kim

Just an update. I received the Dysbiosis Urine test from Direct Labs/Metametrix. Direct labs orders the test kit from Metametrix-Met. sends it to you and you return it to Met. The results will be sent back to Direct Labs who will send them to me. Claire was right, the order from Direct Labs has a Dr's. name on it for Metametrix. The test was simple. They send you a plastic bottle to collect any urine from overnight, if your child has to go, then you collect first morning urine. They send you a dropper to fill a test tube with, a small ice pack, a biobag to seal sample in, the box to return, and return lable for shipping, then you call Fed ex and they pick up the frozen specimen. Lable for shipping is included in cost paid to Direct labs. They give very detailed instructions. Metametrix said Direct Labs will have the results in 12 to 14 days. I asked Metametrix about avoiding fruit. They said they don't test the levels that require this. I was disappointed to hear that, since it probably isn't as extensive of a test a Great Plains does, however it is the best I could come up with at this time. For $187.00 dollars, I sure hope I can rule a problem in this area either in or out. It was sent out yesterday, Thurs. so now I'm on hold. You can not ship later in the week than Thurs. Kim

Daniel, Ronnas Ronna I know you are the resident PANDAS expert, I was wondering iff PANDAS is ever a gradual onset. I read your extensive thread some time ago on Braintalk about the titers testing for PANDAS. My kids both had lots of streph when they were younger. Oldest son just had it a month ago, although since he had his tonsils out and has gotten older, he doesn't get it nearly as often. Younger, I was told is probably a carrier, since he has been in several times with a mildly red throat but culture comes back positive. He had a bunch of white spots and same symptoms as his brother when brother had streph, yet tested negative twice just recently. Just wondering. Daniel, I was told that two of the main things someones's DAN Dr. looked for on the Great Plains Oat test is yeast and I think gluthathione-don't think I spelled that right, and these things can give an indication if metals may be present? Just wondering what Dr. reviewed those results with you and if this was mentioned at all. Both of my boys have an appt. with an allergist their Pediatrician referred us to. Oldest son had Environ. testing when he was about 8. Positive to mold, cat, corn pollen, cottonwood. Foods were never mentioned. Does anyone think regular allergy testing for foods is worth doing? Hate to put them through it if we will just end up needing the blood testing through the speciality labs anyway. Does anyone have experience here? Daniel, I still think high B6 if you were'nt supplementing could mean he is unable to convert to P5P and may do well with supplementing with that. You may want to ask some of the people here who have more experience with these tests if that is something for you to discuss with DR. since this is just my impression. I had a high B6 on oldest sons blood work and suspect this for him too, however he is on Bonnies Vit. doing very well, and I don't want to add/change anything until we have a different Dr. Phyl posted a suggestion regarding Great Plains Oat test so maybe she could help. I'm going to send you a link for an interview with Dr. Walsh from Pfeiffer, this is discussed in that article. Kim

I had to let you all know what I learned about a wonderful father . Daniel and I had a marathon discussion last night. He was hoping I could shed some light on some things for him. I was hoping I could offer him support and share some of the things I have learned from the wonderful people on this forum. Was I in for a surprise. Daniel is running circles around me. He has removed carpet-gone to hard wood, air cleaners in every room, matress/pillow covers, has had allery testing, Great Plains Oat Test, yeast testing, feingold diet, food retrictions etc.etc. I had underestimated the depths of Daniels knowledge regarding his son's tics. He is articulate, focused and and truly driven to do the best for his son regarding treatments and the emotional impact versus potential improvement. Daniel has a young family, works, and is doing tons of searching on the internet which we all know takes it's toll. I just don't think he has time to give a lot of background, so I thought he was new to all of this. My apologies Daniel. I think our conversation was way more beneficial to me, than the other way around. If he has time to share his future experiences; he has some treatment plans in the works, I think he will be a real asset to the newer people here who are trying to find their way through this maze also. I just wanted to thank him for sharing so much with me! When he says analytical, he's not kidding and I"m sure his son is going to recognise great benefit from having the wonderful balance of the parents he has. Kim

Oops posted on wrong thread. Sorry.

