Irena

[kim]

Hi Irena,

 

If you're still reading, I just wanted to let you know that I would be happy to share our experience with Bonnie's vitamins with you.

 

I can let you know my son's age, weight, how many we're using etc.

 

Kim

[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!!!

[kim]

Irena,

 

I wanted to post this from the PM I sent you so maybe someone can help...............

 

It seems someone here or maybe at Braintalk had experience with giardiasis. I hope someone with knowledge of it pops in!

 

http://www.cfsan.fda.gov/~mow/chap22.html

 

Giardia lamblia (intestinalis) is a single celled animal, i.e., a protozoa, that moves with the aid of five flagella. In Europe, it is sometimes referred to as Lamblia intestinalis.

 

2. Nature of Acute Disease: Giardiasis is the most frequent cause of non-bacterial diarrhea in North America.

 

Also, maybe these links would help in regards to testing. These are sites that some here have had testing done through.

 

 

http://www.gsdl.com/home/assessments/#

http://www.metametrix.com/TestServ/default...ID=40&TabID=117

http://www.greatplainslaboratory.com/russian/test1.html *Great Plains Oat test is one of the favorites for testing candida

http://www.spectracell.com/lab/FIA_testing.html

 

Giselle had a neurotransmitter test done for her son that she found to be very helpful, and Matt recently posted the results of an ION test that looked like it provided a lot of really useful results. If you search the threads, I'm sure you will get a good overview of what test others have found to be good.

 

You might want to look for an IgG food sensitivity, and a test that will give you zinc/copper info.

 

Kim

[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

[kim]

Irena,

 

I did get both PM's.

 

As far as what to watch for regarding Stas getting to much of something in the vitamins, these are a few things that I could think of and I hope anyone else with thoughts will comment too. There are many here who have a lot more experience and really good Dr.s, I don't.

 

Too much vit C or magnesium can cause diarrhea. I have read where too much of the B vitamins can make a child hyper, and an adult sleepy. These are things I have read from other posters/parents, not been told by a DR., although posters that I feel have a lot of knowledge about supplements.

 

I have also read where B vitamins can increase yeast if there is a problem there,

especially oral mb12. Again, others who are working with good Dr.s may have other ideas on this, I'm just trying to come up with anything that I can think of, that you may want to watch out for.

 

Bonnie's vitamins contain 50 mgs. of vitamin B per 10 capsules, so at 20 capsules 100mgs. This is what I believe may have caused my son to feel hyper. Some people find that they need P5P which vitamin B needs to be converted into, and some may not be able to make that conversion. In this case, you may not get a good effect from the Bontech vitamins. With long term use, I have added extra calcium, as Bonnie's vits. have a 1:1 ratio of magnesium and calcium, and for a growing child, I think a 2:1 ration is probably better.

 

I don't believe any of the levels of the things contained in the Bontech vitamins will be harmful in a generally healthy person with no other medical problems, although medical guidance is always recommended. I did have a physical for the boys to check kidney and liver function prior to starting the vitamins for my youngest, and shortly after my oldest had started using them.

 

This is a site that I found to be very useful when trying to get an understanding of vitamins and minerals http://lpi.oregonstate.edu/infocenter/index.html.

 

If you see something that makes you think he's not doing well, you can always email Bonnie, or post your concerns so other's here can share their ideas.

 

Hope something here helps.

 

Kim

[kim]

Irena,

 

 

NOW Special Two..... vits, minerals, antioxidants and aminoacids

 

One thing that I would find concerning for my boys, would be the copper and zinc levels in these vitamins.

 

To much copper, too little zinc.

 

This is a guess, since I have had serum zinc levels checked, but nothing on copper.

 

Kim

[kim]

Ireana and all,

 

Wanted to share this with you.

 

http://home.earthlink.net/~moriam/ANDY_INDEX.html#onibasu

 

If you scroll down to OTHER HEALTH ISSUES; OTHER TESTING ISSUES; OTHER TREATMENTS

you will see Giardia. You may want to read the post on this.

 

I found that page quite by accident. I can't wait to read through some of it.

 

Kim

[Irena]

Thank you Kim,

 

It's a very interesting web site although I have not had time to read it all yet.

 

After the Easter break in the diet and consequent severe worsening of symptoms, I am glad to report that he's SO much better. The vocal tics and throat clearing is practically completely gone and motor tics are really mild.

