fuelforall

1. make sure it is high quality, many of the folks here have good ones. 2. Start slow- it may cause stomach problems if you ramp up too quickly. Build up to a hefty amount but don't just throw it at him. Too many probiotics are prophylactic in nature, per Dr. Mcbride. You need to make sure you get high quality ones but bump up gradually as the gut flora needs to heal.

Natasha Campbell-Mcbride has a system starting from scratch with kids. Everyone google her. Someone in my area is practicing nutrition for kids and moms using her system, which is linked of course to Specific Carbohydrate Diet. Based on what I've read on this blog, moms here have had success with it, radical though it may be. It means going back to "beef tea." (Sorry, Emerson, there's just got to be meat if you or anyone are going to thrive. Somehow, some way. Yes to the veggies, no to grains, legumes and dairy) Try to eat a little rare meat every day (not cheap stuff) and get your enzymes. ) A side note: someone I know sez her husband is 21 years a vegan. He is now suffering from a severe metabolic disorder. No real testing has been done on the long term effects of going vegan.

Hi, Grace, A couple of articles you might find interesting are here. (others may find it interesting as well) Stephanie, perhaps? The doctor in this article says kids should stay away from nuts and raw foods because their stomachs are so messed up. http://www.westonaprice.org/modern-diseases/digestive-disorders/1955-food-allergies.html http://www.westonaprice.org/childrens-health/1379-gaps.html With all the variations on Paleo, you have to find what fits you and your children. What a pity he can't eat eggs. Load on the saturated and monounsaturated fats, stay away from polyunsaturated ones. Get him to eat more meat to feel full, don't sweat the saturated fat, but do try to find grass-fed meats. Omegamaine makes the best fish oils in terms of potency. It doesn't taste fishy either. Allow small amounts of rice and potatoes. Make hearty soups. DON'T boost your son's seratonin through cheap carbs. It's temporary anyway, like caffeine (which I still have daily). The best thing I can recommend to normalize seratonin is a product called Zija. They don't say that's what Zija does when you look it up but that is what happens- i can attest to that. My son should take more of it, but despite its good taste, he is not fond of it. It's also a multi powered vitamin, mineral supplement derived from the moringa tree. It also has healing properties but that's another story. Gotta go home and try making Paleo pizza from almond meal flour. No cheese, natch. I do indulge mildly in dairy but no grains, legumes ever, if possible. Oh, yes, if you don't already know this, coconut, coconut, coconut. Milk, yogurt, even ice cream (So Delicious) and cook in cans of coconut milk. Extra virgin coconut oil. Sorry for the lecture. Good luck, I know how tough it is. Michael

From my post on the Pandas blog on leaky gut I have been eating a Paleo diet for a month or so now. This study may be a cue for many of you with children who have adhd. Getting rid of grains, dairy and legumes is a good policy for gut health. The study suggests IGG sensitivity RAST tests are meaningless and that the only real test is elimination. These are some serious numbers here! That's a lot of kids whose ADHD went away with the extreme diet change! Oh, since you can't get the full text, I'll quote from someone who did. The restrictive diet that eliminated symptoms was composed of meat, veggies, pears and water. And for the lone mostly harmless (allergen wise) starch.... rice. (arguable the kids could do even better without rice) http://www.thelancet...2227-1/abstract

Instead we headed off to a Biomed/Dan doctor (who prescribes antibiotics) and found he had a leaky gut (strep, staph etc) and a bunch of vit/mineral deficiencies. To support him, as a family we've been moving increasingly towards a Paleo diet over the past several months - We're not quite there because we still have some grains but much reduced (but definately no gluten and no casein). Along with the gut healing diet he has been getting supplements, probiotics, enzymes. I can say we are all really healthy! But better yet my ds says he feels better, is much more focussed, concentrates better, skin cleared up, looks well, he's happier and comes out of his cave, talks with me and jokes and is giving lots of eye contact. His psychologist says he's never seen him so amenable and talkative. So something is working! I think this is an underdiagnosed condition. If people are struggling on the diet, increase the eggs and saturated fats. Our brain requires 70 percent fats, it gets it from nutrition. I really wish more people on this forum would read this post so I hope this bump helps.

