kim

Hopeful, You made me cry, but not because of Tourette Syndrome, but because of the beauty of the love you feel in the face of such adversity. For such young people, you have the admiration of everyone here I'm sure. What has made her life so difficult, has also given her a rare gift; truly knowing unconditional love. kim

Claire, I have been meaning to respond to that thread, but keep forgetting to check my husband and my oldest son for the white spots. I have at least 3 white spots (no obvious physical problems) and my youngest son has 3-4 but his are bigger than mine. Also, I have barely any half moons, except thumbs, the same with younger son (8 yrs. old-mild tics and little sign of OCD relating to eating), My older son, 12 yrs. (teeth grinding and head shaking tics) and my husband, both have great half moons. My oldest son has been on TS Plus Control and the EPA/DHA (Bontech marine lipids) since late January, so he could have better levels. Wish I had checked him before the supps. When I have enough information i.e. yeast test, cleaner diet etc. I plan to start my younger son on supplements too. I will let you know if I see a difference in the white spots or half moons when we get there. Kim

I quietly listened while he told me that I had better get used to the fact that my boys had TOURETTE SYNDROME and I was being unfair to them, and possibly dangerous using 4000 mgs. of vit. E, and wondered if I thought the medical comm. was hiding info. on a cure with vitamins. ( I had faxed the ingredient list to him several weeks ago when we started the ts plus and the marine lipids.) About the 3rd time he emphasised I should accept TOURETTE SYNDROME and increase meds: I blew. I told him I had no intention of trying to "cure" my children myself and that the environmental Dr. was not a witch Dr. that used bat toes and tonic as a treatment, and the max dose of vit. e was 400mg. thankyou (not the 4000-he had referred to) Also, I think if a big drug co. was paying for the studies of the success of treating with vit/supp. maybe it would be proven by now, AND since he was so sure my boys had TOURETTE SYNDROME, I would like to hear where he would place them on the Yale tic scale, since I was under the impression that they would not even qualify for one on his precious scientific studies, if I tried to enroll them in one, for what they qualify as TS. When I brought up PANDAS which even my ped. recognizes as a medical condition, honest to goodness I think he thought I was talking about bears. I told him I thought he was right, it was time to "part ways." I think I can find another neuro to charge my insurance $107.00 for 3 minutes every 6 mos. to write a script for clonidine. His parting words to us were "be careful, there's a lot of dangerous stuff out there". I replied " well at least we agree on one thing: Haldol and Pimozide certainly can be dangerous drugs for kids". My son said his receptionist got a chuckle out of that. I did'nt notice, I was trying too hard not to throw the artificial plant at his arrogant close minded head. Thanks for the vent space. Kim

Andy, I have been waiting to hear some news from you. I'm so happy that it looks like you're having success with the detox! I don't post very often, but I read every single word of what's written here. Please keep us posted. I took my oldest son to his ped. today, armed with all of my research. I wanted him to know about some problems my son has been having (rash on side of face, occasional acid reflux type of thing, and in the last week or two, severe itching, head- body everywhere!) It's the strangest thing, it only happens about 9:30 at night, pretty consistantly. I think it has to do with allery, but I couldn't rule out Bonnie's TS Plus or the EFA. Also, I wanted a referral to a Board cert. internist that I located about 120 miles from our home. I spoke with her and she knew every lab and test that so many here have used. My Ped agreed, and I also got him to order the Candida test that Immuno Lab does. When I spoke with Andrea at Immuno, she gave me the CPT codes for the candida urine test- #86331 1 unit required and 86628 1 unit. I our Ins. co. -Health Plus and they said these tests did show as being approved, but I had to use a local lab. This is what's stated on my order for the lab: Urine-code #86331 (gel diffusion qualitative)ea.antigen/antibody and Urine code#86628 (candida). He laughed and said he would order it (last time he was negitive about Vits. and yeast issues) but for me not to expect him to know what the results meant. I was greatful as maybe the new Dr. can help. I am so sure this is an issue with my youngest son, if not both. He did give me the lab request for both boys. This was a huge accomplishment and I was feeling pretty good until I got to the boys Neuro. We just happened to have back to back appts. Boy was he *issed! He told me if I was going to use this Dr. who he referred to as a nut case, he thought it was time we "parted ways". cont.

