ------------------------------------------------------------------------------------------------------------------------------------------
Here is our program
* multivitamin/mineral (the multi has all the good antioxidants,and other RDA supplements and is high in the B group vits, and I add an extra B1 ( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! )
* combo essential fatty acid supp containing flaxseed, borage and evening primrose oil ( My son is sensitive to fishoil, as some people are, but if you tolerate it, it is good to also use that)
* Lecithin
* Royal Jelly
* ginko biloba(for ADD)
* Inositol (for OCD & tics)
* St Johns Wort (for OCD)
* Vitamin B12 as METHYL cobalamin
* P-5-P (vit B6)
in the evening he gets
* 5HTP (for OCD) (please note 5HTP can have bad side effects in some people so use with caution! and NEVER with medications that elevate serotonin!!)
* Methionine (for OCD) (some people prefer samE)
* calcium/magnesium/zinc combo( magnesium = main tic reducer)
* taurine (main tic reducer)
* GrapeSeed PLUS extract Boosts immune system and seems to also promote restful sleep. The blend I use also contains Bilberry for his vision as well as other essential antioxidants) --------------------------------------------------------------------------------------------------------------------------------------------- When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA for short periods)
He used to take L-carnitine, which many folks find very beneficial especially for vocal tic reduction, and relaxation, but lately he seems to get edgy from it so we discontinued it.
The doseage of the supps depends on age and body weight so I have not included it here
I stress again,ESPECIALLY if you are ON MEDS, it is a good idea to talk to a physician before adding or combining some of these supplements as interactions can occur which can be serious.
Here is an excellent site for reading up on the various supps etc http://www.iherb.com/health.html -----------------------------------------------------------------------------------------------------------
I should also mention that when my son began his natural treatments, he had tested +ve for epstein barr virus, tho without mononucleosis. We therefore adopted a homeopathic and herbal/supplement/diet regimin as antimicrobial Things like monolaurin(lauric acid from coconuts) olive leaf extract, and cooking with garlic, ginger, turmeric, plus the candida Clear (which has oregano oil, wormwood, pau d'arco and other antimicrobials in it) Extra Virgin Coconut Oil (we like Nutiva) is also excellent uncooked, and drizzled over food. The probiotics we use are natural Lifeway kefir and Stoneyfield Farms Plain Organic Yoghurt L-lysine is also a good supp to prevent viral outbreaks
information overload???? I will be happy to answer any questions!
------------------------------------------------------------------------------------------------------------------------------------------- EDITED TO ADD: Certain of my son's tics were clearly interlinked with his OCD, and this was especially so with injurious ones. The psychiatrist who was working with him at the time educated us about this interaction between OCD and Tourettes (Tourettic OCD), and also about ENDORPHINS, the "feel good" chemicals naturally secreted by our brains when we experience pain. Sometimes repetitive injurious "tics" can be stimulating endorphins and so the patient keeps doing them because of this natural high. the amino acid phenylalanine, in its D form, promotes endorphin release and my son was on this for a while. It totally stopped these self injurious "tics" It isnt easy to find D-phenylalanine, but the DL-phenylalanine is more widely available. Please note that where just the L form helps with depression, it is the D form that is needed for the endorphin release. A very good way to also increase endorphins is moderate excercise. I should also point out that *some people may tic more from phenylalanine* as it is dopaminergic. This was not so for my son for the short time that he used it, but it needs to be noted.
Also wanted to mention the tremendous benefit my son has from EPSOM SALTS tubs. The magnesium sulfate in the salts seems to have good results on tics, detox and relaxation. He has one most evenings. 2 cups epsom salts in a tub of warm water and approx 20 min soak. He drinks lots of pure water, or chamomille tea while in tub too. Epsom foot baths are good too! as is soaking a washcloth in strong epsom solution and apply to areas where tics happening most. Epsom cream also helps. (1.2 tbsp salts, saucer hot water. dissolve and mix into 1/4 cup aquaphor cream) Morton Salt has a very good Epsom lotion ----------------------------------------------------------------------------------------------------------------
It took us almost two years after we started my son's strict diet before the tics finally went away completely. Hang in there. Don't stop the diet. If he is reacting to corn that strongly then you know you are on to something. You have to remember that antibody levels rise and fall SLOWLY. So it could be that your son has very high anti corn antibodies right now and so his tolerance is non-existent. It could take 6 months to two years to get those antibody levels down to the normal range. We have seen this with our son's gluten antibodies and the stool testing we do annually. After two years he still had elevated antibodies, although they were really close to the normal range.
Don't quit, don't quit, don't quit.
Now my son can have minimal corn without any tics. The diet takes time. That is all I can say. We monitor and limit the corn to 'special' occasions and he seems fine.
We do NOT do any corn byproducts, syrups, or any artificial colors at all.
I want to add that corn syrups, in particular HFCS, has mercury in it. Might be a factor with all these kids having neuro flare ups when they eat it regardless of corn allergy.
Caryn
