Claire

efgh/Heather/jean Heather, I know you mentioned threelac a couple of times is it just for yeast or for heavy metals or both? I want to mention this to my doctor when we next meet, since it was so helpful to you. It is all I can do not to get started with it now! Also, I did buy epsom salts--if I can ever get him to take a bath not a shower. I am not so patient and have added in all the supplements back in except one (a new one each day), and the big antioxidant I am only doing one capsule instead of two. Heather--do you think the touching is a tic or a compulsion for your child? I could never figure that one out for my son--I assumed it was a compulsion. efgh I don't think you can delete a post. To edit one after it is posted, go back to your post--just like you are just going to read it. Immediately above your post, on the right side, you will see the word edit. Click on this and it will take you to a screen where it looks like you just typed in the post and are ready to submit. You can can or delete easily. To delete the extra posts, delete all but one letter--like a period--this is better than a page of duplicates. efgh/jean Interesting that our 3 kids all have reactions to caffeine (chocolate) and TV. Perhaps the flicker is some sort of stimulant for them, and they are easily stimulated. I am more amazed that caffeine in chocolate doesn't affect more kids that way--they are lucky, since so many holidays have chocolate. Although it seems to me that the chocolate in candy is worse than chocolate in homebaked goods, so it could also be the vanillin or other artificial ingredients for my son, who knows? I do let him have some chocolate these days--compensating for taking away wheat due to his allergy. Heather--I notice the chocolate because he rarely has it, and his reaction is within an hour. Since he doesn't get tics without the computer, I notice the fidgetyness go way up, and he definitely can't sleep following an intake of chocolate late in the day. Claire ps, heading out of the house for vacation tonight. Don't know if I can get the internet while I am gone or not.

efgh, Again, you might consider an LCD monitor when you revisit TV. This has no flicker and we have had good luck with it, though my son rarely watches by choice--it just isn't part of his lifestyle. We limited TV/Computer even before his photosensitive reaction to encourage reading, creativite play, and physical activity. Chemar, If one has an open relationship with their child, you will know what restrictions bother them. For our son, it is food restrictions which is why I didn't enforce any until he got his test results back. (other than eliminating wheat for 2 days and stopped based on his reaction.) Even now, the wheat restriction is a tough area of balance for us--we are going on a mini-vacation and no home cooked alternatives. When his doctor said his stomach had 3 times the inflammation of normal and thinks it is due to the wheat allergy, it was pretty clear that the wheat does have an impact on him, including possibly fundamental nutrient absorption. He also won't swallow pills, so I don't make him. I agree with you on over restricting, it is just that every child has a different hot button. My son would not do all the things your son is willing to do, but just doesn't care about TV/computer. I am still struggling with the wheat thing, as I don't want to produce a sadness in him, but sometimes clearing the system and slow reintroduction can work. Peanuts--he could care less about. And he is adament about eating whatever junk with artificial sweeteners the other kids have. And I can watch him just getting uncomfortable after eating a load of it at school (e.g. Valentine's Day!). My son won't take trades or bribes either! My only choice would be to tell a teacher not to let him have it, but see, that's where I won't 'punish' him for his sensitivities. Fortunately for him, for artificial 'junk', the effect appears to be gone the next day--unlike computers (and unlike wheat). Any ideas on the wheat elimination would be appreciated! I buy all the substitutes and found ones I think are great. It is not a problem at home anymore, it is just when we are out at favorite places with the association of the favorite foods. He would balk at my bringing substitutes. Claire

