kim

World News Tonight with Peter Jennings is supposed to have a segment on vaccines/Government Cover Up, this evening.

Sarah, I posted a couple of links after Chemar and Andy mentioned some things about soy not being favored in some things they had read. Both of my boys were fed Soy formula. Maganese is the mineral that is in question in soy formula in these articles. This link will explain about the function of Magenease http://lpi.oregonstate.edu/infocenter/mine...nese/index.html Notice the amount on the adequate intake for infants chart, and look at the toxicity statements. Then check these two out http://www.mercola.com/2001/jun/13/soy_formula.htm http://www.mercola.com/2001/jun/23/manganese.htm This one is a little hard to read, It's long and kind of technical, but it seems to reinforce some of the things said on the Mercola site. http://www.dartmouth.edu/~rmasters/AHABS/Neurotox48dr22.pdf Is your son on soy, due to a milk based formula sensitivity? If not, you may want to consider a switch. I think Dr. Mercola recommends Carnation Good Start? I asked questions about this on a couple of sites, and from the lack of response, it didn't appear many felt soy formula had a connection with their childrens disorder, but I can definitley say, after reading these links, and having two sons with tic disorders, if I had it to do over again, I would not use it with out some evidence that this excess maganese has no validity. Also, on flouride as Marie mentioned, no more of those treatments at 6 month cleanings for my guys. Kim

Brenda, Here is a link that another poster here provided that is from Dr. Walsh at the Pfeiffer Institute. I found this material to be very informative. It mentions what Chemar posted in her response, Trichotillomania. http://www.alternativementalhealth.com/articles/walshQZ.htm You may have to click on the PAGES section at the bottom of the page to find the right one. I found all of the pages really useful in becomming fimiliar with the things talked about here often. Kim

Sarah, Here is a web site I found that has some info. on vaccine exemptions. http://www.909shot.com/state-site/legal-exemptions.htm If your little one does turn out to have a neuro issue, just try to take heart in the fact that there is so much help available. I'm sure this has caused you a lot of anxiety, it's hard enough with an older child, but one day at a time, and try to enjoy the preciousness of his infancy, jotty head or not, I bet he's wonderful. Is there a possibility massage would help sooth him when you feel you are unable to hold him? Kim

Robin, I read Children with Starving Brains, over the weekend and it mentioned copper in pools and hot tubs. Since it has been mentioned many times here, it caught my attention. I don't know what chemicals contain copper, but it might be worth looking into. Kim Found the book to be really useful reading.

Montel Williams show, on Tuesday June 21st, will discuss the topic of "Autism.... Can It Be Prevented?" Also on the show will be Lyn and Tom Redwood, David Kirby, author of "Evidence of Harm", Congressman Dave Weldon from Florida, another parent of an autistic child and Dr. Andy Shih from NAAR. The show will air Tuesday June 21, 2005. Please click on the link below to check your local listing: <http://www.montelshow.com/misc/where_2_watch.htm> http://www.montelshow.com/misc/where_2_watch.htm

For some reason tonight, the Learning Disablities Group caught my eye with a High Histimine Question. I clicked on it and found a link Sheila had posted for a yahoo group with Lab result discussions. I saw where Jacquelin McCandless had posted on this forum and found the discussion about the Great Plains Oat test and Metametrix, of particular interest. There are two links I copied-one is the lab test results site, and one is the story of an autistic little boy. Many of the things discussed here, are mentioned in this article. http://health.groups.yahoo.com/group/labte...yguid=148333625 http://www.redflagsweekly.com/mead/2003_mar17.html

Kristin, Thanks for the reply. Yes I did try the almond milk, oldest son loved it. I thought it was really good too. Youngest son, wouldn't touch it. He said "it tastes like almonds Yuk". He may start liking it, if he has no other choice. I quit buying his Carnation Instant Breakfast, and have stopped letting him have sweets except graham crackers. I am still letting him have cheese and 4 oz. of milk with his peanut butter crackers, and using the enzymes. He is losing weight. I hate this. Kim

