Chemar

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 @fgter We didn't split his extra magnesium. He had that as once daily, and we learned it was best for him at night as it did help him relax for sleep. He also got some (low dose) magnesium from his multi, which he had with breakfast or lunch.And when he wanted, a soak in an Epsom Salts bath (magnesium sulfate)

Hoping this may be the start of a wider recognition in the USA of the hazards to health that these chemical dyes are- especially for children! http://www.nbcnews.com/news/us-news/california-legislators-send-governor-landmark-bill-banning-six-artific-rcna168953

Hello 4AHAA It's good that you have already started on the right path for your daughter! We did have most help by having an integrative MD as well as a holistic team that complemented her guidance. Once we kept a journal - it became a lot more clear to identify what our son's tic triggers were, and what environmental, dietary and nutritional supplement measures helped, in addition to other treatments that were beneficial. Honestly, it surprised me how clear some triggers were that we might not have noticed-eg my son's extreme sensitivity to chlorinated pools that would set of a tic storm! There's a wealth of helpful info documented here over the years, so do keep using the search feature for specific things, and also take a look at some of the pinned threads that might be of assistance to you. And remember- there are never any questions not worth asking as you seek answers to help your child. So many people have so much experience to share.

Welcome to the forum @fgter You have already received some very good info above. I would just add that it is important to remember that people who tic are as varied as the tics! so what works for one doesn't always do so for another, as it is very much dependent on what is causing the tics, along with the unique system of the individual. Keeping a journal to help you record the waxing and waning of the tics, and then learning what may be the triggers, is one of the most important things! I am going to link an older thread that has some general useful info that may be helpful to you Also do be sure to consider one or more of the excellent books by our admin Sheila Rogers. They are such valuable resources to help you navigate this journey. https://latitudes.org/store/

@Swetha Just adding: Areas to check would be the obvious tooth/gum infection, tonsils/adenoids and digestive system- as usually bad breath smell originates from one of those I found a 2013 thread here on bad breath in PANDAS that may be helpful to you

Hi Swetha I don't know what is causing that intensity of breath odor? but I just wanted to mention that there are numerous anecdotal reports of an increase in flare ups of tics and OCD, along with digestive issues when any dental stuff is happening- eg losing teeth, new teeth erupting and even dental work.

We had specialized "antitox" drops that were formulated for him via our clinical acupuncture therapist, who also used other techniques to assist. The epsom baths are the most general in that both the magnesium benefits are derived, as well as the detox from the sulfates

Hi KSandy So sorry your daughter has been struggling with this flare up of symptoms. I can only answer re TS tics specifically: Yes, we learned to identify what causes flares, but sometimes the mystery remains..... Flare triggers are very varied and can either be common to many, or unique to the individual. Another reason why keeping a journal is so very helpful. Similarly the duration of a flare is hard to predict. We would always have our "go to" when a flare started. Try to identify the trigger and also use whatever methods have worked before to slow the flare. In our case certain supplements, epsom salts(magnesium sulfate) baths, other detox methods and very specific acupuncture were usually most helpful. Anti-inflammatory supplements like boswellia, curcumin, Omega3 etc helped and I know for many PANDAS patients-ibuprofen can help too (cvs sells 200mg dye free!) Flares usually mean "something" in the environment or internal has triggered the immune system from our experience-and so identifying and eliminating that "something" and then doing whatever helps to reduce that ramped up immune system & inflammatory response Hope that may offer some helpful tips

Excellent new webinar article https://latitudes.org/dr-william-shaw-on-unlocking-add-and-adhd/

What Is Tourette Syndrome and other articles on TS/tics from Latitudes main page

Hi @SoWorried_1 I know all kids are different- but for my son the best calming at night came from a soak in a warm Epsom Salts (magnesium sulfate) bath with a few drops of lavender oil. He really looked forward to it, and would also enjoy a cup of chamomile tea that also has relaxing calming properties. Epsom Salts bath soaking also helps soothe those muscles and joints that tics can sometimes strain.

