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kim
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Giselle, These are a few remarks that I have read along the way. I don't have personal experience with this, so understand these are just the opinions of posters/parents. You kind of get to know, who really knows "their stuff," though. They are the ones, that I tend to remember. Someone that I greatly respect, made the comment that DMSA is probably helping the body to excrete other nasties, besides just metals. DMSA may be providing a good bit of sulfur, which may be very beneficial to some. These are two reasons that some suspect that gains are seen, shortly after a challenge. One parent rages, about having to educate his DAN, then being charged a big bill. He was advised to stop chelating, based on low metal excretion, with DMSA challenge, when his son was still highly toxic. He feels the french Porpyrine test, is the only way to go. Some feel that there is a possibility of redistribution with DMSA challenges. These are just a few of the pros and cons that I can think of. Overall, it sounds like Hoyt reacted very well! Lumberjack, I think Vancomycin is the treatment most often prescribed for clostridia. Also probiotics with emphasis on saccharomyces boullaris. There may be other treatments. I think there is another antibiotic that is used frequently, but I can't remember what it is.
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Is anyone watching Jenny McCarthy on larry king? CNN Faith, Does anyone have a link to the actual study? It's all over the news this morning, that thimerosal is SAFE. If it doesn't contain info like what Dr. Pessah is looking at (http://www.ucdmc.ucdavis.edu/mindinstitute/events/toxicology_recorded_events.html....2/3 of the way through, it gets really interesting), I doubt many of the parents, that are really up on the issue, are going to buy the results anyway. This is not the first time they have claimed there is no connection. If you really want some good info on the thimerosal debacle, read the book Evidence of Harm, by David Kirby. Then go to Put Children first.org, and read as much of the transcripts from Simpsonwood as possible. My understanding is that tics were one of the highest events of statistical significance. http://www.putchildrenfirst.org/ http://www.putchildrenfirst.org/index2.html Aside from mercury, I think this statement from Gen. Rescue sums it up pretty well http://www.generationrescue.org/ The cause of this epidemic of NDs is extremely controversial. We believe the primary causes include the tripling of vaccines given to children in the last 15 years (mercury, aluminum and live viruses); maternal toxic load and prenatal vaccines; heavy metals like mercury in our air, water, and food; and the overuse of antibiotics. http://www.generationrescue.org/vaccines.html In 1983, the Centers for Disease Control recommended a total of 10 vaccines for our children. In 2007, the CDC recommends 36, an increase of 260%. (See a comparison here.) Yet, no studies have ever been done to compare neurological disorder ("ND") rates of unvaccinated children to vaccinated children. Was there an epidemic of diseases in the 1980s that created a need for so many more vaccines? Why do many other countries recommend fewer vaccines for their children? Is it coincidence that the tripling in vaccines and an explosion in neurological disorders coincide? In regards to the above "Study" references, I like the way this is explained, from a Put children first, page If a tobacco company sourced, funded, guided, and wrote scientific studies to prove cigarettes don't cause lung cancer, not a single American would give the studies any credibility. Yet, our own Centers for Disease Control (CDC), a government agency responsible for administering our National Immunization Program, has done the very same thing by sourcing, funding, guiding, and writing research to try and prove that vaccines, and a mercury preservative used in vaccines, have not fueled an epidemic of autism and other neurodevelopmental disorders in our nation's children. a
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Mike, Michele had mentioned that recently too. Do you have a link for that?
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Frazer, I agree that it would probably be better to have your own test done and sent in, however if you have insurance and money is an issue, you can ask your reg Dr. to do a good blood profile for you. Most Dr.s are pretty willing to test lead (will show up if you have ongoing exposure) and if you tell him you would like zinc and P5P (B6) tested also, you may not get too much flack. My very mainstream Pediatrician was willing to test for those, but if I would have mentioned something like pyroluria, I think I would have gotten "that look." It's just is not a condition that is recognized by reg. drs. I don't know if the testing would be as accurate as the labs that specifically do pyroluria testing (probably not), but it would be something. If you decide to have a blood profile done, be sure to ask for a copy of the report. You may just want to tell the Dr. that it seems you have been catching every bug that comes along, instead of telling him what you're really looking for. One other thing, if you are taking any medications for TS or anything else, it is always best to have a qualified medical professionals guidance. Interactions btwn supplements and prescription drugs can have serious interactions in some cases.