 

What helped? I belive that going back to diet regime, but this time even more strict. We've seen the allergy doctor. Staś had IgE allergy tests done and there was no allergic reaction. He was also tested for candida sensitivity. Negative. Helicobacter pylori - also negative. he also had blood taken for testing not-IgE allergies using ALCAT test

(http://www.alcat.com/Test.asp: The ALCAT TEST is a patented test that objectively measures the blood cells' reactions to a foreign substance under conditions designed to mimic what actually happens when the food is consumed in real life.

The methodology includes using innovative laboratory reagents allowing accurate cell measurement in their native form. Individually processed test samples, when compared with the "Master Control" (BASELINE) graph, will show cellular reactivity (cell count and size) if it has occurred. Scores are generated by relating these effective volumetric changes in white blood cells to the control curve. It has been shown to be accurate and reliable in scientific studies, 83.4% correlation with double blind oral challenge, (96% correlation for food additives and colorings) the Gold Standard in food sensitivity testing. )

 

The test is not widely recognized among allergists, at least in Poland, but from what I read it is due to difficulties with standarization of the method rather than the method itself). The doctor we've seen has been succesfully using this for many years and she is sort of a "allergy guru" among many parents of autistic children because she is one of of a very few doctors here who recognize link between allergy and neurological disorders.

 

She is also a strong follower of the blood type diet. Staś has B type and when I tried to research the subject a little I read that B type people have very delicate neurological system and are prone to neurological disorders. Is there anything in it? I haven't seen any survey about blood types of our children but I am very curious if there is any prevalence of B type.

 

Anyway, we have tried this and although this meant further diet restrictions we cut wrong foods for B type (e.g. chicken, pork, tomatoes, nuts (almonds are OK), all grains ecxept rice, millet and oat and so on). Although we did not have ALCAT test results and did not change the diet accordingly we had already seen results.

 

And then the results came and we had to give up eggs. The results did not show strong allergy to anything ecxept sauerkraut (very popular in Poland). I would have doubts as it is not ussually considered an allergy food if I not suffered with bad rashes from sour foods as a child myself. He also had borderline reaction to eggs, potatoes (!), lettuce (!), walnuts, fig, carp. But no reaction to milk! And as a B type, the only blood type that tolerates milk, he is allowed to have it.

 

So after 3 months of complete abstinency from milk and all diary products he now has cream cheese, cottage cheese and youghurt (I don't give him milk because of milk sugar and we are still avoiding sugars).

Ok. The improvement is great! No vocal tics and practically no throat clearing any more! Motor tics much, much milder and less frequent (limited only to face and neck). Still bad rashes under elbows but we will see. I have doubts as to milk products but if I take this away from him I don't know what he would eat. I really have to give more thought to meals to make them more attractive, especially breakfasts.

We are still waiting for stool test results for candida and parasites as the doctor does not trust other laboratories.

 

I also wonder if his improvement has anything to do with the fact that all this time he was at home (we've had sort of short holiday here in Poland, almost 10 days). But he loves going to school and his friends.

From today on we're giving up school lunches. I would like to have full control over his diet. But that seems impossible because the 5 day school trip is coming. What is your experience with school trips or summer camps? Staś wants to go very much and I don't want to punish him additionally for his problems that are not his fault at all. He knows what he is allowed to eat and what he is not. Of course, he will not be able to eat only the right foods. I don't worry about this blood type diet as I don't belive this will have an immediate impact on his tics but I worry about yeast. I'm sure he will have bread containing white flour and yeast because probably there will be no other choice for breafast. But we've considered this with my husband and decided that he will go even for the price of worsening of symptoms.

 

And at the end of this too long post another really great news. THE ONLY Polish DAN doctor (there is another one who comes every four, five months from Germany) lives 8 kilometers from my home and we have exchanged mail. I wait for all the test results to come and we will make an appointment. Through her I can make all the GSLD and Great Plains tests (the only problem is money ). She's been to two DAN conferences, including the last one held in Washington D.C. last month. I am so happy about it. It seems that at last I will have someone to guide me!

 

I have also been asked to help to interpret during Warsaw conference which is planned in June. The very active group of parents of autistic children already organised one, small conference last fall. They invited dr Ken Aitken from Edinburgh. Well, as I have no experience with oral translations and they deserve a really good interpeter I had to refuse. But they also need someone to interpret during patients' visits and this I will have to consider. I would like to help very much but I'm not familiar with all the autism issues.

 

Thanks to those who are reading for your patience

 

This post has been definitely too long and I was punished for that. I completely burnt the lunch I was preparing!!!

[Irena]

Kim!

At last I found time to read Andy Cutler's posts on chelation at the web site that you cited in your last post here. What a wonderful source of information! And comforting, too. It seems that using ALA is both safe and effective. It is also very interesting that he does not recommend waiting to detox until the gut is healed (the usual approach of DAN protocol).

