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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!

Hi again @Swetha I just wanted to also comment on what you said re excitement being a tic trigger This is also something many people with TS seem to experience - whether it is great excitement or big stress - that seems to often cause tics to wax. Someone once suggested this could be linked to the adrenaline reaction in both, and how all that can impact dopamine levels (elevated dopamine may be a tic trigger?) Try keeping a journal of when you notice tics up or down and what you remember could be associated (food, environment, emotions etc) It is really amazing how one can begin to see patterns and then be able to implement whatever needed to help.

Hi Swetha I just wanted to commend you for all you are doing to help your son. I know it seems daunting, but day at a time, step by step to improvement! You mentioned and I just wanted to reassure you that this is one of the most common things for people with TS. Tic suppression at school, work etc and then a massive tic release once in the safety of car, home etc

Hi @Notokay29 I so agree with Atex on noxious chemicals that can be tic triggers, plus that sometimes it takes a trigger combo, or perhaps just a subtle underlying change in a person's immune system, to see waxing tics. Once we knew my son had Multiple Chemical Sensitivity, we had more clarity on a lot of his reactivity to what he came in contact with, inhaled or ingested. Still sounds to me like your son may be reactive to possible chemical treatment of the field, or even the bright lighting there (if night games?) My son ticced more under fluorescent lighting.

Hi @Christina2023 Others may have different experience but for my son only the L-Carnitine worked to help his loud vocal tic. This was recommended by his Integrative physician. He recommended short term use, 500mg L-carnitine daily. However my son had a very negative reaction to acetyl-L- Carnitine when we tried it some years later, and so we went back to the L and again it worked quickly and well. Also my son never had any problem with an increase in OCD symptoms (what you refer to as stuckness) using L-Carnitine. If anything, his OCD diminished as the stress of the vocal yelling tic was removed! Some people with Tourette Syndrome, including my son, have a form of what is called Tourettic OCD, where obsessive-compulsive symptoms tend to morph with tics and so a tic can become obsessive or compulsive and also an OCD issue can become a tic. We always found that as there was relief for one, so the other waned as well.

Hi @Notokay29 Yes, excitement, like stress, seems to sometimes trigger tics. I would also consider if he may be reacting to something on the field - some kids are very sensitive to the chemical fertilizers or pesticides that may be applied to sports fields. Similarly a trip to the fair may involve, in addition to the excitement, exposure to foods etc that may be triggering eg my son loved cotton candy but the artificial dyes are big tic triggers to him So in addition to the potential for the excitement trigger, which one can't really control much....I would also look at any other factors that may be adding triggers.