Claire

Hi Arthur, First of all, the normal allergy tests (e.g. the IgE/Rast blood tests and the skin prick tests only pick up immediate food allergies and don't pick up food sensitivities that can cause tics. www.elisaact.com does an IgG blood test that does pick up food sensitivities. As I posted, my son showed allergic/sensitive to wheat on both tests, but the IgE test didn't pick up milk/casein, which the IgG test did, and removing milk greatly reduced his fidgetiness. The elisact.com test (needs a doctor signature to run it) covers foods/casein/gluten for $300, and an expanded list including artificial ingredients/molds for $600. From this survey thread and your own experience, it sounds like you get the correlation--and I am sure you know that food allergies are highly inherited. By the way, with beer it could be the barley. I personally am allergic to barley and remember in my young adult days that 2 beers made me exhausted for the whole next day. Needless to say, I stopped drinking it after figuring this out. As for elementary school, I could get on my soapbox all day about how ridiculous it is that they have candy machines there, it is infuriating! At our elementary school, both the school and the daycare used candy as rewards. This is where the IgG test came in. Once I told the teachers in school that he was allergic (the word 'sensitive' is too gray for them) to certain foods, this greatly solved the problem from a control standpoint. In his case his sensitivity to corn (means no corn syrup, and almost every packaged treat out there had corn syrup), milk (ruled out milk chocolate) and wheat (cookies, cakes) meant that they finally just stopped giving it. If you have this in hand, you can also talk to them about trading food at lunch--your child is really too young to self-manage this. In our case, there were still slips, but less often. Our biggest problem was that the teacher didn't understand what 'wheat' was and kept offering him wheat and pastries and debated with him--saying they didn't have wheat in them. Too wierd. What we did was that everytime he was offered something by a teacher, or at those never ending birthday treat cupcake days, class parties, he would tell me and we would offer a treat substititute. (I wouldn't do this for traded food offers though). I hated giving the sugar, but it was better than all the artificial stuff. An alternative could be points toward a prized toy. This helps motivate the child. In any case, I gave the school the list. I also made an effort at in-class parties too bring something he could have (e.g. potato chips with no transfats, fruits...), and provide the daycare teacher with alternative foods. Jeff has even posted a site with all natural candy for times like Halloween where it feels mean to deprive them of sugar (what a culture we have!) Claire

bumped for guest.

Allergies are extremely common (based on the posters here), whether it is TS or another type of tic syndrome. Here is a survey thread on food allergies. As Chemar points out, plenty of environmental ones also, e.g. dust/mold. http://www.latitudes.org/forums/index.php?...p?showtopic=794 Claire ps, it is good to take a cyber name here, even if you don't register, as we can't track what you have told us before about your child otherwise.

No, but capryllic acid made my son very nauseous, and as you know, it is an antifungal also. After 3 months, it is quite odd, but maybe she developed an allergy to it? Is hers a liquid? Ours is, and it has artificial color in it unfortunately--maybe she is reacting to that? I had to pick the lessor of evils, and am glad he is done with it. We are retesting next week to see if it made a dent. Claire

I certainly wouldn't punish for rages, it seems like it would feed them further. As Chemar said, I would go with your instincts. Behavior does need boundaries, so difficult to manage that one. Strep is a bacterial infection. Tonsilitis is any kind of throat infection, including strep. If she gets it a lot, I would recommend that you have the doctor run a throat culture now, in case it wasn't totally resolved. Treating unresolved strep with antibiotics can reduce tics/ocd. If she is on antibiotics a lot she can have secondary issues with yeast also. Or low zinc, which makes her susceptible to infections. They have specialists (MDs) that run all sorts of tests including food sensitivities. There is a list at the top of this thread. From all that you describe, there is a good chance she has underlying immune issues. These can be treated. Good idea to scan the threads for ideas and success stories. Claire

