Irena

Hi, Chemar The biofeedback I am talking about (the only kind of biofeedback available in Poland as far as I know) is in fact EEG Biofeedback. It is thouroughly described, with a picture, at http://www.eegbiofeedback.cz/english/english.php?menu=faq. That's exactly how it looks. Your answer scared me a bit. I started browsing through English language site and somewhere I found an information that EEG biofeedback is imprecise (thus uneffective?) Polish sources say the opposite. I know that biofeedback (EEG biofeedback in fact) came to Poland mainly from Czeck Republic. Those who started doing this here were trained there. There is no big machine (I was wondering why the boy in one of the testimonials you can read on Latitudes used to say "I need to go on a machine". Now I know ). Oh, God! I just hope I'm not wasting our time and money. Staś is pretty bored with it. How can you be not? The same 5 simple games (that you try to play with your brain only) each session. I am more confused now that you are, Chemar. All the sources say it works and among the listed disorders it is supposed to help is TS and tics. But now I don't know if it is just marketing. A few days ago Polish papers reported that the state school authorities decided to buy some biofeedback equipment for schools and psychological and educational children's clinics for kids with learning problems, ADHD, and so on. They say that Adam Malysz, our ski jumping world champion, very popular in Poland, is using this for managing stress. Well, so I have another question now? Have any of you had some experience with EEG biofeedback? And even if you haven't, seeing how it works (the picture shows how it looks, i.e. how far from the screen you are), do you think it is safe for a child with tics to use biofeedback with a CRT screen? I will be waiting for your opinion. Irena

I need your advice. My 11-old son has had over 20 biofeedback sessions. We have them in Warsaw two times a week (before three times a week) straight after school. Sometimes he's very tired after school which of course doesn't help. Yesterday I was happy to notice that there is biofeedback newly available in the town near the place I live (we live in a village about 15 minutes drive from Warsaw - Poland, of course ). I called them and talked to a very nice and competent woman (I haven't seen her yet but she seemed much nicer to those my son works with now and has not a very good contact with; I suppose that is important, too). In fact, from her I learnt and understood more about how biofeedback works than I managed to find out so far. I was happy because that would be great to come home from school, have some rest, get some fresh air and then twice a week go to have biofeedback nearby. But, unfortunately, there is one problem. The woman uses a CRT screen. She says there is not a problem if the EEG did not show photosensitivity. It didn't. But I've read so much here about that it does make things worse. I was trying to suggest that they should replace it with a LCD screen but I don't think they are ready to do that just because of my objections. I'm struggling hard to limit TV and a computer at home which is not easy. At the beginning of Lent we've made a family resolution of not watching TV till Easter and because we did it before Staś did not suspect that this year his health was my main motivator. As for computer we have arrangement that they use it (Staś and his two brothers) only at weekends and we try to limit it to 1 hour. We are going to replace the computer screen for a LCD one very soon. But Easter is over and TV is on again (what a blesses time it was without a TV; the family life more nicer; loud reading in the evenings, some board games, etc.; more talking). What's worse we decided to loosen Stas' dietary restrictions for those two Easter days but it got out of control and he was indulging himself with cakes, milk and other forbidden things (I had guests and was not able to have only what he is allowed to have). The results were immediate: vocal tics back, worse than ever, and some new motor tics (with hands but that seem to already go away). I feel so bad about it. In two days we will see an allergy doctor who's aware of allergy impact on a neurological system (in her book she writes about cases with autistic children she treated). So I hope we will finally determine what we should avoid and I pray that it will not be much more than we try avoiding now. The doctor claims also to be succesfull with treating yeast problem with neutralization. So my question is: should I bother to consider biofeedback with CRT? There is no rapid movements on those "games" during biofeedback sessions; he sits pretty far from the screen and there is no all the exciment that accompanies "normal" computer games (quite the contrary; you get "points" when you're relaxed but focused). What do you think? And they are 25% cheaper which is also of great importance because this is very costly anyway. One could ask if we have some results of biofeedback. I don't know. Things were really good but we did a lot of things (supplements, diet, fighting yeast) so I suppose it all worked. But I also know that with tics we need a lot of sessions to have results and even more to have them permanent (still, I realise that biofeedback does not remove the primary reason of the problem). So maybe we lost a lot of time and money for nothing but that I will never learn for sure if we stop now. What do you think? Have you got any experience with biofeeback and CRT screens? Irena

