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Hi there, just thought I'd post an experience for anyone searching. My daughter was on the usual path of motor/vocal tics for a few years starting at around age 5/6 till we really explored diet/environmental triggers and completely eliminated tics right around the age 10 mark, and she has been completely tic free for about 14 months. That includes many times of high anxiety, sickness, pressure, etc that can come with being a 10 yr old. In the past 6 months, we have tried challenge tests on a few foods. Eggs went well, and boy that made life easier. Dairy on the other hand was different. We tried challenging her with Fairlife for 2 days (lactose free milk, but it's still cow milk), and sure enough, mild tics showed right up and lasted approximately 12 days, then back to nothing. I only mention this because if you imagine a child who's system is being offended by multiple things, for a longer period of time, you can see how difficult it can be to isolate what is or isn't the offender.

Update : 11/19/2024 Hi Everyone, We started working with Dr.Piper Gibson on my daughter tics issue. She had her bloodwork/genetics tests done and looks like my kid has heavy amount of mycotoxins in her body, which probably came from mold in the house and mold from grains. My kid is also sensitive to many foods and she is intolerant to dairy/gluten/sugar Dr Piper suggested a 6 months protocol for us during which we have to go for a dairy free/grain free/gluten free diet She suggested supplements to flush out the toxins from her body and fix the leaky gut. The journey just started, will keep updating on how it is going, thanks for all your support

Hi Tiara, Have just read your posts on your son's situation and I can clearly understand what you're going through. There is definitely something going under the hood for your son and once you find the root cause, this will all go away. Pediatricians/Neurologists are HOPELESS and I would suggest you read Sheila Demare's books on Tics/Tourettes as the starting point, that would give you all the strength you need to get started. Diet is the biggest trigger for my kid and there is a lot of improvement once we got rid of dairy/gluten/sugar.Food intolerance and allergies can cause triggers too. Functional Medicine/Environmental Medicine are the one's you can start talking to who can diagnose your son and let you know the root cause. Stay strong and you WILL see light at the end of the tunnel

@tiaratoledo you have some very helpful info being shared with you! My own son had a similar journey to yours-starting some tics around 4yo I can't post much now due to some work constraints, but just wanted to encourage you that you have much reason to be hopeful! My son is now in his mid 30s and living a full life. When I think back to the desperation I felt back when all this started, I can only be thankful that the natural pathway to helping him was fruitful! Here's just one of many threads here where good reports are shared

I remember being that mom who went through all the hard stuff of having to say "no!" to all the so called treats that are actually tic triggers for a child who is susceptible. But oh my! it was so worth it to not have my son go through waxing tics that can often last quite a while, for one night of worthless junk food. There are healthy alternatives that can replace what might not be good for them. Take it from someone who learned this the hard way many years ago.

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms. Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies." I mention that just to expand your thinking about allergy. I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics. I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. A Checklist for Brainstorming Triggers.pdf

Hi Chemar, Understood. We have already started maintaining a journal. Thanks for the info as well. Glad I found this forum, appreciate all the help am getting here.

Yes, get the RealTime mycotoxin test for mold. Also try giving liposomal glutathione prior to the test. My daughter had all zeros on her first test because she could not detox the mold at all. After the glutathione the numbers went way up! Make sure to check for Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure she can fight whatever she has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

Hey we have been asked to avoid fermented foods , spinach ( we were consuming a lot ) and avoid tomatoes !!Also we are given Quercitin ( natural antihistamine) and DAO enzymes to digest if ate high histamines ! Histamine intolerance is another symptom of mold toxicity has nothing to do with environmental allergies ! But yes when your histamine bucket is full due to food + environmental triggers in spring season you get reaction/symptoms !!

This is exactly what we are dealing with starting March ( spring season ). But ours is more of allergies symptoms accompanied my mild tics! We are also falling sick again and again since March ! Also last year her tics got noticeable around the same time ! According to our doc this could be mast cell activation due to histamine intolerance ! Root cause - Mold toxicity ! Do you have any allergy symptoms ? Or just tics ? We were asked to eliminate few high histamine food and introduce Quercitin and DAO enzymes !

Hi badguyus1776. Welcome to the forums, and I'm sorry you are concerned that you have signs of ADHD. I don't know if there is a tendency for people with a history of TS to develop ADHD, per se. A lack of focus and interest in certain activities, like the painting you mention, could occur for a number of reasons. As we age, nutritional needs can increase or change. You might want to consult a practitioner who could order some lab work, if that's an option. You might have an imbalance with amino acids or other nutrients that often affect attention. Would you be interested in doing that? A mild depressive state could result in the symptoms you describe. Depression might be addressed through the biomedical approach just mentioned. Does that make sense? Do you already take brain-related supplements? Something else that can change with age is food reactions. Think about whether you feel the same every day or if there are times you feel more energized and engaged. You could keep a log of the foods you eat and consider whether you feel different on various days based on what your diet is like. Cutting back on sugars is often recommended for ADHD. (I don't know what your diet is like presently.) In addition to that, food intolerance can develop that causes brain fog. As an example, some people can no longer handle alcohol the same way they used to--or they start to react to gluten or certain foods with headache or foggy head or stomach issues even though those items never bothered them before. Since you mentioned indoor painting, I'll pass on a suggestion--and that is to go with non-VOC paint once you get inspired. It is available from major paint companies and is much healthier than standard paint. Some people find tics increase significantly with exposure to the chemicals off-gassing in standard (smelly) paint. Link to Sherwin Williams eco-friendly paint with explanation I hope that helps? The good news is that ADHD-type symptoms can often be improved.