Hi Dara, Claire,Laurensmom and All, I have been to the Great Plains Site and I see they have: 1 Kryptopyrroles $40.00 when ordered with another urine test 2.Basic OAT (62 tests) $220.00 3.OAT + Yeast C&S Combo $285.00 4. Glutathione $ 75.00 5. Metals (blood 18 tests) $180.00 6.Metals Urine 36 tests $170.00 (These are the ones I think would be most beneficial?) Dara: You posted that you ordered a test for your son without a Dr. signing an order, however the site says you need a Dr. to sign. Also, I was wondering if anyone can tell me which of these tests they ordered Basic OAT or OAT plus. etc. It appears it is cheaper to order multiples. Is the urine or blood more accurate, For metals? I am trying to get my Ped. to order these tests, I will pay (won't ask him to submit to insurance) as I think this is part of this problem. Will find a Dr. to advise when results are here . I would really like this office who acts like I'm nuts to see these results so possibly they will at least consider that there may be something to all of this, and give people a clue, so they can persue if they choose. THANK YOU ALL SO MUCH Kim

Natalie, What a relief it must be to be getting some answers, and confirmation of things that you had probably suspected. Although none of us want to be dealing with any of this with our kids, it's just got to be better to have something to work with to start resolving things. I will be looking forward to reading what the experienced people here have to say about your sons results. All I can offer right now is a prayer. Kim PS. You might try just typing in "blood test results ammonia", and hit go. I did that with the results of some blood work my son just had and got results for everything quite easily.

Dara, Could I ask why you are ordering the stool test instead of the urine test again? I think someone posted that the stool test can miss yeast easier than the urine test? Also, I was wondering if you could tell me a little about the die off period. Did your son have a hard time with it? I don't really know what to expect and am wondering if I should wait until school is out to start persuing this. How is your little guy doing? My 12 year old is having a hard time right now with the head shaking tic, and a bad bout with colds/allergies? It seems so much worse when he's in the house, than outside or at school. We are new to all of this, so I'm watching everything they eat, breath, look at (computer, tv, lighting etc.) and how Bonnie's vit. and the EFA's might be affecting things, and I have two, with different issues. Not complaining, as right now everything is quite mild. Thanks for the help Dara Kim

Marie and Dara, Thank you so much for your replies. Marie, your post about how you got your son to start eating and talking about how you will always remember the "hamburg" day gave me such hope. I could relate so totally and look forward to the day we can share that success. Dara, I wonder if you have time if you might look at Carl's blood work and tell me under complete blood count, if you see something PV. I am missing the first letter in that 3 letter sequence. The fax my Dr's. office sent cut the first letter off of the whole margin. I figured all of the rest out, such as WBC, RBC, HGB, HCT, etc. but this one which is listed last, I couldn't find on the site that tells about blood test results. It appears last in the column and happens to be high. 10.9- normal range 6.5 to 10.5. It's slight, but I'm looking for clues, after all. Also, the info you shared about the yeast was really helpful. I HAVE to find a Dr. to order that test for my youngest son. His vit. levels appear to be normal. I had given him some B6 and cal/mag. remarkable results quickly, but he got hyper, I got scared and then he starting complaining about his stomach. I think his Dr. would have been happy to see high Mag. levels to attribute the nausia to, so he could say"I told you so". I can't talk to the Ped or Neuro. about any of this anymore, I get too furious. Thanks all! Kim

Ronnas, I am just about out of Bonnie's EFA. I have been thinking about trying the one Chamer recommends, is it borax, evening prim rose and something else? Is that the one you use? Any particular brand I should look for? Thanks, Kim