NOW Foods' Candida Clear is also available in Poland. I wonder if this is a new product or there is someone who has already some experience with it as I am considering buying it. In fact this is the only product I found here that contains caprylic acid. Irena

Yesterday I read a very good book on candida by Leon Chaitow ("Candida Albicans - Could Yest Be Your Problem"). He's not a fun of Nystatine and recommends natural approach aimed at: 1) fighting candida and inhibiting their growth (probiotics, biotin, Aloe Vera juice, garlic, olive oil, caprylic acid...), 2) healing gut tissue (L-glutamine, N-Acetyl-glucosamine, rice-bran oil, fructooligosacharide) 3) boosting an immune system (supplements - all of them our kids are certainly taking: VitC, VitB, Selenium, Zinc, Magnesium. My questions concerns L-glutamine: is it something completely different from L-glutathion that my son gets in Bonnie's vits? I know it must be something different because NOW Foods sell both supplements separately. But how much is it different? In other words, if my son gets L-glutathion, can I add L-glutamine and be sure there will be not too much of anything? My question may sound naive but here in Poland I still act on my own. Although I have some hopes. I found out that there is a representative of Great Smokies Diagnostic Laboratories in Poland (unfortunately not in Warsaw) and they claim their offer includes tests by other laboratories, among them Great Plains! That really sounds good! So I also suppose that may have someone who is able to interpret the test results. So maybe I will finally find someone. They have a special package of tests recommended for autistic kids and kids with ADHD. I suppose, this is something I should be interested in. I have to go carefully through your posts about testing. Irena

Thank You, Kim! I was happy to notice that among the links for testing there was GSDL. They have a branch in Poland and I know some parents of autistic children do some tests there like IgG food sensitivities and amino acid panels. I will have to think it through. Unfortunately, the test are so expensive and I don't think there is any chance to have them made through health insurance. So again, one step at a time! Irena

Thank you very much, Kim! I couldn't answer earlier because we were away for the weekend. We went for a trip to Amsterdam (a sort of a bonus from my husband's company) and the kids stayed with my husbands sister. I'm very grateteful to her but evidently Staś went off the regime for the weekend (forgot to take vitamins, a lot of time inf front of a computer and most probably eating wrong foods). We started taking Bonnie's vitamins a week ago and got up to 10 a day (less during this weekend). I can't see the results (I am always very impatient to have quick results but I have to change this attitude) so we'll be slowly heading for the full dose, i.e. 20 a day (he's 11 and 49 kg). Yes, I would be happy to know your experience and the results. I'm very confused. My husband just called and told me that he got the candida test results from the laboratory. No yeast issue, no lamblia issue (I tested for lamblia as within the last months I heard abut two cases when lamblia were responsible for severe tics in Polish kids; Staś was found to have them two or three years ago and I thought maybe the treatment then was not effective; still, it is recommended to check three times becasuse once they settle in one's liver they are not always present in the gut; every more less three weeks they are "thrown out" and this is the time you can identify their presence; well, maybe Staś hasn't got them although I even attributed his regular worsening of tics to this; lamblia, similar to candida, release toxins and damage the gut tissue resulting in malabsorption) There must be a reason for his magnesium deficciency Is yeast infection always an issue with kids with tics? It seems so. How can I know for sure about Staś? He's really fed up with a strict diet (so am I) I am waiting for the mercury test results. What else shall I check? What about the biofeedback? We've completed 15 sessions but I am not impressed with the results although the tics certainly are not that intense as they used to be, but we also carried out other things, like supplements and diet. I don't want to give up as I know we need many, many more to have more permanent results. Is there a risk that the sessions are not carried out professionally, up to the standards? Well, this is just a software. Is the role of a person supervising it very important? Or, the software itself is sufficient in directing this person's actions? Sorry, there are more questions that you offered to answer, but maybe others will help. This board is such a great place! Irena Spring in Poland at last!!!