Thanks for sharing your experience @fgter, this is truly valuable! My 6 years old daughter is going through tourette and I will start the consultation with Dr Gibson tomr, It’s a incredible challenging journey, but here’s to cheering for myself and all the incredible moms out there fighting for their kids dealing with tics!

Not to get too graphic, but it was loose stools a few times a week over a period of a few years. Pediatrician's repeated response was "It's no big deal, we're just glad it's not constipation". I want to say that the loose stools came before the tics started around the kindergarten age (started with eye blinking). The symptoms were our first clue, then we had an IG panel run which showed elevated response to a few things, including dairy (i wouldnt put too much stock in an IG panel however). Ultimately, we did an elimination diet under the direction of a naturopath and dietitian (my wife), and the stools gradually got better over a period of months, so that was really our confirmation. Supposedly celiac's also have a long heal time so I think in general if the gut is angry it takes awhile. She does NOT tolerate lactose free cheese and milk and that was a good challenge test after the elimination diet. I think that means something but haven't researched it too much. I made a thread about this the other month where she's been tic free for awhile now and we tried lactose free milk and it triggered loose stools and tics. She regularly has dairy free cheese, butter, and milk without issue. Cheeses usually by Violife or Daiya. Butter is by Melt Organic or Earth Balance. Milk is usually original almond milk.

İlginiz I want you to know how important this article of yours is to me. I am grateful

5 Key Advancements in Tourette’s Syndrome Research This is an interesting summary article from Princeton Medical Institute. I find it encouraging that there is more exploration beyond pharmaceuticals, and always remain hopeful for more advances that explore understanding the causes to better facilitate treatment and perhaps cures. We also need so much more research on the many other ways that clearly help (as discussed here at ACN Latitudes) https://princetonmedicalinstitute.com/2024/05/15/5-key-advancements-in-tourettes-syndrome-research/

Hi 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 ----------------------------------------------------------------------------------------------------------------

Hi Tiara, Those little bodies need time to recover from whatever they are struggling. Healing is not linear and it 2 steps forward and 1 step back. Sometimes more steps back (imho). This is going to be a long haul process for many, but I do hope that you see quick results. But unfortunately there are way too many causes which might be causing our children to flare up. For us it's infections - if he gets a slight cold/cough/swollen adenoids/swollen tonsills then his Tics increase. Even after doing everything what you are doing, we are also seeing setbacks and very rarely 100% free from tics. It's hard but just keep at it, I am sure you will figure out more things and become better at helping him. May be get his blood work done and work with a functional medicine doctor. Read this book "A light in the dark - Jill Crista" on Pans/Pandas. Whether he really is P/P or not, you can help him with the recommendations in that book. Take care, Swetha

@tiaratoledo I have stopped buying any packaged food with more than 3-4 ingredients in it. Also, has to be easy to understand and easy to read ingredients in it. We are also vegetarians, seems like vegetarians have problems with getting enough vit B12. May be you can try adding that. I have also read many studies about 'Keto diets help kids with tics'. I am still finding it very hard to bring meat into his diet due to my own (moral) reasons. I have started adding eggs, initially he had issues with eggs as well, but slowly he is able to take it. In my opinion, any artificial colours are bad. I was giving my son certain fish oil capsules which were made of gelatin and has some yellow in it, which increased his vocal tics. As we removed it, the vocal tics kind of calmed down. Colours are the worst enemies for our children. You got to get rid of any/all products with colours in it - handwash, soap, dishwashing tabs, clothes washing liquid, perfumes, air fresheners at home/car and last bit not the least food colours! You got to become a detective now! 🙃 Good luck with that! Swetha

It sounds like you're already in a good mindset; it is a rabbit hole mind you . My wife is a dietician and we were organic as well back when my daughter started ticcing. You may be surprised by how many foods labeled organic contain MSG or glutamates (like yeast extract or "natural flavors"). Our naturopath did really help us figure out what to eliminate. Any correlation to red tide?

You can remove one thing at a time and see if it has any affect, but unfortunately it often takes on the order of weeks to months for the system to calm down from any one offender, and sometimes there are multiple offenders so you could still be doing good, but just not enough. What we did is more of a shotgun approach, eliminated a lot, and then reintroduced things. It helped to worth with a naturopath who knew a lot about options. Yes, this can be more traumatic, but the tics were bad enough for us that it was worth it. We are to the point with my 11 yr old who is now normally tic free, and that we can give her dairy or anything with MSG (and all of the various sneaky names with glutamate) for one day, and she will flare for about a week or two. We have an artesian RO system from the Perfect Water and really like it. We are completely scent free, no dryer sheets, no perfumes, no incense, no bleach, and certainly no febreeze.

@Chemar your posts are always helpful and makes parents like me feel hopeful even in hopeless situations. 🙏 Have learnt so much just through this forum and your posts.

We received the same response from the neurologist and felt abandoned as well at the onset of all of this. Fast forward 3 years and we completely turned things around without medication. There is hope.

Hi Atex, I’m facing a similar situation with my almost 5yo son. We are also at the beginning of the journey, trying to understand more about this condition, triggers and natural treatments. We had a neurologist appointment today and it was disappointing to say the least. He basically said there is nothing to do unless I want to put him on meds. This forum has been very important for me as well. I hope the 6 months protocol can help your daughter and that soon your new update will be that she is totally tic free 🙌🏻 Tiara

Will do. Results will be in this week.