This is a link that talks about the metals and their effects and suggestions for chelating them. I found this on the Autism/Enzyme web site. I'm not really sure who Dana is, but she replies to questions there often. http://www.danasview.net/metals.htm

Chemar, How wonderful you and your son will be speaking. You have been such a blessing to so many on this forum, and now sharing your story with many more I hope. Your son must be a remarkable young man to do this. If there is any kind of a video of this event available, I sure would sign up. I hope this event attracts a few from the mainstream medical community! Sheila is right, you'll knock their socks off. Kim Oh mostly mainstream, dah That makes this even better!

Andy, Daniel and I were instant messaging today, and we were hoping we'd hear from you soon. This is really starting to look like a story with a happy ending. My prayers for a full recovery for your son will be on going. Thanks for the update. Kim

Marie, You are going to talk me into juicing even if no one is ticcing. Keep those great stories coming, and keep the faith. I know even if you have a little crash, you won't burn. That was a wonderful story about your Mom. 2 gallons a day? I can't imagine trying to drink that, but if I had a growth, think I'd try. Son doing screens sounds like another success story. Quick update on enzymes. Youngest has been taking Peptizyde -about 1/4 capsule once a day, and twice a day for about 3 days. It's hard to be consistant with him, because you have to give according to how much they eat at any given meal. It's really hard to call what he does "a meal". So it's slow going. I tried to give him Zymeprime twice, again just a pinch but he got quite a bad stomach ache both times. I don't know if he wasn't ready for a 2nd enzyme or if he hadn't eaten enough when I gave it. So it's pretty slow going. I'm concentrating on working up the dose of Peptizyde right now, to help with the dairy digestion. I can't say anything for sure, but he does not appear to be asking for milk as much. His tics are there, but not bad right now. I haven't noticed any difference in the bed wetting with the use of the enzymes, and I was sure it was related to a milk sensitivity. Maybe we are not using enough yet, or it isn't related. Will just keep going slow and see what happens. Hope your guy is feeling better. Kim

Karen, I know just how you feel. I was looking at the chart that Daniel posted the link for and realized it was Inositol, that I have thought looked promising. When I said in an earlier post that I would never feel so helpless again, it was this kind of thing I was referring to. There are so many things with the potential to help. What ever steps need to be taken to try these things safely, at least we know they're out there. Isn't it amazing when you run across something like smelly socks excess salivia or so many other things people wonder about, but don't know are connected? I guess that's why we have a hard time staying away from this forum, because there is always something to explore/share, and Lord knows most of us can use that! Kim

Robin, http://brain.hastypastry.net/forums/showth...light=carnitine This is a link from braintalk with a ton of info. on Carnitine. Hang in there and don't be too discouraged, I think the age of 10 can be a little bumpy. The head shaking tic can be stubborn, but hopefully will pass as quickly as it came. My son went through about two weeks of a loud, scary vocal tic at night, around that age. It just passed and never returned. We were not using supplements of any kind at that time, and he never had any real vocal tics, before or after (a little humming in kindergarden/1st grade) he's 12 now. Hope Braintalk helps! Kim

ad_ccl, Glad to hear things are going well for your family. You make me feel guilty with that baking. The thing I was best at baking used to be those little Microrave cakes. They quit making them a few years back, I was bummed. Yes, the report card really made me want to call Bonnie and Dave, and say thanks again. Then I read Robin's post and got a little nervous. It would break my heart to see him back slide, and I know that's a possibility. However, even if that happens, I'll know his body is changing and we'll deal with it then. I will never feel helpless, like I did for so long. The other great thing about that report card was one of the remarks was-above average attitude, and-student is a pleasure to have in class. I wanted to thank Chemar for posting that link too. I hadn't read that before. I have to go back, and reread the part about the EFA that is found in cooking oils. I'm assuming, the people who supplement with that one, don't use cooking oils? It appeared to me that a person with an ordinary diet gets an overload of that already, however we had some really bad storms today, and I read it quickly-hoping I wasn't going to power surge and end up lap topless again. Hope your sons test result is back soon. Still waiting for yeast test, it will be 4 weeks this Thursday. Kim

