kim

Tami, NO WAY! See what I miss when I'm sitting around trying to find the definition of a word like "ubiquitous" so I can even sort off understand whatever abstact I'm reading at the time. Now, I'm going to have to get a look at that popsicle! That would be just completely over the top wouldn't it! I saw the commercial of the couple in the park. I sort of thought it was an odd because I thought it would make more people aware that there was some question about the healthfulness of corn syrup. I don't hear many parents make "informed" remarks in our neck of the woods. It seems most still think fruit roll ups are a health snack.

Sarah, I have read that Home Depot has a lead testing kit. I also read a story not long ago about dishes from Target. The white part tested lead free but some of the colored paint tested positive on the same plate. I also won't use a crock pot any more as some of those (ceramic) test positive. One of my crock pots is probably 20 years old. I don't feel any better about ceramic than teflon anymore.

Just wondering if anyone's child has one of these. My youngest son has one that is not quite as pronounced as the 4th image in the top row (it actually looks more like the 3rd image), but the same location as the 4th. http://images.google.com/images?gbv=2&...G=Search+Images

Buster, Epinephrine can be problematic in non PANDAS too. Wonder if there is an overlap there. This info on chitin/chitosin/N acetyl glucosamine is getting more and more interesting! Probblem is, I have no idea how much of this info an be extrapolated to a deficiency in O linked N acetyl glucosamine and glucuronic acid . Bolding mine http://nano.cancer.gov/news_center/2007/ja...2007-01-22c.asp Nanoparticles made of chitosan, a naturally occuring polymer isolated from crab and shrimp shells, have shown promise as carriers of anticancer drugs, antitumor genes, and other novel therapeutic agents (click here for earlier news stories). In addition, chitosan nanoparticles by themselves appear toxic to various types of malignant cells. To better understand this latter observation, Lifeng Qi, Ph.D., at West Virginia University, working with colleagues at Zhejiang University in Hangzhou, China, has conducted a detailed study evaluating the effect of chitosan nanoparticles on human liver cancer cells. http://www.yourdictionary.com/chitosan chitosan Definition chi·to·san (kīt′ə san′) noun a polysaccharide derived from chitin, that absorbs heavy metals while in solution: it is used in industry, esp. to purify waste water http://www.ncbi.nlm.nih.gov/pubmed/1757683...Pubmed_RVDocSum Chitosan malate inhibits growth and exotoxin production of toxic shock syndrome-inducing Staphylococcus aureus strains and group A streptococci. http://www.ncbi.nlm.nih.gov/pubmed/1711246...Pubmed_RVDocSum Chewing chitosan-containing gum effectively inhibits the growth of cariogenic bacteria. http://www.ncbi.nlm.nih.gov/pubmed/1754780...ogdbfrom=pubmed [Anti-Helicobacter pylori effect and regulation of T helper response of chitosan] CONCLUSIONS: Chitosan has anti-Hp effect and synergism with amoxicillin in vivo. Chitosan can up-regulate Th1 and Th2 response

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Myrose, I's kind of funny that you asked that question. When you posted about Topamax, I looked it up. I like to see how different drugs are thought to work. Since I've been trying to piece together the glycan chains with all of their different sugar molecule compositions, Topamax was interesting. The second link will give you the page on sucrose. edit....opps, I mean fructose. Also, wondering if you are confusing with sucrolos in regards to "really bad." http://en.wikipedia.org/wiki/Fructose Topiramate (brand name Topamax) is an anticonvulsant drug . http://en.wikipedia.org/wiki/Fructose

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Buster, Is the D8/17 test helpful in determining that theory? The proposed auto immune reaction is btwn GlcNAc and brain-derived lysoganglioside GM1, correct? I'm only asking because I'm really not all that "up" on all the PANDAS info and how IVIG actually works. I'm not sure if there are other elements that are thought to be the cross reactive? . What if you were not producing the amt. of GlcNAc that a person normally does, due to a genetics or damaged DNA?

