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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

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 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!

Just another few data point for you all, my 8yr old experienced a sudden flare in her TS tics within about 8 hours of the pfizer covid vaccine #1 in November 2021 which lasted a few weeks. For me, when I got my Covid booster in November 2021, an old lumbar spine L4 nerve compression issue that I had (and had not acted up in the previous 8 months) flared within about the same timeframe (8hours) of receiving the booster. Not saying not to get the vaccines, but there is definitely an inflammation thing going on.

Ugh. Big hugs. I'm so sorry, I really feel you. I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc. It feels neverending. PTSD for parents with PANS/PANDAS is SO real. The caregivers need help too. This is a lonely wild ride. If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo

Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.

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, 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

Man, some of the posts here really bring back memories of sleepless nights. What I have learned so far on this journey is that I think there's a heck of a lot more individuals with motor and vocal tics than the medical profession wants to believe. There seems to be a vast number of cases out there that don't elevate to the level of Coprolalia; yet that is what's noticed and publicized. I also feel that the "moderate" cases are poorly understood (poorly funded research) and is probably why the medical profession seems completely blind to any other solutions than medication. Moreover, i dont see a whole lot of doctors with enough depth of knowledge to wholistically put it all together. All i know is that my daughter progressively got worse up until age 8; at which time we became aggressive in diet and environmental control, and now at age 10 she is completely tic free. Like zilch since July 2023 except maybe once when she was sick. Before we did anything she was ticcing upwards of 40 times per minute, had OCD tendencies, and had an aversion to loud noise. I find it really interesting that she can tolerate loud noise now.

Hi KSandy It certainly sounds like you are following a good track! I don't have enough personal knowledge to comment on specifics for you, but I do know my son (dx TS with likely PANS component) showed tremendous improvement with cleaning out Candida albicans! We used capsules by NOW called Candida Support (used to be called Candida Clear) and had good results. As Candida is fungal (also sometimes called "Yeast overgrowth") I know some of the prescribed antifungal liquids have had mixed reviews. My son's OCD always ramped up when his GIT wasn't happy. He still uses plain natural organic kefir as his probiotic, as he did not respond well to those probiotic supplements. He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues. The Integrative doctor started him on NOW Boswellia + Curcumin which he still takes and finds beneficial to both GIT as well as neurological impacts. We know the brain-gut connection all too well, so always advocate for the treatments that aim toward healing both. We found regular medicine just doesn't address that, and frequently prescribed treatments just upset the balance and result in new issues - at least that was our experience. So kudos to you for following a holistic approach. I do hope your daughter will heal well.

@MLee We initially started Magnesium alone, based on Bonnie Grimaldi's research on TS tic reduction with Mag. The effect was very quick for my son with the Mag supplement at 400mg/day along with nightly Epsom Salts baths. It is generally recommended to be sure that there is an intake of Calcium (food or supp) at twice the amount of the Mag dose. My son was 10yo at the time, and his doctor said to use the adult doseage of megnesium. We added the B6 later based on the physician's recommendation, and it definitely helped with many aspects of Tourette Syndrome 400mg is still the suggested adult supplemental magnesium dose as far as I know.

I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat. She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all. Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great. Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school. Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation. Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate. The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess. The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid. At the same time, her psychiatrist put her on a low dose antidepressant. Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds). This was, however, a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted. We still do not know for sure what caused this to happen after so long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono. We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history.

Hi @MLee My son does well now and his tics are so minimal that hardly anyone would notice them. Even when they are triggered now - they are nowhere near what he once had in his preteen years! His tics started to improve as soon as he stopped the pharma rx meds, started specific supplements/nutrients, avoided things that triggered his tics. As he passed the teenage pubertal years, there was a continued improvement in the overall tics. He has a good job, works hard, nice apartment. Well adjusted, and, having dealt with TS since childhood, he is a more compassionate and empathic person toward others. He feels TS gave him a lot of insights he may not have otherwise had. Number one tic trigger still seems to be stress - which is often harder to control in this stressful world - and so he continues to create and play music to relax, plus he has a set up that allows him to unwind with video games that is not triggering for him. He has maintained a healthy organic diet, and avoids any food additives that have always triggered his tics (artificial colors, flavors, chemical fillers, MSG etc etc) He also still avoids other environmental things that he has long known were triggers for his tics (eg chlorine pools, flashing lights, artificial fragrances/perfume etc). He continues to take certain supplements that work well for him. Experience has shown him that these are important to his overall health and well being, as well as to keeping TS symptoms minimal. Hope that answers your question :)