Hello, My son is currently 12 years old and has had tics since he was 7. (my second son has nothing) At age 9, he was diagnosed with Tourette Syndrome by a renowned university. He does not exhibit any comorbidities such as obsessive-compulsive disorders or ADHD. According to our professor at the university, this would further enhance the positive prognosis, and we really want to believe that. The initial period was the hardest time of my life. The feelings of helplessness, sympathy, and despair were overwhelming, leaving my wife and me in shock. We were like in a trance. I know every study and publication on Tourette Syndrome and have devoured everything to help my son in any way I can. Since then, I have been keeping a sort of diary to record the developments. I only recently discovered this forum and have read everything. I understand you all very well and want to encourage both you and myself.I plan to share my diary, which I had previously kept private, on this forum at a later time. This condition is like a mystery box, making it difficult to predict outcomes, as ultimately, each case is unique. I often oscillate between hope and thoughts of naivety. Our son has a range of vocal and motor tics, which vary greatly in their fluctuations. There are few months where he has almost no tics, and then suddenly they start up again. Our most distressing tics are screaming (squeaking) and head jerking. It is a very loud and sharp squeaking. The squeaking draws attention from those around him, which triggers him even more. Sometimes I'm afraid that his vocal cords might get damaged. The head jerking causes headaches and discomfort, and there is nothing we can do about it. We never let our concern for him show. We give him a lot of love and support him in every way we can. He is very well integrated into sports clubs, has many friends, and performs well at school. He doesn’t like learning at all, and homework is a daily struggle, especially during a severe tic phase. The entire school and all the teachers are informed. The parents of his friends and the clubs he is involved in are aware of his condition. What makes it so challenging to grasp this condition is that online, you mostly see children with more severe cases, such as coprolalia or complex tics involving multiple movements. Our son does have tics, but generally, he does not have complex tics with his arms. For example, he makes grimaces and squeaks, or jerks his head and sniffs. When the tics are very severe, he might do them about 40 times a minute. Currently, he squeaks about 10 times a minute. What I always find missing are experiences regarding fluctuations. Some studies mention a peak in the condition around age 12, others from ages 12-16 or 10-20. I never know if we are currently at a peak and it will get worse or if it will stay the same. I sincerely hope for a calm period soon when the tics decrease. During these phases, like now, I feel completely beside myself. Due to the noise, I hear him constantly and feel a great deal of empathy and worry about the future. While motor tics are less noticeable, vocal tics inevitably make one feel sad. Of course, we ignore it. We encourage him by saying that it will eventually be over or greatly reduced. However, we don’t talk about it much, as our university professor advised that we shouldn’t focus too much on the condition. We also don’t attend support groups because we don’t want him to pick up tics from others. One of my greatest fears is that as he gets older, he will search online for Tourette Syndrome and come across videos of children with more complex tics, and then adapt those tics himself. When he was first diagnosed, he had a brief period of coprolalia, but it has not reappeared in recent years. We focus on a balanced diet and do not detect any allergies, at least not related to the respiratory system. He has no allergy symptoms. So far, our university and the Tourette's specialist society have not informed us about possible allergies, food intolerances, or other factors related to Tourette's. However, we are still open to having allergy tests or food intolerance tests conducted if necessary. On the recommendation of his psychologist and the university, our son is currently taking Tiapride, which he tolerates very well, except for occasional drowsiness. My diary shows that when we increased the dosage, there was a temporary improvement. Based on experiences from others that it is normal for calm periods to follow severe phases, I am uncertain whether we should discontinue the medication. Perhaps it has never been effective, and the improvement was due to normal fluctuations. Once a calm period returns, we will likely try tapering off the medication. For now, I am concerned that this phase may last longer or worsen. Recently, we have also started giving him magnesium, vitamin B6, and omega-3. We would be happy to stay in touch with other parents here and provide updates from time to time. This will help others after us to better understand this condition. If you have any questions, feel free to ask me everything. Kind regards

@Swetha Magnesium glycinate (we use Metabolic Maintenance) is also very good for tics. Take before bed to help with sleep. Regarding B12, a blood test only shows circulating B12, not intracellular - which is what matters. Our doctor says excess B12 is "peed out." My daughter called B12 her magic pill! I would not back down on that!! @Sandy50 Frequent urination was an early sign for our daughter. A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org

