kim

Marie, The "key word search" came in very handy. I just wanted to know if you supplement with calcium/magnesium and zinc, while using the Animal Parade since it's low in these things. I know you are pretty much doing maintenance at this point, so maybe you don't feel you need to? Alison, were you able to come up with a multi, that you're comfortable with? So glad to hear that you feel like you're to a point where you can think of reducing. Kim

Hi Everyone, I went to the health food store looking for a better multi for youngest son. I was looking for one low in folate. I had read here Animal Parade was a good one. I think it was Marie or Alison that uses it? Anyway, I have been over and over the link Claire/Jennifer, posted to the lengthly article with Dr. Walsh from Pfeiffer. (this is awesome reading) However, when reading through some old post tonight, I read this post by Claire. I thought I had it wrong, that it wasn't folate that was bad for undermethylated people but Niacin, so I got my copies out and read- undermethylated persons, who thrive on methionine, SAMe, Ca, and Mg...but get much worse if they take folates &B12 which can increase methyl trapping. Then he goes on to say undermethylated persons generally exhibit very elevated folate levels and these persons get worse if additional folate is given. Can anyone clarify this for me? It mentions in another section (Trichotillomania) assoc. with undermethylation, that folic acid, clonine, DMAE, and copper should be strictly avoided. I have'nt found anything mentioning niacin yet. I have also noticed the great remarks he makes regarding Inositol for under M. people. Since so many here seem to report their kids sleep better after taking supps. and Bonnies Vit. contain this; aninmal parade even has a touch in it, I am thinking If I had a great Dr. like some of you do, this is something I would be asking about. I suspect it may have the calming effect that Clonidine appears to have in the beginning, unfortunately the benefits, I found to be short lived, other than helping with sleep issues(although it can-and did cause nightmares for youngest son) Also, the niacin in Bonnies Vit. is niacin as inositol hexaniacinate. Have no idea if this makes a difference or not. As a side note I am having ZERO success removing dairy from youngest diet. Chocolate almond milk was delicious, he would'nt touch it. Goats milk I thought was disgusting, I have rice and I guess as a last resort Soy, Is there a reason soy should be avoided other than the fact that many with milk intolerence have soy sensitivity too? Glad to read most here are doing well. I was so tempted to PM Claire, but I restrained myself although if your reading Claire, I got a kick out of your reference to my former Neuro . Kim

Claire, I feel like my Dr. is leaving town. Not meant to make you feel guilty, only appreciated. I am slow with my work now, but that changes month to month for me too, and it has suffered during this research project. That's ok, when I finally do testing I'll be able to discuss this stuff intelligently.(I hope). THANK YOU So Much. I sure will look forward to your return, and updates on you and your son's continued improvements. Kim

nickyt, I have had a bottle of taurine sitting in my cupboard for about 3 weeks. I have been afraid to use it since I am not doing this under the supervision of a Dr. currently. I will be interested in others opinions on this also. I have been reading the discussion on the protein supplements on the other thread, and am wondering if taurine levels will be boosted with that kind of a supplement. I think I read where taurine is an animal protein, and my youngest son eates no meat what so ever. His only source of protein is about 11/2 table spoons of peanut butter per day, and what ever he gets from dairy; cheese, yougart, milk. I think taurine can come from another source also (vegtable protein, Is there such a thing?) I think I would rather use protein powder than taurine supp. if it would do double duty. I know Bonnie Grimaldi recommends Mag taurate during periods of waxing tics. I'm wondering if increased amounts of Magnesium needed to be taken along with taurine. Kim

