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  3. 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.
  4. 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/
  5. PANDAS physicians Pandas Physicians Network
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  7. It's all so overwhelming, but I'll try to keep it as brief as possible. I know the road to healing looks different for everyone, but I value the community here and I'm just looking for some feedback/support. Background: My daughter is 13 and has had motor and vocal tics since she was four; they change in nature and wax and wane, although lately, they're at the worst they have ever been. At age 4 she was given antibiotics for candida albicans overgrowth...the pills given to her had to be crushed up and mixed with food which she hated. We struggled and had a lot of really terrible moments where I felt I was forcing her to take the medication and she just couldn't make herself do it because of the taste. I have a lot of guilt over this and I didn't know half of what I know now about gut health. I don't know if she ever fully recovered from the yeast, although her external symptoms cleared up. Around age 9 she developed some very specific OCD behaviors that were focused on intrusive thoughts and rumination. In 2020 she began to struggle with compulsive hand-washing and constantly feeling like her hands weren't ever clean enough. (Thanks COVID). Since reaching puberty, her anxiety has gotten a lot worse, especially social anxiety. She has been officially diagnosed with general anxiety, OCD, TS, and ASD. Present: She sees a therapist once per week and we have both noticed an improvement in her anxiety because of this. We now see a neurologist who has diagnosed her with PANDAS and she is starting cefdinir tomorrow. She's taking omega, iron, and vitamin D supplements based on results of lab work. She also takes milk thistle, NAC, and inositol. Lab work also indicated inflammation. I had her tested for food intolerances and she showed high IgG reactions to gluten, eggs, and dairy so we are starting a strict elimination diet today. We already use hypoallergenic and chemical-free cleaners (thank you Force of Nature). Future: I'm going to have her start taking digestive enzymes and L-glutamine for gut repair. I'm having her gut microbiome tested with a stool analysis company called Flore; they will also create custom probiotics for her based on the results. I'm going to test our home for mold, we have only lived here one year but there appears to have been water damage at some point (I'm scared of the results because we cannot aford to move right now). We will be going back to our chiropractor once per month like we used to (she uses the Torque Release Technique). I'm starting her on curcumin for inflammation, as well as the antioxidant resveratrol. Other random thoughts: She has had chronically chapped/dry/peeling lips since she was very young. Could this be related to candida? How to heal if the gut microbiome results point to SIBO?
  8. Hi, Can someone recommend a good PANS specialist in the NYC/Tristate area? My nephew's OCD has gotten very severe. He is harming himself every day, and his ritual is getting longer and longer. This is not sustainable. Thanks for your help!
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  10. 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
  11. My son has pans. It started after a covid infection. He is currently on Azrithomycin. Its not really helping. Its been 2 months and 2 weeks. Some of his bloodwork JUST came back and he is her has 1:20 IGM for Human Granulocytic Ehrlichiosis. Anyone have experience treating this? Did it help? Thanks,
  12. Some of his bloodwork came back and his has high IGM- 1:20 for Hunan Granlocytic Erlichiosis. Anyone have any success treating it? If so, what did you use?
  13. My daughter had constipation prior to her PANS (back in 2007!). For some people, probiotics can make constipation worse, but they are needed for the gut health! Check with your doctor first, but you can try adding magnesium glycinate before bed (helps you sleep too). We use Metabolic Maintenance. Start with one 125 mg capsule and you can go up to two if needed. You can also add one capsule in the AM if needed. If he's not a pill taker, try an epsom salt bath. Also a jar of pears baby food or an apple or banana help a lot! A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Ask about candida too. If your son has symptoms of candida, he might need an OAT test to confirm. Also check IGg levels to be sure he can fight whatever he's fighting. For a bad flare try ibuprofen. We used a lot of that during the early days! Eventually the azith will modulate the immune system and should calm things down. It worked for us. 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
  14. My daughter was never tested or diagnosed with PANS, however, we noticed that a messed up digestive system correlated to OCD behavior (bad behavior in general) and tics. Infections, allergies, and teeth coming in were all aggravating factors. We used supplements and probiotics in a targeted and sparingly way which let us find the food offenses.