 

Because I'm planing to see the DAN doctor soon I will wait but after reading this web site (not all of it, of course, there is so much information!) I can hardly do that.

 

Yesterday, I was very depressed with the fact that even small amounts of wrong foods has such an immediate effect on tics (motor tics still mild but vocal ones back). Because me and my husband had to go away for the weekend Staś spent two days at his friend's. He said he hold to the diet but I suppose he must have had too much of something (maybe sweet fruit?) He also had chicken and pork which is to be strictly avoided for B group (the blood type diet really makes me crazy; it is another restriction to his already very restricted diet but as this seems to work we stick to it. I wrote about it in my previous post here. I would really love to know your opinion!

 

I would also like to know how you deal with times when your child is away from home for longer period. The 5-day school trip is coming and my husband's strong opinion is that we cannot tell him not to go even if we know for sure (especially after this weekend) that his tics will get worse. I think so, too, although I am not as sure as my husband is.

 

Irena

[kim]

Irena,

 

After reading your post this morning, it prompted me to do something I have been thinking about for quite a while. I called the hospital where my son's were born, and requested their birth records. I don't know my boys blood types. The PANDA's stuff, made me want to know this, it's probably a good thing to know anyway. Things that I have in their baby books from the hospital, say B+, but that appears to be my blood type, not theirs. The girl in medical records asked me why I wanted it. I told her that one thing I wanted to know was if my oldest son had received the birth dose of HEP B. I also told her that I wanted to know their blood types. She said it was good that I had told her that, because it would not have routinely been included, if it was even typed, and the immunization info. wouldn't have been either unless requested. I read somewhere that many of these birth doses have gone unrecorded. Possibly not passed on in Pediatric records, but reported to the State?

Apparently, this info has to be requested from a storage company, and she filled out the request over the phone. It really just amounted to name and date of birth. It cost 51 cents per page. She said I can come in and sign a release and pick it up next Monday. Both boys had something tramatic about their births, although totally different. These reports will be interesting although maybe a little scarey. I have read where many things happened that parents were totally unaware of, after getting these records. I think I posted somewhere here before, that I'm pretty sure my youngest son had some type of a seizure the first evening in the hospital. I know he had the birth dose of HEP B. I will let you know if I find out their blood type.

 

I wish I could help you out on the away from home diet issues. My Oldest son, is pretty good at reading labels. He loves the flavored water in the school vending machines, but read Aspartame, and knew not to drink it. He will put his foot down and eat somethings though. Cookie dough ice cream, is a battle. I find the diets, whether it oxylates, phenols, MSG and excitotoxins/natural glutamate, gluten/casein, special carb diets, to be overwhelming myself. I have chosen to use enzymes, get them to eat as healthy as resonably possible. I'm always on the lookout for good things for the gut too. I recently started my youngest son on Nordic Naturals EFA's. It's a lemon flavored 3 6 9. He seems to be tolerating it well, and I will up him to two a day, probably in another week. My oldest takes Bonnies fish oil only.

 

My oldest son spends a lot more time away from home. Again, he knows if he's screwing up too much, and will back off junk on his own.

 

 

 

My youngest son, would not go away for more than 1 night. He is very self conscious about his limited diet, and will not eat in front of other people. Junk food he'd eat in front of anyone (his beloved sweets/pretzels) but not his standard concoctions of pizza sauce, string cheese, green pepper etc.

 

Part 2, after kids are in bed!

[kim]

Irena,

 

Just wanted to add that my 13 yr. old son said he thought you should let your son go. I told him that your sons tics were vocal and motor and his Mom was afraid he wouldn't watch his diet closely enough. He said that 5 days wasn't that long, and you could get back on track when he got home. I KNOW how hard this decision is for you, especially when you see a difference when overseeing things. I don't think my oldest son's tics are as closely related to diet, more to virus and infections. I have been where you are, just recently. My son was asked by one of the school counselors to go on a 3 day weekend to a camp for the Disney Sponsored Natural Helpers Program. I was pretty proud because students apply for this. My guy was called out of class and was invited This is a program where kids are "trained" to help other students with problems, and taught how to encourage a student having difficulties to talk to the school counselors. I worried about his diet, being in the woods and allergies, just worried period. He did fine! (He's also prone to poison Ivy).

 

I was reading an exchange btwn a couple of young adults, talking about letting their Mom's handle everything to do with their tourettes. One young man (22) was saying how angry he used to get when therapists would tell him to take responsibility. He said he wished he could apologise now, because they were right. This was not in regards to diet, but I think the point is still, that we have to involve the older kids in this process, and give them some control over these decisions, and just be there to help pick up the pieces when things get off track. Kind of like any other area of parenting!

