Thanks from Poland

[Irena]

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.

[kim]

Welcome Irene!!!!!!

 

I only have a minute, but I wanted to comment on the "itching all over." My oldest son went through a horrible period of this.

 

We mentioned it to his Pediatrician several times. Finally I picked him up in the middle of the school day, and took him back to the Dr. and got the winter dry skin excuse. He said he expected it would get better once spring came, and we could open the windows. I looked at my son, and said "can you live like this until spring?" He said NO. I told the Ped. I thought we needed an appt. with an allergist.

 

He was found to have reactions to many envionmental allergens. They tested both of my sons at the same time. Looking at my oldest's reactions, compared to my youngest, I could have cried. Oldest was such an explosion.

Zyrtec has eradicated the itching. I'm sure it has had no effect on the underlying problem, but I wanted to share the fact that during this horrible period, it is the one time, I can say that my son was affected mentally. I really suspect his histime levels were off the charts. His personality was NOT HIM, and it was frighteneing.

 

I'm so glad you are exploring the alternatives, and thank you so much for posting! Will look forward to hearing how you're progressing.

 

Kim

[Sydsmom]

Thanks so much for posting. I pray that you can be a light to the other parents and they don't stay in that place of depression. I went there at the beginning for about a day. It would've been an easy place to stay as it's all so overwhelming but I'm glad I moved ahead. I still take things slowly, in fact I just today ordered Taurine and wondered, "What took so long for it to click with me?". But I am moving forward - baby steps and I'm seeing results mostly in my daughter's moods and behaviors. I'm hoping the Taurine helps reduce her tics. Thanks again for posting!!

[Chemar]

hello Irene and a big WELCOME to you!

 

Thank you so much for posting such encouragement for all of us.

I hope things just keep getting better and better for your son. He is blessed to have a mom who has researched and found ways to help him.

 

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.

 

I hope you will keep us posted on your progress

all the best to you and your son and family

[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!

[Chemar]

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.

 

Here is a link to the ingredients in THREELAC

http://www.candidasupport.org/ingredients.html#THREELAC

 

If you consider ordering it, there is a company that ships to Europe inexpensively

http://www.candida-yeast-problems.com/index-threelac.html

 

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 highly recommend Sheila's excellent book.

http://www.latitudes.org/book.html

 

You can also email her direct from the ACN website http://www.latitudes.org

 

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

 

Agreed! Take it a step at a time, and whenever you have questions about the next step...there will always be someone here to try to assist based on our experiences.

 

[Claire]

Welcome Irena.

 

When my son had bad eczema, I read that 80% of childhood eczema was caused by either wheat, peanuts, milk, egg, soy (and one other thing...corn?) Though your tests didn't come back positive, you might try removing them even for 2-3 days to see if there is a change in his itching, even though that is too little time to heal the eczema. For example, with my son I noticed the difference in itching within 24 hours when we took wheat away.

 

Yes, Threelac has Brewer's Yeast in it. Unless your child is allergic to Brewer's Yeast (mine was for a while!) it has no impact at all. I think Threelac has a good reputation, if only anecdotal, and worth trying. It isn't cheap though. My son hates the taste, so I put it in a capsule, which may not be ideal.

 

Your journey is 'young' but sounds like you are off to a great start. Good luck to you!

 

Claire

[Irena]

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

[Claire]

Hi Irena,

 

Unfortunately, the yeast used to make breads rise is indeed forbidden in anti-yeast's diet. It is just that since Threelac is specifically for yeast control, so their Brewer's Yeast with the probiotics in it is not an issue. They say it just feeds the probiotics on the way down the digestive track.

 

We never cut out yeast entirely, it was just too hard. So we did as little as possible. We went for what was liveable over the long term. Heck, we already had to take out corn, milk, wheat, peanuts, bananas, almonds...etc due to allergies. Fortunately he is down to just avoiding wheat and peanut now. Actually though, for whatever reason, my son's yeast has been the hardest thing for us to control--though I haven't tested it in almost a year I think, so maybe it has improved a bit. But we did 3 months of nystatin twice and it was still bad. Even diflucan--which we were scared to do and stopped after a couple of weeks due to severe abdominal pain...I will never do that again. I did it for myself and lost my sense of taste...I stopped after 1 month and it took another month or two to come back, it was very unnerving as I feared it might be permanent. So I am now in the anti-diflucan camp, with so many others. But obviously it has worked for some.

 

 

Do check those metals! You may never heal the yeast if metals are an issue. The hair tests aren't so painful, though I am sure you have read they can give false negatives.

 

As for the eczema healing, it took us months after removal for it to clear. My fingers are crossed about the milk. But it could be the yeast overgrowth. Also, a friend of mine says that having yeasty breads definitely gives her a rash.

 

I never heard issues with tomatoes from a yeast standpoint. (Some people have issues with the salycilates in tomatoes, but that is another matter). Also, we never stopped giving him cheese--he never seemed to have issues with it. We make a wheat free pizza with tomato sauce and mozerella. I have 8 books on yeast control and yeast diets, ha. **In the end I think with yeast control, the key thing is to reduce carbs and sugar, Plus probiotics and natural anti-fungals.** The other restrictions never made a difference for us and they made life too tough for him. e.g. We only eat things with sugar alcohols now (e.g. xylitol, and sorbitol). (A week on nystatin wouldn't make a big dent by the way), and he has more protein and less carbs with meals than he used to. I really do plan to do Threelac for 6 weeks and retest my son to see what difference it made.