I have been eating a Paleo diet for a month or so now. This study may be a cue for many of you with children who have adhd. Getting rid of grains, dairy and legumes is a good policy for gut health. The study suggests IGG sensitivity RAST tests are meaningless and that the only real test is elimination. These are some serious numbers here! That's a lot of kids whose ADHD went away with the extreme diet change! Oh, since you can't get the full text, I'll quote from someone who did. The restrictive diet that eliminated symptoms was composed of meat, veggies, pears and water. And for the lone mostly harmless starch.... rice. (arguable the kids could do even better without rice) http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2810%2962227-1/abstract

The question is, does DH think you're nuts!? Do what you have to do, be a warrior mom. Go out there and do the bloodwork. I'm doing it with my four year old. It's the right thing to do. Michael

Get off soy and onto as much coconut as you can find. Soy protein isolate is not good. They've found hexane in it. No small amount is good for people with issues like this. Do think about getting back on meat if you can. Grass-fed.

Be vewy careful. (in the words of Elmer Fudd) Google Celebrex and side effects. Just sayin'.

Hm, no dads heard from here? I thought I'd wait a while but it looks like no dice. FYI, I am the one who pushes PANDAS remedies, mainstream and alternative in my apartment. I go to the doctor's appointments (except the shrink) and I go to the labs. If it were up to my wife, she would be throwing at the kids every drug psychiatrists tell her to throw. Actually she did throw a few of them. Except for one drug for controlling tics, none of them worked. I sounded the alarm when my second adopted child started showing symptoms. Now he's getting treatment for strep, et al. Because unless you push, pediatricians won't bother to check for anything. Yes, husbands are needy but a lot of wives are too. Not all women are programmed to be the ones kids lean on. A lot of women are like men: grownup babies who have been pampered and can't take the heat when it shows up. Here's what they expected: "But I thought babies sleep all day and then when they turn five, they start being such nice children and you only have to worry about them when they become surly teens...." You know... those kind of parents. Life throws you curve balls. You gotta deal. It would be nice if one weren't so suffused in negativity around my place. Don't know how much of that happens with you folks but it looks like it does. Thanks for letting me vent a little. I know we all need it.

Also, I spoke to a chiropractor in my area who I've used for my own neck pain, thinking chiropractic may benefit my Pandas 8 yr old son. He was not familiar with Pandas but I explained the basic theory and basal ganglia connection... he would do nutition/supplement recommendation as well as chiropractic adjustment (and cranial). Should it make a difference if he does not have prior Pandas knowledge? Ange, yes, I would say find a neurosensory practitioner of chiropracting. We really like ours in NYC. She also does cranial sacral which I also think is crucial. For this, I don't think PANDAS knowledge is important, just getting the gist of what's going on and working from there. I can give you the Brooklyn woman's name but she may know someone closer to you. Also, for comprehensive testing, see Dr. Bouboulis in Connecticut. He knows what questions to ask, he knows what to order. And he takes insurance.

I know that has absolutely not helped you decided LOL! I will say this, my chiropractor firmly believes that anyone with autoimmune disease needs to be gluten free. based on what I have read, there is strong argument for trying to keep your kids paleo. robbwolf.com This means, meats, poultry, seafood, fruit, veggies, nuts. No processed food. Lots of coconut oil and olive oil. Michael

VICKI YOU NEED THAT SUPPLEMENT I MENTIONED! PM ME if YOU AREN'T SURE WHAT IT IS! MICHAEL

Michael good to hear from you. Adopt the Paleo diet for a month, see how you feel. There is a large percentage of the population that is sensitive to gluten but is not celiac per se. I had to give up on the euro allergy stuff, it just wasn't making any progress. Four rounds..... you know. Listen, be careful about nuts. If you have autoimmune issues, Robb Wolf says you may need to be careful with them, that patients are more sensitive to them than someone like me. Coconut is technically not a nut. I read the cans of coconut milk are more filled with the fats needed than the cartons of coconut milk are so tank up! Good for you on the low/no sugar front. I am reducing now, obviously, because of no grain diet I am on. I am extremely low dairy and low legumes, and I expect to be off legumes soon. Stock up on avocados for good fat. And of course coconut products. For those reading this post, this is a good time to say it again. Buy and eat coconut oil! NOW!!!!!!! I need to invest in a coconut oil processing plant somewhere! Michael

Radical nutrition changes should be tried. Paleo diet is severe for autoimmune disorders. No eggs, tomatoes, eggplant, potatoes, peppers, nuts. Then of course no legumes, grains and dairy. That leaves you with coconut milk products, meat, fruit, veggies. No, my kids haven't tried it yet either. I'm able to do the diet but I can have eggs, etc because I don't have an autoimmune disorder. More later.