Hi Everyone, Could anyone tell me if you know what they look for in the blood work when they are testing for yeast? I have been going over the results of my sons blood tests and when I got to Monocytes it read "can be increased by virus or infection or fungus (yeast)". Since my sons # was 5.8 and the normal range 3.0-10.0 is this a good indicator regarding yeast or not? Kim

Marie, Thank you so much for the response. Man what I wouldn't do to see my son drink a glass of carrot and spinach juice. Once I gave him some chicken noodle soup broth in his sippy cup when he was just about 4 yrs. old. I had never tricked him before so he didn't see it coming, he gagged and wiped his tongue for an hour all the while crying. I think there is probably a little OCD type behavior associated with his eating disorder. I really feel like I'm btwn a rock and a hard place with him. I can't find a Dr. who even wants to talk about yeast. I've considered ThreeLac, as this is not supposed to require such rigid dietary restrictions, but I can just see some headlines appearing about toxic ingredients causing some horrendous thing and I'll know I gave it to my baby (8yr.old) against my Dr's advise. I think I'm going to start out giving him a couple of Bonnie's vitamins, as soon as his stomach seems to have settled, and hope that I see some improvement and gain his confidence that all of "this weird stuff Mom is trying does make a difference. His most active tic right now is one I haven't heard any of you mention-wiggling his ears! Both of the boys seem to have extreme mobility of their scalp, ears and eyebrows. I'm pretty sure they could place fairly high on America's Funniest Videos. We all get to laughing when they get together and try to out do each other. Anyway it sounds like your son did not have the extreme adversion to foods my son has, unless I'm missing something. We have offered him money, a pony, a Corvette, anything to try one bite of something new. I was pretty sure the Vet wouldn't do it by the time I made that offer! Did you have any special method when you started the changes in his diet? Again thanks for your input. Kim

MMAZZ, Could you clarify your comment about "being wrong". I have an 8 year old son who has the same diet you described your child has. I can't imagine what he would eat if I tried to eliminate sugar and milk. Did you find substitute foods at a health food store? I would really like to start some vit./supp. with him, but he has complained of stomach upset on and off for the last month, and I'm afraid the vitamins may contribute to this. I am also thinking yeast is probably an issue. Anyway, I was just wondering if you did manage to eliminate sugar or milk and what kind of results you had. My son had extensive blood work done last week and everything came back within the normal range including vitB, lead, magnesium etc. I am wondering if he has an absorbtion problem and if these tests, which were done by his regular ped. are really enough to tell me anything useful. Any thoughts? Thanks, Kim

Can anyone tell me if Pfeiffer can be covered by insurance? I finally found a Dr. in my area that said he would see my boys, but I could tell by talking to his receptionist that he has no experience with autism or TS and Health Plus does not recognize his practice. Thanks, Kim

Dara, My son got a real kick out of your message to him. When I read your posts, I can just feel your pain. I was where you are once, only I had no hope like this board provides. I had only those same fears for my sons future, and wonderings if my other baby boy would have it too. Well sure enough. BUT I wish I would have had someone tell me that what you see on TV "the most extreme cases" are not the norm. Even if that is the case, look how many suggestions and success stories there are between here and Braintalk. (Bonnies testimonials also.) I see so many refrences to the similiarities between TS and Autism but I have not read of anyone talking about their kids being extraordinary. I think both of my boys have some pretty unusual traits that are really neat. My 12 year old knows how to wire a DVD to his stereo and hook that to surround sound and connect an alarm clock to the whole thing. He just knows things about wiring and is great with electronic gadgets. My 8 yr. old can name every chef, and cooking spices, and knows the name of knives and what they're used for. He can practically prepare any dinner better than I can. And he DOESN"T EAT. He loves the food channel. He also has quite a vocabulary. He seems to pick up on unusual words and he uses them. As others have said, this is not their life; just a part-that God willing we can help them live with or better yet live without. Kim