 

Be careful with Bonnie's vitamins. Apparently, for some they are helpful, for some, there is something in them that their child reacts to. So try not to introduce other factors when you start them so that you know if they help or make things worse. I personally didn't agree with some of her balances, and I don't feel that one size fits all. I generally don't get into specific vitamin discussions for that very reason. I realize that your choices are restricted in Poland, so I hope Bonnie's works for you. In an ideal world, you would try one vitamin at a time to make sure there wasn't a reaction. We did individual vitamin deficiency testing, but I don't know if they are available there. We now compound the vitamins at a pharmacy...for us it is cheaper than buying them individually, and the compounding pharmacy doesn't use fillers.

 

I would see if you can have your child get some zinc/copper blood serum test (this is a commonly accepted lab test, your normal doctor should be able to order it). Finally, if metals are an issue, then antioxidants are important.

 

I am glad you are learning from this site. I do come then go for long periods, so please don't be offended if I don't respond...I have had my work situation really shift into overdrive this past year. That's why I put together the summary links of everyone's great contributions. But there are always new questions and insights as we all learn. I am looking forward to your success and your sharing what you learn as you go!

 

Good luck again,

Claire

[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.

[Chemar]

Hi Irena

I just wanted to give you a (((hug))) of encouragement!

Although you may feel incompetant...truly, from reading your posts you are not! You are on a journey of discovery and yes, it sometimes feels very overwhelming and frustrating, but the more you learn and apply, the more the pieces of the puzzle will begin to fall into place.

 

When we were on the Candida elimination diet, where we tried to limit sugars and starches (the primary food of Candida) as much as possible, we did not totally eliminate breads and other products with Bakers Yeast

Our doctor did not feel that it was as serious an issue for us as sugars, and, although we were advised to drastically cut back on foods containing bakers yeast, yet it wasnt a total elimination. We did eliminate those breads and other things made with refined flour tho

She did however advise that we totally eliminate mushrooms and I noticed you had mentioned mushroom soup at school.......

 

Our yeast problems were helped by a combination of diet and capryllic acid (caprylate) altho most recently when my son had a flare up after an illness, he was put on Aspergillus niger and Monolaurin and had a very rapid reduction in the Candida!

 

I do know of many people who have tried just about everything for candida, and the only thing that has been effective for them has been the Threelac.

Based on my personal avoidance of pharmaceuticals wherever possible, I am not a fan of Nystatin. But i guess it too has its place in Candida treatment for some.

 

 

I do hope you can find a good Integrative doctor to guide you on all this as it can just get so confusing to try to do it all alone.

 

I think just about everyone here who has eventually found success in helping to stabilise tics will agree that it is a learning curve experience....you just have to keep persevering until you find the right treatment or combination of treatments that best fit the individual....

I hope that the TS plus helps your son, but do remember, if it doesnt...this doesnt mean that supplements are not needed....some people respond wonderfully to the Bontech supps and some people do not...mainly because of the individual metabolism and specific vitamin/mineral/amino acid needs.

Again, a part of the learning curve!

 

so...I say all this again just to encourage you to take it a step at a time and never give up.....there is light at the end of the tunnel and as you work thru the process you will get closer and closer to it.

[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

[Irena]

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

[Chemar]

Irena

 

all the information I have on Taurine says the OPPOSITE ie Taurine increases the production of serotonin (and melatonin)

 

A very good source of Taurine and Magnesium ( both supplements that help to reduce tics) is as Magnesium Taurate from The Vitamin Shoppe ( http://www.vitaminshoppe.com )

Bonnie also sells magnesium taurate

 

 

 

You are SO right about prayer....when I think back to the early days of my son's diagnosis, when his tics were so severe they were causing him injury, and when the meds made him psychotic and he was hospitalised and the doctors tried to tell me he would need to be admitted to the psychiatric hospital it was prayer prayer and more prayer that sustained us and gave us hope and courage and eventually led to me finding the information on the natural treatments. The most effective treatment for my son has always been prayer, because God answers with peace and encouragement and guidance...ALWAYS!

[kim]

Ireana,

 

Just a couple of comments. You asked Claire how she got to the point of being able to reintroduce foods.

 

From what I have read, the good news about IgG sensitivities is that once you take a break from the offending foods, maybe around 3 months, sometimes you can reintroduce them without the problems you were seeing previously. Also, if your doing other things such a supplementing deficiencies, treating yeast or bad bacteria, enzymes, things that promote healing in the gut, it may speed things along. Some have found it takes much longer, or were never able to add everything back even with enzymes etc. I don't believe allergy shots are used for IgG reactions.

 

There is a book called Enzymes for Digestive Health and Nutritional Wealth: The Practical Guide for Digestive Enzymes

by Karen Defelice

 

http://www.amazon.com/exec/obidos/search-h...3952605-4739344

 

I have not read the book but have heard others say it's excellent, even if you have no interest in the use of enzymes. It explains a lot. There was a post by her today, on the enzyme/autism group, where aloe water was mentioned as being something helpful in gut healing.

 

Also, I think it's wonderful that you got brave enough to share your experience so far, with the parents on the Polish forum. Please be sure to alert them though, that there can be interactions between supplements and medications, so be sure to check with a Dr. who has knowledge of medications and supplements, or at least ask a Pharmacist before starting any supplement, ESPECIALLY if medications are involved.

 

About the zinc. From what I understand the hair that is tested (closest to the scalp) is about 3 months old? Were you supplementing zinc at that time?

 

Hope Claire pops back with more info. for you!

 

I did have a physical for the boys as Bonnie's site recommends, before starting the vitamins, and yes I did base the dose on observations.

 

Kim