Carolyn, Isn't it amazing what an impact a radom act of kidness can make. I'm so happy to hear your commitment to going med free seems to be going well. Love to hear your updates. Kim

Simon, I may have asked you this already, but I'm wondering if you are also using the Bontech Mag Taurate for times of symptom flairs? I just recently ordered this, not because oldest son is having any flair ups, but because I have read some pretty great things about taurine. I have only given him about one a week. He is not ticcing, so I don't want to over do anything. By the way, he actually did better, when I cut back fom 16 to ten of the TS Plus. I was busy working my way up, and he was too hyper, possibly from the B vits? I think he got sick, I cut way down from 16 to 12 and found he did really well, then we went to 10 and have stayed there. He is an adult size and weight. On days when he takes his morning 5 and forgets his afternoon 5, the teeth grinding starts up like clock work, so I don't think we can reduce any farther. I don't think I have given Bonnies vitamins enough credit. Yesterday I got oldest son final report card in the mail. His grades went from D, A,B,D,D+,B+ in the 4th marking period (prior to starting the vitamins) to A,B,A,B+,B,B-,B+ for the last marking period. Mostly his grades suffered from being late, with the morning body aches. I don't think he has taken a Mortin since he started those vitamins. This alone is a God send. Is there a possibility that you need more of the fish oils? I don't know how much your taking, but it seems kind of funny, that you would do well, and just start reacting to the fish oil negatively.

Could anyone tell me if they have ever tried the Vance Darifree product Kirkman's sells? Still struggling to get youngest off dairy. Kim

Daniel, Yes, oldest son does like fish, but now I'm not wild about him eating it do to contamination. He loves scampy at Red Lobster, and most any kind of fish. The fish oil capsules, don't taste like cooked fish though. Bonnie recommendes you take them at the beginning of a meal. I think that way when the gel cap "pops" you are not as likely to get that fishy taste. Sometimes son will say " Yuk it just popped", but he really doesn't act like it's all that bad. Kim

Sydsmom, I read something on the Autism/enzyme site about mag. and calcium being excreted in hair sample, but I don't know if the indicated the body wasn't utilizing it, or an overload. I will be anxious to hear what your Dr. Says. The first thing we noticed when I started my son on vitamins was, he stopped aching all over, especially in the morning. His school attendence has improved so much, and therefore his grades. The second thing we had improvement in and eventually stopping completely was the teeth grinding tic. The head shaking was the last to go, and I have to be careful not to get too excited because of the way this thing has of creeping back up, when you think you're home free. We have not done any food elimination (although we have removed a lot of junk from his diet, and increased fresh vegatable intake) with him, but he recently started taking allergy meds, he was so itchy at night. I guess we're going to take the meds at least for a while, as I feel anything that irritates the system, can flair tics. I would love to try a more natural remedy for this as time goes on, and we're only taking 1 and 1/2 pills instead of the three that were recommended. One is a stomach acid reducer, and from what I've read, it sure looks like these kids need their stomach acid to aid in digestion. I am just working my youngest son up on digestive enzymes. I really suspect he has a big issue with dairy. It's interesting your Dr. has your daughter on some type, so he must suspect she could benefit from help in breaking down nutrients. Can you tell me who makes Digest Right? Is it Kirkman also? I would like to look it up and see how it compares to what I'm using. It's great your daughter is feeling better. I think sometimes the moods are worse than the tics for some kids, especially when you throw in the hormones. If you have seen that kind of improvements the tics hopefully are not far behind. Kim *I'm sure you're still very smart. Mom's just have to wear too many hat's in one day most of the time. Also, I'm starting to think brain fog when it comes to Dr.s is some sort of naturally occuring phenomenon.