It's all so overwhelming, but I'll try to keep it as brief as possible. I know the road to healing looks different for everyone, but I value the community here and I'm just looking for some feedback/support. Background: My daughter is 13 and has had motor and vocal tics since she was four; they change in nature and wax and wane, although lately, they're at the worst they have ever been. At age 4 she was given antibiotics for candida albicans overgrowth...the pills given to her had to be crushed up and mixed with food which she hated. We struggled and had a lot of really terrible moments where I felt I was forcing her to take the medication and she just couldn't make herself do it because of the taste. I have a lot of guilt over this and I didn't know half of what I know now about gut health. I don't know if she ever fully recovered from the yeast, although her external symptoms cleared up. Around age 9 she developed some very specific OCD behaviors that were focused on intrusive thoughts and rumination. In 2020 she began to struggle with compulsive hand-washing and constantly feeling like her hands weren't ever clean enough. (Thanks COVID). Since reaching puberty, her anxiety has gotten a lot worse, especially social anxiety. She has been officially diagnosed with general anxiety, OCD, TS, and ASD. Present: She sees a therapist once per week and we have both noticed an improvement in her anxiety because of this. We now see a neurologist who has diagnosed her with PANDAS and she is starting cefdinir tomorrow. She's taking omega, iron, and vitamin D supplements based on results of lab work. She also takes milk thistle, NAC, and inositol. Lab work also indicated inflammation. I had her tested for food intolerances and she showed high IgG reactions to gluten, eggs, and dairy so we are starting a strict elimination diet today. We already use hypoallergenic and chemical-free cleaners (thank you Force of Nature). Future: I'm going to have her start taking digestive enzymes and L-glutamine for gut repair. I'm having her gut microbiome tested with a stool analysis company called Flore; they will also create custom probiotics for her based on the results. I'm going to test our home for mold, we have only lived here one year but there appears to have been water damage at some point (I'm scared of the results because we cannot aford to move right now). We will be going back to our chiropractor once per month like we used to (she uses the Torque Release Technique). I'm starting her on curcumin for inflammation, as well as the antioxidant resveratrol. Other random thoughts: She has had chronically chapped/dry/peeling lips since she was very young. Could this be related to candida? How to heal if the gut microbiome results point to SIBO?

FWIW, my daughter's tics were very much affected by immune system activity. Hers would ramp up in the days leading to a sickness, and then would completely go away once the sickness symptoms came out.

If anyone is following the recent end of 2023 news about lead contamination in cinnamon that was discovered in kids fruit pouches, it led me down a rabbit hole of looking into heavy metal contamination of spices. Who knew that certain producers add lead to spices to increase their weight. That said, I found an interesting article about a family who dealt with lead contamination from paint in which the kids were diagnosed with Tourette's Mom with lead-poisoned children says Flint crisis 'hits close to home' - mlive.com This begs the question why wouldn't a neurologist run blood tests for this out of normal practice? Our neurologist didn't even consider blood testing for heavy metals.

