SSS

For PANS, high dose IVIG is used - it's important. Sorry I don't have links or aren't more articulate now, but the PANS dose typically is 1.5 to 2.0.

Hi- Did he have high dose IVIG? Glad the aftereffects were minimal...

Wow. Was he off all antibiotics? My dd has been off all antibiotics for awhile, and got strep impetigo last Fall- I freaked, but actually after a few 10 day rounds of antibiotics, some die off during treatment, the infection went away and we were back to our 'normal.'

Well, I spent yesterday jumping through hoops to try this from my regular Ped. only to find out my pharmacy said: No longer available from the manufacture. My insurance wasn't going to cover it anyway, so I ordered some phosphatidylserine (PS100) and have restarted high EPA fish oil. Hopefully I can create some magic, needing some better focus over here. We did use PS100 a few years back, and it was one of our few real 'wows' Thanks for reminder.

Might be yeast... I could relate to your post. Gluten free, dairy free, low sugar/ carbs, no food dyes, no high fructose corn syrup, 100% diet really does calm my dd down.

My last child born, 7 years ago while I had unknown and untreated Lyme and Bart, was a scheduled C-section for late afternoon. I went into labor that day, and they gave me that drug to stop contractions so they could do the C- section (and it was awful/ made me sick) She is healthy and neuro typical, thank God. It didn't affect us.

A CBC blood test, which looks at neutrophils (white blood cell counts) and red blood cells, very often in our experience reads 'completely normal' (in range) while infections had been raging.

I don't even know what to say. I am in CA, and feed my kids non organic raspberries. Not anymore, but I have been just this week. My monthly food bill is more than my mortgage, but I can't buy EVERYTHING organic, already buying organic meat, veggies, eggs, etc. for family of 5. Pesticide link will be squashed lickidy split, think of the millions, perhaps a billion, in lost revenue if word got out on none organic produce linked to paralysis due to pesticides. Time to hoe and plant in the backyard, I guess. Don't mean to sound cold to the parents and children afflicted, believe me I am not, and have had real grief on what's happening to our children.

Well, I swear my dd reacts to the strep strain in probiotics, so I give her neither of those- I give her Custom Probiotics, Theralac, Culterelle (the GF/ CF one), sometimes the little Pearl ones. Both that you mentioned are high quality products, for sure, just FYI on the strep strain in them.

Before PANS when I was doing 'biomed healing' with my daughter, Zinc supplementation was very common, a relation to mercury depleting zinc in the body. (Google mercury and zinc deficient / autism) Recently, H pylori has been on my radar (awaiting test results) and I've been reading about Zinc carnosine helps heal a leaky gut/ repair the membrane. So of course I ordered some, being the supplement junky I am ;-)

It's a compulsion (I know you know that) so a reminder not to do it when seeing it works for 5 seconds. Then they'll start to hide to do it. My dd developed it at the end of last summer, with skin picking. She started picking moles or freckles on her body, turned to sore spots, picked again. I had let her excessively chew Trident gum w/ aspartame all summer, think it ramped up glutamate in brain. Did a few weeks of PharmaNac, suppose to counter glutamate, and the skin picking stopped. School then started, and she picked up Impetigo for the first time, on her face no less, back on antibiotics (we had been off all for quite awhile) but I wonder if strep entered through healing skin sores, or was the strep there already? (no outward signs) She hasn't excessively/ compulsively picked since that episode.

http://www.elanaspantry.com That has some of my very favorite, easy, kid friendly recipes, made with simple almond flour (available at Costco) or coconut flour, which is healthy and has protein. My whole family is not gluten/ dairy or grain free, but I have a separate toaster oven for GF items, but the main dinner always is that we all eat, and my youngest who is not GF often gets the same GF food as my dd, since they snack and eat together, to make it 'fair' and the youngest doesn't care and likes all the GF CF food too. Honestly, Udi's plain white sandwich bread any kid will eat, and the nice thing about Udi's bread products (bagels, breads) you can eat them 'fresh', not frozen then toasted. The trick is not to replace the GF CF items with high carb sugar packaged expensive replacements, which is tempting at first, to get the kid to eat, lol. It means actual cooking instead, and maybe laying down the law, like rowingmom said, here is the food, it's what we have, not a short order cook, if you are hungry, you'll eat it. And the food tastes good, I'm not talking about placing Brussels sprouts in front of them for the first time and expecting that- In the beginning, to get dd to eat veggies, if she tried it, ate some, she'd get a little coconut ice cream for dessert. She knows she cannot share food at school.

I had to have rigorous dental cleaning while taking Doxycycline and Minocycline, and my dentist was able to remove discoloration (I got dark staining on back molars.)

My daughter also has a 504, and has never needed academic help (knock on all wood please) Like dcmom, I had it in place because of anxiety issues, and the uncertainty of what the future may bring with a flair, or downturn. I also had a detailed letter from our then treating PANS Dr. (that I wrote with help) and it was put in place when she was in kindergarten. Every year the head school nurse calls me to review it, and do updates. With the letter signed from a MD, it was then easy to put the 504 in place.