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Whoo hooo! Great work Q's mom. So happy for Q and your whole family. That was a wonderfully detailed post too. Thank you so much for sharing. Please keep us updated on his progress.
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Giselle, That is great news! Did Hoyt have a challenge test for the metals? I'm asking because it seems many report improvements after the challenge. I don't know if you have a copy of this. May be helpful when you get your genetics results. I'm sure you will want to memorize these notes in their entirety prior to your appt. with Dr. Mullen Please keep us posted. Hugs to you and Hoyt! Common Terminology: Methyl group: A methyl group is simply a single carbon atom bonded to 3 hydrogen atoms (CH3). Methylation: Transfer of methyl groups from one chemical to another is called methylation. Essentially any chemical compound that has a methyl group as part of its chemical structure is capable of donating it to another chemical that needs it. The chemical that receives the methyl group is "methylated" . This process of moving methyl groups around is necessary for the functioning of several biochemical rea ctions such as DNA and RNA synthesis, creatinine generation, immune responses involved in silencing viruses etc. Role of enzymes: Most of the biochemical reactions in the body operate as cycles that are dependent on one or more enzymes. E.g. Chemical A gets converted to Chemical B; Chemical B in turn gets converted to Chemical C. Each of those steps has an enzyme involved that aids in the actual conversion of the first chemical into the second and so on. In terms of the various pathways that we are addressing, there are several enzymes involved. When these cycles are operating optimally, each chemical moves through the various steps continuously. It is important to remember that while it looks like each of these cycles is o ccurring in isolation, in reality there are several copies of each of these chemicals being converted into their respective intermediates by several copies of enzymes. It is not a single methionine molecule being converted to SAMe or a single homocysteine molecule being converted to methionine but multiple copies of each by multiple copies of the respective enzymes. I like the analogy I found on one site: start thinking of these not as single chemicals, but buckets full of each, and pumps (the enzymes) to move the chemical from one bucket to the next. Mutations or Single Nucleotide Polymorphism (SNP): A gene mutation is a permanent change in the DNA sequence that makes up a gene. Mutations range in size from one DNA base to a large segment of a chromosome. A Single Nucleotide Polymorphism or SNP (pronounced "snip"), is a small genetic change, or variation, that can occur within a person's DNA sequence. The genetic code is specified by the four nucleotide "letters" A (adenine), C (cytosine), T (thymine), and G (guanine). SNP variation occurs when a single nucleotide, such as an A, replaces one of the other three nucleotide letters: C, G, or T. Think of mutations in enzymes as breaks that affect the ability of the enzyme to do its job. Homozygous (++) mutations are ones where both copies of the gene are affected and heterozygous (+-) mutations are the ones where only one copy of the gene is affected. Each of us has two copies of each gene that we inherit from each parent. Some mutations speed up the activity of the enzyme (e.g. CBS upregulation) whereas others slow them down considerably (e.g. MTHFr C677T and A1298C, COMT mutations). The "slower" mutations create a situation where the bucket cannot be filled, like trying to fill the bath tub with the faucet only open to a drip. The "faster" mutations are like having a hole in the bucket. No matter how fast or slow you fill the bucket, the faster mutations drain out all of the contents of the bucket. This is why the CBS upregulation is such an overriding factor. It will drain the bucket. If the bucket is filling via a slow drip, due to the MTHFr C677T mutation, or methioninesynthaser eductase mutations, then having a hole in your bucket will be more of a problem than if you are able to easily refill your bucket because you do not have the slow mutations too. Note: The following material is intended to be used in conjunction with the pathway diagrams that are posted. Methylation Cycle: This is the pathway at the far right in the diagrams, it is also known as the SAM or Methio nine cycle. It is so named because of the intermediates involved in the cycle and also because this is the cycle that is responsible for the process of methylation that was