Hello! I wanted to share some things that I think may be helpful to understanding a part of the puzzle, for some, with Tourettes and also OCD. Many years ago I was an active member on this forum. My son, Daniel, has Tourettes and I have OCD. The very good news is my son is now 19 years old and honestly you would never know he has Tourettes. He is doing amazing. Once in a while I see a little eye tic but that is it (but barely only when he gets nervous. What a difference from when he was 7 to 10 years old). But I want to share with you some insight that may help some of you that I have learned. I know there is so much information out there and our bodies are so complicated that it is not a one size fits all issue. I have found out that there is something in our family that is definitely an issue that was influencing my son's tics and also my OCD. It is histamine intolerance. Meaning that in my family our bodies are getting too much histamine in our bodies and it is affecting our neurotransmitters ultimately in my son's tics and for me obsessive thoughts. There are many, many articles out there about histamine intolerance and what to do but this is a tiny synopses. Histamine occurs naturally in many foods. Also, some people just do not have the right enzyme base to break it down or their bodies are just poor at processing it and what happens is your get this build up of histamine that ultimately changes the way your neurotransmitters are working. Histamine actually has multiple functions in the body not just affecting the neurotransmitters. Just do a Google search on "Histamine Intolerance or Mass Cell Activation Disorder" and you will get lots of info. When I was doing my research many years back for Daniel I kept coming back to histamine being a problem and how it affects the neurotransmitters (especially how it affect dopamine which drives the tics). So I have known about this histamine issue for some time but now it has become even clearer for me. When Daniel was younger I would give him supplements him B6, magnesium taurate, glycine (which helps with the neurotransmitters), zinc (do not take on empty stomach), vitamin c. These things all really helped him but I really did not understand why back then. So to take this a step further about 3 years ago my OCD was getting bad enough I spent the money and went to the Mensah Medical (I live in Arizona but they come here periodically but they also do phone consultations. They are based in Illinois) and it was verified that I indeed have this histamine intolerance along with a copper overload. I have been on a compound the Mensah Medical had formulated for me to lower this histamine response and deal with the copper overload and I feel soooo much better I cannot tell you. It really made a difference. The Mensah, unfortunately is pretty expensive, but I learned a lot and I learned that these obsessive thoughts (that I would take to personally that it was a reflection of who I was as a person) is something I could now separate myself from and realize this is part of a situation where my body is processing things biologically incorrectly due to this histamine issue/copper issue and it was not a reflection of who I was as a person ( OCD obsessive thoughts always goes after what you value most in life which is the most frustrating part of OCD). I was at the point back, when I decided to go to the Mensah medical, where I was obsessing about obsessing if that makes sense. I am Christian and I had prayed for an answer for my OCD and through a series of events I got my answer and it was the Mensah medical. So fast forward to now and my daughter who is 15 has been getting depressed, has bad migraines, and complaining that her stomach hurts all the time. It dawned on me the other day about this histamine issue and I thought I wonder if this could be going on in her but in a different way (when I started researching all her symptoms are symptoms of histamine intolerance). So the last few days I started giving her supplements to control the histamine more in her body B6, Magnesium Taurate, Quercetin, B2, Zinc, and NAC and also stopped giving her foods that are high in histamine and guess what her stomach is feeling better, her mood has changed, and her headaches are better! That is just after a few days. My other son, Zach, he is 18 and he has pretty bad digestive issues and I think this is what is going on with him too. That is the interesting thing with this histamine intolerance is it can affect people in different ways. So to tie this together even more, this past year 4 of our family members, one being Daniel, decided to do " 23 and me" genetic testing. Well if you purchase the 23 and me kit that shows your health traits you can see a lot of genetic things that could influence your health. When you pull up the "23 and me results" they show you all kinds of DNA health traits. But there are some DNA things they do not show and I found a website called Genetic Lifehacks. The lady who started this Genetic Lifehacks has an article that is called "Histamine Intolerance and genetics check your 23andme raw data". What I did is I opened up Daniel's 23 and me results (again you had to have the health traits ordered not just the ancestry results to do this") and also had this webpage up at the same time (I toggled between the two). The lady who created this has a list of links you can click on, in this article related to how histamine can be genetically influencing you, and you can click back and forth and see what your genetics can tell you about how you process histamine in your body (again if you look at just the standard 23 and me results you will not find this. You have to go to this extra step to find this. To no surprise I found out that Daniel's body has issues with processing histamine. I looked at my mom's and my husbands results and I found the exact same thing. What it is looks like is my children inherited from both sides of our family genes that make histamine a big issue for our family. So they got hit from both sides of our family genetically with histamine issues! My husband has had tinnitus the past few years and I had come across an article a while back about how histamine can be a huge influence on tinnitus (ringing in the ear or other sounds). My husbands tinnitus came out of now where and it is both ears. For some people they get tinnitus because of loud sound exposure but this was not my husbands case and so we had a mystery on our hands as to why. Well what I found out is that antihistamines (like Claritin or Zyrtec) they do not stop the histamine from being made they just block it. As a matter of fact what I read is the longer you are on those kind of antihistamines the more histamine your body makes it is just being blocked but it can cause tinnitus in some people. My husband has been on antihistamines since his 20s (he is now 53). So we took him off those over the counter drugs and he started taking vitamin c, quercetin (which is like a natural antihistamine) , zinc, nac and guess what his tinnitus has gone down significantly. It is not completely gone (I think it is because he still eats a high histamine diet and also there are foods/beverages that block the enzymes that break down histamines (like coffee and he drinks a lot of it). The other thing I want to mention and I cannot stress this enough is research hidden names of MSG! My son and i both REALLY react with our nervous systems to MSG and it is not just Chinese food. It is in so many products. Daniels tics would be way worse even with a little amount of MSG. MSG is a frustrating thing because it has to do with the molecules being excitatory. It is hidden under different names because what these food manufactures do is they take a food, like yeast or soy, and they cook it for a long period of time to enhance the flavor. In the midst of that long cooking process the molecules change to an exictatory state. . So when you see a product like "autolyzed yeast" or "hydrolyzed soy protein" they have an excitatory property in it for someone who has nervous system conditions. Wihen Daniel's tics were really bad (about 10 years ago) I did a ton of research on "hidden names of MSG" and we started avoiding those food (this also includes artificial sweeteners). I also found that foods with high fructose syrup and food dyes (especially red) affected him and me too. One time I ate a lot of Red Vines and my anxiety levels were off the charts. So I know I put a lot of information out there. There are doctors who specialize in histamine disorders (some call it Mass Cell Activation Disorder) (like the Mensah Medical I went to). The 23 and me health traits with doing the link between that other website I told you about might give you a lot of clues too but just do some research on histamine. I came across an scientific article last night when I typed in histamine and tourettes and it came up with this very complicated article about how histamine can be the driving force behind Tourettes. Again this many be an answer for everyone by any means but it is definitely something worth looking into. I really hope this can help someone out there in their quest to find answers. What is so interesting to me is the other day I prayed and asked God to show me what was going on with my daughter (her migraines have been so bad) and this histamine issue is what came back up after I prayed. That is when I started doing my research for her and it brought this thing full circle again). God is so amazing to me!

I just saw this article which might be of interest to others here. Five latest advancements in Tourette’s Syndrome research

I also wanted to also add some good news to this thread. I joined this forum in 2013 back when my son was 5. He is 16 now with no remaining symptoms or flares ups and has been this way for about 5 years. What worked for us was getting a proper diagnosis early (within 2 days of first episode) and fighting like heck to get a doctor to prescribe long term antibiotics. At first he was just given the standard course of antibiotics to fight the strep or ear infections he had. Symptoms would improve, but then come right back. After about 6 months of constant flare ups we ended up getting him on daily antibiotics for 2 years. To do this it took traveling out of state to a Pandas friendly doctor. After that, he went down to just a preventative does of antibiotics a couple times a week for a year or so. After that, we went down to just antibiotics in the winter months, then down to just when he had any illness or symptoms or a dental visit. Now he’s been completely off antibiotics and flare free for about 5 years. Puberty really seemed to shut things down for him Pandas wise. I strongly believe we would’ve had a different outcome if we didn’t catch it early and get him protected with long term antibiotics. His original symptoms were awful OCD and tics. He had to do weird things like tap his leg with his fist 3 times after doing anything like throwing a ball or spelling a word. His tics ranged from mild blinking to full upper body contortions. It was hard to watch and heartbreaking at times and we truly wondered if he’d ever return to normal. The reason I came here today (first log on in 5 years) was because my son opened up to us on vacation about his Pandas for the first time. It was hard to get him to talk about it when he was young. Last weekend he explained the OCD urges he used to have. Some he hid, like when he played basketball he had to dribble down the court an exact number of times during drills…. Other things he couldn’t hide, but the OCD was worse for him than even we could even notice. Anyway, every case is very different and I know how it feels to be in the midst of it all. Just wanted to give everyone here some hope that there is light at the end of the tunnel and the outcome can be a successful and well adjusted child. My son has a 3.8 GPA in High School and has several offers to play college baseball. He is a 3 sport athlete, class Vice President, and has a great friend group. Everything you could hope for a child. All I wanted 10 years ago was to be able to write the post I am writing right now. Wishing you all strength in your battles and the best of outcomes for your children!