Hi New TS Mom, Sorry you're stuck with the non-expert for the moment. Claire and a lot of others here will be way better at answering specific questions if you have them. I can try to help with basic questions. There are a ton of threads that have so much useful information. Once you kind of get fimiliar with some of the tests, and places that do them, it will be a little easier to understand what others are talking about. When I decided we needed to use something other than clonidine (because I could see it wasn't helping control a painful head shaking tic) for my oldest son, I came across Bonnie Grimaldi's web site. She developed a product called TS PLUS which is basically a combination of vitamins and minerals that many have found to be useful for tics, and a lot of the conditions which sometimes accompany tics. I will try to post the link for her web site. If you start there, and read everything on it, it might help. That's where I started, and I really feel I have gained a lot of knowledge since then. It's funny, my oldest son started ticcing in 1st grade. He's now in 6th, and until January of this year, I never really knew anything about this disorder except what I was told by the Pediatrician and the one of the few pediatric neurologists in our town. I now realize how little they know about it. That was scary and very maddening. Many have found great relief for their children, getting to the bottom of inbalances and correcting them without prescription medications. It is confusing and overwhelming especially at first, but read read read and don't be afraid to ask questions. Everyone here is really wonderful and supportive. If you care to tell a little about your situation, It may help in pointing you in the direction of the information that might be most useful to you. Was your child recently diagnosed? Did they have an explosive onset of tics, or did it come on gradually? Is he/she on prescription meds? If you read the threads regarding pyrolauria, and yeast, this is a starting point for many. I was really BAD when I joined here, I had no idea how to use the forum, so just in case; just go to the top of this page and click "Tourette Syndrome/Tics" and look at the thread titles. Click on what seems of most interest to you. If you have a question regarding that topic, click on the add reply and submit your post. It will automatically take that subject to the top of the message list. Welcome, and I hope you find some answers here to help your child. http://www.bonniegr.com/Interview%20with%20Bonnie.

Hi Claire,Caz, Thanks for the stats on the Methylation, interesting. I would like to see more people post on their results and how closley the symptoms fit. My sons symptoms are mostly so mild, it's a little harder to even guess. Oldest has no ocd tendencies, younger has 2, eating and showering-have to rinse the bottom of the tub for several minutes before getting in, which I would definitly call ocd type tendiencies. However this is not an "always" thing with the shower. I was all set to order the pyroluria test, then I read Dr. Walsh statement about Symptoms: stunting of growth, (definitely does not apply) unpleasant body odor, (No) delayed puberty,-Oldest has all of the signs for a good 6 months, he's 12, skin stretch marks-No. I know this does not rule out pyrolauria, and I think FJ mentioned that the test will show you some deficiencies anyway, I need to reread her post. I guess since the cost is minimal, I still think it is worth doing. I have to tell you guys one thing I'm seeing, and many of you might warn against this, but oldest has been taking Benedryl nightly for about 2+ weeks, and he is doing really great, in the mood dept. especially. With the streph, and a little head shaking flair, I'm not ready to say WOW, this is stabilizing his histamine level, and making a major difference; but I am very tempted to continue this for a couple more weeks. When I talked to the Ped. about it, he said if it is working to control itching, no problem. I don't agree with this way of thinking, but short term it may be worth it. Also, as many of you have said, it's hard to stop what's working. I really think even the min. amount of the ts plus, and changing from fish oil to flax seed and borage, may have helped. Time will tell. Caz thanks so much for the MPV info. I will see what I can find, and maybe I can enlighten my Ped, since he did'nt kow. I really like this man, and I don't have any wish to be challenging with him.. I just so badly want him to understand some of my concerns, with steph, future boosters, food sensitivities, and my youngest sons appetite, since I can not see how this can continue, without it taking a toll on his health at some point. I envy how far you two are with the testing, and believe me, if our issues were larger, we would be further with it too. When everyone is doing well, I just want to forget this for a while. One more thing with youngest son; to early to tell, but it appears when I stop dairy from after school on (still has his morning breakfast drink) it looks like the bed wetting stops. Going to keep testinig this theory, and giving more non dairy liquids at night to see if it is the milk, or just reduced fluid intake. Have a great day! Claire, did you note where Dr. Walsh said histamine levels may not change in blood work, but symptoms can dramatically improve, indicating the level not does not always correlate to the severity of symptoms? I think that's what it said