Sydsmom, I'm so glad you joined in. You have so much more to share here than I do. It's good to hear that you have Dr.s and family support that feels tic issues are something more than a condition "you just have to live with and hopefully outgrow". Your progression with treatment, will be helpful to all here. I found this group when I was exploding with questions and anger. For 6 years I bought what 1 neuro. told me, which was "live with it, or take prescription drugs. I'm getting over the anger part, and trying to be a little more objective now. My sons condition makes it harder for me to take the necessary steps because they do, do so well with grades friends etc, but I know for the best health and happiness we need to keep going. I have had really amazing success with Bonnie Grimaldi's vitamin program with my 12 year old son. He is basically tic free for a couple of months now. I don't know if your fimiliar with her program, but since you have a DAN Dr. it sounds like your pretty well set in that department. I too feel our kids have at least some things in common with the kids on the Autism Spectrum. At least some of the Dr.s seem to be recognising this also. I think the general health panel probably shows much of the same things my son blood work through their regualar pediatrician showed. Can you tell me if your daughter had high or low magnesium or calcium, zinc? My boys both showed as being on the high end for both mag and cal. This has been a puzzel to me, since mag. cal. and zinc seem to be at the heart, or at least part of the puzzle, for many. I have to assume, my sons are unable to absorb what's in the blood and hate to supplement with more, with out knowing. I'm under the impression that the Spectracell test shows what is in thecell-not just in the blood. Was Sydney tested for yeast? I ordered the yeast test for my youngest son through Direct Labs/Metametrix too. Only test I have ordered. I know some Dr.s think this is a problem, and some don't. Kim Ps. Just use the reply button under Tourette Syndrom/Tic-not the reply with the " and you will just post your reply

Sydsmom, Hi, it's nice that you decided to post. It would be great to see the results of another child doing this chelation. I sure hope Andy pops in pretty soon with an update. If you are unsure how to check posts by a certain poster, just look for that posters name anywhere, like on the threads page and click on their name and it will take you to a screen with a "view all messages" option. I don't have experience with message boards, so it took me a while to figure out how this works and if you haven't read all of Andy's posts, you would probably find them helpful. It's great that you're seeing results with the GF/CF diet. Just wondering if you have viewed the enzymes website? It appears they can be helpful for slip ups, or even to reintroduce/tolerate some foods. Would like to hear if your DAN Dr. has recommended them to anyone. There is a thread here that Claire started (she's taking a break from posting, and is really missed) that has test results from a handful of people that have had the type of testing your daughter is doing, it may be interesting for you to read, and even posts your results if your comfortable with that. Could you tell me what test your Dr. ordered to test for the deficienceis, that led to the supplements your using? I have been trying to get a Dr. to order the Spectracell 5000 for my youngest son. If your daughers hair test was high in metals, does that suggest that at least she is excreting them? My understanding is with supplements, the body sometimes starts ridding metals, or was the test done prior to starting supplements? Kim