I only give him iron about once a week, though I would like to do it twice a week. When I review his diet, he doesn't get it from other sources. Most kids have iron fortified cereals for example, but he doesn't have cereal (except every couple of weeks, and it is not fortified.) Anyway, I checked it with his DAN doctor, and he agreed that it was a good idea. Just like magnesium, I give it once a week or so (and I also checked this with our doctor). I just think that other than copper (because I know his zinc/copper ratio is off), that bodies need a balance. Not everyone agrees with this, I know some say to stay away from iron. But for example, there was an article on Braintalk on low iron and adhd... jcc posted it. The article link doesn't seem to work, so I have the Braintalk link. My son doesn't have adhd, but it just points out to me that I want the balance. http://brain.hastypastry.net/forums/showth...read.php?t=4290 -------------------------------------------------------------------------------- This article may connect the dots between gluten sensitivity and iron deficiency and ADHD. You must register, but it is free. Thanks, Anne. Low Iron Stores May Contribute to ADHD http://www.medscape.com/viewarticle/496088 NEW YORK (Reuters Health) Dec 15 - Iron deficiency in children may contribute to attention-deficit/hyperactivity disorder (ADHD), according to the results of a small study. Based on these findings, researchers suggest that iron supplementation may benefit ADHD children. "Iron deficiency causes abnormal dopaminergic neurotransmission and may contribute to the physiopathology of ADHD," Dr. Eric Konofal, of Hopital Robert Debre, Paris and colleagues write in the December issue of the Archives of Pediatric and Adolescent Medicine. In a controlled group comparison study, the researchers examined iron deficiency in 53 children with ADHD and in 27 matched controls. Main outcome measures included serum ferritin levels, used to evaluate iron stores, and Conners' Parent Rating Scale (CPRS) scores to measure severity of ADHD symptoms. The children with ADHD had lower mean serum ferritin levels than controls (p < 0.001). Forty-two (84%) of the ADHD subjects had abnormal serum ferritin levels (lower than 30 ng/mL) compared with 5 (18%) of the controls. Extremely low serum ferritin levels (lower than 15 ng/mL) were found in 17 (32%) ADHD subjects and 1 (3%) control. The researchers observed a correlation between low serum ferritin levels and more severe general ADHD symptoms (p < 0.02). Low serum ferritin levels were also significantly correlated with greater cognitive deficits. "Iron supplementation has been reported incidentally to decrease the CPRS and cognitive deficiency in children with ADHD with an iron-deficient diet, although serum ferritin levels were not measured in this study," Dr. Konofal's group notes. "We suggest that iron supplementation might also improve central dopaminergic activity in children with ADHD, decreasing the need for psychostimulants." Arch Pediatr Adolesc Med 2004;158:1113-1115.

Ronnas, Ha, I think we all tried a bunch at once, just to try to accelerate things. But you and are are in sync in that in the end, being methodical has advantages. I definitely space things now, but I still get impatient. Alison, Yes, for a few people here, certain EFAs actually made their child's tics worse. This doesn't mean it is the case for your child (mine did fine with them), just that it really is best add them in when other things aren't going on. But I know this is easier said than done----A few times I have had to start over myself to figure out what caused a particular reaction when I did multiple things. I am mostly concerned because usually you only get one chance to do a no-screens week, and both the kids and the parents need to see the improvement--or not--to make the important decision on whether you make adjustments. (e.g. to justify the expense of an LCD TV). Claire

Hi Alison, Please be careful about adding new supplements while you are doing the no screens test. If his tics increase due to a reaction to the supplements. (eg some kids react to EFA's and some of the homeopathic solutions and other supplements have a period of worsening before improvement--or so I have heard. I used to recommend doing a lot at once (I have a thread on this) but now I think it is best for no screens to do it on a week with no other changes. It is tough to do things one at a time--we did this with supplements and I got so impatient, but either you can make things worse and then think no screens doesn't matter, or, like marina, you can find something else that does work, and thing it may be the no screens. There is no 'detox' from no screens, so you should just see improvement as the days go by. Claire I am glad you have a reward set up.

Marina, That is great to hear! I am so glad that you have tested it. I would think that after a month of having screens again, you would know by an increase in tics, so it really does sound like the osteopath visit worked wonders. Your son is quite fortunate now in not needing the other restrictions, either TV and salicylates. (Heck, artificial junk can't be good for anyone!) Really really great news! Don't you feel better that you aren't doing unnecessary restrictions now? Our biggest thing was supplements, and I think I have gotten them to a more livable level now. No getting around wheat and milk for us though (excema, stomach aches, and congestion) but if I just take the time to cook, the choices are okay. Ausclare, Sorry about your husband's job situation. I know this is an additional challenge for you right now, and I hope things resolve quickly. Claire

Also, I would observe closely over vacation. If she is doing much better, then the pressures of school may be the biggest near term issue. Claire

Thanks Heather. I googled it and it has calcium carbonate, I believe this is the best form (other than MCA for Osteo). I couldn't find what it was sweetened with, can you let me know? I found a chewable Country life Cal-Snack. (Vanilla-Orange). Each wafer has 500 mg cal carbonate/citrate and 250 mag oxide/aspartate. I tried the chewable not great, but it saves 3 pills, so worth it. Did someone say magnesium aspartate was bad? Claire