Just to add to Maries post-oldest son is really into making smoothies. He uses the Stoneyfield Organic Plain yougart, kiwi, strawberry, and bananas. They are totally delicious. At first he was using too much ice, after about the 3rd time, he has these things down to an art. He makes them for himself and 2 of the neighbborhood kids a couple of nights a week. I am looking for the tupperware containers that you put your own stuff in to make popsickles, hoping I can get my non eater to try one. Both my husband and I love these too. I was telling him, with something that tastes this good there is just no reason to eat the garbage ice cream I used to buy. I am still on the anti soy thing. The articles I read about the content of maganese in the soy formula, creamed peach and turkey meat baby food, along with the fact that florinated water intensifies the absorbtion of maganese and the possible neurological effect, and with possible over load of metals from vaccines, is quite compelling in my situation. When I first posted links regarding this, mostly taken from Dr. Mercola's web site, it didn't make sense, since it appeared my children would have a maganese overload, yet due to Oldest sons "second ankle bone" it suggested a maganese deficiency. I went back and reread "My view is that it is the higher valence MN (biounavailabe) the causes the body to shunt the normal use of bioavailabe MN thus causing a toxic buildup for which we have no solution (yet). Big problem". The research on this subject is thin, but something I am paying alot of attention to. If anyone can post the the amount of maganese in regular infant formula, I would really appreciate it. I feel right now, like if there is a family history of issues our kids deal with ie. possible problem with eliminating metals, Soy infant formula and high maganese baby foods should be avoided, in future generations. I hope testing will give me some clues if there is anything to this theory in my kids. I wonder if my boys are able to utilize maganese now, due to what may have happened to their systems in the first 6 mos. of life due to soy formula having 200 times the amount of MN of breast milk, and being mixed with florinated water. Soy infant formula sales have also doubled in the past 10 years. Didn't mean to go off on that tangent since it does'nt seem to apply to most here, as there was not a response to earlier post. I know Andy has done some reading about soy, as his remark about being cautious with soy is what tipped me off. Other things mentioned; link between lead and asthma, black and green tea(high in flouride and aluminum) found to increase MN and copper absorption, while decreasing zinc, calcium, and iron absorbtion(my oldest stopped drinking green tea as he said it made tics worse, this was long before I read any of this. One of the reference links is titled "Fluorides, of course, cause zinc deficiency". Tons of things to consider in those articles. Kim

Marie, What a beautiful post, and Chemar those hugs-I just had to stare at it for a minute and smile. Ronnas is having a baby! I'm getting a little jealous of all of these new Moms. I wish she posted here more often. With everything she has going on, it's no wonder though.

Daniel, http://www.enzymestuff.com/conditionbacteria.htm This is a link to the enzyme web site. I'm just wondering if you explore this, you might find a compromise. From what I understand, the enzymes help break down the foods that may be causing problems ie. milk and wheat proteins. There are enzymes which aid in the break down of yeast. It's just sprinkled on food or mixed in juice, and some people do much better without having to restrict diet. I am just getting fimiliar with this stuff. Would like to hear what you think if you decided to check this out. Also, just ran across this today- http://www.lookforhealth.com/ I haven't even read the whole thing, but it looked interesting, got it from the enzyme board. Dainel, I wouldn't even be here, if my oldest son hadn't had a tic which was painful for him. Much of the time my kids are just normal, happy, wonderful kids. But now it almost seems like I'm being negligent if I don't find out where they may be "off" with the body chemistry. It sure seems like there are a lot of changes that can be made without your child hardly noticing. Maybe you are so focused on eliminating foods right now, that your misssing some other things. I really believe you will have to get the yeast under control. I think you were considering Threelac? That doesn't even require the diet restrictions that other meds do does it? Maybe just ridding your son of yeast and a good multi vitamin, perhaps some helpful enzymes, would be enough. Non of these things should be to disruptive to daily life, although, I do know you had a hard time with yeast die off last time. Just go more slowly-really slow, like 1/4 or 1/8 of what they recommend. I'm sure not trying to sound like any kind of expert, just some things for you to check out. I am trying to accomplish just what you are. Improving my boys health, and tics, without making them and myself miserable! Kim

