kim

Daniel, Have you ever looked at Juice Plus, as a multi vit? I think someone here, not long ago, posted that they use it. I thought that looked like a really interesting, all natural vitamin, but I couldn't find the ingredients and % of values on their web site. It's so hard to comment on a good multi in general. An example, for my youngest son, I wouldn't want more than about 1 mg. of copper, right now, then you have to decide if you want iron or not. We also need more B's than what most multi's provide. I hope people keep posting these links though, for others to consider. It would be nice to have a thread, with everyones links and opinions, in one place. I'm looking to switch to a multi, and add zinc, mag and calcium, Vit C, and few other's individually too. By using a lesser amount of Bonnie's vits, my boys are not getting even the RDA of some things, like vit A, which I think is really important. As you pointed out, the amount of supplements that need to be taken, is a problem, but we just have to deal with it around here. With two boys, with different needs, I'm constantly putting out something, for someone to take. BTW, I recently switched internet providers. My email has changed, so I didn't get yours! Sorry. I will send you something, so you will have my new address.

Hudsonmom, I read just recently, by a poster, don't have any articles regarding it, that candle smoke can contain mercury. They also said, that those little green tree car fresheners contain carcinogens. I have personally read some things, about some pretty yucky ingredients in air freshners. I know it was on the news for a while, about the "new car smell," and the chemicals that create it, being dangerous to your health. Scents, in general have been said to be a trigger for some. My youngest son used to tic in Malls. I thought it was the lights. He told me, it was the smell. He has also made this remark about hospitals.

Carolyn, Read here under Excitotoxins. http://www.autismanswer.com/articles/yasko...citotoxins.html That whole glutamine/glutamate thing is confusing for me. Right off hand, you would think "no way!" but maybe there is a side we're missing? It's been a while since I read that article. Let me know what you think

Hey, this conjures up all kinds of questions! #1. Can I get a clone of me, so the one without the flu, could get some rest? Could I just keep her in the closet, and get her out, when I needed her? I sure wouldn't want to try to live with her. A little genetic engineering, to correct some things I'd like to change, would probably cost extra, hau? #2. Why do they want to clone anyway? Are the bulls on strike? #3. If they have this capability, really, can't they stop a cancer cell from replicating? #5, Would this put the farmers out of work, or would they just go and buy a carton of cows, to raise? #6. If they can do this, sure as heck, someone could give us a good answer on how much calcium to give with magnesium!

It's interesting that you mention the calcium ratio Daniel. I just looked at this site yesterday, trying to see if there were any remarks regarding this. I see Mrs. D has a new post this morning, under the magnesium thread. http://neurotalk.psychcentral.com/forumdisplay.php?f=49 I have looked for articles to support the 2:1 ratio, and there are many that suggest it, but it doesn't look like there is anything totally convincing. I have read the same thing, about the lack of magnesium, being the culprit with bone weakness. The kidney stone risk, is a bit concerning to me. Anyway, we are using Citracal Petites with Vitamin D. One website claimed that they are lead free. It's calcium citrate.

Carolyn, The only thing that we ever successfully removed, was peanut butter. This was a big deal, since it's one of the 2 "meals" that he eats. He did not add any new foods, with the removal. Peanuts were something that he showed a high # for with IgG testing. After, about 2-3 months, we added it back in, with enzymes. No reaction, good or bad. He will sort of rotate foods on his own too. He might crave yogurt, then won't touch it.

Carolyn, I rejoice in your new foods, right along with you! Yes! to the zucchinie.....but I have to say, shrimp (I believe) is high in copper, and can carry some contaminant...I don't think, it's mercury, but I can't remember what it is. My oldest son adores sea food, and I'm always trying to weigh, what I should let him, have and what I shouldn't. I was reading an article today, where one State included lobster in their mercury warnings. Uggggh. This article does not mention shrimp specifically, but, anymore, if it lives in the water, I get nervous. Excerpts from; http://www.chicagotribune.com/features/hea...,1,831137.story and The above article makes reference to Minamata. Here is an excerpt from an article on that fiasco; http://www.american.edu/TED/MINAMATA.HTM On a brighter note, I did find a site on the web, that had some kind of organic shrimp. It was supposed to be contaminant free. If you really like it, that might be worth checking into. I think it was only $1,000.00 for a bag of fifty.