Just another concern about getting these things at an older age, but you won't hear this as their ramping up their vaccine campaign complete with scary visuals and movie stars/celebs urging parents to vaccinate (Amada Pete and others). Gosh, when my kids had those 105 fevers I was standing in emergency wondering what the movie stars would think about it, doesn't everyone? From the 2nd link by the "vaccine expert" and co patent holder of rotavirus vaccine http://explorevaccines.wordpress.com/2008/...odern-epidemic/ The large outbreak of mumps in the spring of 2006 has led public health officials to re-evaluate this goal and to recognize that the transmission and epidemiology of mumps in highly vaccinated populations may be different than anticipated And College campuses with mumps outbreaks included ones with 77% to 97% of students having had 2 doses of a mumps vaccine. Diagnosing mumps proved to be problematic in vaccinated persons (ie, laboratory tests seemed to be insensitive and some apparent mumps cases had mild nonclassic illness). The outbreak demonstrated that mumps can sometimes transmit efficiently in highly vaccinated populations http://www.idinchildren.com/200809/guested.asp Commentary The Immunization Alliance Alliance working on a multi-pronged approach to recapture the public’s trust in immunization. by Paul A. Offit, MD Special to Infectious Diseases in Children http://insidevaccines.com/wordpress/2008/0...th-by-diarrhea/ And

Thank you Cheri and Buster! Cheri, you are such a sweetie with your vote of confidence. Buster, I was trying to figure out the GlcNAc connection from the link you posted (http://www.csus.edu/bios/faculty/Kirvan/Ki...JNI_article.pdf) back in March. It's on this thread. http://www.latitudes.org/forums/index.php?...l=basal+ganglia I have so many thoughts on this, its hard to know where to start, BUT I'm so glad you see the possible correlation here. I have been trying to get a post out on this all morning, and just don't have the time but I'll be back!

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EAMom, I watched that story when it originally aired. It's amazing to me to read the stories on this bd. and see my own boys who have totally different manifestations and yet we have something in common with almost everyone with one or the other son. My youngest stopped eating around 1 yr/15 mos. I've never narrowed it down exactly. All I know is he started eliminating foods from his formally robust diet. I have no options with food elimination. I read your post about (2 pieces of toast within 24 hours?) and think of how many days my youngest son will go with nothing but pretzels in 24 hours. I watch the little girl on the video and the way she just barely touches the food to her lips, and I see my son who does the same thing many days. Not only is he leary of the food, he is SO limited in what he will eat. This is not episodic, it's our life. I also remember a story that was aired about toddlers many years ago. Some of these kids were so bad, they would not even put water in their mouths. They were far too young to have any "self" or body image problems. My son doesn't either. He wants to eat and get almost as frustrated as we get, that he can't. I totally believe in the gene, with a trigger theory.

