kim

Peglem, I though your post here contained amazing info http://www.latitudes.org/forums/index.php?showtopic=3411. I read the post, but didn't read the Megson paper until later. I was posting on another thread about some of the same stuff (sort of)! I will be going back through it, (probably in the wee hours of the morning). If we both have time, I would love to try to take that post apart with you. There are so many questions that I have regarding strep and the sulfur system that Carolyn N. and I have really been getting acquainted with. I'm going to leave that alone for now, but I might have lots of questions for you. I'm thinking of the MTHFR mutation that we have touched on several times recently, antiphospholipid syndome, the children who have had severe muscle symptoms in relationship to illness, injury....even those slow head turning tics (muscle contraction, or tightness as described by my youngest son) and finally, has anyone wondered why a blood pressure med (clonidine) helps tics in some cases? These were the excerpts that really caught my eye. Faith the fat metabolism (family history of lipoma) The info on B12 and folate, your son's symptom increase with strep althought not clear cut PANDAS, well your son popped to mind here. Just seemed like info others might be looking at too. http://en.wikipedia.org/wiki/Choline Choline as a supplement It is well established that supplements of methyl group transfer vitamins B6, B12, folic acid reduce the blood titer of homocysteine and prevent heart disease. Choline is a necessary source of methyl groups for methyl group transfer. Supplements of lecithin/choline by Central Soya scientists reduced heart disease in laboratory studies and Due to its role in lipid metabolism, choline has also found its way into nutritional supplements which claim to reduce body fat; but there is little or no evidence to prove that it has any effect on reducing excess body fat or that taking high amounts of choline will increase the rate at which fat is metabolised. Acetylcholine http://en.wikipedia.org/wiki/Acetylcholine Acetylcholine has functions both in the peripheral nervous system (PNS) and in the central nervous system (CNS) as a neuromodulator. In the PNS, acetylcholine activates muscles, and is a major neurotransmitter in the autonomic nervous system. In the CNS, acetylcholine and the associated neurons form a neurotransmitter system, the cholinergic system, which tends to cause excitatory actions. and In PNS In the peripheral nervous system, acetylcholine activates muscles, and is a major neurotransmitter in the autonomic nervous system. . When acetylcholine binds to acetylcholine receptors on skeletal muscle fibers, it opens ligand gated sodium channels in the cell membrane. Sodium ions then enter the muscle cell, stimulating muscle contraction. Acetylcholine, while inducing contraction of skeletal muscles, instead induces decreased contraction in cardiac muscle fibers. This distinction is attributed to differences in receptor structure between skeletal and cardiac fibers. http://www.ncbi.nlm.nih.gov/pubmed/11406107 bolding mine Transport of choline and its relationship to the expression of the organic cation transporters in a rat brain microvessel endothelial cell line (RBE4).Friedrich A, George RL, Bridges CC, Prasad PD, Ganapathy V. Department of Biochemistry and Molecular Biology, Medical College of Georgia, Augusta 30912, USA. The present study was undertaken to elucidate the functional characteristics of choline uptake and deduce the relationship between choline uptake and the expression of organic cation transporters in the rat brain microvessel endothelial cell line RBE4. Confluent RBE4 cells were found to express a high affinity choline uptake system. The system is Na(+)-independent and shows a Michaelis-Menten constant of approx. 20 microM for choline. The choline analogue hemicholinium-3 inhibits choline uptake in these cells with an inhibition constant of approx. 50 microM. The uptake system is also susceptible for inhibition by various organic cations, including 1-methyl-4-phenylpyridinium, 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine, clonidine, procainamide, and tetramethylammonium Does antiphospholipid syndrome play a part here? I didn't read the whole page or the studies that he usually cites. http://www.raysahelian.com/choline.html THE MEMORY NUTRIENTS—CHOLINE AND PHOSPHOLIPIDS from the book Mind Boosters by Ray Sahelian, M.D. Like omega-3 fatty acids, phospholipids are also important for optimal brain health. As the name implies, phospholipids are made of the combination of lipids (fats) and the mineral phosphorus. Phospholipids are found in high concentrations in the lining of practically every cell of the body, including brain cells. They help brain cells communicate and influence how well receptors function. Although present in many foods, phospholipids are found in higher concentrations in soy, eggs and the brain tissue of animals. There may actually be a biochemical rational for the folk wisdom that says eating brain makes one smarter. The two most common phospholipid supplements sold over the counter are phosphatidylcholine and phosphatidylserine. Phosphatidylcholine is also known as lecithin. This chapter explains the role and function of phospholipids, their clinical effects, and practical recommendations for or against supplementation. In addition to these phospholipids, I will also discuss choline, a nutrient that helps form phosphatidylcholine. Choline is the precursor to acetylcholine, the brain chemical involved with memory. Choline has been sold over the counter for many years. A new and more activated form of choline, called CDP-choline, became available in the US in 1998.