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.

I hope this helps someone out there. After many years of horrible (yes, horrible) tics, sensory issues, and emotional instability my daughter is basically tic free, happy, and calm. We tried so many things that we read here and elsewhere. From supplements, fragrances, different diets including gluten and casein free, throwing out furniture and decor, we left nothing unturned. What have we found was the culprit? Plant based foods. She grew up with a diet primarily comprised of organic fruits, veggies, and meat. Had white sugar the first time about 1.5 years ago. We cleaned with vinegar. She drank nothing but water. Her diet was "perfect" yet our lives became so stressful. Now she is perfectly normal as long as we severely limit the fruits and veggies. Raw milk is a miracle drink. If she's emotional or having slight tics due to too much plant food then milk saves the day. If we go somewhere with essential oils being diffused then we will pay the price for the rest of the day. I know this sounds crazy, but if you are stressed and tried everything you know to try it can't hurt to cut out plant foods for a couple days...meat, bread, peanut butter, raw milk work for us. Obviously you still need to include some plant food for nutrition long term. Blessings, Nate

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.

Has anyone’s PANDAS kid contracted COVID 19? If so, please describe symptoms and what happened afterwards in as much detail as possible. I’m sure I’m not the only one worried about what will happen to my PANDAS son should he get Covid.

This is very interesting to me. I can't wait to try Ivermectin. I've watched a video of Dr. MoBeen explaining how the immune system macrophages respond and he was explaining cytokine storm. His description sounded so familiar with regard to "inflammation" that I can't help but wonder if this is what is happening in our pans/pandas kids. When my kido's pandas symptoms get exasperated, her inflammation markers are elevated. More often than not, we test her for an infection and she ends up being positive for bacteria and then she get a treatment and her symptoms subside. In another video, Dr. Pierre Kory talks about Long hauler effects of having covid and how the treatment of Ivermectin in Covid patients with underlying symptoms of Babesiosis/Lyme symptoms clear up. I asked our pandas doc about using ivermectin but she chicken to prescribe it because she says the pharmacy with question it. I'm thinking of using an on-line doctor to get a prescription of ivermectin as a prophylactic being it's no more of a risk than taking ibuprofen.

Has no one responded to this message? Looking for any PANDAS parents with COVID experiences. Research, studies, feedback appears to be non-existent at this time.

My daughter has CIRS and yes, that can cause tics. In her case, the mold exposure was/is in the schools. We found three things helpful - improving the environment, treating a fungal infection in her sinuses (frequently accompanies an infection called MARCoNs) and helping the body detox. I could write a novel on all of this, so I'll only focus on the environment since that's what you asked about. We did some basic cleaning up of our home (replaced carpets with hardwood, tossed lots of things from the basement, run a dehumidifier, got rid of house plants) but our ERMI test showed that the house wasn't the problem. And there wasn't much we could do about the schools. So we fought a long battle and eventually got the district to put IQ Air GC Multigas air filters in each of my daughter's classrooms. Her attendance went from a few hours a week to full time. So definitely consider this kind of filter - it's portable and most sellers give you a 60 day return policy if you find it doesn't help. For your house, if the problem is with the AC, then it's likely that mold spores have been spread throughout the house. So it's not crazy that the 2nd company is suggesting such an intense approach. But...I'm wasn't born wealthy, so I can understand wanting a more realistic approach. The AC system obviously has to be fixed in a way that the problem doesn't come back. And I would definitely ditch carpets (even if it means having bare subfloors for a time) - make sure the carpets get rolled up into heavy mil plastic and removed out of the house through the closest windows, not carried through the rest of the house. Remediate what makes sense in the bedroom, and clean everything you can on your own in the rest of the house (window treatments, all clothes, wipe down everything you can with Benefect or EC3 cleaning supplies). Get the IQ Air filter for your daughter's room and maybe the family room. Consider mattress encasements and replace pillows. Make sure your washer doesn't have mold. Do the easy/cheap/obvious stuff yourself. Then between this level of remediation and detox, see how she feels. If the tics start to subside and she starts to feel better, you can chip away at the problem until she gets healthy. If she doesn't recover fully, then keep looking for a mold source and consider more extreme measures. You can find helpful information here http://moldcontrolonabudget.com/ The site is run by May Dooley and she's super helpful. You may ultimately need to go full out, but nothing says you need to do it as a first step. Hope this helps.

Dr K is eccentric to say the least, but he is absolutely brilliant, has been treating children with PANDAS since 1998, and watching him interact with his patients is nothing short of amazing. My son was diagnosed with PANDAS in August 2017. The doctors in our surrounding area in WAshington State did not have expertise in the treatment of PANDAS. With our son’s abrupt, scary, and intense onset of symptoms, I wanted to take him to a expert in the field. After sleepless nights reading peer reviewed journal articles and researching pediatricians, I emailed Dr K. and asked if we could skip the consultation and come directly to Oakbrook, IL for an office visit/consultation and IVIG treatment. He was amazing! While his communication style with adults is somewhat abrupt and slightly offensive at times, watching him interact with his patients is really wonderful. My son adored him. Dr. K’s prognosis and timelines were spot on. He was familiar with all of the current research, has a wealth of experience and could answer all of our questions concisely. The IVIG treatments were well organized, the staff members were compassionate and impressive , and the whole process was seamless. The follow up has been adequate: Dr K. only replies if there is something pressing or urgent (you need to write “Urgent” in the subject line,) but we have followed all of his post care instructions and the outcomes have been just as he described they would be. His emails are usually only 1 or 2 liners, but they tell you everything that you need to know. He saved our son and our family.