Ronnas, Your post made perfect sense to me. I have looked at both sides of the family too. We have what would be a third cousin of my kids who does the blinky eye tic. Interestingly, his Mom told me, his Dr. said it was allergy related. Wish I would have asked her at the time who the Dr. was, but my thought was "allergy right, that's a tic" now after 5 months of all of this reading, I guess we probably were both right. I have psorisis on my elbow, my husband had a spot of alopecia on the back of his head, and his Aunt has had this too, a Dermatologist gave him injections in this quarter sized bald spot and the hair regrew. He has thick dark brown hair, it really looked funny. I have read where both of these things are considered autoimmune issues. We have a great uncle on husbands side that is a chronic change jingler and hummer, I could go on and on. I remember things from childhood now too, that seem like if you stretched it, could be related, but when I look at kids, most are a little quirky. We have a blinky nose scruntcher in our neighborhood, and a 12 year old who I no longer think is imitating my son. He has been head shaking since he started playing with my sons, and now I think it's more like a suggestive tic. I had been reading a web site, with mostly older teens and a few adults, that are taking med, before I found this site. They had mentioned summer tic camps aren't always good because sometimes your child will pick up new tics from another child. My oldest has said "Mom, make him stop shaking his head, or I'm going to start" He's talking about his younger brother. From what the boys say, when they're in the ticcy mode, even talking about it, will bring on tics. I was watching a child at my sons baseball game in the outfield shoulder shrugging. For almost the whole innning I thought it was my son. This kid does not tic, but it sure looked like he was sensitive to his Jersey, which is what my son has said. He will say "Mom that's not a tic, my shirt just feels funny, if a shirt is a little on the big side, he hates the way it feels. I'll have to see how much he does this, this summer when he's swimming and has no shirt on. My husband and I both have 1 sister each, no one else has ticcy kids, although my husbands sister strongly believes her 4 year old daughter has yeast reactions to antibiotics. She recently refused an antibiotic for a Strep infection. Her Dr. reminded her of the risk of not treating, but said he understood this was a new way of thinking, and did not insist. This beautiful little girl has had tubes in her ears and quite a few throat infections-no tics thank heavens.

Carolyn, I read the autism/enzyme web site daily. There are several reports of vast improvements, and even full recoveries talked about there. One Mom talked about being at one of the Autism conventions, and people coming up to her and asking for the name of the specialist who cured her kids. She said she told them it was two internet web sites, and one other thing (I believe enzymes) and she said noone believed her, they just thought she did'nt want to share the name of her Dr. You might want to read Andy's posts here. He is doing chelation with his son, and gives some explainatons of the drugs used. I think he refers to the type Claire is working toward with her son also. Kim Here is something I just found on the enzyme web site relating to chelation http://www.enzymestuff.com/discussiondetoxification.htm

ad ccl, I really enjoyed your post. It reinforces how I strongly believe my youngest son needs to be off of milk. I have been trying the enzymes, AFP Peptizide(help with gluten and caisen breakdown) but since our trek to the allergist, have been afraid to continue until I'm sure nothing in the allergy meds are time release. For the past couple of days, I have been trying to plant my flowers, clean house(drag) shovel out car, and get my life somewhat back in order. Someone said they felt like a poster was 'spinning' here once before, I feel that way right now. My oldest son is doing great tic wise. The Zyme Prime really seems to help in the elimination dept. even in a very small dose. This is my carb child, who take Bonnies vits. Didn't notice much with the sugar/dairy king, but he took such a small amount of the peptizye that I would not have expected to see much. The allaergist appt. was interesting. Youngest reacted mild/moderate to cat, mold dust mite- oldest with the night time itching, was an explosion. You should have seen his back after the scratch test. WOW, grasses, mold, two kinds dust mites, trees, just about everything, no wonder he was itchy. Youngest had really mild peanut reaction, but the Dr. said so mild don't worry about it, wonder what the elisa test would show, peanut butter is one of the few foods he eats. No other food allergies showed with scratch or injections for either son. I was hoping to get some clue on foods, but a sensitivity should be better than a full blown allergy, so maybe this is still good news. I think I posted we came home with Singulair, zyrtec,zantac,nasonex and allegra. My insurance change, doesn't look that promising, to get 60% coverage on testing, I would lose office call coverage, and anything to do with allergies, however I would'nt have to worry about referrals. I'm thinking I'll just stay with current coverage, and pay for testing myself. I should have waited and had a Dr. order the Great Plains Oat test for yeast, I paid almost 200. for the metametrix, and they're now saying 3 to 4 weeks, and I don't feel that great about the reliability of that test. Oh well, one day at a time. Kim