@mert your post today made me remember one from many years ago by my friend Lara. It helped me so much in those early days after my son's tics began, and we received the Tourette diagnosis- especially in realizing that there was that needed balance in helping him by improving what we could - but also not letting helping become a hindrance to him just being! Here it is again:

@Swetha I also found these articles that may be helpful to you? https://www.gutmicrobiotaforhealth.com/gut-microbiota-may-involved-pediatric-autoimmune-neuropsychiatric-disorders-related-streptococcal-infections-3/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5900790/

Hi @Swetha I also don't have enough info re PANS/PANDAS GIT bacteria per se -but I do know after a Candida albicans "yeast" infection we can have an overgrowth of "bad" bacteria. We use daily plain organic kefir and healthy fermented food to boost good bacteria in the gut, as well as avoiding the refined carbs/sugars that Candida loves. Here's a good overview on PANDAS/PANS that may be helpful to you. https://pandasnetwork.org/understanding-pandas/ I know also on our own forum for PANS there have been a number of GIT related discussions and it seems to be a common symptom - possibly due to the Brain-Gut connection that is finally getting more mainstream attention - so you might find info searching there too https://latitudes.org/forums/forum/17-pans-pandas-lyme-included/

My son was experiencing pain and digestive distress. The doctor suggested an endoscopy/colonoscopy as they suspected Crohn's, and it was confirmed during the examination.

Hi gingermom Hopefully someone with more PANS knowledge stops by- but I just wanted to welcome you, and say that I am thankful there was that relief from the ibuprofen. fyi CVS has their own brand 200mg dye-free ibuprofen (we have always avoided food dyes) My son dealt with Tourette along with intense OCD, and we do suspect a PANS component, but this was many years ago-but we also used a natural anti-inflammatory by NOW called Boswellia extract that has Boswellia + Curcumin. Our Integrative MD also suggested Olive Leaf Extract as a natural antibiotic, and you will find other posts about it -sometimes abbreviated OLE - I do hope you find the info you need to help your daughter.

Hi olinhil So sorry to hear of the hard path that has brought you here. As a mother whose son was harmed by the neuro medications prescribed, I have deep empathy. My son does have genetic Tourette Syndrome (dad & grandpa and ? before him) and we do also suspect a possible PANS component. Zyprexa was the last med he was prescribed, and it nearly killed him. None of the meds helped more than they harmed. We had a long and uphill withdrawal, but thankfully things did get better thanks to all I learned from Latitudes, and the guidance of a great team of integrative and holistic physicians and treatments. As your son's onset may have been from a different vector than mine, I can't make specific suggestions other than to encourage you to be persistent in your quest to help your child. My son is now in his mid 30s and no-one would guess the struggles he went through from those preteen/teen years. So remember there is much reason for hope! I do hope those with more experience with PANS/PANDAS may see your post and respond Not sure where you are located but maybe this will help you locate a PANS physician? https://www.pandasppn.org/practitioners/

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.

Hi Itea So sorry your nephew is going through this. There is a lot of helpful info archived here if you do a search. I know I have seen discussions here on doctors who treat PANDAS in the Tristate area so hopefully a search may lead you to those Here is a PANDAS physician network link that may be helpful to you https://www.pandasppn.org/practitioners/

PANDAS physicians Pandas Physicians Network

Hi I don't have much info to impart, but I do know that as Human Granulocytic Ehrlichiosis is a tick-borne infection, you may want to consult with a physician who has experience as I know in Lyme Disease, doctors in the know advise starting treatment protocols asap, so I would imagine same for Ehrlichiosis https://medlineplus.gov/ency/article/001381.htm

Hi Swetha, Our experience was that sometimes relaxation or concentration can also bring a tic release. Honestly, if your son is not bothered by the tics while he reads, I would not draw attention to them, and certainly would not stop him reading. I realized early on our journey that frequently I was way more aware of tics than my son was, and drawing attention or trying to get him to stop often just ramped them up! We found using "daylight" light bulbs very helpful indoors, if that may help? Also diffusing a calming essential oil like lavender or jasmine, if he tolerates those. Also, my son needed corrective eyeglasses, and getting those helped a lot with both eye tics and overall. Just some thoughts that may be helpful to you?

My son's dx of MCS some years back (by a respected Allergy MD) certainly answered a lot of questions for us regarding his hypersensitivity! We had already gone all in on being as toxin free as we could, so the dx rather helped us understand more about past reactions, and also added an even greater level of awareness on things he may not have considered. Although no PANDAS dx, we know there was a PANS connection more than likely along with the TS. I do know of others with no clear infection connection whose tics do seem triggered by various chemicals so certainly an interesting area of research I would hope. So many more people seem to be realizing how bad all the chemicals added to everything may be, whether or not one has underlying health issues.

Atex, sadly conventional doctors just don't run the kinds of tests that would give so much more insight! We were so thankful to find an Integrative physician who had all the qualifications as an MD, but with the extra benefit of holistic certification too. Heavy metal testing was one of the first done-whereas the diagnosing neurologist we had initially seen only unleashed a nightmare of haldol on my son!