Claire, Caz & Marie, Claire, I agree the streph needed the antibiotic. The part that concerned me was if my younger son has it and they missed it on the culture. That's why I asked if streph can just clear on it's own. Their illness was just so identical, it was hard to buy that one had it and the other did'nt, but youngest seems fine. They didn't seem interested in reculturing him. As for the B6 levels, maybe a P5P /B6 combo would a good way to go. I guess I would like to see blood work to see what kind of comparison you would get i.e no supplements, then P5P and uptake,also does anyones kids vitb level come back in the normal range when you're supplementing? I guess that would tell you for sure, that they need the additional amount. Claire when you stated, you knew you were low, have you been tested since? I wonder if you are in the normal range now, or over, and if over, by how much? I don't know how much is to much, as in taxing the kidneys with unnecessary excretion. I guess I have to believe the level would have to be much higher, since I have read about truly mega doses, and the biggest worry seems to be about the numbness in extremities. The link you posted from Dr. Walsh from Pfeiffer Claire, really got me looking at the Methylation issue, and my boys blood work. He says the markers for determining over or undermethylation are (1) whole blood histamine ref levels 40-70 mcg/dl, available from labcorp. or quest and (2) Absolute Basophils ref. levels 30-50. available from Direct Healthcare Inc in chicago. Elevated histamine and or/basophils indicate undermethylation. Then it goes on to state symptoms. I have to believe my oldest is under, and if I had to guess I would say my youngest is under also. I know I am probably being simplistic, but if there are people out there supplementing with different things like Inositol, SamE etc. These things appear to be very important. When people have positive results with something like Bonnie's viamins in the beginning, and then things start to go bad, it would make sense to me that they may be reacting to something as simple as the Inositol, as this can have negitive effects on overmethylated people. Claire, I think you pretty much said this in an earlier posting, but my take on this is, even if it gives little hints as to what test your money is best spent on, I think a blood profile even from your regular old Pediatrician can maybe provide clues, if you look hard enough. I still need to find out what MPV is. Does anyone have any suggestions on where I could look? Also, Calire and Caz I'm sure with all of the testing you have done it has been determined if your kids are over or under methylated. I believe Kurt is over? Is one or the other more common? I am particularly interested in this since I am reducing the Clonidine, and stopping all together slowly. I think I may give oldest a little more inositol (in addition to what he is getting in the TS Plus-12 capsules a day) and see the effects if it looks like he even needs anything more. He's doing really great right now, but we all know how that goes. I know Cheri has said Inositol is pretty safe, but does anyone advise against trying this in very modest amounts without testing/supervision by physician? I would not do this with youngest son at all-except for Bonnies vit. which I haven't even started him on yet. Just taking all of this slowly. Marie, maybe some of this will be interesting to you too, since yousaid you haven't started testing yet either. Awesome about your compounding success Claire. Your son owes you a big hug! And how nice, it even comes with a little savings.

Marie & Caz, This is the first time I was able to sign on here, I think the site is not working quite right. Marie, I am finding I am obsessed with trying to find clues in this whole picture. I think there should be a term like "Mom's who can't stop" Syndrome. I was sure a lot more calm when I bought Dr. Jerks (NEURO) explanation of this disorder. ""Give them clonidine and they will out grow it, if it gets worse give them more clonidine". I don't know if you remember my talking about my youngest son having an increase in tics about 2 weeks ago while roller blading (flashing lights?) well he ended up having a sore throat body aches etc. In about 24 hours he was better but a little hoarse in the morning and not 100% for about 1 week. Then, one week to the day of younger son not feeling well, oldest starts with same symptoms. Older who eats everything while younger who eats nothing ALWAYS get sicker for longer than non-eater, which I have always found so puzzeling. So I take them both in for cultures. Oldest ones comes back positive for streph, youngest is negative. The nurse said kids can recover from streph without an antibiotic. Pharmacists said not usual. Oldest had a few head shakes, which has been absent, with this infection, but both seemed to throw it off quickly. Now I'm worrying about yeast (amoxicillan) which they only put oldest son on, and I definitly saw an increase in tics especially with youngest at onset of this, and wondering about PANDAS. It certainly has not been a crisis, but I am so much more anxious watching for every possible clue, then I used to be. I had to laugh when you said "remember to take care of yourself too," Marie, as I am probably the one who is most out of balance right now, hands down. Caz, I have a few comments on the labs, but I'm running out of room, as is normal for my postings! Guess I'll have to do another one. Kim