Lorraine, How is her sleep? Does she go to sleep easily and is she getting enough? For those with moods, sleep can really affect it tremendously. I too felt it was very unfortunate to have my young son listen in, so we simply worked around it. No one debated this. In fact, in the very beginning, one clinic (teaching hospital) said to be prepared for 2 hours as all the med students participate in the patient visits and observe/practice. I flat out refused to take him--how completely ridiculous that sounded to me. We went other routes. For his pediatrician, in the beginning (before the alt doctor), my husband and I made an appointment without our son to discuss it. Since they are not prescribing meds, there was no issue for them. I refused to discuss this in front of my son. For a doctor that needed to observe, we discussed it beforehand via phone, or I faxed the information. Then we didn't discuss it in front of my son. Our DAN doctor (alternative med doctor who treated food allergies and checked for vitamin deficiencies) had our son at the first visit. After that, he agreed taht I didn't need to bring him--the treatment was based on tests. The additional benefit is that my son didn't have the trauma of over focusing on this matter. I agree with Ausclare and Chemar, the first thing I would do is stop the artificial ingredients completely (Feingold, or Whole Foods/Wild Oats shopping). Then I would buy an air filter in case dust/mold is doing this. Finally I would get an alternative doctor to uncover food sensitivities or other issues. Here are lists throughout the US. I like the DAN/Environmental doctors. But I would call first and see if they have treated children with your daughter's issues. http://www.latitudes.org/forums/index.php?...p?showtopic=565 I fully believe that this is treatable without meds. It will take time and commitment from you, but will ultimately free up your energy and time. Claire

Carolyn, You can get online and look at ingredients for the fast food places. And even call them and they will tell you the exact ingredients. We have Good Earth and Whole Foods. For sure Whole Foods avoids preservatives. I am not sure if they look at secondary sources as Feingold does (e.g. palminate may or may not have a preservative in it they don't know about), but I personally don't worry about it. Some people it may matter, and I can't speak for them. They have a deli and great soups. Unfortunately, most soups have cream or wheat, which limits me, but I can usually find one. By the way, since I stopped milk for the casein months ago, I developed lactose intolerance too, on those rare occasions that I cheat. How odd. You could call Good earth, but I think the philosophy is the same. We have Mexican restaurants that advertise only fresh ingredients are used. You would just need to call a restaurant you like. If you are having veggies and a meat dish, you may well be okay. We don't go out that often, more for financial and convenience reasons, but occasionally we do. We did used to do a fair amount of fast food and those days are long gone--actually that stopped with the wheat issue. Carolyn, you haven't commented: Are you doing better since the food elimination? Claire

Whoops, it was late when I read your post, sorry for the error that is was your brother's child. My brother has a 15 year old child with OCD, though like Chemar's child, he is much improved. Oddly, my brother reallydid nothing for him but flax seed oil, so he was one of the fortunate ones that basically improved with puberty (many with tics do also, but I sure wouldn't want to go through middle school with just crossed fingers... As for the behavioral aspects you mention, they tend to improve with the other health measures. If you limit TV/computer, he may be more interested in going out, hard to say. Claire

Coolshop, Chronic ear infections (like recurring strep or any recurring infection) can be associated with yeast overgrowth or zinc deficiency. I have bumped a few threads for you. But more than anything, I recommend interviewing and selecting an alternative doctor from the list above. ESPECIALLY if you have a child with autism. The DAN doctors on the list (Defeat Autism Now) are at the forefront of testing protocols to detect immune system issues that can lead to autism, and many here have found that our kids have the same issues. Your description of your son is so common. Though the weight thing to me strikes me more as the sedentary life than any TS condition. The vast majority of us avoid drugs, or had a bad experience and don't do drugs anymore. The purpose of this board is alternative approaches. Please scan some of the survey thread and success stories, like those of Chemar and others. These methods WORK. However, it takes time and a methodical approach to ID what is best for your child. As you read, just post your questions, many here are happy to help out. I wouldn't be myself if I didn't point out that removing screens eliminated our son's tics 100%. For Jeff it was eliminating artificial ingredients. That's what I mean, our kids are different. Good luck, Claire