Hi @madimi - there must be something in the air! After a good chunk of time with mild tics, not gone, but really not noticeable, my daughter over the last 2 weeks has seen a big increase in tics and new ones. She has been doing an eye wink/lip stretch for a while but would happen maybe 1-3 times an hour, now it's literally every 2-5 seconds. She's also started to scrunch up her stomach/slight hunching over, incessant scratching all over her body, throat clear/grunt type sound every 5 seconds. I've had two meltdowns privately over this. Frankly every time I see her do this (which is often), it feels like a knife is stabbing my heart. I do hide all my emotions from her, and it still continues not to bother her. In fact, today she went to the park to play, ran into 5 other classmates and they all ended up in our backyard playing and it made me so happy to see. I hold onto the good, and have started my own gratitude journal to write down 1-3 things I'm grateful for every day to get me through this. I've actually started her doing it as well, every night before bed she writes down 1 thing she's grateful for. In addition to all of this, my older daughter (12) who has had vocal tics on and off for years (no motor), developed an eye roll in January. It went away after 3 weeks and two days ago, started up again. She told me today, friends are starting to ask at school what is wrong with her eyes. We've had discussions about her vocal tics, as she also has a very frequent throat clearing tic, so she knows what tics are, but I'm certain she doesn't talk about it with her friends. She has ADHD and I'm also starting to see OCD tendencies in her. Like I said, my heart hurts, I keep trying to see the good, remind myself this increase in activity will hopefully pass soon and continue to be present for my kids. But it's so challenging. I worry about their future and their happiness. You are not alone in this!

Get any help you can. I understand you fully and we've been in the exact situation multiple times. I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us. I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) Back to my first sentence, get any help you can, if you are not well, you can not help.

I wanted to add that I was listening to the Dr. Robert Malone podcast regarding the vaccine. At about 1 hour 39 minutes he talks about the spike proteins crossing the blood brain barrier which can cause inflammation and other problems. It’s interesting since this is what the antibodies do in PANDAS…cross the BBB and cause inflammation. I can’t help but think there is a similarity in the two. I guess in time maybe we will know.

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.

Thank you for sharing your story. 🙏🏻

I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life.

Hello fellow PANS/ PANDAS parents. Some old-time folks may recognize my name. Others are likely unaware of the struggles my family has endured for the last decade. I found this forum in 2010 after a H1N1 hit our family in the fall of 2009 and my son was hit with yet another PANS exacerbation. He was 12 years old at the time and had struggled with chronic sinusitis and Pans for much of his life, though the preceding 5 years had been relatively quiet as a result of a 2007 tonsillectomy. The H1N1 set off a major immune response that led us to Dr. B in CT who found a large muscle in his ethmoid sinus and immune deficiency. After emergency surgery, we started him on HD IVIG, which initially triggered a severe PANS exacerbation. After several months of repeated HD IVIG, he showed signs of bartonella infection and began treatment for that. Around 2015 he seemed to be at a standstill- requiring rifampin and doxy and HD IVIG every 8 weeks. He was able to attend school part time, eventually finish an alternative HS with a local degree, and take some part time classes at a community college with grades in theC-B range. Vocational rehab worked with us, but did not want to invest money in tutoring or books for college as he scored so very low in math they did not think there was ANY college degree he could ever achieve. In 2017 he started seeing a local immunologist who does work with mitochondrial disorder, who did some bloodwork followed by a muscle biopsy, which showed mito dysfunction. He followed this with a genetic blood test which showed a genetic mutation leading to mitochondrial structural problems. He started on a mitochondrial cocktail and was soon able to go to community college full time. His grades went from Bs to As and he was inducted into the honor society. He transferred to a 4- year college last year as a dual major in philosophy and computer information systems. He loves computer coding. He has a 4.0 average. He has friends, work, girlfriend. He is a nice guy. He is still on doxy and the infectious disease doc we work with cannot explain why, but thinks it is gut-related. We are still searching to get him off doxy. He has not had IVIG since January, 2018, and he is fine without it. I am not telling you this to brag. I am telling you this because 5 years ago I thought he would never be able to live independently. I am also not telling you this to say the your child has a mito disorder. I have been on these facebook pages and forums long enough to know that there are only two things our kids have in common: 1. Unexplained psychiatric symptoms linked to illness; 2. Parents that recognize #1. I know you are the fighter, warrior parent. I know you know your child best. I believe you will find what works best for your child. I don’t care if that is psychiatric meds, mito meds, a gluten free diet, or mold remediation. I believe you will find it and once you do you will hang on to it. I wish I could wave a magic wand and just relieve everyone of their worries. I know how desperate I was from 2010- 2018, I know how many times I logged into this forum and hung on every word I read, and I know how much positive stories helped. I hope this helps you in your journey and I wish you all the best.

Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located? Lucy PS. I'm a night owl on PST, in the SF Bay Area. Send a DM.

Hope36, I am so glad you saw our post. We started noticing certain foods would make his tics more noticeable & more out of control. We started removing all processed meats, especially hotdogs & brawts. We found these always made his tics flare up. We also cut out pizza, except for gluten free. We don’t believe he has a gluten allergy. However, most gluten free foods are also more natural with no preservatives & additives, which we believe affect our son. We also never eat Chinese food because of the MSG in it. It makes his tics awful. I buy only breads that state no high fructose corn syrup & it doesn’t seem to bother our son. I buy Healthy Life whole wheat bread at Walmart & also Sara Lee brand has some bread that is labeled no high fructose corn syrup. If we buy sandwich meat, turkey or ham, I buy Oscar Mayer Natural. It will show no artificial ingredients & no nitrates, which are additives to preserve longer. Our son likes peanut butter & Jelly so he eats that at school & we send lightly salted Pringles & organic granola bars. We also send organic annie’s Chocolate chip cookies a few days a week. I have also found that Kraft Mac & cheese does not affect him since they’ve removed the preservatives, etc. The Kraft Mac n cheese bowls are easy too. We mainly stick to all fresh fruits & vegetables & we cook at home primarily so we know what is in his food. I know it’s overwhelming, but over time it won’t be. Mainly stick to fresh fruits & veggies. Also we use Young Living oils because they are more pure. You should be able to find a local contact who may sell them in your area. I hope this helps & we are always here! Hugs

I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use: Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment. She takes Thera-lac probiotic too And Super Lysine Plus for immunity support. To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though And, she is on the low-FODMAP diet Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help. Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him: NAC - an amino acid that has had some documented success helping OCD in larger doses L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies. His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again. As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us. Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!

Hello, This is my first time on here. Chris is my husband & I wanted to give an update on our son. He is now 9 years old & I'm happy to say his tics are now under control, with only occasional motor tics. We are so thankful for sites like this. Otherwise we would have never known to restrict his diet & try essential oils. I have several friends who have reached out after my recent post on social media & they are also seeing positive results with changing diet & applying essential oils. I spend much more time at the grocery store checking labels on anything that is processed foods. I buy mostly fresh fruits, vegetables & all natural meats. We can always tell if our son eats something that is not within his diet. His tics are almost instantly much more visible & it takes a few days to get him back to normal. We are so thankful everyday to have our happy go lucky son back. We know that he may always have tics, but it’s so reassuring to know that it is controllable with something as simple as diet changes & his daily half tablet of Guanfacine. I have said from the beginning I will always make sure he has a normal, happy life, no matter what. It is possible. My son is a reminder everyday.

Jumping in with a different perspective. Was your son vaccinated? Vaccine adjuvants are designed to cross the BBB, specifically aluminium. There was much discussion on this site that Pandas is a version of aluminum toxicity. With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well. It is believed that detoxing from aluminum and mercury helps quiet the immune system. We have tried selenium for mercury, malic acid for aluminum and other stuff as well. She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant. She is currently using Diatomaceous earth for a slow detox for everything. I think it is helping well. I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since. I have 2 totally unvaccinated kids, and several partially vaccinated. It is a CRIME what pharma is doing to our kids without knowing the long term effects. I can honestly say, VACCINES ARE NOT WORTH IT! Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!! Just venting my pain. I wish I would have known about this issue many many years ago.