Ran across this while looking for something else, had to post for anyone with limited eaters. My youngest son showed CLEAR regression in this dept, not from birth. Totally wonderful eater, until something changed. I can't help but to think of how many vaccines list anorexia in the adverse events section. That's not to say that naturally occuring illness couldn't precipitate also though. http://lib.bioinfo.pl/pmid:17823502 Neuroendocrinology. 2007 Sep 7; : 17823502 (P,S,E, Regulation of Food Intake by Inflammatory Cytokines in the Brain. Jessica B Buchanan, Rodney W Johnson A number of inflammatory cytokines are synthesized and released after activation of the immune system. In addition to other biological effects, these cytokines can potently inhibit food intake. Cytokine-mediated inhibition of food intake is of particular importance because excessive production of peripheral inflammatory cytokines is often associated with the cachexia-anorexia syndrome seen in some chronic diseases. The weight loss in cachexia is associated with an increase in morbidity and mortality. Understanding how cytokines regulate food intake may be crucial in enhancing quality of life and facilitating recovery in patients exhibiting cachexia. This review describes the main inflammatory cytokines that influence food intake and explores how peripheral cytokines communicate with hypothalamic nuclei to influence feeding. Copyright © 2007 S. Karger AG, Basel.

Sunshine, I happen to think we all have a genetic susceptabilty to gorgeous kids here As always don't count on complete or accurate info here. I'm always learning and revising opinions on all of this, but here's a few thoughts. And BTW thank you to all who responded. Michelle and Myrose, I hope there is something here that you find interesting or useful. Cheri and I were talking about this on the glaucoma thread. We were discussing scar tissue in relationship to all of this. My son has a friend who has basically been his best friend since 3 yr. preschool. This friend has had some mild tics. They were particularly noticable after chickenpox and mono. He cut his arm rather badly this summer. He has scar tissue almost bubbling out of the scar where the stitches were. I called his mom and asked her if he had had an infection in the cut. She said no, it looked great until the stitches came out, then all of this scar tissue appeared, but she did say that he was allergic to sulfa medications. I'm not sure how sulfa drugs fit in, but it seems it might be important. I'm not sure if you have been reading Carolyn N's thread, but it looks to me like the CBS mutation and the MTHFR both could factor into this. Since your son had a + - for CBS (is that right?) It seems we are right back to methylation. Is the CBS mutation responsible for "turing off" the ability of the EXT gene to expression of heperan sulfate? In one of two articles posted there (Elizabeth Waring and Susan Owens have done the most research on this, that I'm aware of) It says that you need methinione and cystein to make sulfur. With MTHFR you have a problem with B12 which results in a problem with methionine synthesis. With CBS you have a problem with converting homocystein to cystein. Lack of cystein would equal yucky nails, I believe. There has to more more involved though. Oldest son is the one with the benign tumor, youngest had the nail problem. So....? The articles posted there gives some other examples of how one could end up with low sulfation. Chlorine which is being discussed on yet another thread can further reduce sulfation apparently. One more thing, it looks to me like the role of sulfate diminishes in neuronal synapsis as you age. If these conditions are hereditary, why has the incidence of tics increased? You may see family members with the same mutations, but no tics. Now, remember, we have 3 studies that show higher numbers of kids that tic, with higher amts. of thimerosal (just one thing that comes to mind, I'm sure there are many environmental toxins that could be increasing odds of this, but if there is ONE thing that has been acknowledged in those studies, it was increase in tics). That bugs me. It is SO NOT focused on. Now since you are a fellow bony tumor parent look at this.......bolding mine http://www.researchcrossroads.com/index.ph...rant_id=3210354 We found that the GluR1 subunit of AMPA-type glutamate receptors binds heparin, and that surface expression of AMPA receptors is drastically reduced in EXT1-deficient neurons in vitro. Abnormalities in the glutamate receptor system have been implicated as a potential cause of autism spectrum disorders. Based on these observations, we hypothesize that neuronal HS deficiency causes abnormal glutamatergic synaptic transmission, which in turn results in the development of autistic traits. In this project, we aim at demonstrating that genetic disruption of HS synthesis results in social interaction deficits and impaired glutamate receptor function of the animal. So it looks like if you have a deficiency in sulfate (heparan sulfate in this case) you have drastically reduced AMPA receptors, if their hypothesis proves correct. I suspect we are "lite" on heparan sulfate. I think that situation gets worse during illness, allergy season, diet could play a part too. I don't think PST is our biggest problem though, a factor maybe, but not the pathway that is MOST affected. These GAGS are shed when there is inflammation. They are also involved in what type of infection fighters are called up, if I'm reading this right. bolding mine http://www.jimmunol.org/cgi/content/abstract/154/2/871 Heparan sulfate initiates signals in murine macrophages leading to divergent biologic outcomes LE Wrenshall, FB Cerra, RK Singh and JL Platt Department of Surgery, University of Minnesota, Minneapolis 55455. If you are born with a lack of sulfate, it looks like you have gut vulnerability because these things are found extensively in the gut, and they protect the lining from toxins and pathogens fungus parasites etc. Since these carbohydrate chains are negatively charged, they repel each other (in the case of chondrotin sulfate as they repel each other they cushion joints), and mediate in what type of bacteria/virus are attracted to the cell expressing them and looks like they play a role in which virus/bacteria are able to enter. Cheri, if you made it this far...I'm wondering if the floppy larynx and the concave chest that you described with your affected son was cartilage that was not formed exactly right? It will try to find something to show what I'm getting at there. I'll try to get back to that. As far as the finger/toe nails. I think my youngest son had MORE damage from having a hereditary condition that was worsened from day one, by getting the HEP B birth dose (oldest son didn't receive that until I believe week 5). I SAW the reaction with him flaying his head around with his mouth open. I think he tured orange and had a problem with the measles vaccine at one year because of an inability to utilize/convert beta carotein and inadequte cystein (wouldn't surprise me a bit to see CBS mutation here either) which was probably due to low stores of vit A (vit A is well known to be important in dealing with measles) His sulfur deficiency and gut damage was not allowing proper nutrient abosorbtion or adequate ability to handle protein. He shunned it, and stopped eating normally. The weird thing, this child who is SO taste sensitive almost craves garlic and onion, both sulfur containing foods. Well, If I read this back, I'll probably delete it, so I'm just going to hit send, spelling mistakes and all. There is lot's more where all of this came from, so if anyone has questions, please feel free to ask.