robinjax, I had read your post this morning, and wanted to give you the links for a product called Natural Calm. Then I see, Patty and Cum Passus discussing the same thing on another thread. http://www.shopping.com/xDN?SEO=nutrition-...KW=natural+calm http://www.thegoodsleepstore.com/insomnia_...s_quickshop.htm If you decide to use this product, you may want to use, at least a good multivitamin too. Something with at a least a little calcuim, to help with the mag. absorbtion. If you are able to use it, long term, I think you will want to find a form of calcium to supplement with also. The reason that I thought it might be helpful, is because it's made to be dissolved in water, and should be very easy to disguise in juice. I have not used it, but have read many posts, where it was helpful to someones child. It comes in a raspberry flavor and also lemon. Magnesium is usually very calming. It very well, may help your son sleep, if given, maybe an hour before bedtime. You can also split it up during the day. If your son tends to have melt downs, at any particular time, you might want to schedule a dose for around that time. I had recently told my oldest son, that I wanted him to taper off of his supplements for a few days. We have been trying to control an acid reflux type of thing. He said, "I'll back off everything, but the mag. taurate, I have to have that." He also, does not like to take mag. during the day, as he says, it makes him too tired. It's always good, to hear direct feedback from your child. We started a probiotic again, and I bought some aloe vera water, and had him start a minimal amt. of digestive enzymes. Two days later, no acid problem. He is taking all of his supplements again. Don't have any idea, what helped so quickly???? Sorry to get off topic. Anyway, I wanted to ask, if you would share what types of foods that your son will eat? Is it crackers, pretzils, potatoes, french fries by any chance (carb. foods)? Or smooth foods, like pudding, yogurt (dairy). I think with the limited eaters, a big help, is to know if it's a sensory problem, or if candida overgrowth, may be dictating food choices. Does he crave sweets?

Bump

mrsdoubtfyre/Chemar/Cum Passus /Sunshine, I would like to add, that this is something I have noticed too, with both boys. Even though their TS assoc. symptoms are very different. Certain illnesses, the type where they are flat out in bed=no tics. It is after they are back on their feet, that I might notice and increase in tics. The type of immune response that you referred to Mrs. D..... would be a TH2 response, I believe. Now this is the part I would like your opinion, and clarification, if you have a better understanding of this issue (mine is pretty basic). In a normally functioning immune system, you have a TH1 response first. This is the arm of the immune system which seeks and destroys invading pathogens, maybe a fever, would be more likely to be present during this phase? Then the part that you referred to, the TH2, steps in and cleans up. TH2 involves the inflammatory response. In an allergic situation, TH1, may be bypassed altogether, and you are dealing with only a TH2 response. I'm wondering if it's possible, that the "tic free" phase of an illness, could be during the TH1 phase, and as the body swithches to the second phase, (Th2) may be where we would note, an increasein tic activity. When something like poison ivy, pollens, herpes viruses, etc. are involved, I have noticed an increase in tics, at onset, during and after. I started a thread a while back on TH1 and TH2. I'm going to bump it, in case you have any thoughts on it Kim

December 17, 2006 Eli Lilly Said to Play Down Risk of Top Pill By ALEX BERENSON http://www.nytimes.com/2006/12/17/business/17drug.html The drug maker Eli Lilly has engaged in a decade-long effort to play down the health risks of Zyprexa, its best-selling medication for schizophrenia, according to hundreds of internal Lilly documents and e-mail messages among top company managers.