I noticed where glucosamine was being discussed on another thread, and sure didn't want to miss the opportunity to discuss that one! A defect in glycosylation is being researched in relationship to a condition that my oldest son has...the ole bony tumor (osteochondroma). So, Dr Demetriou's team found http://today.uci.edu/news/release_detail.asp?key=1666 In tests on mice, Demetriou found that genetic deficiencies in a process called protein glycosylation led to a spontaneous disease very similar to MS, including paralysis associated with inflammatory damage to the protective myelin coating on nerve cells and degeneration of axons and neurons. Protein glycosylation refers to the addition of specific sugars to proteins; virtually all cell-surface and secreted proteins have complex sugars attached to them. AND this statement http://www.newscientist.com/channel/health...=mg19426074.500 There are a couple of studies that seem to contradict the "less activation of TH1 cells" but first, my understanding of Chitin.... http://cat.inist.fr/?aModele=afficheN&cpsidt=16658782 Chitin is the substance that gives snails, oysters, lobster and shrimp their hard shell. Wiki says that it is also involved in pain pathways. I bought a Glucosamine supplement (hydrochloride) which contains chitin from the above mentioned sources.....not snail, but the other 3. I have not tried (kids) the N acetylglucosamine which I did find online here. http://www.iherb.com/ProductDetails.aspx?c...d=1295&at=0 So, GlcNAc is naturally occuring in our bodies AND in the cell wall of some bacteria (including strep) and fungus. Glucosamine supplements provide chitin which is a linear homopolymer of GLcNAc, so I'm sure hoping that means "the same." We have not even used the glucosamine up to this point. My oldest son had new blood work done Mon. We have been using minimal supplements leading up to that. I did give him one this morning. What really makes me curious, is if N acetyl glucosamine is part of a bigger picture or link btwn PANDAS related conditions and more of what would be thought to be TS in some cases. These are the studies that I wondered about being a contradiction? Oral administration of chitin down-regulates serum IgE levels and lung eosinophilia in the allergic mouse.Shibata Y, Foster LA, Bradfield JF, Myrvik QN. Department of Physiology, East Carolina University School of Medicine, Greenville, NC 27858, USA. Previous studies showed that local macrophages phagocytose nonantigenic chitin particles (1-10 micrometer polymers of N-acetyl-<cmd SC>d<cmd /SC> -glucosamine) through mannose receptors and produce IL-12, IL-18, and TNF-alpha. These cytokines lead to the production of IFN-gamma by NK cells. To determine whether chitin could down-regulate Th2 responses, chitin was given orally (8 mg/day for 3 days before and 13 days during ragweed allergen immunization) in BALB/c and C57BL/6 mice. These ragweed-immunized mice were given ragweed intratracheally on day 11. Three days after the challenge, the immunized mice with saline (controls) showed increases in serum IgE levels and lung eosinophil numbers. The chitin treatment resulted in decreases of these events in both strains. To dissect the inhibitory mechanisms of Th2 responses, spleen cells (4 x 106 cells/ml) isolated from the ragweed-immunized mice (controls) were cultured in the presence of ragweed and/or chitin for 3 days (recall responses). Ragweed alone stimulated the production of IL-4 (0.6 ng/ml), IL-5 (20 U/ml), and IL-10 (3.2 ng/ml), but not IFN-gamma. Ragweed/chitin stimulation resulted in significant decreases of IL-4, IL-5, and IL-10 levels and the production of IFN-gamma (48 U/ml). Moreover, spleen cells isolated from the chitin-treated mice showed ragweed-stimulated IFN-gamma production (15 U/ml) and significantly lower levels of the Th2 cytokines, suggesting that the immune responses were redirected toward a Th1 response. Collectively, these results indicate that chitin-induced innate immune responses down-regulate Th2-facilitated IgE production and lung eosinophilia in the allergic mouse. http://www.ncbi.nlm.nih.gov/pubmed/1155355...ogdbfrom=pubmed Infect Immun. 2001 Oct;69(10):6123-30. Links Th1 adjuvant N-acetyl-D-glucosamine polymer up-regulates Th1 immunity but down-regulates Th2 immunity against a mycobacterial protein (MPB-59) in interleukin-10-knockout and wild-type mice.Shibata Y, Honda I, Justice JP, Van Scott MR, Nakamura RM, Myrvik QN. Department of Physiology, East Carolina University Brody School of Medicine, Greenville, North Carolina 27858, USA. shibatay@mail.ecu.edu Treatment of mice with heat-killed (HK) Mycobacterium bovis BCG or 1- to 10-microm chitin particles (nonantigenic N-acetyl-D-glucosamine polymers) is known to induce innate immune responses, including gamma interferon (IFN-gamma) production, which plays a Th1 adjuvant role. However, HK BCG further induces prostaglandin E2-releasing spleen macrophages (Mphi) (PGE2-Mphi), which potentially inhibit Th1 adjuvant activities. We found that chitin particles did not induce PGE2-Mphi formation. To further assess whether chitin has Th1 adjuvant effects, interleukin-10 (IL-10)-knockout (KO) mice and their wild-type (WT, C57BL/6) controls were immunized with a 30-kDa MPB-59 mycobacterial protein mixed with chitin. Immunization with MPB-59 alone induced Th2 responses, characterized by increases in total serum immunoglobulin E (IgE) and specific serum IgG1 levels and spleen Th2 cells producing IL-4, IL-5, and IL-10. No IFN-gamma-producing spleen Th1 cells, specific serum IgG2a, or delayed-type hypersensitivity (DTH) footpad reactions were detected. On the other hand, chitin-MPB-59 immunization significantly increased spleen Th1 responses, DTH reaction, and serum IgG2a levels along with decreases of Th2 responses. The magnitude of these Th1 adjuvant effects was greater in IL-10-KO mice than in WT mice. In contrast, immunization with HK BCG-MPB-59 showed little or no Th1 adjuvant effect. These data indicate that chitin has a unique Th1 adjuvant effect on the development of Th1 immunity against a mycobacterial antigen. IL-10 down-regulates the adjuvant effect of chitin.