not to keep anyone in suspense, this whole thing just looks to be a problem with sulfur metabolism again. Cheri, I'm really glad that you posted that. My oldest son has never had any nail problems either. Just my youngest. I thought he was born with weird (short, jagged, thin nails, but I wasn't completley sure until Sunshine posted about her son. She had shared "first things noticed" about new baby and it was everything beautiful except those nails. Sunshine, before I get off on a big tangent here, is your son is considered PANDAS? I really like this site. Just easy practical info on sulfur stuff. Found in http://www.canarys-eye-view.org/metabolic_...lism/index.html amino acids methionine and cysteine, important for detoxification of the blood taurine, which acts as a "dock" for sulfur [what does that mean?] Sulfur-rich foods A few sulfur compounds important to the human body: chondroitin - a major component of cartilage; helps keep it resilient by absorbing water. Also accelerates bone mineralization & bone repair. (Biochemical basis of the pharmacologic action of chondroitin sulfates on the osteoarticular system. Bali JP, Cousse H, Neuzil E.) heparin - a glycosaminoglycan blood anticoagulant produced by the liver fibrinogen - a large plasma protein molecule, essential for blood clotting. thiamine (vitamin B1): thiamin pyrophosphate participates as a coenzyme in the decarboxylation of both alpha-ketoglutarate and pyruvate, and in transketolase reactions. Important to skin biotin - necessary for four different carboxylases (enzymes) to catalyze their specific metabolic reactions. Can only be synthesized by bacteria, yeasts, molds, algae, and some plant species. Important to hair. beta-keratin - the main protein in nails, skin and hair. Contains cysteine. lipoic acid - a coenzyme involved in the decarboxylation of pyruvic acid and other keto acids coenzyme A directly involved in the metabolism of carbohydrates, proteins, and lipids, and plays a role in all the energy-requiring processes of the body Oxytocin (the "love hormone") - has a disulfide linkage between cysteine residues, which helps form an internal ring structure. inorganic sulfate

Does anyone remember really flimsy finger or toe nails from infancy with their child? I think unusually sparce hair could factor into this too.