Phyl, I have already ordered the yeast test from direct labs/metametrix. I would have loved to order through Great Plains, however I can't do that without a Dr. signature. I did just check the Direct lab web site, and this urine marker test does measure clostridial level. Hope it's good enough for now. Once I start with a Specialist, maybe retesting can be done through great Plains. Thanks for the tip in regards to foods to avoid. I had not heard anything about that. Maybe it will be mentioned with test instructions? Kim

http://www.dartmouth.edu/~rmasters/AHABS/N...rotox48dr22.pdf More of same type of reading, but a little more technical I guess.

efgh, That book talks about EVERYTHING. However, I'm not as fascinated as I would have been before joining this website and the internet searching, because I have heard of a lot of it before. I have just been randomly reading sections, so I'm sure there is a lot there I don't know too. It has reinforced my idea that food intolerance can contribute to many symptoms. I just wish I had the option of food elimination with youngest, as he's my main concern at the moment. If I eliminate milk, I'll have to feed him suckers and cotton candy all day (this boy likes his corn sweetners-straight up) as sugar and dairy are about all he eats. My sons don't have asthma that I know of, but when 12 year old was younger and he would be checked for the various respiratory viruses/infections, they would ask me if he had asthma. Apparently, when he had a virus, his chest would sound like a person with asthma might. This would usually only happen about once a year, during one of the really bad viruses. They would give him a breathing treatment and that would be the end of the asthma question until the following winter, and then they'd ask again. I have not looked at anything on the extra dose of polio, have you? So many things to work on! Kim

I did order the Dysbiosis Marker Urine test from Direct Labs, cost $187.000. This was pretty easy. The Spectracell 5000 was not so easy. As Claire said (this may have been in a PM) You can order directly from Spectracell, however since this requires a blood draw, I couldn't find a lab that would do the draw without a Dr.s signature. I told the guy I was talking with at Spectracell that I knew someone who had it done without a Dr.s signature. He said it varies from state to state. I called about 7 labs, and they all said the same thing-won't do the draw without Dr. signature. My reason for wanting to have the Spectracell 5000 done, was again thanks to Claire who said her Dr. recommended that antioxidant levels be checked and high enough to support the body during yeast die off, she was happy to share this info-although again recommened a Dr. guide with supplementing any deficiencies. Claire said her Dr. does the ordering through Great Plains recognised as the best, however this is not a lab I can order from directly, and she was kind enough to point out, that the Urine marker test and the spectracell 2000 may be enough to give me info. for the main issues for treating yeast. However, the spectracell 5000 gives you more info. on vitamine and antioxidant issues. Here are the costs, which are not listed on their website. 5000-$310. 4000-$275 3000-$230 2000-$185, so for $487.00(Spectracell 5000+Dysbiosis Marker)I figured, I would have a pretty good idea what issues we may be dealing with. I really got the blood/urine thing confused, and Claire had explained that once before. Kim Edited May 26 If anyone is considering ordering this test please read this link that questions the validity of test (Dysbiosis Urine) from metametrix. http://www.greatplainslaboratory.com/newev...antquality.html This one is Metametrix's view http://www.findarticles.com/p/articles/mi_...45/ai_111496962

