KSandy

I've read so many books about PANDAS, and one thing they all talk about is lowering inflammation through diet changes, and making sure the omega levels are balanced. My daughter had too much omega 6 and not enough omega 3, which made her inflammation worse. I cut out all cooking oils except high quality olive oil, and started giving her omega 3 and DHA from nordic naturals as well as flax seed oil. You night find these books helpful: The Nemechek Protocol Anything written by Dr. Jill Crista, but especially A Light in the Dark Eat Dirt The Dirt Cure

Bring it up to his dentist. Also, consider switching to a toothpaste with colloidal silver and a mouth and throat rinse with neem or thyme oil. Does he use a tongue scraper/floss?

That is very helpful thanks. In addition to Epsom salt baths, what other detox techniques could be used?

Her ped suggested nasal spray first, followed by vaseline, but I opted for spray then an aqueous gel

My 13yo got her PANDAS, autism, and TS diagnosis this year after struggling with tics, OCD, and anxiety for most of her life. Now that we're on the road to healing and a better understanding of what's going on, I have a few questions about flare-ups. We are avoiding many foods that showed up as reactive on a food intolerance test, but something caused a huge flare about a week ago and hasn't quite waned away yet. My questions are: Can you usually tell what causes a flare in your child? What types of things cause flares, and how long do they last? What do you do when you notice a flare? Can you give certain supplements, vitamins, or others during a flare to reduce the duration? What else should I know about flares? It's been a discouraging week. Vocal and Motor tics that haven't been around for months are suddenly back with a vengeance...(full disclosure, it seems like it was from a dairy-free flavored iced coffee that she drank)

Repeat labs just showed off the charts strep antibodies and inflammation. Trying hard not to feel defeated. Has this happened to anyone else after a round of antibiotics? She did cefdinir for 30 days in May.

Does anyone have any insight or experience with a strep-positive PANDAS kid getting frequent nose bleeds? It only happens at night while she's asleep. I have her using a nasal spray and a humidifier, but so far I can't tell if those two things are helping. Her neurologist has no advice except to try a humidifier and take her to an ENT if that doesn't work (I assume the ENT won't know anything about PANDAS). If strep can live in the nose, could that cause nose bleeds? One of her motor tics is to forcefully blow air out of her nose...could that be her body trying to expel what it perceives to be a bacterial threat?

My 13yo got her diagnosis this year after struggling with tics, OCD, and anxiety for most of her life. Now that we're on the road to healing and a better understanding of what's going on, I have a lot of questions about flare-ups. We are avoiding many different foods that showed up as reactive on a food intolerance test, but something caused a huge flare about a week ago and it hasn't quite waned away yet. My questions are: Can you usually tell what causes a flare in your child? What types of things cause flares, and how long do they last? What do you do when you notice a flare? Can you give certain supplements or vitamins or other during a flare to reduce the duration? What else should I know about flares? Its been a discouraging week. Vocal and Motor tics that haven't been around for months are suddenly back with a vengeance...I *think* I know what caused it, but why is the flare lasting so long if the exposure was a one-time thing? (full disclosure, it seems like it was from a dairy-free flavored iced coffee that she drank)

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

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?