Patty....and Welcome Jackie and Lenny! A "diagnosis," was really important to me, in the early days too. Now, the only real value that I see in it, is ruling out any other physical problems or disorders. Once a neurologist realizes that you probably know more about tic disorders than they do ( I say this from my experience, hopefully, it's not true in all cases) you are much more likely to have your opinions respected. I guess if you read this, you could pretty much, give your Neurologist the diagnosis. You are really in a better position to diagnose anyway, if it's TS or a tic disorder, since you are the one doing the observing in everyday situations. http://www.emedicine.com/NEURO/topic664.htm#targetG Two case definitions for TS are accepted widely: the DSM-IV-TR definition, which is widely used in the US for clinical purposes (see the DSM-IV-TR criteria for tic disorders below), and the TSSG definition (see TSSG criteria for tic disorders below). Experts identify similar groups of patients by using either set of criteria. DSM-IV-TR criteria for tic disorders from the American Psychiatric Association, 2000 Diagnostic criteria for TS (DSM-IV-TR 307.23) Both multiple motor and 1 or more vocal tics have been present at some time during the illness, though not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.) The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months. The onset is before age 18 years. The disturbance is not due to the direct physiologic effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis). Diagnostic criteria for chronic motor or vocal tic disorder (DSM-IV-TR 307.22) Single or multiple motor or vocal tics (eg, sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalizations), but not both, have been present at some time during the illness. The tics occur many times a day nearly every day or intermittently throughout a period of more than 1 year; and during this period there was never a tic-free period of more than 3 consecutive months. The onset is before age 18 years. The disturbance is not due to the direct physiologic effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis). Criteria have never been met for TS. Diagnostic criteria for transient tic disorder (DSM-IV-TR 307.21) Single or multiple motor and/or vocal tics (eg, sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalizations) are present. The tics occur many times a day, nearly every day for at least 4 weeks, but for no longer than 12 consecutive months. The onset is before age 18 years. The disturbance is not due to the direct physiologic effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis). Criteria have never been met for TS or chronic motor or vocal tic disorder. Specify if this is a single or recurrent episode. Tic disorder not otherwise specified (DSM-IV-TR 307.20): This category is for disorders characterized by tics that do not meet criteria for a specific tic disorder. Examples include tics lasting less than 4 weeks or tics with an onset after age 18 years. TSSG criteria for tic disorders, 1993 Diagnostic criteria for TS (coded as A-1 or A-2 depending on source of information) Both multiple motor and one or more vocal tics have been present at some time during the illness, though not necessarily concurrently. The tics occur many times a day, nearly every day, or intermittently throughout a period of more than 1 year. The anatomic location, number, frequency, complexity, type, or severity of tics changes over time. Tics have their onset before age 21 years. Involuntary movements and noises cannot be explained by other medical conditions. Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or be recorded by videotape or cinematography (for definite TS, A-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by reliable examiner (for TS by history, A-2). Diagnostic criteria for chronic multiple motor tic or phonic tic disorder (B-1 and B-2) Either multiple motor or vocal tics, but not both, have been present at some time during the illness. The tics occur many times a day, nearly every day, or intermittently throughout a period of more than 1 year. The anatomic location, number, frequency, complexity, or severity of tics changes over time. Tics have their onset before age 21 years. Involuntary movements and noises cannot be explained by other medical conditions. Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or be recorded by videotape or cinematography (for definite chronic multiple motor tic or phonic tic disorder, B-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by a reliable examiner (for chronic multiple motor tic or phonic tic disorder by history, B-2). Diagnostic criteria for chronic single tic disorder (C-1 and C-2): This disorder is the same as in the previous category (B-1 and B-2), but with a single motor or vocal tic. Diagnostic criteria for transient tic disorder (D-1 and D-2) This disorder is characterized by single or multiple motor and/or vocal tics. The tics occur many times a day, nearly every day, for at least 2 weeks, but for no longer than 12 consecutive months, although the disorder began over 1 year ago. The anatomic location, number, frequency, complexity, or severity of tics changes over time. Patient has no history of TS or chronic motor or vocal tic disorders. Tics have their onset before age 21 years. Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or be recorded by videotape or cinematography (definite transient tic disorder, D-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by a reliable examiner (for transient tic disorder by history, D-2). Diagnostic criteria for nonspecific tic disorder (E-1 and E-2) Tics that do not meet the criteria for a specific tic disorder fall into this category; an example would be a tic disorder with tics lasting less than 1 year and without any change over that period of time. Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or by videotape or cinematography (for definite nonspecific tic disorder, E-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by a reliable examiner (for nonspecific tic disorder by history, E-2). Diagnostic criteria for definite tic disorder, diagnosis deferred F: This disorder meets all criteria for definite TS (first definition, A1), but duration of illness has not yet extended to 1 year. Diagnostic criteria for probable TS type G Type 1 fulfills all criteria for definite TS (first definition, A1) except for the third and fourth criteria. Type 2 fulfills all criteria for definite TS (first definition, A1) except for the first criterion; this type can be either a single motor tic with vocal tics, or multiple motor tics with possible vocal tic(s). Diagnostic criteria for probable multiple tic disorder, or motor and/or vocal tics H: This disorder fulfills all criteria for definite chronic multiple tic disorder (second definition) completely, except for the third and/or fourth criteria. Physical: An important caveat is that many patients with tics may not demonstrate them on their first office visit, especially when one is looking directly at the patient. In such cases, important aids to diagnosis can include obtaining the patient's history from several sources; scheduling follow-up office visits; and, most importantly, assigning the patient (or his or her parents) to bring a home video to show their behavior. Learning to watch the patient out of the corner of one's eye while speaking with a family member or writing in the chart is also helpful. The remainder of the physical examination is important primarily for differential diagnosis. Special attention should be paid to the patient's mental status, cornea (Kayser-Fleischer rings), eye movements, abnormal movements, muscle tone, gait, postural stability, and bradykinesia or tremor if any. General neurological and psychiatric examinations are also important.