Caz, This all gets more confusing by the minute. I assumed maybe he hadn't had a chance to utilize the B6 yet and it was normal to have a high level when supplementing. After reading the article you posted, maybe he can't utilize it. I wonder if someone else could post what there kids blood work shows, and how much they are supplementing with and how close to the blood work it was taken? Maybe the P5P would be a better way to go. I printed the article Claire posted the link to, by William Walsh of Pfeiffer. What interesting reading. Caz, since you have current blood work handy,(and please anyone else who does) I was wondering if you would mind comparing notes. younger son, has: High MPV 10.9 Ref range 6.5-10.5 I can't find what this stands for- I asked Ped and he didn't know, and no I'm not kidding. #1.Neutrophils 34.2 Low ref. range 41.0-61.0 Low neutrophils-lack of B12 or folic acid or autoimmune diease -Lupus or Aids. Another site said-low count may inicate a compromised immune system, or depressed bone marrow. #2.Lymphocytes 56.1 high ref. range 32.0-52.0 High lymphocytes-viral infection affecting immune system, some types of leukemia. #3.WBC low 4.5 ref range 5.0-14.5 I think this said -usually indicates a healthy individual, but I guess I did'nt write this one down. #4. zinc was 76 range 70-150 #5. B6/ P5P was 48 Expected value 5-50. This son takes a multi vitamin only, cheap kids brand.He's been taking these for a long time, way before I knew any better. He does drink a carnation Instant breakfast every morning that has quite a few vitamins in it, but other than that, his diet is very limited, and not very nutritious. Oldest son: #1.MPV 12.4 high range 6.5-10.5 Both boys were slightly high here. #2.Neutrophils 44.7low range 47.0-67.0 both boys were low here however the range listed is different. I have no idea why, same lab. #3.Basophils 2.3high range 0.0-2.0 Heavily involved in inflamitory response and allergic reactions. (this is the son who has the nightly itching with welts) #4.alkiline Phosphate 364High Ped. wrote off as "growth spurt" #5. Under General Chemistry A/G Ratio 2.2High reference range 1.1-1.8 I don't know what this one is either. #6. zinc 91 limits 70-150 #7. B6 P5p 103 high expected value 5-50 This is the son who is currently taking Bonnies Vitamins-approx. 12 per day of TS Plus. I guess after spelling this out here the only two common "out of reference limits", are the MPV and the Neutrophils. If any one cares to comment, great. However, I don't think these are very significant, since there is a wide range of normal for these tests, really curious if anyone knows what the MPV stands for though. kim Kim

Hi All, I had my appt. with the boys Ped. today and he totally blew off the high alk, phos. level. I'm not saying he's wrong, actually I was relieved to hear that it is not an uncommon level in kids my sons age. BUT i'm not throughly convinced it's that simple either. Thanks to your recommendation Claire, I visited the Autism web site and someone there posted a link to a very compelling article regarding Celiac Diease and high alk. phos. levels. Again, like the TS symptoms, if this is an issue with my kids-it would be mild. They talk about small stature-my boys are really big for their ages, and a whole bunch of really nasty problems, that I don't really see, but if they have a sensitivity, some of the symptoms make sense too. Right back to where I started. We need the testing. On another link she posted, it said kids have a much higher level than adults during puberty. The Ped said they don't worry about it until it hits 500 due to growth factor. I still think the best place to start as FJ said, is with the Pyroluria testing, and the yeast, since one of my biggest concerns is youngest sons horrible diet. I have been holding off on giving him any vits. since I thought it would give a clearer picture for any tests. Ped will not sign for yeast test I order myself. The neurologist that I had the "falling out" with sent him a letter regarding my dismissal from his practice. This did not help me in getting him on board with anything I'm trying to do. I wish I could use bad words right now, but that won't help I guess so...If anyone knows how I can get yeast tested without a Drs. signature, I'd appreciate it. I am in the process of trying to switch from Health Plus to Blue Cross, I think Claire said they cover some of these tests? Also, I won't have to kiss (oops) I mean I won't need a referral to what ever Dr. I feel is best to help me with all of this. Thanks Tons!