Daniel, When my oldest son first starting seeing a neurologist, he was tested for seizure disorder. It was done in a darkened room. He was asked to lay very still, however the test was very low stress for him. First they hooked the electrods to his scalp, I think arms and legs? The ones on the scalp took the longest. After that they turned out the lights, (not completely dark-very dim light on) he had his eyes closed and they just turned on something like a strobe light. The tech said they had to try to keep a lot of kids from falling asleep. If you decide to have the test done and it's the same one my son had around 7 years old, I just thought it might help for you to know, my son thought it was kind of cool. I was able to stay with him for the whole thing, it seems it took about 1/2 hour. Kim PS I wanted to let you guys posting on this thread how helpful it is to read your stories. Hearing things like, the shouting out answers in class, the lymph node issues, and someone mentioned in another thread about pencil breaking. I too have dealt with those things, and you're never sure what's related to this disorder, and what just needs more discipline, now that I think about it, pencil breaking is from braintalk thread? Anyway, again the support, knowing you're not alone with this stuff is so helpful. Thanks for posting.

I just finished reading in Doris Rapps book, Is This Your Child, "Candida therapy has also led to improvement in some patients' typical asthma, eczema, hives, and hay fever, as well as the other symptoms listed in Table 23.1. She also says that asthma a lot of times will dissapear after puberty in boys. I was glad to finally read some good news for boys! Kim

Daniel, Thought you might be interested in this too. http://www.enzymestuff.com/conditionbacteria.htm Gives good info. like what Claire gave earlier and some symptoms/reaction to die off. Kim

Caz, Claire, Just a couple of thoughts. Initially, I thought the switch (from Bonnies fish oil) to flax/borage was working well . Lately, about 1 month later, I have seen deterioration in mood. Occasional head shaking, like twice every 3rd day. Who can say if related, but I'm going back to fish oil. I initially switched to see if it had any effect on night time itching, accompanied by little bumpy red spots and and little white hives. It has not changed with eliminating fish oil. I agree with Claire, this really is confusing. Here is a link that I found a little easier to understand. http://borntoexplore.org/omega.htm kim Claire, Direct Labs has a magnesium RBC test for $69.00 This is the one that shows use within the cell as opposed to the magnesium in blood serum for 39.00

Daniel, Look at you go! This is great. Maybe as you're trying to get back into treating this the second time you will have a better understanding and hang in there with it; with the help of this group. I can relate to what your going through. I am you and your wife, rolled into one. I want to know everything that may help and DO IT ALL, and the other part says "they're fine" quite looking at them like their walking deficiencies. The smell of what ever they had sprayed the ball field with last night was driving me crazy, especially as I was watching my 8 year old standing on second base, shoulder shrugging away.(my husband helps coach, he said Duresban (sp) I came home and read Chemars post asking about the same thing at the soccer field. It's nice not to be alone with this. I had a pity party for myself yesterday, trying to get the yeast thing right. Of course I will order the test. If it's high I will go where ever I have to, to get treatment started. I don't think it's that big of a deal, but it sure seemed like it yesterday Anyway good luck with your consult with Sheila. I hope it helps and I'm sure it will. Kim

Claire, You saved me a ton of money and a mistake that may have made me jump off a bridge. If I would have gotten my Ped to order that lab corp test and it would have been the wrong one, ohhh boy. Some how I keep confusing the blood/urine thing. I talked to 2 Dr.s and about 4 receptionists today at Lab corp. They were all really wonderful there. The bottom line is, the the technical director(Dr. Kevin) said if I wanted the test to measure Arabinitol, he would recommend a lab he visited some years ago, but couldn't think of the name. I supplied Great Smokies and he said "that's it", now rereading your post he was probably thinking of Great Plains. So if I want to get a jump start on yeast, guess I'm back to what you recommended this morning, the Dysbiosis Metabolic Marker through Direct Labs-Metametrix. I have to wonder, if it's high, if any Dr. other than a DAN/ALT Dr. will even know how to treat, if the Dr.s at Lab Corp. are this unfimiliar with this type of testing. Maybe I should wait for insurance, and let the Dr. order the test. What a day. Kim

It's great that the reserch is on going, and encouraging that it looks like they are looking at issues that have been suspected by so many parents. I wonder if years from now, they will recommend that the immunization process be changed and administered more safely?