Hi to all of our members this thread is primarily for posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL) Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion thanks for your help in putting this valuable resource together

Tylenol (acetaminophen) depletes glutathione. Glutathione is the body's most important antioxidant. It has a critical role in protecting cells from oxidative stress and maintaining the immune system. Here is a good article on glutathione: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html High doses of acetaminophen or long term use depletes glutathione, which is made by our liver. This is the primary reason for this widely used over-the-counter drug's well-talked about liver toxicity. When someone overdoses on Tylenol, NAC will be administered to clear out the liver. NAC (N-Acetyl-L-Cysteine) is a precursor to glutathione. In my ignorance many years ago, I often gave Tylenol post-vaccinations to both of my children. Glutathione escorts mercury out of the body. Some vaccinations at the time my children were young contained mercury. By giving them Tylenol, I was unknowingly putting them at risk for mercury toxicity. They both have heavy metal loads to this day. We only use Ibuprofen and completely avoid the use of Tylenol.

We have done gluten and dairy free, also no preservatives or artificial ingredients. It has been 4 months and we have seen 95% improvement in tics.

I have performed about 20 or so ERMI tests for housing. And, that does not include the ERMI testing I have had done at the school. We moved into a house with an ERMI of 3 (the best score we could get out of the 20 or so) and made it less than 1 over the course of the first year living there. It was extremely difficult. I will PM you with the radical steps we had to take to make the new house livable.

Decent Symptom List For LYME/Co-infections. LYME DISEASE AND THE CO-INFECTIONS 07/26/2010 Lyme disease is a major health problem in the United States. Since the infective agent, the bacteria known as Borrelia burgdorferi, is so difficult to locate and diagnose using present-day blood tests, it often goes undiagnosed and untreated or improperly treated. Even with practitioners who consider themselves Lyme-Literate Medical Doctors (LLMDs) or Lyme-Aware Medical Practitioners (LAMPs) diagnosing this infection can be very frustrating for several reasons. There are several great books that address the controversy, the politics, the diagnosis, and the treatment, and I will refer you to them for further information. However, two of the most important reasons that proper diagnosis is so difficult is that Borrelia burgdorferi can change its shape and form as a way of protecting itself. These protective forms rarely, if ever, show up in the blood and hide away in other tissues that would require biopsies to identify them. And, second the blood labs used to identify our immune response to these organisms have not been completely refined and, at best are 70% effective and, at worst, only 30% effective. The majority of healthcare providers, not being Lyme knowledgeable, busy themselves treating the symptoms or possibly even treating the wrong disease. Lyme disease is also known as "The Great Imposter" or "The Great Imitator." It can mimic such conditions as chronic fatigue syndrome, fibromyalgia, autoimmune arthritis, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease), schizophrenia, bipolar disorder, and many different heart and vascular conditions. From the practitioners point of view, it makes it even more difficult to properly diagnose and treat when Lyme disease is very often accompanied by any a number of, just as bad or worse, organisms such as Babesia, Bartonella, Ehrlichia, Cytomegalovirus, Epstein Bar Virus, Herpes Simplex I and II, Human Herpes Virus 6 (HHV 6), Rickettsia, and Mycoplasma. I have listed below some of the symptoms related to chronic disseminated Lyme disease (Borreliosis), Babesiosis, and Bartonellosis. You will notice that there are many symptoms that overlap with these three infections. Please circle (O) the bullet if you are presently experiencing this symptom and place and (X) at the bullet if you've experienced this symptom in the past. Next to the (O) or the (X), please rate the symptom on a scale from 1 - 10. Very rarely or few symptoms would be a 1 while often and/or severe would be a 10. Lyme Disease Arthritis-like joint pain and swelling (often migrating or moving from joint to joint) "Brain fog" with poor concentration, focus, and/or attention Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening Back pain Light sensitivity and/or blurred vision, increased eye floaters Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies) Chronic and/or severe fatigue with minimal stamina Facial paralysis (especially Bell's Palsy) Chronic pain and tender points throughout the muscles of the body Walking and balance problems Headaches Impaired muscle coordination Impaired reflexes Memory loss (especially short-term memory) Muscle weakness Nerve symptoms (numbness, tingling, burning, vibrating, or shooting) Night sweats, clamminess, unexplained fevers, flushing Unexplained weight change (loss or gain) Unexplained hair loss Swollen and/or tender glands Sore throat Testicular / pelvic pain Unexplained menstrual irregularities Unexplained breast pain / milk production Sexual dysfunction and loss of libido Upset stomach with nausea and possibly pain Changes in bowel function (constipation or diarrhea) Muscle twitching of the face or other muscles Increased motion sickness, vertigo, or poor balance Tremors Confusion, difficulty in thinking Difficulty concentrating / reading Disorientation (getting lost, going to the wrong places) Speech difficulties, vocalization problems, problems writing, word block Exaggerated symptoms or worse hangover from alcohol Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including: Behavioral disorders including impulsive acts of aggression and violence Extreme mood swings between depression and mania Chronic depression Dementia Eating disorders Hallucinations Mood swings Panic attacks Extreme fears or phobias Schizophrenia Personality disorders (radical change in someone's personality) Thoughts of suicide Irritability A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including: Shortness of breath with minimal exertion Gasping for air Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia) Chest pains / soreness in the ribs Enlarged heart Palpitations Fainting sensations Non-productive cough History of heart murmur or valve prolapse Two major clues that Lyme is the cause of the above symptoms are: the progressive worsening over time of a multi-system pattern of symptoms, and the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern. Babesiosis Chills Fatigue and often excessive sleepiness Night sweats often drenching and profuse Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc) Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud Depression Episodes of breathlessness, "air hunger" and/or cough Decreased appetite and/or nausea, perhaps vomiting Spleen and/or liver enlargement Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate" Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme) Dark urine Enlarged lymph nodes Significant memory changes Struggle organizing Profound psychiatric illnesses Significant fatigue, daytime sleep urgency despite nighttime sleep Waves of generalized itching Balance problems with dizziness Severe chest wall pains Random stabbing pains Weight loss Sensitivity to light Sleep in excess of 8 ½ hours per night Sore throat with unproductive cough Bartonellosis Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion) Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" Headaches, especially frontal (often confused with sinus) or top of head Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis) Sore throats that are recurring Swollen glands, especially neck and under arms Anxiety, panic, or worry attacks; others perceive as "very anxious" Agitation, irritability, rage, impulsivity, or aggression Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature Poor sleep (especially difficulty falling asleep), poor quality sleep Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory) Muscle pains, especially in the calves; may be twitching and cramping also Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis) Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth Tremors and/or muscle twitching Heart palpitations and strange chest pains Episodes of breathlessness Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins Gut symptoms, especially acid reflux Shin bone pain and tenderness Fainting Bladder pain, irritation, infections Genital disorders Obesity and body swelling The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006) http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/