FJ, Thanks for your reply. I am very fimiliar with your sons story and what lengths you went to in finding help for him. It is an amazing story. I'm just wondering if you would still recommend that I have the pyroluria test done, since my sons b6 level shows as 103, expected value is listed between 5-50. The notation says "the elevated pyridoxal phosphate with elevated pyridoxic acid may represent dietary supplementation." He had taken 5 of Bonnies vitamins (25mgs of B6) the night before the test, and we used first morning urine. The test was done through MAYO labs. I was really happy to read your post, as you have said the treatment for pyroluria is very effective. If you still think this is a possibility, I will order the test for both sons right away. Kim

Hi all, I received the results of my oldest sons Lab work yesterday afternoon. The office faxed it to me-no call from the Ped. I was really interested in comparing it to my younger sons, which was back about a week ago. There are a couple of out of normal range similarities, but what I'm really concerned about right now is oldest had Alkiline Phosphate level of 364. Reference range is 42-121. I was wondering if anyone had run into this with their labs. From what I read last night, it could be scary, or just due to a growth spurt. I did'nt really see anything that would directly link it to tic, allergies etc. It seems to be a liver enzyme, or something to do with bone growth. As I said, I did'nt talk to the Ped. and I think if he thought it was something important, he would have called before allowing the office to fax the results, but I think it is definatley something that I need to get to the bottom of. Any input would be appreciated. Kim

http://www.greatplainslaboratory.com/confe...ce/Laidler.html Just thought someone else might be interested in reading this. It has alot of discussion about vaccinations, mercury etc, in regards to autism and autoimmune function.

This thread has been so helpful. I was so glad to hear from you Dara. It's nice to be in a place where you can see past the scarey thing and just enjoy your sons. I felt the same way about the tics, when ever my sons were having them and were in the spot light for something. I found as long as they choose to be there, they were fine. However my youngest is quite shy about some things and walking up to get a certificate for the honor roll, in a quite gym with parents present, seems to undo him and will bring on shoulder shrug tic. At first he tried to tell me his clothes just felt funny, too sloppy on that side which may be what he is feeling, still looks like a tic to me. I'm grateful he does'nt have learning difficulties, and I feel ashamed when I sit there hoping he does'nt tic. Also, Little League has started again, and last Sun night he started with a virus? achy back, neck, little sore throat etc. and he started to tic. Now, I feel pretty confident the virus brought it on but we will see in the days ahead. Anyway, parents watching little league games really scrutinize the kids out there, and I hope the head nod passes. It probably botheres me more than him though. It's a pretty gentle head nod at least, doesn't seem to hurt him. I bought him chocolate almond milk last night. He hated it, but he won't touch a nut to save his life. One of the few sources of protein he gets is from peanut butter though, so go figure. I will try goat's milk now (thanks Alison) Also, I bought a new EFA last night, flax and borage combo (thanks Cheri)) for oldest son. His mood was wonderful tonight. He took the first two today. I hope maybe some of the irritating hyper type actions will be better with this than the fish oil. Wishful thinking? For now I'll just say "positive thinking. Alison, my oldest gets so sick of me saying did you take your vit. at lunch today? "That syrup has corn products", No you can only have Juicy Juice etc. I'm sure they do feel like they're being punished. I think that may even be part of the reason oldest has been so annoying, he's worse around me than his Dad (who will still stop for slurpees) so you know who the bad guy is. Not fair, but I do think-very slowly, we're making small steps in the right direction. I have chosen to keep youngest son off of anything but his regular old multi vit. because I thought it would be better for testing. I go between getting him a better quality vitamin, removing things from his diet, putting him on the EFA's or doing all of the testing on both. Good days, I really don't feel it's necessary, on a bad day for either one, I wish we had every test in the world here NOW. If only I could just have a Dan Dr. right around the block, this would be alot easier. Also trying to figure out which tests for which son is the most important, can make my head pound. I guess you all have been through most of this, so thanks for starting over with a newbie. Claire- I have been through some of your old posts and I can't tell you how useful your input has been, right down to what tests you had and from where. You can't imagine how much that has helped. Thanks again. Oh, the lady at the Health Store said giving evening primrose with borage was'nt nescessary, as they had the same effect. Should I buy that seperatly anyway? Kim d

