Frank_Sm1th

Nick, Could it have been a migraine aura? Frank

Thanks for the input... we'll proceed with moderation. Screens are such a part of the modern world that we need 'em so much-- for work, play, news, learnining, this forum, and more. Marie, we've got the crts set to the highest refresh rates; the whole family can tell on sight when anything flickers too much. I have the most tolerance of low quality monitors and am not actually bothered by flicker even though I can see it. Our next monitor will be an lcd, but they're still awful expensive. Thankfully, metal poisoning doesn't seem to be part of the picture here. Frank

My older son, 10, shows some real talent with computers. However, after a couple of hours he begins picking his lips and becomes antisocial. He used to get coughing and other tics from screens, but doesn't anymore. I'm wondering if he can become immune to the screens' effects with enough exposure; people develop tolerances for all sorts of things. Why not screens? I don't think we're playing with fire here; his screen-caused tics were never very severe. He seems to be addressing his post-screen irritability so that he can be allowed more computer time. Anyone have any actual experience with this? Frank

Gina, My son (10) takes Country Life Calcium-Magnesium sometimes. It's hypoallergenic and vegetarian. They're big tablets and hard for a kid to swallow, though. They also are unpleasant to chew, so we ground 'em up with a mortar & pestle and put the powder in veggie caps. Rather than give lots of supplements, we've been concentrating on better absorption. Digestive enzymes work well for us. Frank

My older son's tics, etc. increased with flax seed and he thrives with Carlson's cod liver oil. All fish disagrees with my younger son, but he, too, thrives on the cod liver oil. Frank

Hi all- That enzyme board is indeed awsome; I've been following it for about a month now and it helps us fine-tune what I learned from the book. She also has a similar book on enzymes which I saw at our local health food & vitamin store. Since we began the enzymes a coupla mos. ago, we've reduced the supplements I've been giving my older son. Frank

Alison- Sorry, missed your post of 24 Feb. I get very busy sometimes.. My son's only been on the amoxicillin for about ½ year. We discovered the PANDAS about 2 years ago and were very reluctant to use antibiotics unless he actually tested positive for strep. Anyway, he caught the sniffles a couple of weeks ago (virus) and it didn't seem to affect his behavior at all. We were afraid he might get tics, OCD, etc., but he didn't. Frank

Dara' One reason my wife insists on home-schooling our DS 10 is the cleaning chemicals in his old school caused bad behavior and tics. All kinds of artificial and even natural aromas can set people off. Also, just plain stress and pressure can cause tics. Frank

Susanna- She prefers ColdCalm. It's made by either Boiron or B&T, not sure which. Frank

Susanna- I would give him echinacea & goldenseal together, or maybe just goldenseal. My wife won't let me give our PANDAS son any, though, because of the "immune boosting" reputation of echinacea. She thinks it might overstimulate his antibodies to attack the basal ganglia. I say who knows? The cold he has is already stimulating his immune system and that can cause tics and OCD etc. If you want to dry him up, try RhinoCort; it's not as full of artificiials and chemicals as most drug store stuff and it works, usually in a day or so. I think it's meant more for allergies and chronic sinus running. My wife gives our son homeopathy which sometimes works. Frank

Hi, It's always among the slower boards/sites I visit, but I haven't noticed any unusual slowness lately. Frank

I don't know... PANDAS is by definition a pediatric disorder. We look forward to our son losing some of his symptoms by adulthood. It appears that many do. We've worried about what if he doesn't outgrow some of this stuff? I think Claire's advice about the throat culture is important because you want to know the cause of your symptoms.. right? The doctor who does the strep test may also want to do an A.S.O. titer to measure the anti-strep antibodies in your blood. It can be tough finding a doctor who's competent to deal with PANDAS if that's what you have. Frank

Spartan- Do you have other symptoms of PANDAS such as OCD or ADD or ADHD or emotional lability? They can be triggered by strep antibodies. You might want to check out a site or 2: http://intramural.nimh.nih.gov/research/pd...ublications.htm http://brain.hastypastry.net/forums/forumd...aysprune=&f=196 http://groups.yahoo.com/group/EnzymesandAu...yguid=161718866 That last link is a large group that's learning how enzymes affect health and behavior. Most good health food stores have digestive enzymes and I think it's making a big fast improvement in my son's health. He has food sensitivities and strongly reacts to food colors and certain preservatives. These enzymes help him break down the foods properly and help eliminate toxins. An enzyme product that has a wide variety of different enzymes in it should help tackle whatever the specific issues are. Here's another link: http://groups.yahoo.com/group/PANDAS_Suppo...yguid=161718866 It's mostly folks who are trying to help their younger kids. Much of the discussion compares antibiotic results and there's not much mention of diet or natural help. Frank

Yeah, stress'll do it. So will lotsa things... We've found supplements help my 10 yr old with his PANDAS, but the biggest single help is being on antibiotics full-time. We've just begun giving him digestive enzymes and even though it's only been a couple of weeks and it's hard to be objective, I think they are making a significant difference for the better. With your respiratory sensitivities, I hope you have a good air cleaning system at home and keep everything free of dust. Dust mites, pollen and such can aggravate tics and other PANDAS symptoms. Frank PS-- diet is critical...are you aware of the Feingold program? feingold.org

Hi Claire, We don't use Houston's because I haven't seen them locally, but certainly would from what I read. Locally, we've found Pioneer vegetarian digestive enzymes and Time4Health Advanced Digestive Enzyme. They both seem to be making a real difference in attention, etc. It's hard to be objective, since we've only been giving them for about 2 weeks and started with very small doses just in case. Have you seen the Yahoo "EnzymesandAutism" board? Frank