suep, Since impetigo is normally caused by staph or strep, I'm wondering if it was coming on when he went to camp? I hope you are able to spend some time reading through the PANDAS threads here. It sounds like Adam's family needs as much info as they can get, as soon as possible. Has encephalitis been ruled out? Do you know what anti biotic that he's on? Since the psyc thinks it may be viral, is he even on an anit biotic? Many parents here with children with strep induced movement disorders have found Azithromycin to be helpful. Please ask any questions that you think someone here could be helpful in answering. We have some parents with extensive knowledge on this disorder. Please keep us posted.

trubiano, This was really interesting to read. I remember a thread on an autism forum where parents were discussing coffee use for improving autistic symptoms. A derivative of caffeine called xanthine, is proposed to affect neurotransmitters. Here's some stuff that I found after reading your post. My vote is that the caffeine was what was responsible for the improvements that you saw. It just doesn't seem like the ginseng in the amt that your son probably got, would have that dramatic of an effect in that short of time. This first article appears to say that xanthine/caffeine will utilize/occupy (block) adenosine P1 receptors which are potent inhibitors of dopamine GABA glutamate acetylcholine, serotonin, noreprinephrine. Caffeine has the opposite effect, especially increasing noradrenaline and L DOPA. I can see how his concentration/fog and mood would improve, but I'm wondering if you saw any increase (or decrease if tics are present) in movements? http://books.google.com/books?id=sm2ZySXTm...5&ct=result http://www.progressivehealth.com/caffeine-adhd.asp Caffeine and the Treatment of ADHD It may seem weird to think of caffeine and the treatment of ADD/ADHD working together, but it may be possible. The active part of caffeine is methylxanthine, which is a mild stimulant that activates noradrenaline neurons. This then affects the local release of dopamine which is a key neurotransmitter. http://www.asic-cafe.org/pdf/abstract/18_035.pdf Thus, the present results substantiate that caffeine's low addictive potential is due to its failure to increase dopamine transmission in the shell of the nucleus accumbens. However, simultaneously, the same low doses of caffeine (0.5-5 mg/kg) stimulate dose-dependently the release of dopamine and acetylcholine in the medial prefrontal cortex. Thus, caffeine differs from the classical drugs of dependence by its lack of capacity to stimulate dopamine transmission in the shell of the nucleus accumbens. Conversely, the activated release of dopamine in the prefrontal cortex is consistent with psychostimulant and reinforcing properties of caffeine and the enhanced release of cortical acetylcholine might reflect the cognitive enhancing properties of caffeine. The difference between the abuse potential of the other dopaminergic drugs like cocaine and amphetamine, and caffeine may relate to their different mechanism of action at the level of dopamine. Ginseng and Parkinson's study http://www.sciencedirect.com/science?_ob=A...bedfc15e682f6f3 The herbal remedy, ginseng, has recently been demonstrated to possess neurotrophic and neuroprotective properties, which may be useful in preventing various forms of neuronal cell loss including the nigrostriatal degeneration seen in Parkinson's disease (PD). In these studies, we examine the potential neuroprotective actions of the ginseng extract, G115, in two rodent models of PD. Animals received oral administration of G115 prior to and/or following exposure to the parkinsonism-inducing neurotoxin, 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP), in mice, or its toxic metabolite, 1-methyl-4-phenylpyridinium (MPP+), in rats. Such treatment significantly and dramatically blocked tyrosine hydroxylase-positive cell loss in the substantia nigra and reduced the appearance of locomotor dysfunction. Thus, oral administration of ginseng appears to provide protection against neurotoxicity in rodent models of PD. Further examination of the neuroprotective actions of ginseng and its various elements may provide a potential means of slowing the progress of PD. http://en.wikipedia.org/wiki/Tyrosine_hydroxylase Tyrosine hydroxylase or tyrosine 3-monooxygenase is the enzyme responsible for catalyzing the conversion of the amino acid L-tyrosine to dihydroxyphenylalanine (DOPA). DOPA is a precursor for dopamine which in turn is a precursor for norepinephrine (noradrenaline) and epinephrine (adrenaline).