Cheri, Thanks! Now I'm wondering if slathering any area prone to scar tissue build up with epsom salt or a transdermal MSM might be a good idea? I guess I do have more reseach to do. I also wonder if the "infection" part is involved. I haven't noticed any wounds on either of the boys looking like there was any problem, but the mole site did have an infection. The Dermatologist had put him on doxycycline for prevention. Later, I found out that that is one of the anti biotics, like zithromycin, that should not be taken within a couple of hours of calcium or magnesium (can't remember which is which right now) as it can bind and make the anti biotic less effective. I had told the dermatologist that he was on vitamins, even had them with me. For anyone reading who may be new to supplements, when they say tell your Dr. about any vits or minerals, herbal etc, don't rely on it, look it up ANY medications and possible interactions yourself.

That was WAY cute, Faith!

Cheri, I feel so bad asking you to have the mental "wear with all" to deal with this whole topic right now, but I would like to touch on something here. When looking at Crohn's and glaucoma and the abnormal collengen thing, which appears to possibly be related to a lack of heperan sulfate, I have to think of something that happened with oldest son. First, I interpreted something wrong in my original post. I quoted this then made this remark *I'm wondering if there was ever enough heparan sulfate to protect in some instances? Well, they weren't saying that RGTA's were protecting heperan sulfate, they were saying that the RGTA's mimic the growth factor protecting effects of it. I would think that implies that there was not enough (any?) of it there to start with. Now, what I was going to say about my son's experience has to do with what happened when he had that mole removed, which there probably was no good reason to do at the time. He got a staph infection and then developed a "birth mark" at the site. Looks like a rather large stain. Dr. said you can expect the area under it to thicken. Is this another example of overproduction of collegen, due to a lack of heparan sulfate? I had mentioned recently that I was looking at MSM as a way to provide sulfate to the boys system. I still have not done enough reseach to look for any down side to doing this. I have pretty much been spending time looking at ways that this might be important to other's as well. IF these chains are important to protecting the gut lining, and we have a deficiency from the start, what are all the implications in that area alone? Seems profound. Strep invading, suceptability to gastro disorders/infections, digestive issues, measles vaccine (?) leaky gut, inability to digest protein etc. Thats why I loved this bit and am very curious as to what this is ; pentosan polysulphate (Elmiron) http://www.ncbi.nlm.nih.gov/pubmed/1046566...Pubmed_RVDocSum and when he talks about this I want to shout "right on brother!" BTW I'm glad I didn't have my son take the prescription for the "steroid burst" that was prescribed for suspected poison ivy, based on what you just shared. Also, thank you for the details of your sons supplements. I will be saving that info It MUST be wonderful to see your son taking interest/control. Would love his take on any of this! Maybe it's time for a young/sharp mind to give this a go!

Cheri, I don't think the bony tumors are what is important in that study. It was only that someone linked the autistic traits in some people with these tumors. So, when they looked at what was different.....they found the defective HS synthesis due to mutations of the GlcNAc/GIcA co-polymerase. I doubt that many people with TS or autism have these tumors (althou it sees we have two on this forum, with a possible 3rd). I think I can also see other problems discussed here that could result in problems with same end result.....problems with adequtely sulfated carbohydrate chains or GAGS. GIcA is glucuronic acid GlcNAc from wiki http://en.wikipedia.org/wiki/N-Acetylglucosamine GlcNAc is the monomeric unit of the polymer chitin, which forms the outer coverings of insects and crustaceans. GlcNAc is also of note in neurotransmission, where it is thought to be an atypical neurotransmitter functioning in nocioceptive (pain) pathways. It has been proposed as a treatment for autoimmune diseases All very interesting in light of some of what you just posted. Illness or injury can result in the shedding of these glucosaminoglycan chains, resulting in even less of what might have been in low supply to begin with. I know you must be under an tremendous amt of stress right now Cheri. It sounds like your husband has been through a horrible time. I wasn't aware that he had been injured recently. I know this stuff sounds incredibley complicated. Maybe just sharing small bits of info on this subject at a time, will make it a little easier. Remember, we don't have the multiple or the hereditary part of what is discussed in that study. Only one son has 1 bony tumor. Youngest son doesn't, yet has the gut problems and mild (for quite some time now) tics. I think the researchers are thinking that altered sulfur metabolism could be what would be important in future autism research, which would verify what Waring suspected quite a while back. This might be a genetic link to her research