For digestive enzymes, I would buy direct from Houston Nutraceuticals if I had any problem finding an effective blend locally. Frank

Alison- My son is on amoxicillin full time and it works. I worry about whether the antibiotic reaches every place in the body that strep can hide. For example, I've read about it lurking in pitted tonsils. About 2 yrs ago we figured out he has PANDAS and some sensitivities (salicylates, food colors, gasoline & chemical odors, electronic screens) that trigger the tics and bad behaviors. He got antibiotics when he got strep throat, but each time he got strep the tics, emotional lability, etc. was worse. In August, he got strep G (which is usually harmless and totally syptomless in most people) and got his usual tics, poor concentration, etc. so we put him on antibiotics permanently so he won't suffer from strep. Or PANDAS. We can't guess at his long range future, but he's improved a long way in 2 years and we're learning day by day. Frank

I find all the calcium, magnesium, zinc, Bs, EFAs, etc we need (and very high quality) in the Albany, NY area. Toronto's gotta be 20 times bigger. The only thing we get mail-order is Freeda Vitalets. You might get more bang for your buck by using digestive enzymes; we just began and it looks like we may have to reduce some of the supplements. Frank

Hello Elise- Like you, I was opposed to treating my DS, 10, with antibiotics. But I think the amoxicillin does more to help than any other treatment for PANDAS. There are natural things that kill strep. Garlic is the one I've been consistant with, raw and cooked. I slice up and boil a few cloves of garlic around bedtime and we eat them; he also drinks the water it boiled in, swishing, gargling and swallowing it. Hopefully this kills strep that may lurk in his mouth/gums, throat. We eat fairly natural foods; Feingold was a big step for us 2 years ago; it worked so well we've mostly stuck to it. The supplements calcium, magnesium, zinc , EFAs, B vits etc. help w/tics & OCD a lot, but we just started on digestive enzymes while I read "Enzymes For Autism" and they're definately helping, but I think we now have to reduce some of the supplements. I wonder which ones. We're afraid of strengthening his immune system to attack strep because those antibodies will also attack his basal ganglia. So, the way I see it, the question is: what kills strep and how? If it provokes him to produce anti-strep antibodies, how can we protect his brain from those antibodies? I'm not a doctor, so this gets way over my head fast. Garlic is kills strep. Now that he's using digestive enzymes, we'll be looking for more strep killers and will keep a close eye on this thread. Good luck, Frank

art- I found a couple of good lists a couple of years ago just by doing a Google search. Lately, we've been re-introducing salicylates into our sons' diets and are finding that digestive enzymes can help the body cope with salicylates. Read "Enzymes For Autism" if you want to learn more or visit Houston Neutraceuticals' website. The Feingold book "Why Can't My Child Behave?" was our introduction to the Feingold program. The program works well for us, except for me because I can eat salicylates all day long and not suffer. But with packaged food, I prefer Feingold approved food because it contains no artificial colors, BHT, BHA, TBHQ or such; some of those bother me. The artificial colors and preservatives can be more harmful than salicylates. Some chemicals like the propionate in bread can make people irritable and aggressive. Good luck, Frank

Jane Brody wrote The New York Times Guide to Personal Health which I threw out a few years ago, not wanting anyone to rely on anything so useless. That book NEVER had ANYTHING I EVER tried to look up in it! EVER! Now I see she's written The New York Times Book of Alternative Medicine and I'm extremely skeptical whether that amounts to anything, either. I'm not so impressed by the Times' "stature" and can't imagine them being beyond the influence of the drug industry. Frank

Hi all: We find echinacea and goldenseal work well for colds, especially echinacea and goldenseal root. BUT we don't give it to our 10 yr. old DS w/PANDAS because they stimulate the immune system. Since it's the immune system's antibodies that attack the basal ganglia and cause the neuro problems, we've decided to use homeopathy (sometimes it works, but there are different homeopathic meds and different colds and it's hard to match them to each other) and RhinoCort (sp?) and zinc. If anyone finds out if echinacea or goldenseal's immune boost aggravates PANDAS symptoms (tics & OCD) I would not be surprised. Frank

Debbie- I don't really test them too well in the house, but when I need to use paint thinner, etc. in the the art/signshop addition, I swipe a purifier or two from the house and use them out in the addition. They can only do so much and sometimes I have to open the windows and door, too. We use Honeywell and Hunter, but really have no preference as long as it has a charcoal filter and a major manufacturer is making realistic claims. Also, we use Feingold approved cleansers. We don't worry about formaldhyde from construction materials because our home and studio are 70 and 40 years old and we have no carpets. Sometimes when we get new things we air them out after opening the packaging. You never know when or where organic vapors are gonna get ya. Thank God I'm not sensitive, but they bother my wife and my older son even gets migraines at gas stations. Good luck, Frank

Debbie- The charcoal part of air filters is what removes the organic chemical vapors from the air. We rely on them greatly in our home, but the first thing we did (the DAY we moved in!) was remove the carpeting. Frank

Claire- The echinacea warnings come from the folks at our local health food store and our pediatrician when I mention my son's immune system being eager to attack strep germs, but not stopping short of attacking his basal ganglia. So, to fight the sniffles this winter, I'd like to give him golden seal. But my wife will probably prevail and give him homeopathy which often works. Frank