Caryn, I know exactly what you mean about wanting to be sure whether the stomach acid is too high or too low, with any long term supplement treatment. I know there is a danger of peptic ulcer with too much and all the problems that go along with too little. It does seem like you would know fairly quickly if you were increasing and it was a problem. Wouldn't acid reflux and pain get worse? I have heard lots of good things about milk thistle too. I'm wondering if you know anything about the best form of fiber to add to a childs diet? I'm thinking along the lines of Benefiber? I did buy two different types of Kombucha at a local vit shop. One was a brand called SYNERGY. It's flavored 'Passionberry Bliss," it comes in many different flavors. 4 grams sugar. It's flavored with blackberry juice and passionfruit juice. It reminds me of a watered down, wine cooler with a slightly more vinigery taste. The other one is G. T. Daves. This one is unflavored. I wanted one that would taste more like what you would probably get if you bought the kit and made it at home. The kit that I'm looking at is around 140.00. I wanted to make sure that I could get the kids to drink it, if I invested that much. I think my oldest son would, if he could see it helped with acid reflux and stomach stuff, but he wasn't wild about either one. Mr pickyness, carb craver, wouldn't have anything to do with either one. Soooo, I'm going to keep a couple of bottles in the frige, and have oldest son drink as much as I can get him too. One thing that I noticed is "polyphenols" on the lable of both. If you have a phenol intolerence???????? I did notice that I felt warm after drinking about 4 oz. It does list 10 mgs. glucuronic acid on the lable, which is what I was looking for. Also, L theanine 100 mgs. lactic acid 25 mg and Usnic acid 30 mg. Lactobacillus 1 billion and S. boulardii 1 billion. Folic acid 25% vitamin B2 20% vitamine B6 20% B 1 20% B3 20% B12 20%. This one has 2 grams sugar (unsweetened). It was $3.49 for a 16 oz. bottle. It will keep in frige for about 3 days after opening. I am wondering if I made it at home, if I could squeeze fresh fruit into it and get youngest son to drink it. Overall, I think it could be beneficial. I will be very interested to see what your friend has to say, if you hear back from her. I know a mom from another forum who has made HUGE wonderful gains with her once severely autistic son ( SO informed in many area's of chelation and biomed) uses this for her son, who has had terrible issues with yeast. She has also had very good things to say about gains with HBOT for the Mom who mentioned that here recently (another thread). edit. Caryn, I just noticed this from one of your posts If you gather info, hope you share. I go around daily with cystein, glucuronic acid, N acetyl glucosamine and heperan sulfate. There is so much to investigate and so little time with all of the other daily commitments. I'm actually trying to sleep again too, which I would just-a-soon ditch, but I was starting to look somewhere in my 80's.

Calicat, I just posted about this place on another thread. They do give supplement recommendations. Might want to check it out. Amen clinic website http://www.brainplace.com/ Maybe 5HTP or Tryptophan, as CP said, serotonin booster? Small amts. may be best, made my adult size son tired.

Thanks for the info Carole!