Ausclare, If you do PM Heather, would you please post the information here? I am interested in this product also, and I know there are some other "new" people here interested in yeast issues too. I read what you did, and it sure sounded positive, and a lot less of a hassle than the nystatin, with the strict diet restrictions. Thanks! Kim PS I read the links Claire posted and then searched some more on Pub Med and it looks like a lot of studies have been done on the effects of antibiotics on candida colonization in the intestine, at least in mice. I wonder why this condition is not really recognized in the general medical community.

Karen, I am one of the newer people here, and I think yeast testing is really recommended by most, although it is not an issue for all. If you go to the message list and look for a thread regarding yeast, you will probably find every thing you need to know. I tried to have yeast testing done last week through my regular Ped. and they said the two labs that they use for tests that can't be done locally don't do yeast testing, so unless you have a specialty Dr. you may run into what I have. The deal with yeast seems to be; We all have yeast in our systems and the good kind is beneficial, but when you have extensive antibiotic use (I think one article I read said more than 4 times per year) the good yeast can morph into a bad kind that gets "outta control", and can make you crave sugars and carbs, because that is what "it" feeds off of. As this yeast grows, it actually grows little feelers which can perforate the walls of the gut, thus allowing undigested food particles to enter the blood stream and trigger an allergic reaction. Also, this overgrowth can interfere with the absorbtion of nutrients and tax the immune system. There's a little more to it than this, and I'm sure others could explain it better, but that might get you started. This issue really caught my attention since my 8 yr. old will climb mountains to get to sugar. He also had many antibiotics when he was younger and started eliminating most foods from his diet around 15 months. Dr. said he was just a picky eater and manipulating me. At 15 mos.? I still want the test. Also, if you search Candida on the internet-you will find a lot of info. Kim

Andy, Yes we lurkers are very much interested in every step of your process! Not to mention just wanting to hear how your little guy is doing. However, I know how much time posting takes, and time must be in pretty short supply with everything you have going. Even when things aren't too bad, you don't know what's around the next corner, and I learn something new every time I sign on here. I will be praying all goes well with your third treatment. Maybe when things level off again, you will be seeing some dramatic improvements that stick. I don't think there is a DAN Dr. anywhere close enough to be practical, but my sister-in-law lives in Florida. If we decide this is what we need, we could always stay with her family for a couple of weeks. I have also considered Pfeiffer, Immunio- recommended a Naturopath about 50 miles from our home, and I located a lady who looked like she had wonderful credentials, but she said she did muscle testing and made a remark like "I used to have a machine around here somewhere". I may have misunderstood her, but it didn't instill a lot of confidence. Kim