Oh Giselle, I have goose bumps. I couldn't be happier for your family. That is so cute about the kids and their remarks. I kept checking all night to see if you had posted. What great news, to get to sleep on!

Daniel, Since you have been looking at this issue, thought you might want to read this. http://www.massbfc.org/formula/bottle.html

Patty, I do think that enzymes have been very beneficial here. Maybe these links will help get you started http://www.enzymestuff.com/basicswhichenzyme.htm http://www.enzymestuff.com/ http://www.danasview.net/phenol.htm http://www.danasview.net/yeast.htm

http://azithromycin.drugs.com/ Do not take azithromycin at the same time as taking an antacid that contains aluminum or magnesium. This includes Rolaids, Maalox, Mylanta, Milk of Magnesia, Pepcid Complete, and others. These antacids can make azithromycin less effective when taken at the same time.

Underlining mine...... http://www.ivanhoe.com/channels/p_channels...m?storyid=13302 Top 10 Skin Allergens Identified (Ivanhoe Newswire) -- The 10 most common causes of allergic contact dermatitis were released in a new study from the Mayo Clinic. The report shows the top allergens are nickel, gold, balsam of Peru -- a fragrance used in perfumes and skin lotions; thimerosal -- a mercury compound used in local antiseptics and vaccines; neomycin sulfate -- a topical antibiotic common in first aid creams and ointments; fragrance mix -- fragrance allergens in foods, cosmetics, dental products, and insecticides; formaldehyde -- a preservative; cobalt chloride -- a metal used in medical products, hair dye, antiperspirant, and items plated in metal like snaps and buttons; bacitracin -- a topical antibiotic; and quaternium 15 -- a preservative in cosmetic products and industrial products.

Carolyn, I do understand about the blood testing. I had wanted to explain in that first post (before edit) that I was reading a thread, that talked about people crashing from a blood sugar level of, say, 140 to something in the 80's. They were saying how your brain needs a certain amount of sugar, and how the sugar and carb cravings will hit. All I know is that my son seems to be grummmmpeee, when sugar or crackers/carbs are restricted. I guess hypoglycemia, is an area that mainstream medical Dr.s don't really like to acknowledge???? I did just receive the Great Plains OAT and 24 hour urine amino acid collection, tests yesterday. I probably won't do the tests until next Sat. because of school. We are not getting anywhere with new foods, as I've said before. I need to find out, how much a part yeast may be playing. I've been so tempted to just start yeast treatment and see what happened, but something tells me, I should do this test first. I've never had a great deal of confidence in the test that I had done through Metametrix, which was boderline high for their yeast metabolite. My Chiropractor is going to sign for the tests. I had asked him if he was able to sign for blood labs. He said our state is one, where Chiropractors are restricted in what is allowed of them, and that "no" he was unable to order blood work for me. Bummer. He has been a wonderful find though. The girl I spoke with at Great Plains, said that the 24 hour amino acid test, would give the best overview of the 3 (single urine, blood, or 24 hour collection). That made me feel like it would be worth it, as I was always hung up on, blood or urine?

Patty, Blood would show recent exposure only, to lead at least. I'm not sure if it will show other metals, at all. Hair will give a history, however, if it shows low mercury, it could mean that you are just not excreting, if it shows high, I think it means, you can pretty much count on the fact that it IS high (a problem). What you are looking for with hair, is a pattern of impaired mineral transport, I believe. This will explain the counting rules, used for hair testing http://home.earthlink.net/~moriam/HOW_TO_hair_test.html Here is a site with some posts discussing different types of testing. http://home.earthlink.net/~moriam/ANDY_IND...tml#supplements Most urine tests are challenge or provoked. After reading the site, that I linked above, I decided, that I didn't want this test for my boys. Maybe someone who has done a challenge test, will post their experience with it. Since my boys issues are so mild, I am just afraid of stirring up any metals, that their bodies, may not be capable of excreting. There are varying opinions on this subject. This is another urine test http://www.latitudes.org/forums/index.php?...c=1795&st=0 This test is being ordered/discussed on some of the autism sites, as it's fairly inexpersive and no provocation (chelating agent) necessary. No Dr.s sign. required either. As you can see from that thread, Claire, who posts here, had this testing done.

Carolyn, Just a thought. Do you think it might be a good idea, to cut back, and start dosing at night. Since you are pulling quite a bit now, do you think there is a possibility that going for 8 hours at night, might not be adequate for excretion? Having no experience, but reading many chelation stories, that is something, that I would consider taking up with the Dr., if it were one of the boys. Setting an alarm for the middle of the night, wouldn't be a lot of fun, but if there is any possibility of redistribution, might be worth it?