I'm glad to hear things are better. Recovey has to start somewhere and can take quite awhile.Even if it's baby steps, those smaller triumphs is what helps keep the hope and fight alive. YEAH THE TICS ARE BAD RIGHT NOW. NOT AN OCD PANDAS CASE. THAT"S WHY WE HAVE TO LEAVE HIM ON RISPERDAL. FOR TIC MANAGEMENT. Now I feel like you're teasing us:) What treatment? DON'T WANT TO GET HOPES UP SO DON'T WANT TO JINX ANYTHING. Okay, I think I know which one this is:) CLUE; IT'S A POWDER AND IT TASTED GOOD I need to look into coconut oil. Someone else recently mentioned it for overly dry skin to apply directly to skin. EAT IT. LOTS OF IT. BUT IT IS GOOD FOR THE SKIN.

Hello, all, I have posted very little in the past six months or so but I wanted to weigh in with some information that may or may not be helpful. I will have suggestions but of course, they can be taken with a grain of salt. My dS10 is doing much better but he is of course not completely well. I do feel his PANDAS is in remission though and much of his remaining behavior is learned/habit. He has other variables in his condition that may contribute to this. But he goes to school every day, he does homework, there is no delusional behavior as there was before. IEPs are being changed, teachers and therapists are very pleased, they like what he is doing, how hard he is working compared to last year. I actually feel like I can have a life now. At least until middle school starts. To recall, my son spent this time last year in the psych ward. Many of you know about that. It was a horrible useless experience. He gets angry when the subject comes up, we try not to let it come up. He got HD IVIG very quickly and made no improvements for three months. He was delusional, oppositional, still Pandas. Come July, he got a new drug and improvements hit- it could easily have been the IVIG kicking in as well. The improvements were temporary, lasting a few weeks, as they always are with a drug that succeeds for a stretch. In August, through word of mouth, we began to see a healer. I cannot speak for her but when she met him, I could tell her reaction was, “Sheesh, I’m good with things like cancer and AIDS but kids with brain stuff going on, whew.” And of course we were her first PANDAS client. She recommended another specific treatment from another healer (who said, "PANDAS, what the hey is that?" then got to work on it) which we are doing now and will continue to do for some months. We have seen only one major response to this treatment and that is an increase in appetite, along with a more diverse palate. (The other healer made it clear my son needs to be treated like an adult- so much stuff going on!) This new improved palate helps as the healer is a nutritionist with strong ideas about diet. She believes in electro therapy (and when we were going regularly, my son always came home feeling better) - and she is very anti GRAIN. And dairy. And soy. Just try to get my son to cooperate here, he did gluten free for a year or so back when the word cooperation was in his vocabulary and never wants to return to it. BUT as I said, he gets more protein, less starch, is known to pig out on cooked spinach (it took the place of broccoli as favorite veggie) and he can actually go a week without pestering for mac and cheese. Yep, the healer hates grains. Gluten is worst but all grains cause… you guessed it, inflammation. She also believes in a certain supplement and we have a lot of anecdotal evidence of its health conveying powers. I will not try to sell anyone on it but if you PM me, I’m happy to tell you. I will say that I have put my family on it (I think DS10 is finally beginning to feel benefits) and I can say I certainly feel better when I’m on it. Given the stress of DS10’s behavior, along with DS4’s issues (continuing high strep titers- we plan a consult soon) I can use all the help I can get, preferably not pharmaceutical. I also reduced consumption of grains and dairy. Did a lot of violating over the holidays but just went on a grain free diet for one month. OK, the grain free thing: A friend sent me a link which I have looked over several times. It is yours for study, there is a lot of feedback given to the (guest) blogger who has written a book. I believe there are 937 comments! http://www.fourhourworkweek.com/blog/2010/09/19/paleo-diet-solution/ Notice the talk about the link between lectins and autoimmune conditions. Note that it says, try it 30 days, see what happens. This is why I am going grain free. I have leaky gut syndrome myself. It’s true about the opiates in gluten and such but I have passed withdrawal phase and now just kinda say, “shucks” when I can’t have something I once loved. I eat more sardines, salmon and mercury free tuna in cans. And nuts. Oh, do I eat nuts! So I will try to blog again in the future but my main tip is this: get yourself or your children off of grains, if you can. Experiment. Try it for a week, see how they act. I think Dr Bock and DAN doctors call this “specific carbohydrate diet” or some variation of it. Limit legumes ( yes, that’s peanut butter, do nut butters) and no dairy if possible. Also, GIVE THEM SEVERAL TEASPOONS OF EXTRA VIRGIN COCONUT OIL every day. http://www.NaturalNews.com/030971_coconut_brain_function.html http://www.naturalnews.com/030919_coconut_oil_Alzheimers.html Some guy named Alan Graham online tends to rant a bit much but he is right here when he writes: "I cured my Crohn's by taking a broad spectrum of anti- oxidants and immune/digestion enhancing Supplements! Moreover, I ate foods the medicos told me to avoid, like 6 or 8 poached eggs daily... good for Lupus & joint-pain, because of the high sulfur & Omega-3 Fatty-Acids, EPA & DHA like those found in fish. Also, I consumed Saturated Fats like real Butter & Coconut Oil... a couple of Butter's arcane, shorter-chained fatty-acids, are great for joint inflammation! The anti-inflammatory characteristics of the magical MCT's found in Coconut oil explains why Polynesians who eat the traditional diet don't appear to get Lupus & Arthritis..." {PERSONAL NOTE: I CAN’T GEY MY SON TO DO THIS COCONUT OIL BUSINESS SO IF YOU CAN’T, don’t sweat it.} Try to sneak it in foods, like pasta sauce or something. I put em in my eggs. Dr Bock recommended coconut oil two years ago, now I'm listening! Addendum: don't worry, they didn't find a link between eggs and cholesterol levels. Honest. Google it. Keep the eggs runny if you can. Also, Omegamaine makes what I believe is THE most powerful omega-3 liquid on the market. No fishy taste either. I mix it with the afore mentioned supplement. Holy moley, just check out the numbers! http://www.mainenaturalhealth.com/omega3.php Let’s see… oh yes, both children have begun seeing a pediatric chiropractor who is quite good and they seem to enjoy their treatments. LOTS of sensory issues. I will talk more about electro therapy as I experiment. No, it’s not scary, really. I’ve done it on myself too and it feels TERRIFIC, mentally and physically. I hope you all can find something useful here. I want to provide information as my son is improving on some levels. BTW, to Stephanie Weeks,: my son won’t swallow OLE(olive leaf extract) because it smells and he doesn’t like capsules crushed up in liquids, so I can’t get much help there. (Stephanie is already aware of what we are doing in my house.) Be brave everyone, may all exacerbations be short and may every experiment you try on behalf of your child be successful. We deserve happy families. Michael