Our daughter was treated with plasmapheresis in 2017. She has pandas/Pans but not Lyme (we think?). She was typically treated adequately with antibiotics but for whatever reason we couldn’t get that one flare under control with abx or prednisone, so we went looking for ivig. .. The immunologist we found had more success in his patients with plasmapheresis than ivig. Our daughter’s symptoms were severe at this point. It is also often easier to get insurance coverage for plasmapheresis than ivig, which is curious to me. For all these reasons, we went with plasmapheresis, and would do it again in a heartbeat. I cannot express how life-changing it was. (Two years out we may be needing it again, and if we do, I will be nothing but optimistic going into it.) We are in VA so I don’t think I can help as far as who can treat near you. However, don’t take the “it’s impossible to get in CA” and just give up.... start making phone calls. Call area hospitals and ask if they do plasmapheresis at ALL, regardless of reason. Ask which immunologists order it. Work backwards from there. You are at an advantage because of your son’s age, as the issue is often finding an apheresis unit with the capability of treating a peds patient. Your son is not a peds patient so you already don’t have that barrier! I do not have experience with Lyme related to plasmapheresis. Also don’t take the “insurance won’t cover” without checking your plan on your own. You can call and ask if the cpt code is covered (I don’t have it in front of me but could find it) and whether it needs preauth. Don’t give up. Hope I helped or at least gave hope. Good luck.

Donald Raden, MD is an Integrative Psychiatrist in Highwood, IL. His practice is called the Raden Wellness Center. My son (age 13) has been under Dr. Raden’s care for 1 year. He saved my son’s life. He treats many young adults with PANDAS. My son’s case was severe.

I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman: "We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC." NBC is the producer for Chicago Med.

Oh my, I'm so sorry! Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire." She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues. If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital. Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions. You may have reached a crossroads where the abx are insufficient for meeting his illness adequately. Can you get a PANDAS/PANS specialist on board? I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep. I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing. Hang in there. Hopefully, someone else will chime in with more direct experience that may resonate with your situation.

I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: With one of the most profound and difficult to treat cases to ever treat - my daughter is staring community college in the spring! You name the symptom and she has exhibited it - to name a few... complex tics, anorexia, bed wetting, mutism, depression, OCD, sleep disorders, a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia. She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab. We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her. It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT. I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services) in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back. Hang in there....it will get better... Here is the 2015 post. My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition. 1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means: 2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out. 11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside. After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.

Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting. I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks. I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history. As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through. I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus. Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!

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/

Our son is a couple months from 11 now. He started the famous eye blinking at 8 and did the body jerks (arms, legs and some head) a couple months later. They waxed and waned for about 4 months then stopped. He still has some facial tics, mostly some eye blinking, then nose twitching and eye brow furrowing but the jerks never came back. Even now his tics are so minor no one but me seems to notice. He goes for months with nothing, the last week he has had some eye brow furrowing, but he has been playing games on his Game Boy and this seems to be a problem. This has been a long journey for (mostly me) us. Since this started, we have now have him gluten free, clean foods, Kids Calm and Bonnies TS Control vitamins. This program seems to work and he is about %95 tic free. Even when he does get a tic, it is only one and they typically last for a week to 10 days then stop. They will start back if he has anything with wheat or food with either artificial stuff and or chocolate. I have found Natural Remedies Tic Tamer to really settle the tics down a lot when he does get them. I believe he is growing out of the tics, he seems to have the less often and less severe the his original ones. I absolutely hate these tics, and even today with his eye furrowing, made me feel very depressed and mad. I have come to realize this is my problem. He gets upset if he sees me upset about his tics, but I don't think they bother him that much. He would rather play his games and eat candy (sometimes) and knows they will give him tics. I want him to be a kid, so I don't want him to have bad memories of these precious years. I am so glad he is getting a little older so he knows what will give him tics now. A little background: No family history of tics or TS He is very bright, no other commorbid issues. Never had any vocal tics yet They bug me way more then him His tics have made me love him more then I ever thought I was capable of, and I pray that one day he is over them. Until then, I have learned to take one day at a time. I use to have those butterflies in my stomach just waiting for him to get off the school bus hoping they would be hardly noticeable. I travel a lot and still ask my wife every night "how are his tics?" Not sure why I decided to write this, just felt compelled and hoped I could offer some help. I feel like I went through the darkest days of my life since my father passed away 11 years ago and will leave you with this: He will get better and so will you. Lenny

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

Sending hope to new parents out there struggling. There is hope. My son is better now. He’s almost 17.