One more question... It seems that taurine plays considerable role in supplementing. Could you direct me somewhere where I could read more about it? I read that those who carry heavy phisical activity use it for inhibiting serotonine production. We would like to have something quite opposite... Irena

Hi, I live in Poland, where getting all the right supplements is difficult for me (well, in fact, more expensive than difficult as I can order them via Internet). I have ordered Bonnie's supps and I should have them maybe even this week. Kim, how did you determine what quantity of TS Plus was right? Just keeping close eye on your kids? And a question for Carolyn: I would appreciate if you share with me what exactly NowFood products you use and which you can't obtain with them. NowFood products are available in Poland (and they are even not so expensive), but I'm sure not all of them. But I can imagine if someone imports them here I could try to ask for ordering some specific things for me, too. My son, Staś, takes now 2 Special Two (NowFood) tablets as they were the only I could find with right proportion and content of B vitamins. Well, according to Bonnie's formula he should take 4 of them but as they contain many other things I am afraid to give him more. And they are free of yeast, sugar, and all the bad stuff. I like them because they are so full of antioxidants. Of course I have to give Staś aditional magnesium, calcium (not enough in Special 2), EPA/DHA and some anti-yeast supps. I know one may be reluctant to give specific advise on supps for obvious reasons, but, please, I am so short of information here (I have not succeeded in finding a doctor who would guide me through this natural approach, yet) and you could treat it simply not as an advise but as sharing your own experience. Irena

Chemar, Thank you so much for your words of encouragment!!! They are so valuable! I'm not going to give up, although poor Staś is fed up with so many bans. Yesterday, I have made an appointment with the doctor who did the hair test and explained the results in paper to get more detailed instructions. Maybe she will be the one, although I'm not sure whether she is a medicine doctor or just PHD biochemist (in Polish "dr" stands for both). Unfortunately, I have limited access to some supps that proved to work for you. Well, in the Internet age I could get anything. They will happily send me anything from anywhere but it is SO expensive. I haven't started Bonnie's supps as they have not gone through custom clearance procedure yet. But we started ParaProteX (made by an American company, Calivita), quite popular here recently. It claims to be effective in treating parasites, yeast, viruses... Those "wonder" treatments make me suspicious, but I read many favourable opinions about it. What made me more suspicious is that I couldn't find any information about it on American web sites. Have any of you heard anything about it? What I found very effective in treating ME, i.e. my attitude towards Staś' problem is precisely what is described in words at the bottom of Chemar's posts, i.e. prayer. Without prayer I tend to see things bigger than they are and loose sights of the blessings. Obviously, there have been too little prayer in my life recently. Irena

Thank you, Claire! So no babka for Easter ! This a traditional Easter cake in Poland, something like Italian Panettone. Of course, we can live with that. Claire, how did you get to this stage that you could introduce some foods back? Was it those anti-allergy shots or just time? As for the hair test, we've done it. Unfortunately, they don't test for mercury, but I am almost 100% sure that Staś has it. Why? Among other typical reasons, he's got amalgamats in his mouth! Contrary to his two brothers who have perfect teeth, he has always had problems (I think this may have something to do with Calcium deficiency; the hair test showed considerable deficiency of Magnesium and a bit smaller defficiency of Calcium; those two minerals need each other to be absorbed as far as I know). His dentists used to say that amalgamats worked better with kids and that they were perfectly safe. And stupid of me, I belived that! Only recently I learnt what they meant saying "works better". Amalgamat fiilings do not require so strict dry environment, often difficult to obtain with kids who have problems with keeping their mouth open for long time! That was never the case with my boys. They love going to the dentist (the doctor always gives a little reward) and always cooperate well. I talked to doctors (one of them my close friend) and they agree that now it is better to wait for those milk teeth to be replaced with permanent ones as (1) manipulating with those amalgamat fillings can cause more mercury being absorbed by Staś (2) milk teeth that will soon be gone are fragile and if there is no decay it is better to live them as they are (3) removing them now would may result in not enough space for those permanent ones. I know it will be dificult to combat yeast without dealing with mercury. In fact, the yeast infection diagnosis was based on symptoms alone. I will also have to check mercury somewhere (can it be checked based on urine testing?). But I have to find a doctor who will guide us through all those tests. I still haven't. Doing all those tests on my own is so expensive. As for relation of ZN/Cu, it is too high 15.64:1 against normal proprtion equal to 10:1. What does it mean? Zinc is slightly too high - 172 (should be between 120 and 160). I have to make an appointment for interpreting those results. Should I cut Zinc completely from his supplements? The explanation of the test results say that too high proportion of Zn/Cu may lead to glucose intolerance. I have to test for food allergies as well. It all seems too much for me.... Especially now, when I am observing the tics coming back again. Not so intense as they used to be, but still... May this be because of a week break after 10 sessions of BFB? I could not take him there because I was stuck at home with my younger one who's having infection (someting starting as an ordinary mild infection after 5 days developed further and he got an ear infection and got an antibiotic). Or has it something to do with digestive problems he had at the end of the last week, either because of mushroom soup they had at school for lunch, or an infection? It put me down but I don't want to pity myself. You all know the feeling only too well. I have already written that I decided to share my experience and moderate success with parents on the Polish forum. That is another reason for my low mood. There was no reaction on the board but I got some private mails and they sounded so desperate. And I am not the one to give any advice, because our success is less than moderate and not permanent, as I can observe now, and I feel such an incompetent. So I decided to do what I know best and translate for them things that inspired me to undertake all this natural approach (some case descriptions and testimonials) and, if you don't mind, some summary posts from here - just to make those information available to them if they decide to further it on their own or with their doctors. So, that's all for now. Irena PS. I was having pizza yesterday when Staś was at school. As my two other sons are at home because they are not well I thought I would please them with something which we don't normally have now to make it easier for Staś. And because I suspect yeast problem with myself, I strictly (well, maybe not always) follow the anti-yeast diet. So I attributed my today's low mood to this yesterday's pizza. Or am I going crazy? And the spring is so late this year! It's the middle of March and it is still cold and white outside which is not typical even here.