Oo, I'm seeing some things I don't like in these exchanges Gallstone removal, for example. So sorry Momcap had to go through that! EA, listen. Take a look at this. Use it or not. http://www.fourhourworkweek.com/blog/2010/09/19/paleo-diet-solution/ The gist of it is, don't just get rid of gluten. Get rid of all grains, maybe re introduce rice and corn in 30 days. Eat dairy and legumes sparsely, lentils are best- presoak all of your legumes. Eat fish, some kind of meat if you can (chicken, turkey). I think you may be meatless though. Eat nuts, veggies, fruit. I can't do it with my kids but I am doing it myself. Many grains have opiates in them, we get addicted. We need to get off a while and see how we feel. Good luck. I just started but a couple times the past week, I took hidden grains and that screwed me up. You HAVE to get totally off grains and gluten. What to eat: lots coconut products and avocados. Extra virgin coconut oil.

The highest powered omega 3 I have seen on the market is omegamaine's liquid products. $35 a bottle. But boy are they packed!

http://www.delcotimes.com/articles/2010/11/29/news/doc4cf32213b3504532381215.txt?viewmode=fullstory You got it. Anxiety and OCD.

Middle level Pandas. My son scored lower but he was still in the range.

[Hi, I found the link to the interview with Dr Cunningham. http://www.latitudes.org/forums/index.php?showtopic=9361&st=0&p=78479&hl=cunningham&fromsearch=1entry78479

Hope this is helpful.

Thanks, Michael! We've actually been on OLE for a while now. I've been wondering if we should either take a break from it or up the dose. I'm not quite sure how to compare it to Stephanie's recommended strength. It's Solgar's brand & contains: Standardized OLE (leaf) oleuropein 14mg (6%)- 225mg Raw olive powder (leaf) - 225mg Based on what she's saying, the oleuropein is too low. Need at least 20 percent. good luck!

Grace You were right about soy, IMHO. I told Emerson so. For the tics, it might worth a try to give OLE and see if tics diminish. That appears to be the main benefit. See other posts by Stephanie on OLE. Michael