My DS responded very well to Clarithromycin after showing high Mycoplasma titers. It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day. Be sure to space the probiotic at least 2 hours away from antibiotic. I’ve used Gutpro (expensive) and Jarrow (reasonable). I wouldn’t skimp and use a generic grocery store or drug store brand. Yeast can cause issues itself. I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after. We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance). I’m sure Whole Foods also sells yeast control supplements. I prayer that your daughter finally gets some relief from the abx. Keep us posted.

Note: This has been approved for posting by Forum administration. For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data. I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here: https://osf.io/pf7q2/?view_only=ba9efeabb38e4a22adced3b5ba4dc5a5 That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at. We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.

Hi My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc. I don't have experience with these and PANDAS

Hello again! Mom2three's posting about what foods have hidden MSG in them gave me the thought to compile the list of foods I have found, over the past 1 1/2 plus that my son Daniel can tolerate. These foods do not have any MSG, HIGH fructose corn syrup (they may have regular corn syrup but very few of them), and no artificial dyes (obviously this information is all based on the best of my knowledge. So make sure you read the labels for yourself!). These foods do not take in any consideration of any other allergies. They also do not take into consideration salicylates that some may be sensitive. As always keep an eye on the labels over the years because ingredients do change in foods we buy at the grocery stores. I compiled the list in five sections (Breakfast) (Lunch and Dinner) (Snacks/Desserts) (Beverages) and (Eating Out). I also included on the list the places I purchase my food at so hopefully these stores are near you! At the bottom of the post is information about MSG in general and what to avoid. Also some helpful websites I have found. There are several stores I do the vast majority of my shopping Costco, Sprouts, Trader Joes, and Wal-mart. Lunch/Dinner *Spaghetti Noodles (any regular brand) *Egg Noodles (any regular brand) *Pasta Noodles of any sort (any regular brand) *Chicken (I prefer Sprouts all natural chicken but regular chicken is ok too) *Organic Free Range Chicken Broth (Costco) (DO NOT buy any regular chicken broth. It will have MSG (autolyzed yeast extract. You need to buy organic and still make sure to check the ingredients) *Peanut Butter any brand regular kind *Jelly (I have been using Flavor Swiss Preserves but just look for one without colors or high fructose corn syrup) *Homemade Salsa *Sprouts Lil' Smokies (do not buy any Little smokies or any other sausage that does not say MSG free I guarantee it has MSG in it) *Frigo String Cheese (Costco large pack) (probably any brand string cheese is ok) *Cheddar Cheese (All natural no yellow dyes. Does not say artificial coloring. The kind I buy almost always say annatto used for coloring. Just as a side note Costco has a large block of cheddar cheese that says "All Natural" but when you read the ingredients it says artificial coloring) *Tortilla's *Homemade Pizza (I use Hunts's 100% Natural Tomato Sauce with just a teaspoon or so of white sugar mixed to make sauce) *Hormel 100% Natural Deli Meats *Parker House Style Frozen Rolls (Wal-Mart freezer section) (I love these rolls. They do have other additives but they do not seem to bother Daniel. I use them to make homemade donuts (After raised poke hole in the middle and fry them in canola oil. Cover in white sugar or make a cinnamon/sugar mix yummy!), little individual pizza's, hot pocket type sandwiches with the Hormel Deli Meats and cheese inside, and obviously dinner rolls) *Hamburgers (I like Sprouts Ground Beef. I wait until the beef goes on a great sale like $1.89 or so and we BBQ (be careful not to use BBQ sauce unless you read the labels real well for unfavorable additives). We individually wrap them and freeze them. Then we just bring them out and heat up for a quick hamburger. Also I cook up a bunch of the ground beef and store it individual ziplocks. We freeze it and then