Thank you, Claire! I have to tell you that your posts, as well as Chemar's (THANK YOU CHEMAR!) have been those most helpfull for me. 80% of childhood eczema was caused by either wheat, peanuts, milk, egg, soy Yes, I've heard that, too. I don't think soy and corn are to blame in Stas' case as we in Poland don't eat them so often as you do in the US (which, of course, does not mean that he can't be allergic to them; many kids are). For well over the month we've been on the anti-yeast diet and we don't eat wheat (only pure rye bread). I have not noticed much changes in his eczema and itching. Almost two weeks ago we removed milk. Well, the eczema doesn't seem to change but I haven't noticed Staś scratching himself recently. So maybe this is it... I've got some questions concerning the diet. (1) The news that the yeast used for baking is OK and does not increase Candida would be a wonderful news. There is such a great selection of flours other than wheat (rye, oat, buckwheat, etc), but one have to use some raising agent to make something edible out of it. Making leaven (sourdough) is so fussy. Fortunately, there is no problem to buy very nice rye bread with no wheat and no yeast. In Polish sources about anti-candida diet, it says that bread made using yeast is forbidden. Yeast must be dead in baked bread but, I thouhgt, maybe dead yeast is harmful too. And now, you say, and Chemar before, that it is just a question whether one is allergic to it, or not, and that it does not affect Candida's growth. It would be really a good news! What do you suggest? Shall I check Stas' reaction to it? It would be great to make no wheat pizza. What about mozarella? I know this fresh is ok as it is not matured, but what about this hard one that is used for pizza? Is it ok, too? (well, I forgot we try milk free diet ) (2) What is wrong with tomato concentrate? Again, in Polish version of anti-yeast diet there is no mention of it. I understand that ketchup is bad because of loads of sugar and vinegar, but tomato concentrate contains nothing except...tomatoes! No additives, just much less water comparing to tomato juice. Could one please explain this to me? I've just received Bonnies TS Plus Control. Well, not quite.. I have to complete some clearance formalities. I think we will have it on Monday. So far we've been using Special 2+ additional EPA/DHA+Magnesium (in a form of hydroasparaginian, reccomended by doctors as well absorbed by a body; Magnesium taurate is not available in Poland)+Calcium+Citrosept (grape seed extract)+Lecithin. Bonnie's TS Plus is supposed to replace all that except for EPA/DHA. As things are quite well now, I have mixed feelings about giving up Special 2 as it has good proportions (and amount) of B vitamins and is so packed with antioxidants and other wonderful stuff like Chlorella (reported very effective in removing Mercury from a body), amino acids and others. Here is the link for the full content (don't be taken aback that it is a web site for bodybuilders, but I culd not open today the NOW company (American) web site. Could anyone have a look at it? http://www.performancenutritionals.com/sto...nal_information It seems that there may be too much of some things... And the last news. I decided to share my experience with parents at Polish Tics and Tourette's forum. I described all the steps we have undertaken and the results. I also directed them to this place, if they know English, or, if they don't, to Polish forum of parents with autistic children who seem to do their homework thouroughly (their forum is so much alike this one). Irena