Just my 2 cents My ds4 tics and ocd got better after 2 week round of steroids. And contrary to what some may think, it didn't get worse even when he later tested positive for Lyme.

EVALUATING A CHILD FOR TICK BORNE DISEASES Please see this thread for a link to an excellent article by a pediatric specialist which discusses how a doctor might make a clinical diagnosis for lyme based on symptoms and lab work: http://www.latitudes.org/forums/index.php?showtopic=10421

HOW TO FIND A LLMD -- a/k/a a lyme literate medical doctor Lyme and other tick borne diseases are usually a clinical diagnosis -- that is, the diagnosis is not reliant on blood tests because the current blood tests are often inconclusive. Therefore, it's extremely important to find a doctor who is very skilled and experienced in treating tbd's (tick borne diseases). These initial exams are very thorough, often 2-4 hours in lenghth. They include a full review of patient history, lab work, and an extremely extenisve physical exam. These doctors are often called LLMD's (lyme literate medical doctors). They follow the treatment protocol as outlined by ILADS -- International Lyme and Associated Diseases Society. ***These doctors are VERY SKILLED at treating the multi-infectious patient. Rarely is a patient dealing with simply one infection. Often, there are multiple infections transmitted by ticks. But also, once the immune system is compromised by the initial infection, the patient often becomes susceptible to additional viral and bacterial infections. These doctors know how to peel back the layers of the onion in giving complete treatment. They know the best combination of abx to treat these infections, along with non-abx treatment to add to the mix (supps, naturopathic, etc). Resources for finding a doctor: 1. Contact ILADS.org and ask for listing of doctors in your area. http://ilads.org/ 2. Go to www.lymnet.org Flash Discussions / Seeking a Doctor Post a message titled such as "need llmd in Texas". You will receive personal message with names of doctors. This can be very helpful, as they will sometimes give you more detailed information, or have personal insights to offer about the docs. http://flash.lymenet.../ultimatebb.php 3. Contact the lyme support organization for your state / county / town. They can help you find doctors in your area. http://www.lymenet.org/SupportGroups/

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 !

Updated 2020 Suggestions for finding a practitioner People frequently ask how to find a practitioner who can treat tic disorders along with, or without, standard drugs. It’s a difficult question to answer because there are important factors: 1) The severity and nature of the condition 2) The age of the patient 3) The location and willingness to travel 4) Insurance and financial resources Also, because alternative research for tic disorders is lacking, most professionals in alternative or integrative health fields have not treated a lot of tic cases. Sometimes people successfully help themselves or their child through self-education and basic wellness approaches. Others may decide to seek out a chiropractor, naturopath, or homeopath. Biofeedback is sometimes tried. You can search the Internet for a number of referral associations for these practitioners and receive explanations of their disciplines and services. Their backgrounds and training can vary greatly. ACN has received the most positive feedback on the use of nutritional therapy, diet, and specialized allergy therapy for treating tic disorders including Tourette syndrome. Avoidance of aggravating agents is key, whether in the diet or the environment. These types of practitioners can be of help to varying degrees depending on the issues involved. World Naturopathic Federation; The American Academy of Environmental Medicine American College for the Advancement in Medicine Functional Medicine We regret that ACN is not in a position to offer personal referrals for families. There are no hard and fast rules when looking for help. It is a matter of finding the right match for your situation. Word of mouth may be helpful. The search is often not easy, but it can be well worth the effort in many cases. I sincerely hope every Forum reader finds the help they are looking for. Sheila Rogers