Hi Everyone, Well, we ran out of Carnation instant breakfast, so I decided not to buy anymore, since this is when my son drinks the most milk. His tics got worse. I mentioned earlier that he had been playing game boy, and the roller blading rink had all of the flashy lights, so I didn't know what was going on, but yesterday he slept in the afternoon(unusual) and said his throat felt a little sore. Tonight we went grocery shopping and he was miserable. Aching legs, back, head and after we got home, he asked for the waste basket by his bed because once again he felt sick to his stomach, and he said his throat was really sore. I don't know if he is starting a virus, streph or what. Oldest son does not have a tic in sight, but man the MOOD. He is 12 and I'm wondering how much puberty may be playing in all of this. He has a shadow on his upper lip and his voice is cracking and getting deeper. My guys are both really big. Oldest is 5'7" and about 150lbs. Youngest (8) weighs about 82lbs. and is the tallest in his class, he is a fall birthday so he is almost a year behind some of the kids. If zinc contributes to growth, we may have to be careful! Alison, we were having dry nights, when the milk intake was reduced, although he was still eating his string cheese sticks, I also kept him away from his sugary, artificially colored drinkable yougarts. Oldest still itchy at night, I think I'll make an appt. tom with the local allergy Dr. for food testing. It may not be the answer, but could give us clues. Can anyone tell me if they would order the yeast test through Immuno(blood) or Great Smokey's (Urine?) I guess at this point I'm a little confused. Kim

Chemar, I always thought the angle you came from with the true TS and the possibility of a different subset, was because there is an identifiable family history, and this makes sense to me. I have a hard time believing that more of us would not have someone who remembers a close family member who had tics. A transcient tic, I could understand, but not vocal and motor tics for more than 1 year, which seems to be the general rule of thumb, if heredity is a factor in identifying true TS. I do believe a genetic vulnerability plays a part in this whole spectrum. Kim

Claire & Alison, Claire, thank you so much for the info. on the zinc. I will ask about it, but I suspect the Ped is just assuming what we did and that it is on the lower end of normal. I don't see where copper was even tested. Calcium was 9.3 Ref Range 8.6to10.6, Magnenesium 2.1 ref. range 1.3-2.1, and P5p vitB6 48 Ref range 5-50. I thought all of these were in the high normal range, but now I wonder. Maybe low zinc is the problem, or he is unable to absorb the B6 cal/mag, due to a deficiency in something else? I guess I am really getting nowhere. This blood work was only done due to the fact that I wanted to make sure there was nothing medically wrong, before I started vit/supp. as Bonnie says to check with Dr. first. We may just end up running into Dara at Pfieffer! I agree, allergies, low antioxidant levels, and deficiencies in something, seem to be a common link here. Alison, it sure seems your oldest and my youngest have some common issues. Can you tell me how old he is? I took youngest roller blading last night and was noticing all ot the head nods and neck movements. Subtle but there. This place is full of flashing lights, disco ball laser beams etc. I wondere if he'll be worse today. He has also been playing gameboy over Spring break. I'm waiting for blood work to come back on oldest. He has been on Bonnies vit. in varying amounts for quite a while now. Will be interesting to compare. Kim

ad ccl, Another similarity, the dreaded pull ups. Maybe I should get him off of milk, so hard -as I'm afraid he'll starve. Another wonderful poster said she just had to get to the place where she decided, no food was better than bad foods, and it worked-along with some other changes. Both of my boys have been on a considerable amount of antibiotics also. Lot's of streph when they were younger. The thing I find really curious is the way my youngest son just started eliminating foods at about 15 months. Before that, he ate everything offered really well. I remember 20/20 or one of those shows, did a show on what they called baby anorexics. Some of these toddlers had even started refusing water. They were really puzzeled as to what has started this disorder. I am too. I thought I finally had enough info. to get started with some testing. I got my boys up nice and early to get to the lab, to have a first morning urine collected for the same yeast test that Immuno labs does. Late this afternoon, I get a call from the Peds office, telling me Mayo, or another Lab they are authorized to send away for labs that can't be done locally, DO NOT DO ANY YEAST TESTING. They said if I wanted to pick up the specimens and pack on ice and mail to immuno, I could do that. So I call Immuno to get the packing instructions, and they tell me they only do yeast testing with blood. I was put on hold, and cut off no less than 4 times. When I did speak with a person, they were really helpful, but all in all, it was a very dissapointing day. Kim