Thank You for such a warm welcome! I just wanted to mention that the YEAST that is used in food ie Brewers and Bakers yeast is not a problem for most people. THE BAD YEAST that we talk about here is Candida albicans, which is a fungal parasite. It is NOT the yeast used in foods. It thrives on sugars and starches, and antibiotics cause it to flare. Chemar, it is really intriguing what you have written about good and bad yeast. I wondered why dead yeast in bread (it has to be dead after baking in high temperature) can cause problems. The other thing I wanted to ask about is something you call Threelac. We have Trilac. It is a probiotic that doctors prescribe together with antibiotics here in Poland (or Lakcid, or Lacidofil, but those two have only two types of "good" bacterias while Trilac has three). But some time ago I noticed that Trilac capsules, apart from 1600 million bacterias, have some additives, e.g. powdered milk and yest exctract (!). So am I to fight yeast with yeast?! Could any of you check it, please, with your Threelac. And is is the same? Our Trilac is made by Swedish company, Allergon AB. Another step I have to take is checking Stas' food allergies. We did that when he was little becasue of some skin symptoms of allergy. We tested him but no specific allergen was identified, although the overall IgE level was very high. I also have to order Sheila Rogers' book. I wish it was available in Poland. I wish I could translate it to Polish (I am a professional translator and have translated two books on medical issues; one of them was dr Atkin's book on his diet; but I work now for a company that publishes business books and I don't think they would be interested) I also think about Taurine, and L-Carnitine, and Carnosine, but as Sydsmom said, one step at the time otherwise I will get lost again. The warmest regards from very cold and frosty this year (but also very sunny today) Poland!

My name is Irena. I live in Poland. I've decided to join the forum I've visited so often for the last two months to thank you all. I can't imagine what I'd do without your knowledge, experience, dedication to help your kids and willingness to share all this with others. We are at the beginning and there is still a long way to go but at least I know the directions. My son is 11 (I've gor two others aged 4 and 13). He used to have some short periods of eye blinking when he was little but as they were short we treated them as his way of dealing with stress or emotions (checking his eyes, of course, but they were ok then). About a year ago he developed mouth grinning and glimpses at sides (sorry, my English is far from perfect). But as conventional doctors advise "the best way to treat tics is to leave them alone" we did. In November he developed head jerking and what made me look for doctors' help was my son,s discomfort with tics. He also has mild vocal tics. To make the story shorter: the neurologist offered nothing except for suggesting a "toning drug" which we refused to accept. He dismissed my suggestions that it may have something to do with his scraching himself all over his body and his exzema. When I tried to look for a natural medicine doctor (there are quite many of them in Warsaw) it seemed that the word "natural" meant only some New Age stuff. So I followed your suggestions and started acting on my own (although I would be so happy to have someone here to guide me through all this). What we did? 1. changed the diet for an anti-yeast one (the immediate result: no sugar craving; it came back for some time after his birthday party when I let him have a pizza); for the last week we've been also milk-free 2. supplements (we ordered Bonnie's TS Plus Control and are now waiting for a delivery; I hope it will arive safely); the problems is that it is so hard to collect the right supplements, e.g it seems that all B vit. in Poland are made using yeast. I give him Special Two (US made min. and vit.) which has the rihgt proportions of B vit. and is sugar and yeast free + Magnesium + Calcium +DHA/EPA+grape seed ex. 3. he went through one week course of Nystatine and anti-parasite treatment (suggested by the doctor, although we have not observed any symptoms) 4. he had the hair test done (not including Mercury, I'm afraid) which showed considerable deficiency of Magnesium and Calcium (toxic metals within normal, except for Cadmium - slightly too high) 5. Biofeedback - 10 sessions completed although we realise we need a lot to have results. YES, there are already results! The tics are still there but they seem less intense, as if suppressed. I think the Biofeedback started to work. But I also know that BFB does not remove the primary cause. So, as I said, we are only at the beginning. Needless to say, it is very energy and money consuming. Stanislaw (Staś) is a happy boy, very talented, popular among his friends. I thank God for that and try not to make the whole thing bigger than it is. But only two months ago I felt so lost, so confused and depressed. Once again! Thank you! You have already helped me a lot! Irena PS. I must confess that I have no courage to share my experience with Polish parents as I do not have any proven results, yet. And suggesting biofeedback, which is really very expensive here, is ackward. There is such a depressing atmosphere on Polish TS parents' forum. Long time ago I asked whether anybody heard about a link between TS, tics and yeast problem. They haven't. I know, the least I can do is to direct them to this place if they know English.