Alison, Under the direction of our DAN/environmental doctor and later Pfeiffer clinic, my son has been through most of the same testing protocol that they do for autism spectrum disorder kids. He isn't on that spectrum, but it appears that many of our kids with tic disorders have similar underlying issues. For example, their desire for a limited diet is very common--my son had it too in a big way. When we removed gluten and casein, that changed somewhat. But we tested for issues before we did anything. Anyway, he isn't big on proteins either. Unfortunately, the foods they crave are often those they are allergic too. The LCD monitor is night and day for our son. He has had zero tics in over one year, one set from accidental exposure to CRT screen, and none for 6 months before that. I looked at the costco site and my friend was wrong, the LCD monitor they had didn't work for TV. LCD TV's were $1000, but you can now get the SyncMaster TV/computer monitor that Samsung makes for $450. I am not for restricting screens, or even buying a LCD unless you are pretty confident that it is a trigger. That is why I recommend the no screens week--the TV tics can take a full week to resolve! I know how hard it is, many here have had difficulty. Many of us have also experienced the electronic babysitter aspect. That is why I got booktapes and building toys for his much needed downtime. My son has no diagnosis at all. He only had facial tics for a month (never vocal) 3 years ago when I figured out the cause and removed the computer for a long time and the tics completely disappeared--no exaggeration there. Later he developed the TV sensitivity also, so we removed it, and the tics went away completely also. It took us a while to figure out that the LCD monitor (small one, far away in a well lit room) was viable. But someone here (efgh) had a child who was sensitive to the LCD for a time too. I wasn't comfortable letting my son watch unlimited LCD until we treated his mercury, vitamin deficiencies and food sensitivities. He did get fears with strep for sure, so I studied PANDAS a lot. I would still do antibiotics at any sign of strep/fears--the fears disappeared with the strep disappearing 100% correlation. But he is not PANDAS because we cleared it up immediately--mostly because by the time it happened, I had read about it and as you know if you treat right away, then at risk children tend to not get the tics/OCD as a chronic issue. I did one round of antibiotics, but the strep cycled through our house twice (we all got it and my husband's came back (he retested positive) so we all got it again. THe fears came back with the second round and went away with the antibiotics. I personally believe it worsened his yeast. He never had any signs of yeast (as I get), but the Great Plains test showed positive (as did the spit test). Certain compounding pharmacies can make nystatin (liquid or capsules), with a doctor's prescription. I wouldn't treat yeast unless the Great Plains (or whatever test your doctor likes) shows positive. Heather's child had PANDAS and she did the yeast treatment using Threelac with great success. The probiotics are to be given 2 hours after the antibiotics, per our doctor. Vitamins can be given anytime, or at least we weren't told of a restriction. Klaire Labs makes the probiotic and www.needs.com (I use the phone sales) sells that brand. We just buy our brands locally, but I know that I liked the taste of their powder. Some do yogurt, but my son can't have casein. Great Smokey's Lab does an elemental analysis blood test for mercury and other metals. You have clearly read a lot on here and elsewhere good for you. I would read the threads I bumped--others may bump other threads for you. It took a year of intense work for me to get here--with lots of ideas from the board and an excellent doctor. Too much info for one thread! Fortunately, the site editor is writing a book, I am looking forward to being able to refer people to it. Claire

bumped for coolshop and Alison. Claire

bumped for coolshop. Claire

bumped for Alison and coolshop Claire

Hi all, Does Kirkmann only have natural (not artificial) ingredients? e.g. natural mango flavor and natural green apple flavor really does mean natural? I know some have sucralose, but that is specifically called out. I am trying to replace capsules (too too many!) with liquid vitamins. Here is what I found--it would be great if other parents posted palatable liquids for our kids who hate the pills: -Kirkman Liquid Iron Supplement 18 Mg. (we do iron a couple of times a week, just for general health) --Kirkmann liquid zinc, but it has sucralose --Floradix liquid calcium, liquid magnesium and liquid combo (from Jennifer, thanks!) --Kirkmann has Super-Nu liquid mutivite, no copper, has lots of B6, only .75 mg manganese, which I am personally okay with. I haven't bought all these yet. So far: Floradix liquid calcium --good taste, I add a drop of stevia FLoradix liquid magnesium--I don't like the apricot taste Claire Please add any liquid vitamins you know of. I prefer those that have measurable quantities--too hard for me to judge dosage otherwise.

Hi Alison and welcome! I completely understand your wanting to do what works (e.g. the antibiotics). I suspect that they DID kill the residual strep (and it may well have recurred--I have been there myself). Keep in mind that the studies I have seen show that prophylactic antibiotics didn't seem to work. I am betting that the antibiotics killed the strep, but with recurring doses, yeast started becoming an issue. It is a viscious cycle that I have been in myself with bladder and yeast infections, darned if you do, darned if you don't. Recurring infections can be a sign of zinc deficiency. Many many of these kids are deficient there. Some doctors recommend taking nystatin with the antibiotics (as well as probiotics, which you know about). (they can compound a liquid for you). I think the probiotics are critical here. Klaire has a powdered one that I personally thought (and still think) tasted good, but my son wouldn't touch it. Even so, it could easily be blended into an icecream and I am sure it wouldn't be noticed, it is such a small amount. Many came to this board with PANDAS and many found they also had other underlying issues such as elevated metals. The metals depress the immune system, as part of this cycle. I would suggest getting some of the other tests done and seeing what else is going on. Re the TV, have you looked into a small LCD monitor/TV combo? It definitely made a difference for us. A friend told me COSTCO has them for dirt cheap right now. Remember to keep the room well lit. And I sure hope you avoid the video games as long as is possible. Good luck. Claire