Cheri, It sure sounds like you are dealing with a lot right now! I'm glad things are going so well for your son though. I'm wondering if your husband has ever taken glucosamine-msm before? If you would let us know what effect if any, it has on any ts related behaviors, that would be great. Since the research on it's benefits for glaucoma seems light, it might also be wise to keep an eye out for any worsening in that dept. too tho. When you get a chance, could you read this study? This is what is making me think that we might have a very important piece of information here. http://www.researchcrossroads.com/index.ph...rant_id=3210354 I can pretty much verify that they are on to something! Can't speak much to the autism part, but most of us have seen a correlation in one way or another. Could very well be that there is more than on path to a problem with HS synthesis http://www.researchcrossroads.com/index.ph...rant_id=3210354 and We all know that these bony tumors are not a common findings, but defective heperan or sulfate or HS synthesis could be, it would seem.

Cheri, LOOK at these studies. It's not important that you understand everything in them Cheri, only making a case for a possible connection to our situation and some research that has been done. It's the involvement of the glycosaminoglycans, the possible problem with sulfur metabolism. It may be stemming from a different source (I wasn't sure any of what I had been studying was relavent to your guys) but it sure looks like there could be overlap here. From above article (bolding mine) In a clinical study, glucosamine treatment was found to reduce high intraocular pressure in glaucoma patients. Some researchers believe that glucosamine’s effectiveness in the treatment of glaucoma may derive from it stabilizing collagen structures in the eyes. Now this http://gut.bmj.com/cgi/content/abstract/53/1/85 and *I'm wondering if there was ever enough heparan sulfate to protect in some instances? and I thought I had found more studies on this but as I read back thru this info, I see where there isn't a lot in regards to glaucoma, more on Crohns. But, my intention was to see if there was a connection and from what I see, it's sure looks possible. http://findarticles.com/p/articles/mi_m0FD..._74510830/pg_16 Based on the observation that open-angle glaucoma may be due in part to a hyaluronic acid deficiency, a researcher has postulated a beneficial effect of glucosamine sulfate (GS) for the treatment of glaucoma.[93] He cites two case reports in which glaucoma patients given 3 g/day GS for osteoarthritis reported substantial drops in IOP. Because glucosamine sulfate is also a substrate for chondroitin sulfate, which has been found to be elevated above normal in the trabecular meshwork in glaucoma patients, it would seem to have the possible potential of further aggravation of the condition. While this author has not heard reports of exacerbation with glucosamine sulfate, close monitoring of IOP in patients with glaucoma supplemented with GS seems warranted, not only to prevent potential harm but to monitor potential benefits of this supplement. Double-blind studies to confirm the potential benefit of GS in glaucoma are needed. http://www.ncbi.nlm.nih.gov/pubmed/1112190...Pubmed_RVDocSum A pilot study of N-acetyl glucosamine, a nutritional substrate for glycosaminoglycan synthesis, in paediatric chronic inflammatory bowel disease.Salvatore S, Heuschkel R, Tomlin S, Davies SE, Edwards S, Walker-Smith JA, French I, Murch SH. University Department of Paediatric Gastroenterology, Royal Free, London, UK. BACKGROUND: The breakdown of glycosaminoglycans is an important consequence of inflammation at mucosal surfaces, and inhibition of metalloprotease activity may be effective in treating chronic inflammation. AIM: To report an alternative approach, using the nutriceutical agent N-acetyl glucosamine (GlcNAc), an amino-sugar directly incorporated into glycosaminoglycans and glycoproteins, as a substrate for tissue repair mechanisms. http://www.ncbi.nlm.nih.gov/pubmed/1046566...Pubmed_RVDocSum Med Hypotheses. 1999 Apr;52(4):297-301. Links Glycoaminoglycan (GAG) deficiency in protective barrier as an underlying, primary cause of ulcerative colitis, Crohn's disease interstitial cystitis and possibly Reiter's syndrome.Russell AL. Ulcerative colitis, Crohn's disease and interstitial cystitis share many common features, the most important of which is a defect in the glycoaminoglycan (GAG) defensive barrier. This defect allows penetration of toxins causing localized inflammatory response, followed by fibrosis and distant pathological changes, together with a myriad of biochemical and immunological changes. This one is too precious http://www.ncbi.nlm.nih.gov/pubmed/1046566...Pubmed_RVDocSum Med Hypotheses. 1999 Apr;52(4):297-301. Links Glycoaminoglycan (GAG) deficiency in protective barrier as an underlying, primary cause of ulcerative colitis, Crohn's disease interstitial cystitis and possibly Reiter's syndrome.Russell AL. Ulcerative colitis, Crohn's disease and interstitial cystitis share many common features, the most important of which is a defect in the glycoaminoglycan (GAG) defensive barrier. This defect allows penetration of toxins causing localized inflammatory response, followed by fibrosis and distant pathological changes, together with a myriad of biochemical and immunological changes. The latter has caused confusion as to etiology of the aforementioned disorders. This hypothesis is somewhat supported by the fact that agents such as glucosamine and pentosan polysulphate (Elmiron) that replace the GAG layer, improve the conditions. The potential for extrapolation of this hypothesis to atherosclerosis and arthropathies exists. There is a great danger in modern medical research that if one misses the wood for the trees, one becomes hopelessly lost in the minutiae of research. At present, it is embarrassing that ulcerative colitis (UC), Crohn's (CR) and interstitial cystitis (IC) are the cause of a great deal of morbidity and occasionally mortality, yet after intensive research, the etiology and effective treatment eludes us. The research in the past has focused extensively on inflammatory response in the mucosal lining, and biochemical, infective and immunological changes in the serum. This has led to a vast array of research pathways that seem at the present time to be totally lost and, might I say, aimless in direction, as a cause for these conditions, that remain amongst the most imperically treated in modern medicine. Another possible syndrome in this class would be Reiter's, which has many features in common with the above. The basic tenet of a GAG deficiency hypothesis is that, as shown in Figure 1A, an intact GAG layer provides, firstly, a mechanical and electrostatic defence against penetration of infective agents, toxins, antigenic protein moieties, etc. and, secondly, the prevention of extravasation of body fluid components. A degraded GAG layer is the start of the disease cascade of the above group of illnesses