Alens, I am so sorry for your troubles. Certainly none of us are professionals, but I have a nephew with OCD, and have read a ton of books on it--your symptoms sound classic. Unfortunately, the meds didn't work for him, they just made him gain weight. For some they do of course. You may wish to visit theboard here for Tics and Tourettes Syndrome. Many parents there have kids with tics and OCD symptoms, and have found underlying health conditions that when correct with supplments have greatly alleviated the condition. http://www.latitudes.org/forums/index.php?showforum=1 Also, there are doctors who instead of prescribing meds, first go through a set of protocols to see if there is a health issue aggravating the symptoms. I am not against meds if they bring help, but you might want to try this first. If you request that a doctor not 'label' you for work reasons or whatever, they may be comfortable with this. If you are interested, you might consider a DAN doctor--there is a spectrum of neurological issues they work on. These doctors (many of whom are MDs) will run you through a series of non-invasive metabolic tests (except the blood test is semi-invasive) to see if there are underlying imbalance may be causing your symptoms. The benefit of a DAN doctor is that they have established a protocol with a battery of tests for the most common underlying conditions, such as: vitamin deficiency allergies yeast heavy metal toxicity low antioxidants gluten/casein issues If you have a PPO, it will cover much of this. To check out the practioners in your area, go to: www.autism.com/ari. Click on DAN on the left, then find a doctors in your area. It is amazing to me how many people on different board who have done some testing have similar underlying issues, and several have had success with this approach --and never did or no longer do use drugs. Good luck, Claire

Thanks Chemar. Funny, in the old days, I cared more about wasted water. Now I want to get rid of those bad evil toxic chemicals! Reverse Osmosis it is then. Claire

Heather/Chemar Why reverse osmosis, which I understand takes 5 units of water to make 1 unit of drinkable water? In our old house we used Ametek filters, which was a 2 filter set--it tasted great and didn't use so much water. Is there something superior about reverse osmosis? They just started adding choromide or something to our great water here at our newer home, so I am using a table top filter and was going to have one installed again. Thanks, Claire

Heather, What you say makes SO much sense. re heavy metals and yeast being a root cause for many. Of course in my son's case, his antioxidant issues may be the root of heavy metal build-up. Isn't this whole area the DAN protocol? Look at how many of us are finding problems here. I remember Chemar mentioning yeast very early on and Jennifer of course with heavy metals. Of course, so much is said about fatty acids too...that's why I like the testing scenario. But most importantly, if there is an order that they must be treated, it is critical to know this. My goal is that all this ultimately eliminates or minimizes my son's sensitivity to computers/TV, plus his occasional anxiety/mood issues and sleep delay issues. Nice goal! My doctor thinks his allergies should improve also, but right now, the wheat allergy likely aggravates things by interfering with nutrient absorption. efgh, I though fatty acids just helped with impulse control, not detox, but I am not an expert.

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I am curious as to what kind of test this was...skin prick? blood? 'Gluten-free pantry' makes a great gluten-free bread mix. I invested in a home bread machine for $70 (oyster). THe packaged breads are awful. 'Pamela's' makes an awesome pancake mix Cheddar is a milk product. There are multiple ways to check for candida. My son was negative on the RAST for candida, but positive on another one. Claire

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FJ on braintalk said that low antioxidants are correlated with autism--which I assume means the autism spectrum also. http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005850.html

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Meg, My heart goes out to you and your son. My son is 10 and had reactions to strep in the past. I had read that for those who get tics or anxieties/OCD symptoms during strep, if you treat the strep right away, the child can be okay. However, repeated exposures to strep, even when you treat it, can cause more permanent issues. This was my fear and unfortunately, like your child, after this last round of strep, my son's anxieties lingered after the medication though they were greatly reduced from when he had strep. Fortunately they are virtually gone now, though it took 2 extra months. I think other things we did helped though--but too many to know for sure what did it (We are running a ton of tests and this is on the environmental doctor visit thread). I think the air filter made the biggest difference--go figure. And melatonin at night--given for a different reason--but his fears were at bedtime. I think he has commented on a fear once in the last month. Another thing I am thinking about. Though I know from studies that the PANDAS symptoms are antibody related (harming cells in the basal ganglia), I wonder whether the antibiotics for the strep may contribute to yeast issues that so many of our kids seem to have (just read this board), creating yet another imbalance that causes stress on the body. Good luck to you. Anxieties are so hard on everyone. I just detest strep throat for this. And think of all the parents who don't ever know what hit their child. Even when they know where the anxiety is rooted, it feels the same. efgh, There are some studies being done on the tonsil removal, with no clear results. Claire