we can quickly defrost it for making taco's, spaghetti, or lasagna) *Lasagna Homemade (do not use Parmesan Cheese it is naturally high in MSG) *Roast Beef *Homemade mashed potatoes *Ore-Ida Fast Food French Fries (Walmart) (I am avoiding tator tots because they are "seasoned") *Trader Joes All Beef Hot Dogs *Homemade fried chicken *Homemade biscuits *Trader Joes Pancake Mix to make biscuits *Fresh Fruit *Fresh Vegetables *All Natural Butter (Wal-mart or Costco) *Bread (I buy mine at Sprouts cracked wheat) (Look for one without caramel coloring or high fructose corn syrup) *Olive Oil (Trader Joes has great prices) *Canola Oil (Wal-Mart has cheap off-brand) *White Flour *Wheat Flour *White Sugar *Brown Sugar *Jasmine Rice (Trader Joes and Wal-Mart) Breakfast *Great Value Homestyle Waffles (Wal-Mart freezer section) *Trader Joes Uncured Bacon *Applewood Bacon (Trader Joes) *Trader Joes 100% Pure Maple Syrup (I think Costco also carries a 100% product) *Jelly (I use Flavor Swiss Perserves but just look for one with out high fructose corn syrup and no artficle colors) *Trader Joes Honey O's cereal *Eggs *Kix Cereal *Cascadian Farms Vanilla Almond (Wal-Mart) *Envirokidz Koala Crisp (Whole Foods) *Cream of Wheat Regular (Wal-mart) *New Morning Fruit O's (Sprouts) *Cascadian Farms Oat's and Honey Granola (Walmart) *Homemade French Toast *Cheerios *Honeynut Cheerios *Cream Cheese Regular not flavored *Bagels (make sure they do not have high fructose corn syrup. Trader Joes does not I am pretty sure) *Fresh Fruit *Fresh Vegetables *Brown Sugar (for toppings) *Trader Joes Pancake Mix *Any fresh plain meat. (Make sure it is not "seasoned" from the store and be careful of breading unless you are doing this all yourself) Snacks/Desserts *Homemade Popcorn (we have a "Whirley-Pop" pan and we add our popcorn/canola oil/olive oil and salt after. Makes great popcorn. Our family has become quite famous for this when our friends come over) *Pretzels (Wal-Mart Great Value Brand. They are $1 a bag) *Unflavored potato chips like Lays Original or Ruffles Regular (ALWAYS unflavored chips anything else I can bet $$$ on will have a form of MSG. Also avoid any Doritos lots of MSG) *Oyster Crackers (I buy Trader Joes) *Saltine Crackers *Organic Quack N' Bites (Whole Foods). (Can you believe that good old regular fish crackers have MSG (autolyzed yeast)) *Cashews with salt (Costco) *Peanuts with Salt (Costco) *Almonds *Corn Chips with Flax (Trader Joes) (Do not buy regular corn chips because they are made with corn oil which has an MSG type of molecular structure) *Joe-Joes cookies chocolate or vanilla (Trader Joes) *Cheese Puffs Reduced Fat (Trader Joes) (DO NOT buy regular cheese puffs they have yellow dyes and I think they might have MSG I would have to read a bag to see. It has been a long time since I bought regular) *Cheetos All-Natural cheese puffs (Wal-Mart)(again DO NOT but the regular) *Mi Ranchito Blue Restaurant Style Tortilla Chips (Costco) *Raisins *Trader Joe's Vanilla Chocolate Chips (my son loves to eat these just like candy) *Trader Joes Peanut Butter Cups *Great-Value Brand Peanut Butter Cups (Wal-Mart) *Rice Cakes Lightly Salted (Wal-mart or Trader Joes) (DO NOT buy seasoned rice cakes MSG) *Ghiradelli Chocolate Chips for baking or for just eating (just don't over eat chocolate because it does have tyramine's) *Cat's Cookies (they are like animal crackers) Trader Joes *Cape Cod Potato Chips Regular (Costco) *Waffle Cones Keebler (Wal-Mart) *Breyers All Natural Ice Creams *Homemade crepes with white sugar and lemon juice *Blue Berries Frozen (Costco) (My children love eating frozen blue berries - they are just very messy and if you are sensitive to salicylates these could be a problem) *Claussen Deli Style Kosher Dills (Wal-Mart) *Cottage Cheese Regular *Kozy Shack Puddings *Squirrels Nest Candies (I have not ordered but other's on the forum have) http://home.squirrels-nest.com/ *Use real vanilla when making cookies *Use all natural butter Beverages *Hansen's Regular Soda's drinking 1/2 can. Whole can has a lot of sugar and I noticed increase in tics after drinking whole can.