http://www.vitaminexpress.com/encyclopedia...Glucosamine.php and Cheri, I don't know how closely you have been able to follow the discussion here about sulfur, mostly found on Carolyn N's thread, but I did find this article interesting. I'm so sorry that your husband is having to deal with this. I really had no idea what glaucoma was. It looks like there a varying degree's of severity and treatment? Cheri, this subject of glycosylation, glycoproteins, the enzymes that aid in the formation of GAGS etc. is really looking like an area that I HOPE turns out to be at least a part of the puzzle for some. I'm looking for connections for your family, believe me. Again, the sharing of this info, could be important in a bigger picture. May be important for my own son's. Thank you. God Bless all under your roof! Kim I typed you quite a lengthy PM last nite and in a bump of the keyboard, it vanished.

Sue, I am in the process of making an appt. for my youngest son for the eye Dr. too. Thanks for sharing this. Maybe Cheri will have something to share. I know her husband was just bothered by eye testing. Sorry, no experience here with that.

Peglem. I had to laugh at your response. I was thinking that we probably didn't have "the best" test available out there. Our local hospital sure didn't have a very good rep as far as their imaging equip goes, back then. Since that time, they have updated somewhat. The yellow lines in the parking lot are now more the width of a car, instead of a dinosaur. What I remember about the test was all of the electrodes, and the strobe light. Was that a true EEG? No no Peglam, when we switched from the Ped to a family physician and I requested a full copy of their medical file transfered to new Dr. I was told that they didn't really need anything except their vax record. I told them that I would come in to pick up the files. They said that they would send it to new office. I said "no, I would rather pick them up." Then I was told it would be 40.00 per file if I picked them up. I asked why they would possibly charge me, if there was no charge to send it. I was told, it was because I might lose them! Sounds like quality medical care, hau? As far as the MRI report, don't you know that they ship that stuff off to a data storage company. Useless stuff like that! Probably cost me $1000.00 to get a hold of that.