Hi Calicat, Pudgeo had posted about the Amen clinic. When I went to their site, I found this statement. That rang a bell with me too! As others have pointed out, this may just be a normal stage of development, but I do have to wonder if our kids get a little "extra rush," at times from it We don't have ADD here, or I didn't think so, anyway!

littleDaniel, Buster has some excellent info on titers. Here is one of his posts http://www.latitudes.org/forums/index.php?...amp;#entry25312 When you get to this, click on his name and it will give you an option of something like "read members posts." I think you will find it really helpful. You can also use the search box here. Just type in PANDAS and you will get A TON of threads. Please keep us posted!

Evol, What if this were a different medical condition that we were talking about here? Do we have the obligation to disclose everything that may have a genetic component to potential mates? I bet there are many of us that could beat ourselves up over not disclosing or scrutinizing partners, if that were the case. So you knew that there was a possibility that you could pass something on to future kids. Well, there was a possibility that you weren't going to either. Also, you mention that there is a tic disorder on hubbies side. Would your kids have even had any symptoms without a genetic contribution from both sides? I don't believe the answers are definitive in that dept. at this point. Please don't waste time feeling bad about this and don't allow anyone else to make you feel that way either. Just my two cents

Kristianne, I wonder if you could gently explain to your son that you understand that he may have a tickle or itch or just a sensation that makes him want to scratch, but others may not "get it," so it might be better if he does this in a way that others won't notice. I know if the impulse is strong enough, he's not going to be able to control it or wait to get to a spot where he can do it unnoticed, but it may be worth getting him to try, only when he's with other kids so he's not teased? If he can't, just remember, your child IS NOT the only one that does this. The licking thing either. Kids chew on their hair, clothes, etc. Also, six year olds spit! I can't tell you how many spit constantly in our pool on the garage floor, sidewalk, wherever! I don't know if their mimicking older brothers or what, but they do all kinds of things that can look a bit odd, and I'm talking about kids with no obvious movement disorders. I also know of a family that had a child who could read everything at about 3 years old, but he was a grabber/scratcher until he was about 10. Also, I'm wondering if the aunt and cousins that you mentioned have any autoimmune disorders or any family history of anything besides tics, such as lupus, arthritis, anything?

Welcome littleDaniel, Could you say if the phobia's started at the same time as the tics or were these present before? When you mentioned hand movements, I immediately thought of PANDAs which I'm sure you have read about here. Have you had him close his eyes and stand with his arms straight out in front of him? Do his fingers move in a piano playing fashion? I know that I have read that this is something to look for in strep induced movement disorders, but I don't really remember many PANDAS kids parents commenting on it. Has he been ill recently? Glad you found the forum. Many of us have gone through what you and your wife are now. I'm sure you will find many avenues to explore here!

Caryn, I was just reading your post on another thread and you said I have been reading about glucuronic acid every chance I get recently. It is involved in phase II of liver detox. I'm looking for a way to increase it. I'm reading everything I can find regarding Kombucha. It's a fermented drink. It seems to me that it would affect PH (and believe me I am not up on the PH stuff) in a way similar to apple cider vinegar. Many articles claim that it contains glucuronic acid, which assists in toxin removal. Have you heard of it or read anything about it in your research? Also, I thought I would leave this article here. I know people have asked how PANDAS situations may be helped with dietary changes. I thought this was interesting, as I wonder about compromised or different mucosal barrier in many of these conditions. I'm not sold on the "lectins" part of this article, but I did think it was interesting as it touched on something that a diverse group could have in common. http://www.bmj.com/cgi/content/full/318/7190/1023

hey guy123, A world without disease is a great thought isn't it. I don't know if we'll ever out smart mother nature though. I can just see being perfectly healthy and then starving to death because of this huge population. In regards to the scarey info above, have no fear. The pharma ninja's (is a ninja a good guy or bad?) are on it! So, it looks like Hib vaccine may have resulted in more pneumoniae cases, but not to worry we have a pneumoniae vaccine, but lo, we need to add more strains now because some that weren't that prevalent, are becoming more so, along with increase in staph. So we add more strains of Pneu and what else might we need? Of course! http://insidevaccines.com/wordpress/2008/0...nters-phase-ii/ Btwn the two boys we have had at least 2 cases of xray confirmed pneumoniae, two cases of staph, and vaccine reactions. :huh