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We have 3 kids w PANDAS if you ever want to PM me, they are all different. For Myco we generally increase antibiotics for 5 days then switch to Myco-Chord (Energetix) where if you don't habe a homeopath you have to find your dose, it's gentle. Our younger kids when they were small only took max 5 drops 2x day, the older one can take 10 now if she needs it but they don't need it so much any more. I think myco = weakness for us and we see it most when the kids are fighting multiple infections which for us is Jan-June. I'll mention this because it was mentioned above our kids have always been gluten free or low gluten it really helps but now we're doing very strict gluten eradication in the whole house because my son might be having gluten related seizures, fun never stops. Hope it helps. Erin

Not sure the only problem but it can be a really big deal for some, night and day. Magnesium deficiency is often significant and debilitating for lyme folks, autism, pandas you name it, as you know. Our DD had severe similar to what was described above, personally I think Oxypowder is great but there are several other types of magnesium that may benefit your other issues - i'd suggest adding mag. Citrate and or mag. malate to what you're taking for additional neuro benefits beyond the consitaption challenges. Mag Ox pretty much just cleans you out is least likely to address a deficiency. That said, parasites flourish because there is imbalance in the gut. We've benefited greatly from probiotics on the order of 100 -200 billion per day -- a lot! and a product called GI Microbe X 2-3 caps per day to address parasites and gut balance.

I would characterize our sons experience the same. To quote his teacher this week, first week of school after starting Amantadine in August he's been on it a month but she has not seen him until this week: "We continue to see nice results from the medication. We think that he is significantly calmer. He is attending better and for longer periods of time. He seems to experience much less frustration. Overall, he is much more available for learning." I think we're seeing less OCD -= better attention. He is having sleep problems though, tough to crack. Our DAN said we could put him on as much as 7.5 mg or melatonin, We'd only ever had him on 2.5, then we went to 5.0 but he has only slept through the night once on 5.0 though a couple nights we didn't answer when he called me and he went back to sleep. He's needing much more exersise - let me re phrase that he's never had the stamina of a typical x year old boy, he's 10 now and seems to need a couple of hours to run around, also more hungry. Anyone else have Sleep Issues on Amantadine, what works? Anyone else try Namenda?

Restless Legs are often magnesium deficiency but could also be parasites, IMO. Anti parasitic may be very harsh and cause a lot of unacceptable symptoms like runny bms, could also create space for opportunistic infections if not supported well. Are you working with a DAN Dr? Our Dr has our kids on 3 capsules of GI Microbe-X per day, we worked up to that dose. Has been quite helpful with out daughter, no signs of parasites. Our son however is similarly well though he has some difficulty holding things together in the winter months he puts things in his mouth which is evidence of parasites in our house so for that period we added an extra antibiotic, otherwise GI Microbe-X at 3x day (Amazon.com) helps with full moon effect in our house among other types of behavior. Worth a try.

Our kids are with Dr. Nancy O'Hara and Dr. Gail Szakacs in Wilton CT for PANDAS, they have us try to increase antibiotics with a flare for example my son is in 2 tablets of Augmentin per day so if we sense a flare is starting we increase to 3 tablets per day for 5 days and we stay in touch with them, for our daughter who is well maintained on Zithromax she normally takes 250 mg per day but if we sense a flare we increase to 500 mg per day for 5 days and we stay in touch with the doctor. Is he also on antifungals, they help. Is he also on probiotics? Our kids are on 100 - 200 Billion, needs to be pretty high mostly in Bifido and Lactobacillus strains. Having said all that however we get our worst OCD about 5 days after a flare.Dr. Bouboulis (Darein CT, where my kids get IVIG) says that the post viral OCD means the body is doing it's job, he says it's a healthy response which I have to say still drives us crazy sometimes, what we look for is whether our instances of OCD are getting shorter. OCD used to be 2-3 weeks long back before we started treatment, now OCD is usually just 4-5 days for my son, or sometimes for my daughter just 1 day. Are you sure he has strep or is he reacting to other factors, a lot of kids are reacting to pollen allergens and to especially food right now, treating allergies and changing the diet even for a short time can lower the burden -- for example I need to be GF for tree pollen season otherwise I get wicked stomach aches so do my 2 PANDAS kids. Interesting article about how berberine fights strep http://www.ncbi.nlm.nih.gov/pmc/articles/PMC175870/ Change his food, reduce sugar, epsom salt soak in the bath daily, reduce allergens in his home especially the bedding, sleep environment. Hope it helps.

We're doing some detox this week because we are on break and our youngest age 7 is dragging. The older 2 have PANDAS and typically need more support around the full moon so they get detox this week anyway but the little one had several viruses that didn't clear yest and her teacher reported a lot of attention problems this quarter, also not eating well. She's on prohilactic antibiotics because she tends to be a carrier and infect the other ones. She gets one zithromax once a week but we started that when she was well and we have it in place now for 2 years. It does help, For now I'd suggest that the advice above to get her on a long maybe 3 month course of abx and probiotix to get you out of the woods while all this drags on then see about getting her some ongoing treatment and support w/ probiotics and detox.

We've been with Nancy O'Hara and Gail Szakacs in Wilton since 2007, all three of our kids w different issues autism, OCD Pandas, immune. Nancy O'Hara is very experienced with PANDAS, together they are considered among the very top tier in their field nationally and internationally. Take advantage of your proximity. They seem expensive up front, but not when you consider your time (we can do phone consults vs. seeing the neurologist in the city where it's a half or whole day off school for my son or work for me to have a 15 minute chat) also consider their extensive clinical experience -- who else has this many pandas patients?. I find them very efficient and streamlined actually especially compared to other big name Neurologists and MDs we see in the city. Worth it. Check out their site for details on becoming a patient. LMK any questions.

Have you tried magnesium for constipation? We used mag ox when our dd had severe impacted constipation, generally people are good on mag citrate or a tri mag blend. It is also very calming, one of the most depleted minerals in general.