Heather & Alison, I'll try again. Got some kind of an error message. Thanks for your replies. One interesting thing; when I did the spit test, both of my boys and I all had the stringy things right away. The next morning, mine was fine and so was my youngest sons. I did not redo my oldest son. I know this is not a scientific test, I talked to my sons Ped. He did not want to do the urine test, said he had heard people talk about it but dismissed it as a non-issue. He did order 8 vials of blood work. I wanted him to rule out diabetes because of my sons intense sweet cravings and excessive urine production (at night). He recommended a pill that is supposed to stimulate a chemical that causes people to urinate less frequently at night. Big surprise right? I want to rule out any known medical condition before starting him on Bonnie's vit. which I am giving to my 12 yr. old. I suspect the B vits. were causing hyper symptoms. I emailed Bonnie. She said there were no stimulants in the vitamins, so cut back and work back up slowly, or try to put up with it for a few days and see if it would pass. We cut back. I had given my younger son 300 mgs. of B6 and 400 mag. one night; his tics stopped (mostly facial,soft vocal hmmm-hmmm) within 10 minutes,this was amazing! However, second day he appeared hyper-I got scared thought maybe I had given him too much(which I might have) now looking for alter. med Dr. and waiting for blood work. Ped acted like I probably gave him to much mag. and that's what caused stomach upset, he had had the stomach flu, but was still feeling a little sick to his stomach on and off. Since giving him the vit. I have looked a lot at the UL for Vits. and read alot more. I may try an individual program with younger and compare how it goes with my 12 yr. old. Still uncertain about Threelac ingrediants safety, but feel better that your DR. oked it Heather. Please let me know if you start Alison. Thanks! Kim

Heather&Alison

Alison, Your post really caught my attention. Your case sounds similiar to my youngest son. I'm really interested to know, since you said your son doesn't eat much, if that was the way he always was, or if he started eliminating foods in his diet one by one. My son was a very good eater until somewhere around 13-15mos? I have looked at his immunization record and have also talked to other parents of so called "picky eaters" Do a lot of kids stop eating after their 3rd dose of immun.? This appears to be a pretty common age, when parents start to think back. The foods left in my son's diet are mostly all high in sugar and dairy. I think the yeast problem is a real possibility. A am so tempted to try the Threelac. They claim you don't have to follow the sugar restrictions, but like every parent I am so skeptical of doing anything without a Dr. supervision. Both the Ped. and the Neuro. have acted like I'm an idiot and strongly recommended I not give vitamins. I am in the process of looking for an Envir. Dr. or an alternative Med. Dr. to help. It is perfectly clear to me neither Dr. has hardly any knowlege of this disorder. I didn't myself until about 3 weeks ago and many hours reading the posts of the wonderful people here and on Braintalk. One of Threelacs ingredients is Streptococcus Faecalis. Does anyone have experience with this product? My 12 yr. old son is currently taking the Bontec basic program. If anyone would like to know how that's going I would be happy to share. The B's generating too much enery has been a bit of a problem, had to scale back. Thanks to all for the info. and support, especially the ones who are past the crisis feeling part, and continue to help the rest of us. Also, both of my boys were on soy formula, just because the hospital recommened it and they did very well on it. I wonder if it could have contributed, or helped (I would have to say they are both mild, although who knows what is to come with my 8 yr old.) My older son does not have any food issues. Maybe no relationship at all. I keep wondering if there is a milk allergy, if possibly I could have been dealing with Autism instead of mild/moderate at times tic's. Kim