Mommy2three, The form of magnesium that is discussed as appearing to have good results for many here, is mag taurate. I order mine from Bonnie Grimaldi's Bontech line of vits http://www.bonniegr.com/products.htm (In case you decide to switch) One of my son's eats no meat, or any good sources of taurine, so I feel the mag taurate is important for him. The calcium supplements that I'm using for my boys is Citracal (calcium citrate) Petites. Both calcium and magnesium are pretty bulky supplements, so in order to get a very much of it, you have to swallow a few capsules/pills, to get it all in. I know that there are a few liquid combo's, but I don't know what forms of cal and mag they contain. I think Kirkman's has a liquid, if I remember right. The citracal petites are fairly small and coated. There was also a thread here recently, discussing lead in calcium supplements. I found at least one site, that said the Citracal tested clean for lead. The citrate form of calcium, so I have read, is supposed to be pretty absorbable, however, if your child tends to have loose stools, you may want to avoid the citrate. If she tends to be a little "less regular" than you would like to see, it may be a good choice. This site, has tons of good info when searching for these two supplements. http://www.enzymestuff.com/calcium.htm http://www.enzymestuff.com/magnesium.htm I found this site to be really valuable, when I first started learning about which vitamins, did what. http://lpi.oregonstate.edu/infocenter/vitamins.html

Carolyn, That's an interesting thought about McDonalds. There was a long thread on one of the autism forums, titled "McDonalds french fries." Seems many kids crave those. McNuggets were in there for some of the kids too. My son won't eat the Mcnuggets, but.....he will eat their hot fudge sundies. No, my son doesn't have any other fast food items that he will eat. He will consent to a fry from another place occasionally though. I really understand your thoughts, on your body possibly craving what it needs you to eat. They are tough decisions to make, and try to enforce! I had originally posted something about keeping milk in my son's diet, because of the sulfur and protein that it provided him with. I edited it out, because it's more of a hunch, (the sulfur part) than anything that I really have a good understanding of. Maybe as the levels of Cadmium come down, things will calm down with your cravings. My fingers are crossed! I think the name of the enzyme used for sugar metabolism, was sugar ease? I tried to do a search for it, and didn't come up with anything, so I don't know how it's supposed to work.

http://www.thefhf.org/index.cfm?tdc=dsp&page=issues A new threat to your supplements Overview of Problems - Mandatory Adverse Events Reporting (AER) Bill Julian Whitaker, MD - May 8, 2006 This bill directs consumers to complain to dietary supplement manufacturers or retailers rather than to local physicians or health authorities if they believe they have experienced a serious adverse event from ingesting a dietary supplement. It preempts any and all evidence of causality and opens the door for hearsay accusations with no attempt to protect supplement manufacturers from such. This bill invites the FDA to investigate supplement companies based on unverified complaints of injury. The FDA, as we all know, is terribly biased against nutritional supplement companies and is more than willing to use this bias for harm. The AER bill would add additional “legal” weapons. http://thomas.loc.gov/cgi-bin/bdquery/z?d109:SN03546:@@@R 12/6/2006 Passed/agreed to in Senate: Passed Senate with an amendment by Unanimous Consent http://www.thepetitionsite.com/takeaction/...?ltl=1165637407 Congressional Oversight Needed to STOP FDA's "Trilateral Cooperation Charter"

Carolyn, Reading about you struggling with this issue, seriously breaks my heart. I know how in tune you are with your body, and all of the knowledge that you have regarding your diet and TS symptoms. Your posts, so closely mirror what we struggle with. How can I expect my 10 year old, to deal with this, when he has virtually no clue, what's happening. His craving currently, is candy canes. The oreo mcflurry and Mc D's french fries, and pretzils, are others. I don't remember, if you are using any digestive enzymes? I recently read a post on Autism/enzyme, about an enzyme used for sugar regulation. Have you read anything about that?

Molly b, Look on the bottom right side of the page, where it says, ADD REPLY or NEW TOPIC. It's further down than the one that you're using at the bottom of the post. Use the Add reply option, and you'll be all set. Lot's of people have this problem, including myself, when they first join. I have two sons with tics. We have seen many benefits using the alternatives that are discussed here. Allergies, are an issue here too. Another thing you might want to try, if you can convince your son to do it, is start removing artificial colors and preservatives, particularly MSG from his diet. This is an article that you might want to read on MSG. http://72.14.209.104/search?q=cache:6OAfs1...=3&ie=UTF-8 I would also suggest that you read through this site http://www.bonniegr.com/Interview%20with%20Bonnie.htm It gives a good explaination of some of the chemicals involved in TS/tic disorders. I use her products for my boys.