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A number of you took your kids through 'detox.' So, with some background here of what I have found, I would appreciate input from any of you on what antioxidants have to do with detox. So how do free radicals relate to detox and the nervous system? I thought they were an aging and/or cancer thing?? I thought it would be good to good explanation here. In the EM doctor visit thread, I discussed that we just got my son's test results back and he was very low in antioxidants. 3 different tests hit on this one. He was deficient in multiple areas related to antioxidants: Vitamin C, sellenium, decreased decreased pyroglutamic, a metobolite of glutathione, and alpha lipoic acid. Plus he was at only 35% of normal. His doctor kept saying he was detoxing --but there was so much data I was trying to follow, I never asked for an explanation. First, Heather, This is antioxidant supplement he gave (this was a separate supplement from all the others for specific deficiencies). But if the heavy metal toxicity test comes back positive, then I suspect he will provide more specific supplements for that. "Deluxe Scavengers" Antioxidants Vitamin A (as Beta Carotene), C, E B2 Riboflavin 5 phosphate (I just realized this is the active B2 after all!) B6 Selenium CoEnzyme Q10 Lemon Bioflavonoids L-Glutathione Reduced (Heather, this sounds like an important one for Detox!) N-Acetyl Cysteine ----------------------------------- One test said my son had "decreased pyroglutamic, a metobolite of glutathione. Glutathione serves as an antioxiant and and also removes toxins such as mercury, PCB's, PBB's and other toxic chemicals. Low values may indicate glutathione deficiency due to oxidative stress or chemical exposure." I found this so far: Glutathione (apparently a deficiency/issue, though it sounded indirect) "Glutathione is a small molecule made up of three amino acids, which exists in almost every cell of the body... The presence of glutathione is required to maintain the normal function of the immune system. It is known to play a critical role in the multiplication of lymphocytes (the cells that mediate specific immunity) which occurs in the development of an effective immune response. Furthermore, the cells of the immune system produce many oxiradicals as a result of their normal functioning, resulting in a need for higher concentrations of antioxidants than most cells. Glutathione plays a crucial role in fulfilling this requirement. Glutathione as a Detoxicant. Supplemental detoxicants become necessary as our environment becomes increasingly polluted. Our food and water sources are contaminated with chemicals. One of our main defenses against pollutants is glutathione, which is present in the liver in high concentrations. Glutathione acts as a detoxifying agent by combining with undesirable substances and ridding the body of them through urine and bile. It is important to note that unless the Colon, Liver and Blood are also detoxified, the benefits of Glutathione as a detoxicant may be minimized. Glutathione is also used to prevent oxidative stress in most cells and helps to trap free radicals that can damage DNA and RNA. There is a direct correlation with the speed of aging and the reduction of glutathione concentrations in intracellular fluids. As individuals grow older, glutathione levels drop, and the ability to detoxify free radicals decreases. Alpha lipoic acid: "Antioxidants are a bit like kamikaze pilots, sacrificing themselves to knock out free radicals. One of the more interesting findings about lipoic acid is that it may help regenerate other antioxidants that have been used up. It is thought that certain nerve diseases are at least partially caused by free radical damage." (But the nerve damage it mentions is diabetic neuropathy) Selenium Selenium is required for a well-functioning immune system. Selenium is a trace mineral that our bodies use to produce *glutathione* peroxidase. Glutathione peroxidase is part of the body's antioxidant defense system; it works with vitamin E to protect cell membranes from damage caused by dangerous, naturally occurring substances known as free radicals.

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Jean, efgh efgh--the tics don't appear at the same age, it is quite variable. The overall age conclusions are averages as I understand them. But heavy metal accumulation might average a certain number of years to be at toxic levels. and no, by no means are all EM doctors also DAN doctors. Jean, We don't say 'tic's in our house--we call them 'flinches', always have, always will. I personally don't like the word tic--it is a harsh word. As for boredom, we just pulled out his old Harry Potter tapes. He has read the books multiple times, but the tapes are still good. Book tapes are great down time--lots are at the library. I just got back--we got the initial test results back, that is going to be a long post. Or multiple ones! Claire

Jennifer/Heather, I found out that my son's DAN/EM doctor didn't run the heavy metal test--bummer, because I asked him about this in the first meeting. I know he wanted to run a ton of tests and said we needed to do it in phases. In any case, do either of you know the name of the lab(s) that do this? Is it ONLY a hair analysis? I want to ask him please please to run this test tomorrow (Tuesday) midday when we go over the test results. I would think that he would have this information, but maybe not, or maybe their are nuances re the testing that I should ask him about? Thanks in advance...I know you may not check in by then! Claire