Dara, My 8 year old is sitting next to me right now doing little shoulder shrugs, soft um um's and eyes twitching. He is my second son with tic's. My older son hummed so much in kindergarden (they couldn't figure out who was doing it) He didn't even know he was doing it. Like the others have said, they just come and go. I like the soft vocal tics because they don't hurt them like head shaking. My older son went through one period of loud vocal tics, only at home at night when tired. It lasted a couple of weeks. This was heart breaking but passed rather quickly and has never happened again. That was several years after the humming. This is kind of funny but the kids who play with my sons, who are quite mild, don't make fun of them, 2 kids in particular will start to imitate them. They will all be ridind their bikes throwing their heads back with their mouths open. My guys have great self esteem, are leaders and very good students. I am so proud of both of them. hellow dara this is kims son dont worry so much about your son my life is great i have had ticks for about 2 years and it is fine for me. Hang in there Dara. Kim

Ellen, Thanks for the information. I know I read what I was looking for (why identify the this condition if it's treated in the same way-B vits,mag,zinc) last night, but like so many of the new people here have said-I think I have information over load. What a major difference. No info or support for 7 years and now more than I can process. Thanks again, Kim

Dara, My 12 year old son has complained of overproduction of silivia. For a while I would see small wet spots where it looked like it just fell out of his mouth. He said it was just from his braces. He seems to know what is a tic and what is not, so I didn't pay alot of attention and it seeme to pass rather quickly. Now that Heather brings up yeast, I have to wonder?I had my younger son do the spit test this morning and it sure looked positve to me, but I really wasn't looking for it in my older son since he doesn't have the obsessive sweet craving his brother does. I will try it with him tom. I haven't heard any one complain about their kids becoming hyper after starting supplements/vitamins. My 12 yr.old is taking Bonnies Vitamins-a little over 2wks. now. He even knows the vitamins are having that effect. Does any one know if it would be the B vitamins or would the fish oils be a bigger culprit? Is there something safe to use for a calming effect in addition to her vitamins or would this be an indication I should cut back. Greatful for any thoughts. Maybe Cheri's alternative to the Fish oil? Kim

Heather, I just sent a post asking if someone could tell me what to expect from trying to rid my 8 yr.old son of unhealthy yeast. Does your child have a very limited diet or extreme sugar cravings? Thanks! Kim

Dara, Could you share the info you received from Cheri regarding the pyroluria testing? I don't know much about it, but from what I have read it appears it is treated similiar to tics-ie. vit B's, zinc, mag. etc. Could you save me some searching and tell me why people test for this seperately? Thanks, Kim

Cheri-and others, Your dedication to all of us who are desperately looking for answers/help is remarkable. I know I speak for many when I say THANKYOU! I spent last night(2:30 again) researching the yeast condition, and am convinced this is a huge issue with my 8yr. old. I did the spit test first thing this morning and sure enough-it had legs immediately. I was talking to my sister who had the Atkins diet book and she knew he talked alot about the over growth of yeast. He recommends Oil of Oregano or Olive Leaf Extract by a place called "Prolive-From allergy research group. Do you think it is safe for me to purchase this from the health food store and try it? Also, I am wondering what you think the results on his appetite my be. He eats only sugary foods, peanut butter, french fries, crackers, spaghetti sauce, (no pasta) cheese and pretzels. He will eat yougart and some fruits. You said in your reply that alot of the foods these kids crave are exactly the ones that make the condition worse. Boy can I see that! I am just at a loss as to how to possibly get him to eat if we eliminate these things that are making it worse. Will the die off occur even if sugar isn't eliminated? I know it will take longer and be harder to maintain, but is there a possibility he will add more normal foods if I can start to reduce the amount of yeast in his system. Since his tics are not a big problem at this time, I think I will hold off on starting Bonnies vitamins (My 12 year old is in his 2nd week on the vitamins) and concentrate on trying to get a handle on the yeast. I could try my pediatrician, but even if they agree to test him, I'm sure they would want to use a prescription drug. If anyone knows any thing that could be dangerous about trying this on my own-the info would be greatly appreciated. Kim

Cheri, Yes it would be fine if you posted the email. I'm not really sure what I'm doing here, as far as trying post. Thanks for your help. Kim