Whew, it is a journey no- one can truly understand unless they live it- I could relate very much to your post (like so many here) Hang in there, you are a wonderful mother---

Your information on this is fascinating (and horrific.) Thank you for sharing--

At the time we did our 2 HD IVIG's (6 weeks between), we did not know about Lyme and Bartonella infections. As I said, after the first HD IVIG, we had rages, that calmed with 3 weeks Vancomycin (maybe it killed off Lyme.) She then got exposed to a classroom full of strep, and it all seemed to amp up again, so did another IVIG. And, after the 2nd HD IVIG, immediately after, we were GOLD. My dd was happy, content, no OCD, playing, joyful. And 6-8 weeks later, it all seemed to wear off, as the IVIG wore off and left her body. She was not re-exposed to anything, I kept her home from school/ turned into summer. It's hard to figure out- was there magic antibodies in the 2nd IVIG?

I usually don't share this, and have no idea if it will help, but my (our) heart goes out to you. After our 1st HD- IVIG, we had rages. About 2-3 weeks after, I was doing a phone consult with another treating PANS MD I was using as a 2nd opinion with phone consults, and this Dr.s opinion was that the rages meant bacteria, and recommend 3 weeks of Vancomycin. I had said, we just had an OAT test done, no clostridia came up- nonetheless, we did the 3 weeks of vancomycin (she'd never had it before) and it did work. I know you said you've been treating your son's gut infections for years, keeps coming back- Have you looked into fecal transplant? I don't suggest that lightly, but re- occurring clostridia.... I'd consider it in that case. Hang in there---

I don't know if I agree about the inflammation itself not causing 'issues' and food proteins (gluten, casein) leaking into the blood stream causing opioid effect. I absolutely concede I'm looking through our experience, and other boards I spent a lot of time on (Yahoo GF/CF kids) Yeast was horrific here, way, way before my dd ever had an antibiotic. Only ate carbs, begged and begged, any fruit by the truckloads, etc. Only ate meat and veggies when I took gluten and casein away. She was a C-section baby, and my own gut flora has been a wreck for years, with me in denial, and now I have my own rather severe gastro issues. So, maybe this will help someone out there, it's not a lot of fun to deal with for me at this point. Thankfully, my dd is much better. Wishing you and your son the best- S

The symptoms might be thought of in terms of inflammation. Why does ibuprofen work? Reduces inflammation. Why HIGH dose IVIG? Reduce inflammation. We are not on a 'diet' with GF/CF very low sugar, it's just a way of life. It's good food available at home. I pack a lunch everyday for school she really likes. I gave her teacher GF/CF chocolate chip cookies to keep and give to my dd anytime there is a treat in the class. Not a big deal. Here is a paragraph I copied off the Internet about candida causing 'leaky gut' 'Candida overgrowth (candida albicans) can lead to candida yeast infection and Leaky gut syndrome which is medically referred to as intestinal permeability. Leaky gut is a major gastrointestinal disorder that occurs when openings develop in the gut wall. These tiny holes can be created when candida overgrowth moves to a more serious stage of candida yeast infection and the candida yeast grows roots or hypha (plural hyphae) which is a long, branching filamentous cell of a fungus. This fungal growth is a more advanced stage of development in the candida albicans yeast infection. The hyphae spreads the bowel wall cells apart so that acidic, harmful microorganisms and macromolecules are then able to pass through (leak) these openings and enter the circulatory system. Thus the name Leaky Gut. The body is alerted to the invader and creates antibodies for protection, activates the immune system, and thus is born a food allergy. Food allergies are directly linked to leaky gut and candida yeast infection overgrowth.'

I'm just putting information out there Joy. If you google Leaky gut signs or Yeast overgrowth symptoms in children A variety of sources come up.

9 signs you have a leaky gut: http://www.mindbodygreen.com/0-10908/9-signs-you-have-a-leaky-gut.html (below is a chart I am pasting about yeast overgrowth) What Does Yeast Overgrowth Look Like? Yeast overgrowth manifests itself in two forms – behavior and physical. Behavioral signs: Headaches Inappropriate laughter Sleep disturbances Unexplained intermittent crying episodes Belly aches Constipation Bed wetting Gas pains Fatigue Depression “Foggyness” Inattention Hyperactivity Anger, aggression Increased self-stimulatory behavior High-pitched squealing Increased sensory defensiveness Climbing/jumping off things Sugar cravings Confusion Lethargy Inability to potty train, or loss of this skill Self-limiting Foods Plateauing in skills Physical Signs in the mouth, in the form of thrush on the skin such as diaper rash or eczema red ring around the anus

I understand more now (and a lot of it over my head, the politics, ugh!) I have an older teenager (and I'm old) and then 2 younger kids in the elementary school system, and it is frankly just SAD to see the public school classrooms these days, 1 teacher to 30 kids, and soooo many of the kids with issues. Anyway, hang in there, good thoughts for the transition- S

My dd got Impetigo for the first time last fall (at age 8) She was not on any antibiotics at the time, and it took putting her on Omnicef for 10 days to clear it (and the prescription cream applied 2x a day)

It reduced inflammation in my dd, so we (my husband too, who when he notices or weighs in, it's very substantial) have her 100% gluten, dairy, food dyes, HFCS FREE, she is calmer, and her thinking is clearer. And she gets better nutrition, less sugars on this way of eating. It seems completely daunting starting out, believe me, I know. But if you just give it a 3 month trial (key: it HAS to be 100% or it doesn't work) you can always go 'back' if you see no positives.