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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.

Thank you so much for your reply. May I ask, what led you down the path to his Crohn's diagnosis?

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.

Update: all day yesterday, all she could think about was the "brain tumor" and dying. she had multiple bouts of tears and was unable to focus on anything else. I saw recommendations on here about ibuprofen so i gave her some last night. within like 15-20 minutes she was upstairs and we talked for probably an hour and a half about school, friends, movies, animals, etc. she was smiling and energetic and she could even mention the "tumor" without going into full blown panic and crying. she was much more rational. and she was able to go to sleep relatively quickly after taking melatonin, after a week of little to no sleep due to consumption by thoughts of dying in her sleep. does this seem indicatory? or a coincidence? im going to continue to offer her ibuprofen when she's in an extreme panic state and see how it affects her - if it continues to help, is it safe to assume she has PANS? or at a minimum, something inflammatory and medical as opposed to psychological

Brief backstory: November of 2021 my (now 13, so then 10 year old) presented with the symptoms of a bladder infection. We went to urgent care and tested for infection but it came back negative. In the days/weeks following this (and seemingly out of nowhere), my daughter developed multiple crippling symptoms including: extreme OCD behaviors - excessive hand washing (to the point of red and raw skin), counting behaviors, repetitive behaviors to prevent something from happening, etc. extreme food restriction - she believed everything to be poisoned and really struggled with eating for an extended period of time. inability to sleep - she always had a harder time falling asleep, but she developed an extreme fear of dying in her sleep and refused to go to sleep extreme delusions - i.e. she's been possessed by a demon and its going to drag her to in her sleep, the CIA is watching her via cameras in her bathroom, the boy from school implanted a chip in her shoulder and he's part of the mafia and they are out to get her, bugs crawled through her ears and are going to eat her brain. (there were more) a head tic - for a while she developed a head tic, which seemed to get worse when she was stressed. extreme anxiety she seemingly lost the ability to do math - she used to be good and now can't even do basic mental math. her short term memory is abhorrent. this period of extreme symptoms lasted roughly 8 months and then they calmed and she started to act more normally. she retained the anxiety, depression, ocd, and inability to sleep, but she stopped having the tic and the delusions subsided - she was much more able to rationalize. I discovered pans during this time period but never got her diagnosed. but I truly believe she fit the criteria. Now here we are 3 years later and I think shes having a flare up. her OCD has become extreme again. and she's trapped in an obsession about having a brain tumor. she cannot overcome the delusional irrational thought, even when she has moments where she knows its delusional. she's consumed by the thought of it and the belief that she is definitely going to die. she is currently in therapy 2x per week. and I have an appointment with a PANS specialist at UCLA (John Whelan) but it isnt until may 20th. Are there tests I can have my GP run in the meantime? are there things I can give her that might help? I saw people saying ibuprofen helps, so I just gave her some as an experiment to see if it helps her delusional thoughts. I really don't want to live through another time like before. advice and support please

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/

My child a year ago was a normal child of 11. He was smart too could program at an adult level. He was maybe a little bit autistic though. He didn't understand social dynamics. But he still functioned at high level. Then maybe 1/2 year ago he started getting mad more and cussing. He would cuss so much we would talk about him having tourette syndrome. But it was tolerable and we were hoping he would just grow out of it. But then 1/2 year ago he had a psychotic break. Where a voice in his head that he thought was a brain chip forced him to hit himself. We took him to the emergency room where they immediately put a hold on him. They put him in a ward and put him on zyprexa. They gave him back to us but the zyprexa didn't work and he was worse then ever. Becoming extremely sexual, kind of violent, breaking stuff all the time(doors, windows)and still hit himself. eventually he ended up on another ward this time we put him in. There they gave him cloadine, lithium and respirdone after all the other antipsychotics didn't work. Now he is not able to program or do anything functional, even writing legibly is hard. He is obsessed with sex, exercise and thinks eating is bad. He has ED from the meds too. We were slowly tapering him off the meds. And it was working out but now he is having a break again so we put him on the meds again. He isn't really functional on them but he isn't as much of a liability if they work. He isn't as strong on them so he is easier to manage that way at least. I don't think he will be able to live on these meds forever. He is too miserable. Anyways I need to know how to get a doctor or psychiatrist to prescribe him antibiotics. All the ones we talk too refuse. More testing and experts needed. And everything takes too long. We honestly have only known of the pans thing for a couple weeks. But from what I read he fits the description. And any other things I can try besides ibuprofen and antibiotics. Any advice is appreciated.

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

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?

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!

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

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,

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?

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

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.

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

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.

Bon Ami - been around forever! Eve

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.

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

@mar your msg gives me hope! Thanks for all the inputs and such detailing. 🙏

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

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?