 

My oldest son has held up a can of Dr. Pepper that he has brought home from a neighbors house, and I have shrugged and told him it was his decision, and he had to listen to his body, and decide what affected him, and what didn't. I would not have this attitude, if things were more severe though, and we have been at this for a while now. I think that was a lot harder earlier on.

 

Is it a possibility to get the camp to work with you on food issues? Maybe you could send some of your own things? With all of the food allergies, I think most places are pretty used to working with parents.

 

The information from Andy Cutler, and that forum is really something isn't it?

 

I so hope that you get involved with the translating for Autism Irena. It's obvious that you're zooming right through this. I just bet you will end up being a big help to more than your son. It's wonderful you are in touch with a DAN Dr. too. That is great news!

 

 

Kim

[Irena]

Thank you, Kim!

 

And say big "thank you" to your son. His view is very valuable to me!

 

I'm happy to say that yesterday, just one day after he came back from his friend's where he stayed overnight things were great again! When I picked him up from school I looked for tics and I could hardly notice any!!! So maybe it was just an excitment?

 

Our Easter experience when tics got so much worse after giving up diet for almost a week made him more conscious about all this. He told me that at his friend's he hold to the diet, eg. didn't have any bread for breakfast, just cottage cheese, ham and a carrot (I'm so happy he can eat diary products and although I was suspicious at first his rashes are clearing beautifully after we withdraw foods indicated in the test and introduced diary back).

 

After reading Andy Cutler's posts I think this Easter worsening of symptoms could have also something to do with removing his two amalgamat fillings right before Easter (on Great Thursday). And although we took all the necesaary steps to avoid absorbing mercury (much bigger doses of antioxidants a few days before and after, using a special cover (it is called koferdan in Polish) leaving out just the tooth so that the mouth tisssues are covered and you cannot swallow anything, sucking equipment, etc.) maybe some mercury might have got into his brain. I don't know.

 

Anyway, things are fine.

 

I thought about telling the teacher about the diet and supplements and even calling the kitchen where they will stay but Staś told me absolutely not to do it. He said he can take care of himself. I understand him. He doesn't want any fuss about him. He wants to be just like everybody else. I will trust this to him although there are things I worry about like: will he have enough water to drink, will he remember about his pills. For the time I will replace Bonnie's vits with NOW Special Two+additional Mg and Ca + taurine. I want to cut the number of the pills down to make it easier for him.

 

I would like to ask Andy Cutler some questions. But I don't know his mail address. I joined the Yahoo Autism-Mercury group but I did not explore it yet.

 

Kim! Only a moment ago I noticed there was Part I to your letter! I've got the complete immunization info as every shot is put down in a personal health book that every Polish baby gets on leaving hospital after birth and it goes with a child at every medical "event" up till he or she is 18. Staś birth was not easy either, he also had some things done at the hospital like e.g. blood transfusion.

 

And the last question I always wanted to ask: is it really the way they say that the peak of tics is 9-12 and that they gradually subside after that age to go away altogether or stabilise at some level? I know we should not count on that but try to get to the roots of the problem and correct them. But it would be such a comfort to know the things will get easier with time!

 

Irena

[Sydsmom]

Kim,

 

I just had to comment on your post. I've been hoping Sydnie would take some responsibility (12 yr.) and that I wouldn't have to "nag" her about her diet and supps. This past weekend was busy and I didn't remind her at all to take any of her supps and so of course she didn't. Sunday night she was complaining that she had a bad stomache ache. I kept my mouth shut and thankfully my husband said, "Did you take your supps at all this weekend?". No. "Do you see the effect on your body?" Yes. So she sees how she feels but still doesn't always remember to take them. I'm hoping one day it will kick in with her. Maybe when she's in her 20's?? I do know when I was very, very strict with her diet she became very, very angry and hostile towards me. When I let up a little she relaxed a little more and she does ok now. Still has 2 tics and thankfully right now they aren't too wild. We added Taurine a few months ago and at that time she had 4 big ones going on. I'm wondering if it's now helping. Ok - just had to comment. I thought you were right on with what you said about older kids. Especially if their condition isn't too bad. When I look around at all the families I know I see each family has a member who has "something". This is what we have in our family.

 

Lisa

[kim]

Lisa,

 

We sure are walking a fine line aren't we? Knowing when to back off and not give too much information, and let these guys be kids vs. keeping them healthy. I know there was a point where seemingly overnite things changed for my oldest son with responsibility. He was easier to reason with, no more home work battles.