described above (adding or removing methyl groups to various chemicals/metabolit es and/or reactions). The intermediates or chemicals involved in this cycle are methionine, S-adenosylmethionin e (SAM or SAMe), S-adenosylhomocyste ine (SAH) and homocysteine. It involves the regeneration of methionine from homocysteine. This conversion of homocysteine to methionine occurs with the help of Vitamin B12 (specifically the methyl version of Vitamin b12, methylcobalamin) and 5-methyltetrahydrof olate (folapro), which is an intermediate in the folate cycle. Look at this cycle as starting with methionine, methionine then being converted into the various inte rmediates such as SAMe, SAH, homocysteine and then ultimately being re-converted into methionine. Step I: This involves methionine being converted to SAMe in the presence of magnesium (Mg) and ATP (universal energy donor) by the enzyme methionineadenosylt ransferase (MAT). SAMe is called the universal methyl donor as it is the primary source of methyl groups for most other biochemical reactions including methylation of DNA, RNA, proteins, creatine etc. Step II: SAMe, once it donates its methyl group to the various reactions, gets converted to SAH. Step III: SAH in turn is metabolized to homocysteine by the enzyme S-adenosylhomocyste inehydrogenase (SAHH). This reaction also generates a chemical called adenosine. Step IV: There are three possible ways homocyste ine is removed as an intermediate. One is a reversible reaction that converts homocysteine back to methionine and is dependent on the folate cycle. The other is an irreversible reaction that is referred to as the TransSulfuration pathway. This involves the conversion of homocysteine into cystathione and its subsequent intermediates. The third involves the methylation of homocysteine into methionine, independent of the folate cycle. Let us take a look at each of them. a) TransSulfuration Cycle: This cycle entails the irreversible conversion of homocysteine into cystathione by the enzyme cystathione B-synthase (CBS) in the presence of Vitamin B6 and heme as cofactors. Cystathione is in turn converted to cysteine and alphaketoglutarate. The amount of cysteine generated by this process acts as the rate limiting factor for the subsequent products that are generated, i.e. taurine and/or glutath ione. If there is excess cysteine generated as a result of the CBS upregulation (mutation that makes the enzyme activity faster than normal), more taurine is generated instead of glutathione. Glutathione is one of the essential antioxidants involved with detoxification in our bodies. Some of the homocysteine goes back up the cycle to regenerate methionine. This process is mediated by the enzyme methionine synthase (MS aka MTR), with the aid of methylcobalamin (Vitamin B12 that has a methyl group as part of its structure). Essentially cobalamin accepts a methyl group from 5-methyltetrahydrof olate (which is an intermediate in the folate cycle) and becomes methylcobalamin. This is where the SAM and folate cycles meet. Think of each of the cycles as independent entities doing their business but each of them are dependent on one another in order to function properly. Methylcobalamin in turn donates the methyl group it gained to homoc ysteine and this converts homocysteine back to methionine. Essentially, homocysteine is being re-methylated to methionine. Once methylcobalamin donates its methyl group to methionine, it becomes cobalamin again. Some of this cobalamin is remethylated into methylcobalamin by the enzyme methioninesynthaser eductase (MSR aka MS_MTRR). Think of this as a reaction that is trying to maintain the levels of methylcobalamin. The methyl group necessary for this reaction is donated by SAMe (this reaction is not indicated on the diagram, this is just FYI for those of you wondering what the role of MSR is in the pathway). Just remember that the methyl group that is donated by methylcobalamin to convert homocysteine to methionine comes from the folate cycle (5-methyltetrahydro folate). Once methylcobalamin donates that methyl group to homocysteine, it becomes cobalamin which in turn gains a methyl group from SAMe to regenerate some of the methylcobalamin. c) If that wasn't complex enough, there is yet another reaction that converts homocysteine into methionine (look at the center of the methylation pathway diagram for this reaction). The enzyme involved here is betainehomocysteine methyltransferas e (BHMT). BHMT converts homocysteine into methionine in a reaction independent of the one that is mediated by MS, i.e. the one described before, which involves the transfer of a methyl group from 