Hi Chemar and efgh, Chemar, that is wonderful news for you. I am hoping that after puberty some of the challenges decline. I am especially hopeful that doing the right things healthwise ups the odds. I remember the woman on Braintalk who was still giving her kids. You commented on Braintalk, but when I am there (I do scan it regularly), it seems like only a handful (Ronnas, FJ, Mrs. Doubtfyre and you) are looking at healing the immune system in some way. The rest seem more focused on coping and behavioral methods, mixed in with some meds. That is why I rarely post there, it seems like a different focus. efgh, I am glad that you have found the right balance for you son. I think it is clear from your posts that you are more relaxed--but I assumed it was because you were so focused on finding the solution, and once you did, you felt you could relax, ie that intensity worked out to your son's benefit. In any case, I am glad you are both happier. In our case, no symptoms, but I am still focused on healing. This is because the food restrictions are unlikely to be kept up once he is on his own. So I am seeing what is working. We are about to retest for mercury, yeast, (we have been doing nystatin for about 3 months) pyroluria, and food sensitivities (we are doing rotations, but I cheat on certain things). I am most concerned about the yeast and food sensitivities. We will know in January. Claire

There is no harm in giving them together, many vitamins do this. I just read the absorption is better for cal/mag and zinc at another time. I posted it here. http://www.latitudes.org/forums/index.php?...t=15entry6277 Claire

Citygirl, No way $1500! Sorry, I missed that question. There biggest test is $1015, and you don't need that one. I think the standard foods test is around $300 (like Immunolabs). I just called them because I am ordering a new test right now (coincidentally). The test I got (that I recommend if you want more than foods) was $600, and they said the price hasn't changed. It is called: Comprehensive Analyses (shows number of items they test for in each category) Food 234 (includes GLUTEN, CASEIN and SALICYLATES Environmental Chemical 60 Mold 28 (includes candida albicans) Additive/Preservative 27 Food Coloring 14 Toxic Mineral/Metal 12 TOTAL 375 items tested http://www.elisaact.com/test/pdfs/EAB_Combos_NonHP.pdf It is a big price savings if you order the "Comprehensive Analysis" package vs ordering each block of tests separately. Maybe that is what your doctor was looking at. I will do the $600 one again--it is the best deal. I found out I was allergic to pinene, which is in most floor cleaners. Well, I knew I reacted for the whole day when our housekeepers came in (trouble breathing). I now replaced their floor cleaners and I have zero reaction when they clean, and I am here when they do it. This is the first salicylate test I have seen. The gluten/casein/salicylate test alone would save a lot of trial and error. They test for butter and yogurt, not just milk...you get the idea, lots of finetuning which minimizes what you must restrict. Claire

Hi Lulu, I personally go nuts with all this balancing. Believe it or not, Pfeiffer wants us to do 500 mg cal 500 mg mag, or a 1:1 ratio. I don't think it needs to be exact. We are in the same boat, no other calcium source (except occasional cheese, but I don't think he absorbs it due to casein issues). We do only 500 mg calcium and 250 mg mag taurate, but only because we have so many other vitamins my son would rebel. I would probably like 750 mg calc and 375 mg mag taurate (based on the supplements we have). Actually Pfeiffer says zinc is best given at night--but I think they said it is because it irritates some kids' stomachs. They do b6/cal/mag in the am and zinc/selenium in the pm, and have vitamin C and biotin split for both am and pm. I am a little out of my league here, however, I will ask our DAN doctor at the next visit to get his opinion. I know FJ on Braintalk likes vitamins split. I think it truly varies with the vitamin What I suggest is that over Christmas break experiment with am/pm dosing and see whether there is any difference in the day. Also, I suggest you post to Mrs. Doubtfyre on the Braintalk ADHD board. She is awesome with the biochemstry of vitamins. http://brain.hastypastry.net/forums/forumd...isplay.php?f=86 Not all supplements just stay in for a day. Our DAN doctor said it would take months to correct some of the deficiencies. I know that zinc takes a while. Claire