  15. My son got a covid infection X mas and developed intrusive thoughts and anger overnight. He was put on Azrithomycin and it helped but didn't eliminate the obsessions or the anger. We are waiting on tick results. He had hight titers for herpes 6 (1 :20 H) and cytomegalovirus (1.70H.) We are also doing GI tests and others and waiting on results. He had unexplained constipation starting in Oct of this year. Wondering if anyone else here also had unexplained constipation before onset of PANS and what you did to test brain gut connection? We are on all sorts of supplements and probiotics. Nothing is taking the edge off. Thanks
  16. Not to make the rabbit hole any deeper, but pesticide use is a biggie as well. I was reminded yesterday when I bought a pair of shoes and the box contained micro-pak..... Micro-pak is in a lot of consumer products. Home - Micro-Pak (micropakltd.com) It may be better than what they had been spraying down boxes with, but I still wouldn't want it lingering in the house.
  17. We are partial to Dr Bronners as they are one of the most transparent ones out there, and we buy Sals and Castille soaps in gallon form which last quite a while. Dishwasher tabs: Seventh Generation tabs and dishwashing rinse agent Laundry detergent: Dr Bronners Sals suds, about 2 tbsp in a full load in our HE washer Laundry Drying: wool balls General Cleaning: Dr Bronners Sals suds diluted to about 1tsp:32oz water General Cleaning for Hard water stains: Dr Bronner Sals suds diluted to 1tsp:32oz vinegar Toilet disinfecting: Hydrogen peroxide (yes the standard stuff you can pick up for under a buck per bottle) Hand washing: Dr Bronners Baby Mild Castille soap diluted with water in foaming hand pumps For hard floors, we have a steam mopper which works well without any soaps/surfactants. When they do need a wash, it's literally 1tsp sals in a bucket of warm water.
  18. Hi everyone! I am looking for options to make my home as chemical free as possible for my son who is still struggling with Tics. Does anyone have any suggestions for dishwasher tabs, clothes washing powder, and general cleaning stuff at home. I look forward to hearing from you all! Thanks a ton! Swetha
  19. @mar your msg gives me hope! Thanks for all the inputs and such detailing. 🙏
  20. Dear Chemar, Thanks a ton! I am figuring out many things but very slowly! Your responses and your inputs have been very helpful so far. I am grateful. Also thanks for putting things into perspective for me! Swetha
  21. 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?
  22. Hi everyone, My 10 year old son is doing well with supplements, diet changes, no screens etc., But his Tics are still off the charts while he reads. He loves reading and it's so hard to stop him from reading. Also if I don't stop him I fear he may become cranky and upset bcz of his own tics. Can someone pls give some suggestions what has helped and share the experience with tics triggered while reading. Thanks in advance. Regards, Swetha
  23. 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.
  24. Given the lack of any meaningful research in the field MCS, I feel like anyone with PANS/PANDAS or any tic disorder should really be considering a toxin free lifestyle. And I'm not just talking about organic produce at the grocery store, but really going all in.
  25. @Irene123 I had considered taking up the Dr. Piper Gibson's Program for my son who is 10 years old and has been struggling with Tics since 3 months now. But like you said it did not suit our dietary needs, we are vegetarians and cant start with Animal Protein now suddenly. But I liked some of the suggestions of Dr. Piper Gibson (Like ditch the sugars, Gluten and Dairy). I removed the sugars and tried increasing the protein and it definitely seems to have reduced by 10-15% atleast. I am currently trying Homeopathy and some supplements (Magnesium Citrate, B-Complex, Zinc, Omega3, Vit-C, Calm kid L-Theanine Gummies) I have also tried Bach flower remedies and I think it hasnt helped much. We also see that some days are better and some days are worse, I am unable to see a trend or trigger! In our case Books are a major trigger, he is a lover of books and as soon as he holds his books he starts ticcing. To me it seems like he has made it kind of a habit to start ticcing as soon as he is with books. Sitting in the car was also anothe major Trigger but it is definitely getting better compared to how it was 3 months ago. So yes, one day at a time! I am trying to stay positive. Cheers, Swetha
  26. It is hard to say whether her tics are related to her gut issues or not, the gut issues started two years ago but tics started 6 years ago. We have worked with Dazz of Motor Tic Mastery, who is absolutely wonderful. He showed my daughter some relaxation skills and had several discussions with her about her condition, but she does not want to do anything. The tics don't bother her, so she does not want to put the effort (because it is a lot of effort) to deal with them and try to relax herself. So, we are not moving anywhere with the tics, if she ever wants to deal with them, she will have to relax herself and change her diet, I can't do it for her.
  27. Thank you @mertand @madimifor your kind replies. I know its not going to be a simple and an easy route. But yes one day at a time and I am trying to be positive! Wishing only the best to you guys!
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