Hi Cheri, I entered a yes on the other site. However, I don't believe, at this time, that Tourette Syndrome is necessarily an accurate diagnosis for either of my boys. I think if I were to try to enroll them in a clinical trial, they would more likely fall into the chronic tic category. The name someone chooses to put on this disorder is really not a big issue to me, but the lack of thinking "outside of the box" within the medical community is. I have come to feel that the neurologist who gave us this dx, does not really know anything about it, and if someone stood to make a great deal of money from it, i.e. large drug companies; it would probably be found that the remedies that so many are pursuing here, have at least as good, if not far superior results, as the drugs that help control symptoms. Kim

Hi Claire, After reading a couple of the links last night, I kind of think it would be unlikely metals would be the source of the problem, if the skin is the last to excrete due to kidney and liver overload. I can't see where the level of zinc (20 TS PLUS is max, which we've never reached) and at that, he would only be getting 20 mg zinc. but I guess you never really know without all of the tests and challenges. I really need to switch the fish oil to a different combo to see if that makes a difference. I looked at WalMart at the Spring Valley? line and I couldn't find evening primrose, I did see a fish oil/borax. I really don't know much about the bowel habits, except he doesn't complain. I would be afraid to even go there ,because he gets pretty sick of me watching, and asking questions about how he feels at different levels of vit. and how he's feeling being off corn products, red pop, slurpies etc. Is the air cleaner in your room helping? Most days he's willing to try just about anything, but he really doesn't like to talk about any of it much. I get pretty short answers, which is fine for now. The salt bath is something I have thought about before too. Thanks for the response on the yeast. I will have the labs done tomorrow morning. I think I read here, that is supposed to be first morning urine? The lab order does not state that. Kim

I bet I'll be up all night agian! This information today was really interesting to me because my 12 year old son has been taking Bonnies's vitamins and marine Lipids in varying amounts since late Jan. His tics are minimal-2, head shaking, and bruxism which results in sharp points on his lower front teeth which he will run his tongue over, resulting in a very messed up and painful tongue. So while his tics are minimal and usually one or the other, they are both painful. I am starting to wonder if metals are more of an issue than I thought. After reading Andy and Claires posts, about itching and rashes; two things that resulted in my reducing the vitamins, because I thought they may be contributing, and a trip to the peds. office. I'm wondering if the combo. of vitamins and the zinc, did cause mercury or one of the other metals to come out of hiding. When I stopped the vitamins on a Monday- by Wed. he was totally out of control emotionally, and the bruxism thing was back with a vengence. That is what happened for the 3rd or 4th time when we have reduced the vitamins due to stomach flu and bad cold-no appetite, couldn't take the vits on an empty stomach (bruxism returns in 24 hours). I gave him 9 of the TS PLUs and 1 fish oil every day since. Bruxism gone, head shaking minimal, itching still there, but managable without benedryl. He stated at Grandma's house the night I stopped the vit/supp. with no itching,(Tues) so I don't know if it was something in our home or the lack of the vit. I wonder how many people think they are getting a "bad result" when they work up to a level of the vit/supp programs, when actually they are just starting to help the underlying problem. Let's say the vit. were pulling at least a small amount of the metals into his blood stream, and causing the itching and the whelty rash on the side of his face and down the side and back of his neck, (he was taking 16 TS Plus and we had just gone from 2 to 3 of the marine lipids) when I stopped them, is there a possibility metals could have started settleing. He finally said "I need the vitamins, to heck with the itching". By the next day he was fine and the brux. over the next two days resolved. We are just doing the yeast testing this week, the same one immuno labs does, but my Ped ordered it for me reluctantly and I'm wondering if this is bad timing since the sugar intake was high over the Easter Holiday? Could this give us an artificially high reading? The Ped said the itching is winter dry skin, although his skin does not look dry. He said something about a carotone? rash and asked if Dad had anything like it. Runs in families? I didn't think it made any sense but now I have to look it up to see what I can find on this and if it could play any part in this puzzzle. If anyone knows of a reason why none of my reasoning makes any sense, please tell me. So many of you are so much farther along, and I really value your thoughts. Thanks, Kim

http://www.cfs-recovery.org/mercury.htm Claire, I just scanned this, thought there might be something of interest here since you mentioned having fillings removed. Kim