Hi Phyl, You have posted some terrific posts--Thanks! I didn't post on those threads because I didn't want to bury them--you bring fresh input to the board. If your doctor was a DAN doctor, then my understanding is testing for yeast is part of the diagnostic protocol. My understanding is that "Leaky gut"/yeast type issues can also interfere with absorption of nutrients which can of course upset the nervous system and worsen allergies. I get my son's results back tomorrow mid-day--I will post what we find out--they ran a ton of tests, including yeast and casein/gluten... Claire

Hi, Well, then if it is for anxiety/impulse, then yes cognitivie behavioral therapy is supposed to be effective for many. The idea is identification (this is an urge/intrusive thought), delay (how long can I keep from doing this, and try to improve the time, and distraction (do something else if possible). I think it is very difficult. Fun active projects (depending on age...digging in the garden, building sand castles, a sport) do help a bit. Exercise raises serotonin levels. They have books on this, and I personally would read before getting a counselor. At least you know what they are doing, and if you have an open relationship with your child, you can try it out. My brother sent his son to a counselor and the counselor was worthless--I am sorry to report. I am sure that some are great--they need a proven track record. You may also wish to look simultaneously for environmental, food or underlying health factors that might be aggravating. Claire

As Chemar said for OCD yes. I have read a number of books that cog. beh therapy can strenghten the ability to resist impulses over time. That giving in only makes it harder to resist, and the cycle can be broken to some degree. Though I don't think it is talked about as a cure, just a big help. I posted elsewhere that it is odd that this same approach is indeed considered harmful for TS, because sometimes it is a challenge to distinguish between a tic and a compulsion--e.g. touching tics, and it is a bit scary to think that someone might be doing harm when trying to help. I figure that as the child gets older they can 'feel' the difference for themselves. If they must do the urge or they think something bad will happen, or must touch something a certain number of times, then it would be more of an OCD thing. Claire

Hi Heather, We used to make the whole wheat banana bread all the time, it was great. We used 1/3 white flour over time, and used apple juice concentrate instead of sugar. No one could tell the difference. For berry pie, we also used apple juice concentrate instead of sugar and people always came back for more. Now my son is allergic to wheat (and peanuts), but you just gave me the idea to try this with non-wheat flour, thanks! What I am trying to find are good tasting protein dishes without wheat, beyond eggs, and hot dogs. He always ate everything with a flour coating. Claire

Jennifer, Sheila Rogers is the one that turned me onto the DAN protocol. I was confused at first by the term (autism!) since my son just gets ticks from computer and excema and delayed sleep, but after looking at the protocols and mapping them to our discussions here, it was clear to me that I was tackling this from a hit and miss standpoint. And that if this protocol addressed neurological issues on a spectrum then that was the bottom line. My own DAN doctors says he doesn't try to label the kids on the spectrum--he just looks at their symptom and the initial test results and goes from there. I personally think the labels are unfortunate, since as you say, there is so much overlap. This creates room not just for misdiagnose, but for medicating for the wrong issue! I just shudder to think of all the parents who find doctors whose knee jerk reaction is to medicate the child's symptoms without first seeing if there is some underlying health issue. Though I understand that they just want their child to be comfortable again, as watching them suffer is extraordinary. All my son's preliminary tests are now back and we have an appointment on Tuesday to hear what they are and to go over them. I think it took 4 weeks for them all, but we had to wait a week to get 'wheat' back INTO his system to better assess its impact. I am a little nervous about the meeting, to say the least! I too think there is more going on (the calcium deficiency for all the milk he drinks was a red flag to me). So good luck to you, sorry about the kidney concerns, but we know what this really is all about is finding the path to health. You have acheived a lot on your own already, now onto maybe the last leg. I know you will let us know as you go along--you are very good about this. This information we all share does make a difference in other's lives. Claire

Heather, Do you attribute specific supplements with helping OCD (like Chemar's comments on St. Johns Wort, and 5HTP, Inisotol and others), or your general program for health? Claire