Talked to Lab corp. They said they DO do yeast testing. They do either blood or urine, however urine will detect yeast in urinary tract. I told them I was looking for yeast in the digestive tract. She said it sounded like blood would be best. She put me on hold to talk to the technician? He said they can't recommend what test Dr. is to order, but blood yeast culture was a common test. Kim

Claire, I'm so glad you're here this morning, thanks. The Dysbiosis Marker is urine, the Candida is blood. The girl I spoke with said they would send me to a Lab Corp. Lab. Does this make any sense? My Peds. office said Lab Corp. didn't do Candida testing. Now I'm throughly confused. The first part of the Candida test, Immunodiffusion says "to detect precipitating antibodies to both Candida cytoplasm and mannan antigen fraction". I know from prior reading the blood is supposed to be more reliable than urine. The girl I talked to said they are unable to guide you in what tests to order. Also on the hair element, the hair does have to come from back of the head. She said the bangs are newer growth. She also said hair from south of head, haha is reliable. Can you hear that conversation. Ahhh, son would you mind taking a little sampling, putting it on this tiny scale they sent us, so Mom can mail it away? Oh by the way it has to be 1 inch, so could you measure it too. I think I will have to wait for some head hair growing time. Got to decide what yeast test Claire. What do you think? Also, thanks for the tip about the Glutathione. That is something I think is worth it for both Now. Kim

I am in the process of ordering the Candida $159.00 test from direst labs. This morning I have been looking at the tests and trying to decide if ordering the organic acid profile $266.00 which would give me some methylation information,yeast and B vitamins, with many other things I'm not fimiliar with, or just to go with the yeast for now, along with the hair element test. My plan is to start youngest son with the eating issues on some digestive enzymes, and try to get a handle on yeast issues if present. I have heard of a gastro. Dr. in our area who has ordered yeast testing for a neighbor of mine. If this test shows a problem, I'm hoping my reg. Ped will refer me to this man so I can started preparing his system for vit/supps. when I get my insurance changed, they are telling me July will be the earliest the change to Blue Cross will go into effect. At that time HOPEFULLY I can start with a DAN/or ALT. medical Dr./possibly Pfeiffer. The rest of the testing should be covered by then. Also I am calling them to see about hair length, and to see if it can come from the bang area for oldest son. I think the odds of him excreting metals is higher since he has been taking Bonnies Vit. and flax/borage for a few months. I have my doubts that youngest would be excreting due to low anti-oxidant levels? Well have to see. I hate to have too many test done now, as I would not to start any heavy duty supplements without guidance of an MD. It doesn't look like the Organic Acid test, tests for Pyroluria, other than giving B vit. info. If anyone has any thoughts on any of this would love the feed back. Thanks! Kim

efgh, I will see what I can find on the polio part as soon as I can get to it. I will certainly let you know what I find. Kim

efgh, Thanks for bring this to my attention. Looks like I will be dealing with this too. Can you tell me if your Dr. Understands why you have concernes with this, or is he treating you like you're over the edge? Sounds to me like the DT/Polio is the best bet too. Did you look into how safe giving the polio again is, or are you taking your Dr.s word for it and going ahead with it? Thanks again! Kim

Claire, Did you possibly get any idea of the criteria Dr. Walsh used to distinguish TS from tic syndromes? I know Daniel just talked about low zinc on another thread, but I'm assuming Chemars son had low zinc at one time or another also. Just curious. Kim

Efgh, OH NO. I don't think my 12 year old has had a DT, it hasn't been mentioned to me. I wonder if he could have had it at 10. I really don't want to deal with THAT right now. I will get on finding his immun. card. Thanks for that information. Kim Did you decide to do the DT/polio?