fuelforall

And yes coconut is a bit pricey. But it's worth it.

Hey Emerson, Grace is right about soy. Find yourself anything coconut. It's the best thing for you. Extra Virgin Coconut oil- a tablespoon a day. Coconut milk is in cartons. Just don't buy hydrogenated coconut anything and you'll do great. The benefits of coconut are so great that the market (coconut flour, coconut sugar, etc) is going to explode. Michael

Formedbirds, Incorrect about the silver. It's harmless. What is NOT harmless is silver PROTEIN products. This is where the blue issue comes in. Google it,, you'll see what I mean. Michael

Is there anyone else here from SW PA? Oh, jeez, Pittsburgh, you're s----d. I've been following this blog a long time and wondered if ANYONE in Pittsburgh would get Pandas and they don't. My wife's family is from there and I think about us moving there one day and no one knows about it! Children's Hospital thinks PANDAS is bunk! Where's PA Mom? Best thing to do, call Dr Kovacevic's office in Illinois, do a phone consult. See what he can recommend for you fast. Dosage for what you have is fine but you need to try and get high dose augmentin, possibly xr, or zithromax or even Clindamycin in case your daughter (265 is not that high but it suggests possible carrier to me) is a carrier. Good luck, you also may have to bring her to the East Coast if things get bad. Dr Bouboulis is in Connecticut. He takes a lot of insurance and knows his stuff.

Don't have a dd. Don't have a rash. But the gels might work best for a rash as well. I saw they have colloidal silver sprays too. Have you tried that on your dd's rash?

Ya mean, ya gotta pick one or da udder? Hi, Vickie, whew, well I am a little bit of a newbie here but we're going whole hog here so I'll spill the beans. Colloidal or ionic silver kills strep. Period. I cannot say how it helps those who are carriers and asymptomatic and if it is at all helpful for PANDAS. Cannot say. BUT Silver water is a good way to give it as it tastes like,,, well... water. A couple tablespoons a couple times a day, maybe three times, then lower it. I sneak water in mixed with juice as needed. OLE, Stephanie has posted about: 500 mg three times a day. I ordered Thorne, they are reputable as a brand and they have the requisite olorepein. Just started it with my younger child. I think and my healer thinks this stuff is good. http://www.amazon.com/Silver-Water-Special-qts-39-75/dp/B000F7QPDO Happy trails, we're doing some interesting work with healers. More as we progress. Michael

Michael- What brand of Silver do you use and how much? Thanks! I like this one. Works well, lasts a while. http://www.amazon.com/Silver-Water-Special-qts-39-75/dp/B000F7QPDO Don't need more than a couple tablespoons a couple times a day to start. Keep it going, then tamp it down a bit if results are good. As Stephanie points out, when she tried to reduce her OLE to twice a day, the problems came back. A grown man said he takes one ounce a week for maintenance and has never had a cold or anything in 12 years. But our kids have a lot of bacteria and my healer would say load 'em up. BTW, please do NOT take any products with collodial silver PROTEIN. They are not safe if used too often. (The water does not have this) Again, I also tell people to go to drinklifein.com and look into zija. I feel great because of it. Evens out seratonin levels and so on (they won't say this on the web, but it's very effective for mood swings, now if I can just get my older son to take more!). If you want to sign up for zija, let me know. My whole family is on it. Michael

Folks, I wouldn't have suggested it before but honest, get yourself some colloidal silver to keep the strep away. See recent article http://www.montrealgazette.com/health/silver+bullet+common+cold/3687617/story.html My kids went on it and they aren't getting sick(the older one rarely did anyway, but the younger one has been fine since he started and he always got something). The stuff's been around forever. Spend the money on good stuff, silver water tastes just like water. It can only help, not harm you or kids. When I went to an alternative practitioner, she said, "Strep is easy to fix" and suggested silver. Will silver stop PANDAS and its symptoms? No. . See silver as a means of illness prevention, not Pandas symptom stifling. As a means of preventing relapses due to infections. Try it before you drive yourself nuts with blood tests, etc. Based on Stephanie's experience, OLE seems to be proof that alternative methods need harder looks on these matters. Good luck. Michael

Hi, I don't see Seagate, perhaps it does not have enough oleropein content. I would go with Thorne, they have very high quality stuff and plenty of oleropein. I just ordered some cheap at healthdesigns.com, going to try it on my four year old see if I see any improved behavior. Someone said no OLE while on antibiotics, I believe. Michael

You could also try to find a pediatric chiropractor that deals with sensory issues. There is one where I live but we haven't gone to her yet.

Try to find coconut milk yogurt, it's good. There is rice milk yogurt out there, but it's hard to find. DON'T give a child soy unless it's fermented. Michael

Hi I find Cunningham to be pretty authoritative. My son did not do too well either and he's had it for a long time, though not as long as yours. I think the second IVIG is worth it but we are waiting at this point before doing so. DS10 has been less bad lately. I'll post when I have more info on what I am doing. Not sure when. Cryptic, I know. Michael

Link here. http://online.wsj.com/article/SB10001424052748703989304575503893436045302.html?mod=WSJ_LifeStyle_LeadStoryNA Notice the ten-year old boy who suddenly had major anxiety and his mom had to go with him to school, etc. Notice the usual "cognitive behavioral therapy" is the answer.