Carolyn N, If you search "MSM heparan sulfate" or "MSM autism" you'll get a ton of articles. I'm going thru some of them this morning. Looks like there are people looking at this sulfur metabolism. The second article that I posted here, was nice to find as I have read info about redox on a few autism sites. Susan Owen's paper on GAGS (easy reading) http://osiris.sunderland.ac.uk/autism/owens.htm Probably not a good idea to inject mercury into people with a genetic problem with sulfur met. or could injected mercury or environmental/ amalgams etc. be enough to CAUSE this problem? http://www.grc.org/programs.aspx?year=2008&program=thiol Gordon Research Institute 9:00 am - 12:30 pm REGULATION AND TARGETING OF SULFUR METABOLISM Discussion Leader: Ursula Jakob (University of Michigan) May 2008 Italy Discussion Leader: Ursula Jakob (University of Michigan) Big old heperan sulfate article (pretty technical) http://www.nature.com/nature/journal/v446/...ature05817.html Heparan sulphate proteoglycans fine-tune mammalian physiology http://www.ibex.ca/ENZglyco.htm

my oldest son had one when he was about 8/9? They said it didn't show anything, but that they are not very accurate at that age because it's hard for the kids to stay still enough to get a lot of useful info. I wish I would have requested a copy of the report to read myself, now. He also had, an MRI (i think). It was the open machine that looks like a big donut. He had an IV. This was done because of headaches. Again, I was told it was ok, and again, I wish I had the report. I suppose I could still get them if I tried hard enough.

myrose, I have heard parents of children with autism a bit fed up with Kirkman's because of some of the additives and I have heard complaints about 100mgs of vit B. That just may be too high for some kids. I have always felt the amt of B in the Bontech vits, was responsible for a hyper reaction with my boys, when we first started them. For a manufacturer that designs vits for some of the very most sensitive kids, you would sort of think they may find another sweetner other than Sucralose. I'm not saying you should not give them a try, just thought I'd share some of the negatives that I've heard.

Carolyn, I didn't read the links that you provided yet, but wanted to send you this page. Andy might have some opinions on Cutler. He is one voice of many out there, but I do think he is a good one to look to for info. You might want to read his credentials, if you can find that page. http://onibasu.com/wiki/N-Acetyl_Cysteine_%28NAC%29 Cutler posts on NAC Glad the vax info was helpful .

CP, The thing that my overcrowded brain says is "control of the gated channels," is that a phrase that you're familiar with? Search "glutamate sodium potassium gated channels" if you want an overview of that. Had to edit to add....then explain it to me please! I know the influx of calcium is important here. I'll be back, gotta run right now

Andy, Thanks for the response. For the life of me, I can't find the article that I copied this from, but epsom salts probably wouldn't be enough.

CarolynN, I think the concern with moving metals is largely the state of the bodies ability to escort it out of the body once it's moblilized. I think the chance of it going from, say the kidney to the brain would be the worry. I sure am no expert here, and the fact that Daniel was given much lower amts of thimerosal than many kids, well, I don't think I would panic about the use of NAC at this point, whether or not it was in the DT, but yeah, I would have the same question that you do. From what I understand the recommendation was made to stop using thimerosal containing vaccines, but the ones on the shelves were never recalled. The expiration date certainly could have been far enough out, that it was still in there IMHO. They may have manufactured a single dose DT (the multidose vials are cheaper but required the thimerosal as a sanitizing agent) in 2001? I would be almost willing to bet that a county agency would be using the cheaper multidose vials, and did not dispose of them. Did you have any conversation, while there, about being concerned about thimerosal or was the discussion that you had with the Dr. that recommended the DT more about Pertussis? Pertussis has the reputation of being one on the "more reactive" vaccines. The only way to know for sure is to look at his vax record, the name of the vax and manufacturer and go from there, IF they recorded all of that info, which they are required to do, but many times DON'T. That's why any good "informed vaccine enthusiast" will tell you to read the insert yourself. Many times the "office people" will tell things that they believe to be true, but AREN'T. This looks like the vaccine that he may have been given? http://www.immunizationinfo.org/vaccineinf...etail.cfv?id=21 Product Name: Diphtheria and tetanus toxoids adsorbed (DT) Manufacturer: Sanofi Pasteur Year licensed: 1984 If you can find out what year they even started manufacturing the single dose vax, it would maybe be helpful.