 

One thing I have noticed with him (13), he doesn't mind taking his supplements at all, but I have to get them for him. I think when he goes to do it, we have probably 15 bottles in this area, it's overwhelming for him. He stands there and says "OK, what do I need to take". He has been taking vit. C, bonnies vits, a fish oil,and occasionally extra mag and calcium for a long time. We have dropped extra zinc with him, unless he gets sick, or just occasionally since he doesn't even get the RDA in the minimal amount of Bonnie's vits that he takes. Anyway, If I put everything out for him to take, no problem, but he hates looking at those bottles. We have zyrtec, 3 bottles of enzymes, my vitamins, two strengths of calcium, extra pantothentic acid etc. etc. all in the same place. It finally came to me that he's not being lazy, he just doesn't want to sort through the stuff!

 

Since you mentioned taurine, I wanted to post this as I had it saved, and it laid out the importance of it here to me. It really convinced me of the need for taurine with my youngest son, since he hasn't been within 4 ft. of meat for years. Also, I'm curious if anyone has any experience with GABA? I have found Amy yoskows site to be really informative. Her view on vitamin K is also interesting and not something I have heard others talk about, but it could be important for my youngest son. They gave my new great neice a shot of vitamin K right after she was born. I didn't know why. Since the flora isn't established in an infant, the vit k. isn't being produced and it's given in the rare event that there is bleeding (brain). Vit K will help blood clot. Apparently this is routine. First I knew of it.

 

Now, OF COURSE, when I got to investgating it, there is a camp that says oral is fine, but some studies showed injected vit K. could have some problems. This is my interputation, as always, if anyone has any interest, please do your research. I'm only half awake reading this stuff sometimes. Anyway........The interplay btwn. taurine, Glutamate and GABA is pretty interesting.

 

http://www.holistichealth.com/supplement.htm

 

Disclaimer from her site:

 

*The following descriptions of nutritional supplements do not necessarily represent the "classic" uses that are ascribed to these supplements and herbs. Rather it is information based upon my experience and my personal opinions after using these materials. Please note that any suggestions for use, as well as nutritional supplements themselves are not intended to diagnose, treat or cure disease. Any suggestions or comments are based on the authors experience and knowledge without the benefit of your history.

Please consult with your physician or healthcare provider before using these or any other supplements.

 

 

 

Taurine- This is an amino acid that is not considered as an essential amino acid in the body. However, individuals who do not eat a lot of red meat are deficient in taurine. Taurine may be useful to the liver by increasing bile output. This helps in the digestion and assimilation of fats and fat-soluble vitamins. Taurine is very useful in controlling imbalances in glutamate and GABA. It may be that taurine is helpful in curtailing the rapid outpouring of glutamate that is associated with seizures and epilepsy. This is a situation that is encountered in neurological inflammation (autism, ALS, Parkinson’s, MS, Alzheimer’s) as well as epilepsy. Taurine is reported to be useful in helping individuals with kidney disease, helping to stabilize blood pressure, and those with low blood sugar issues.

 

 

GABA- This is a calming neurotransmitter in the body that helps to balance glutamate. It should be useful to help decrease stress, and increase speech, eye contact, and social interactions. GABA comes in several forms and it will be a bit of trial and error to determine which is best. GABA Calm seems to work well for many individuals during the day; it melts in the mouth like a lozenge. For those who do not like the taste or prefer to swallow a pill, GABA is also available as a supplement to be swallowed. ZEN (GABA and Theanine) is nice to take later in the evening as it helps with sleep and stress.

 

 

Glutamate

http://www.unifr.ch/biochem/DREYER/Neurotr...s/glutamate.htm

 

Glutamate is considered the principle excitatory amino acid in the CNS. Its role in cellular metabolism is well known. Glutamate is distributed widely throughout the neuroaxis.

 

Binding of glycine increases the ability of glutamate to activate the channel apparently. It is unclear if this is the site that Nitric oxide acts.

 

Tons of info on gutamate and the info. on vit K here http://www.autismanswer.com/articles/yasko...citotoxins.html

 

Kim

[kim]

Irena,

 

In last link that I posted to Lisa in the above message, there is information about certain blood types, that seems to be tying into what your Dr. is doing with Stas, and the food choices. Very interesting, about these blood types.

 

I don't know what to say about the tics lessening. I have read it both ways. With my oldest son, it sure would appear that they have lessened and flairs are WAY fewer and farther btwn, but how much is related to the interventions that we have taken, and what is age related, I can't say.

 

I'm hoping the things were doing for my 9 yr old will help him make it through this period easier too.

 

So glad to hear things improved quickly there.

 

Kim