Hi, because of his age and similar issues, you might want to talk via PM with Nancy D. She's been there and back. Good luck, if I get anywhere with what I'm doing, I'll let you know. Michael

Anyway, to get to the point, she asked me for doctors that she could call to consult with. I'm perusing the boards and it seems like Latimer, Kovacevic, Trifiletti, and Dr. Infante would all be good. I don't know which to suggest first, although I'm leaning to the latter since he is closest to us geographically and he came highly recommended by someone on the board. (Not that the others aren't highly recommended!) Dr Bouboulis in Connecticut is also a good bet. I would say Kovacevic as he has done a lot of phone consults and cuts to the quick. He's treated a lot of kids.

Hello! It's rather outrageous to assume I was "bashing" anyone. I certainly appreciate all the natural methods you used on your son, your approach is sound. My son has been mostly non responsive to antibiotics. I certainly agree most if not all medication does ZERO for tics and is not worth it. But it is NOT outrageous to assume that for public education reasons and for just plain naivete, that parents would not be familiar with PANDAS and that doctors would not even bring it up. Even some place like Duke. There are people who know PANDAS in the medical field and there are the rest of them. Only in recent years and I mean VERY recent years, thanks in part to people here, has PANDAS even entered vocabularies in so called sophisticated urban areas. One of the top neuropsychs in my area when I mentioned PANDAS had to think about what condition that was and its symptoms. It's not exactly high priority in these circles and that's what this forum is a bout. As Nevergiveup said, no strep titers and a healthy immune system do not mean no PANDAS. It sounds like except for the tics, your son is fortunate to not suffer from comorbid conditions. Most of us on this forum would LOVE that to be the case. I would like to see my son's tics "wax and wane". The vocal ones have been around so long I was too stupid to acknowledge their existence and I consider myself educated and aware. I just thought he was being silly. What did I know? When I watched the Tourette's tape, I wanted them all to get the children help somehow but I didn't see anyone say, we checked for PANDAS. Why? BEcause Mystery Diagnosis which just did PANDAS didn't point them in that direction. Or the parents' doctors didn't point them. I know it's not what the show was about, but it made me wonder if deep brain surgery on that other child could have been averted. COULD have been. You say "The young man Jonah is tic free" No he isn't, he is 90 percent improved. And how often will he go in to have his voltage checked? His fight/flight responses reminded me of Saving Sammy. Did they try high dose antibiotics? I question any doctor who diagnoses Tourette's in a child of 3, frankly, they could just as easily diagnose PANDAS in a three-year old. Not very common and it's just as easy to diagnose a three year old with schizophrenia or bipolar disorder. My son's shrink suspects the tics are just Tourette's (just Tourette's, can you imagine?) but I don't buy it, I say PANDAS and so do Cunningham tests. I'm sorry if I ticced you off. (ok, bad pun) But in the end, I echo what Nevergiveup said in her post to you. Keep up the good work, wish more parents knew what to do.

Hi Emerson Had to chime in a bit here, you said, I wonder why so many kids with Tourette's (& not P.A.N.D.A.S.) also have ADHD, OCD, & anxiety/emotional issues. Um... I believe most PANDAS kids DO have all of those things or two thirds of them. My son has major ADHD, less but a little OCD and major anxiety emotional issues. I believe it's not uncommon, if you look at our list of symptoms Buster laid out some time ago. That's why I started screaming PANDAS because all of those kids needed to at least be tested before their parents and MDs started jumping to conclusions. Best, Michael

PANDAS PANDAS PANDAS PANDAS PANDAS, COULDN'T THEY AT LEAST CHECK AND DO SOME HOMEWORK????? Deep brain stimulation surgery, Jeez, is he going to have voltage checks the rest of his life? Why do they talk to one doctor? Laziness? Budget? All very sad. That Queens boy ended up at a school my son may end up going to. I just wish MD's weren't so clueless. All of them said MEDS were no help for tics. Period.

Try Zija, it tastes pretty good. drinklifein.com Not particularly cheap but you can use 1/4 packet a day to good effect. Lots of other good thing in Zija.

Hi, When I chatted with Dr K a while back, he said no to this one. FYI

It is my understanding that immunotherapy stimulates the immune system which can make autoimmune diseases (like PANDAS) worse. The World Health Organization released a statement that people with autoimmune diseases should be careful with allergy shots or immunotherapy. I do not think they would necessarily be bad for someone with immunedeficiency but not so great for someone with an autoimmune or overactive immune system. Hi! Yeah, I talked to Dr K about this a couple months back and he said allergy shots are a no-no, any kind of allergy shots. They can cause flare ups of symptoms. Wouldn't do any more, if I were you. My son had LDA shots and they certainly did not help Pandas. They stopped helping allergies too. So we stopped. Michael

I agree, especially in light of the fact that they have been feeding livestock abx as a regular part of their diet for years... Oh, Peglem and that's NOT a good idea. Don't get me started on that! Of course, who but a dummy feeds corn to cows? THEY DIE! Michael But I would not dismiss this story outright. If it's a warning, let it warn.

http://www.guardian.co.uk/society/2010/aug/12/the-end-of-antibiotics-health-infections

RE your PANDAS boy not wanting to take the meds. Have you considered paying your PANDAS child for taking meds? May a dollar a day (or dose)? Yes. He won't. We've paid him to go to school. We've paid him for blood tests. We do all that stuff. He's hit bottom. We are going to a healer. We'll keep you posted.