(Costco, Trader Joes, or Sprouts) (NEVER DIET because of the aspartame) *Simply Lemonade (Wal-Mart near the orange juices) *Capri-Sun All Natural 100% Juice (Costco. Make sure you do not buy the regular Capri-Suns because they have high fructose corn syrup) *Milk (I am learning you want to use 2% or higher because the lower the fat the more the milk is processed which can create a molecular change. My son seems to tolerate the 1% but I am switching just to get it out of his diet anyway) *Donald Ducks Orange Juice (Wal-mart) *Crystal Geser Juice Squeezes (Trader Joes) Eating Out *I have attached a link that I found helpful to avoid MSG (I don't know if the author took in consideration with the dyes or high fructose corn syrups) http://www.migraineweb.com/page6.html. *What I have started doing is going to the restaurants web sites and reading the ingredients lists prior to going. *One thing Daniel seems to tolerate is the Burger King Kids Hamburger Meal with French Fries. Get the regular milk instead of a soda. The bun does have high fructose corn syrup though! *The other thing we are doing, lets say we go to the mall, is taking a Hansen's Soda with us. This way he feels like he is getting a "soda". *Harkins Theater Popcorn (Do not use butter topping or any special salts just regular) *Cold Stone Creamry Ice Cream (Regular Sweet Cream only (no low sugar)). You will need to check the ingredients on the mix ins you would want to add. ******************************************************************************************************* Here is the information about MSG that I said I would include. Here are the common names for MSG. I would keep a card or piece of paper with them on so you can carry them around to check labels *** MSG, Monosodium glutamate, monopotassium glutamate, glutamate, glutamic acid, gelatin, hydrolyzed vegetable protein (HVP), hydrolyzed plant protein (HPP), autolyzed plant protein, sodium caseinate, calcium caseinate, textured protein, yeast extract, yeast food or nutrient, and autolyzed yeast. I have to say I have yet to figure out exactly what yeast food or nutrient would be. Gluten products do not seem to bother Daniel so I am a bit confused by this name. It must be something that has been used on a label at some point to disguise MSG. Here is a link I created on Latitudes about MSG http://www.latitudes.org/forums/index.php?...p;mode=threaded . You really want to avoid anything seasoned, canned soups, ANY soy sauce product (this includes any products with Soy Sauce at Trader Joes/Sprouts/Whole Foods. It is naturally high in MSG even if MSG is not added. It is the way it is manufactured), parmasean cheese (naturally high), and pretty much any thing processed. You really need to also avoid school lunches. School lunches prepared at the school are more then likely going to be high in MSG. You need to go in and look at the labels. Don't trust that the "lunch staff" know that they do or do not have MSG. I tested this out at my son's school because they thought there was no MSG. Probably 70% of the lunches had hidden MSG names (no fault of the lunch staff they were purchasing what the State of Arizona government told them to buy!!!!) Here is a link to companies claiming there food is MSG free but are not http://www.truthinlabeling.org/nomsg.html . This explains what MSG does in the body http://books.google.com/books?id=UxDNkhvIc...qDkVbrdH-X-fsTc . Here are some other websites that might be helpful http://www.msgmyth.com/hidename.htm , http://www.msgtruth.org/sulfite.htm , http://www.msgtruth.org/whatisit.htm , http://www.msgmyth.com/discus/messages/247/247.html , http://www.msgtruth.org/why.htm I hope this list helps some. I know it is VERY overwhelming trying to figure out what to feed children who do not want to feel like they are being left out. But the effort of making the changes is SO WELL WORTH IT!!! Carolyn N.

Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available. Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo

My son does not have Lyme, and the Ozone helped somewhat. The Cunningham Panel has become the standard lab used to show there is an autoimmune component to OCD and tic symptoms. Based on the results of the Cunningham Panel, my son’s doctor is treating him for autoimmune encephalitis. Do a Google search on Cunningham Panel or Cunningham Panel PANDAS. You can probably search within this forum also.

The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.

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.

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