Faith, I agree Faith. It looks like you and Debbie each have a child with one variant MTHFR gene. This would be a heterozygous mutation (one variant gene) according to this site. http://www.fvleiden.org/ask/51.html It also doesn't look like they are very concerned about a heterozygous mutation, more concerned if it is homozygous (two variant genes) I'm wondering why the Dr.s looked for it? Were any other genetic abnormalities checked for, or just the MTHFR? I don't think they know the significance at this point, but they were looking. Maybe inadequate sulfur isn't something that they are even considering. The CBS mutation the MTHFR and V leinden seem to be associated. Antiphospholipid and V leiden are associated. The ability to detox i think is a big part, but if you take another look at Carolyns Sulfur thread, you will see that these pathways need to be functioning right to make adequate amts of sulfur too. Heperan sulfate is involved in cell to cell communication and neurotransmission. SO.... How big of a piece to this puzzle could we be looking at, i don't know, but sure seems worth keeping the discussion going on. My boys may have a problem cellular expression of heparan sulfate and lack of GlcNAc(from what i have been able to gather GlcNAc is involved in pain pathways and autoimmunity). We have a mom who says her child got bruises for leaning her elbows on her thighs, petachia's and purpura with strep (i bumped that thread recently), antiphos and V leiden, my boys both had high MPV which suggest "newer" red blood cells (what happened to the old ones) the reports of rheumatic fever? It seems like there are so many associated conditions here. Do you remember this from Carolyn N's thread? Now check out this page http://www.med.uiuc.edu/hematology/PtHomocysteinemia.htm * my note MS=methionine synthesis......you can supplement methionine, but you may not avoid the problem of increased homocysteine by going that route. and and This one makes me wonder if a high fever or an increase in problems during hot months could factor in?

This is a great exchange of info Faith and Debbie 1! You GO Faith! I'm nominating you our resident MTHFR expert, oK? I think snickers are allowed when referencing this gene.

Juls, That is sort of a complicted supplement if you ask me so I can sure see where you would get confused. If you are using it for the cancer prevention, it looks like you should take it with a meal, so it will bind to nutrients and not deplete the body. If you give it away from meals, it looks like it's sometimes used to bring down excess iron, calcium etc. Then it appears that the IP6 and the inositol part are separate elements? If you do any research on it, it would be great if you post what your findings are. Here are a couple of sites that I quickly scanned regarding IP6 http://jn.nutrition.org/cgi/content/full/133/11/3778S http://www.naturalnews.com/022731.html IP6 - A Rising Star in the Prevention and Treatment of Cancer http://www.answers.com/topic/phytic-acid?cat=health Food science Phytic acid is found within the hulls of nuts, seeds, and grains.[1] In-home food preparation techniques can reduce the phytic acid in all of these foods. Simply cooking the food will reduce the phytic acid to some degree. More effective methods are soaking in an acid medium, lactic acid fermentation, and sprouting.[2] Phytic acid is a strong chelator of important minerals such as calcium, magnesium, iron and zinc and can therefore contribute to mineral deficiencies in people whose diets rely on these foods for their mineral intake such as those in developing countries.[3] In this way, it is an anti-nutrient.[1] For people with a particularly low intake of essential minerals, especially young children and those in developing countries, this effect can be undesirable. Dietary mineral chelators helps, through reducing the available minerals, to prevent over-mineralization of joints, blood vessels, and other parts of the body, which is most common in older persons.[citation needed] They do not correct the disorder that causes this negative distribution of substances though, and can reduce the availability of these minerals for other essential processes.[citation needed] and In addition to being found in plants, IP6 is contained within almost all mammalian cells, where it is important in regulating vital cellular functions such as signal transduction, cell proliferation, and differentiation. IP6 is also available in supplement form.

CP, I didn't mean to drop the ball on this, it's just that I looked at the intramax and my eyes went The thing that i scanned was that darn copper. Everytime I check into a new supplement it has copper. We struggle to keep zinc levels up, so I avoid things that would be used daily that contain it. I'll be on the lookout CP for any new info that I come across especially regarding these N-acetylgalactosamine, N-acetyglucosamine and N-acetylneuramaminic acid. Did you see this article from the anti basi ganglia thread? If this proves to be something useful, it could be so beneficial it would seem. Is the N-acetyglucosamine contained in intramax? I just didn't have enough time to really look at it, the other day. http://www.newscientist.com/channel/health...=mg19426074.500 Previous studies suggested that glucosamine, a dietary supplement commonly taken by people with osteoarthritis, has some immunosuppressive effects. This led Michael Demetriou and colleagues at the University of California, Irvine, to investigate a similar but more potent compound called N-acetylglucosamine (GlcNAc)