5-methyltetrahydrof olate to methylcobalamin and from methylcobalamin to homocysteine. Just remember that this step doesn't involve B12 or the folate cycle. In this case methionine is regenerated from homocysteine by the transfer of a methyl group from betaine (TMG or trimethylglycine) to homocysteine. Once TMG loses a methyl group to homocysteine, it gets converted to dimethylglycine (DMG). In turn homocysteine gains a methyl group and becomes methionine. This in essence is the Methylation pathway. Folate Cycle: This cycle involves the conversion of tetrahydrofolate (THF) into 5,10-methylenetetra hydrafolate which in turn gets converted to 5-methyltetrahydrof olate (MTHF). MTHF is then converted back into THF. Dietary folate, or folic acid that you get from your foods, is converted into a product called dihydrafolate (DHF) in the presence of Vitamin B3. DHF is then converted to THF, also with the aid of B3. THF is converted to 5,10-methylenetetra hydrofolate with help from Vitamin B6, P5P and Serine. Essentially THF gains a "methylene" group (different from methyl group) from serine to become 5,10-methylenetetra hydrofolate. Alternatively folinic acid (5-formyltetrahydro folate, different from folic acid) is also converted to 5,10-methylenetetra hydrofolate in a react ion occurring simultaneously. 5,10-methylenetetra hydrofolate is then converted to 5-methyltetrahydrof olate (MTHF) aka "Folapro" by the enzyme methylenetetrahydra folatereductase (MTHFr) with the aid of NADH, B2 and ATP. MTHFr: The MTHFr enzyme has multiple functions. However we are concerned with two of the roles it plays with respect to autism and these pathways. The first one being its involvement in the generation of MTHF within the folate cycle and the second being its ability to drive the conversion of BH2 to BH4 (BH4 cycle). Mutations in the part of the eznyme that is involved in the folate cycle are characterized as the "C677T" mutation and this mutation slows down the activity of the enzyme. This means MTHF production will be affected. Why does the amount of MTHF (folapro) matter? Because if you remember from the previous discussion on the Methylation pathway, MTHF is the c ompound that donates the methyl group to cobalamin which in turn donates it to homocysteine to regenerate methionine. If we have less of the MTHF to begin with, there will be less of it to go around to regenerate THF in the folate cycle, and to transfer methyl groups to regenerate methionine in the Methylation cycle. So this will affect not only the Folate cycle but also the Methylation cycle. Remember the Folate and Methylation pathways meet to transfer methyl groups and any breaks preceding that transfer will affect the functioning of both of the pathways. As mentioned before MTHFr has a dual role in terms of these pathways. While it is driving the folate cycle in one direction, it is also driving a reverse reaction on the other side. This reaction is the conversion of BH2 to BH4. Mutations that affect this part of the enzyme are characterized as "A1298C" mutation. BH4 Cycle: Tetrahydrobiopterin (BH4) is essential for normal central nervous system functioning. It is an essential factor or cofactor for the enzymes in the biological pathways necessary for synthesizing catecholamines (dopamine, noradrenaline/ norepinephrine) and indolamines (serotonin and melatonin), as well as for all three isotypes of nitric oxide synthases (NOS in the Urea cycle). BH4 is a cofactor for tyrosine and trytophan hydroxylase, the enzymes involved in catecholamine and indolamine synthesis respectively. The rate of BH4 formation determines the rate of production of these important neurotransmitters, because BH4 happens to be the rate limiting factor here. How much of it is present affects the ability to synthesize neurotransmitters like dopamine, norepinephrine, serotonin etc. and also affects the outcome of the Urea Cycle. Tyrosine (amino acid) is converted to dopamine through a series of reactions involving the e nzyme dihydroxyphenylalan inereductase (DHPR). Dopamine can be further metabolized to norepinephrine by the enzyme dopamine-b-hydroxyl ase. Dopamine and norepinephrine can also be metabolized by the enzyme monoamine oxidase (MAO) to 3,4,-dihydroxypheny lacetic acid or the enzyme Catechol-O-MethylTr ansferase (COMT) to 3-methoxytyramine. Action by both enzymes results in the formation of homovanillic acid (HVA or 3-methoxy-4hydroxy- phenylacetic acid ) and VMA. Serotonin (5-HT) is synthesized from the amino acid tryptophan in two steps catalyzed by the enzymes tryptophan hydroxylase and L-amino acid decarboxylase. Serotonin is metabolized by monoamine oxidase (MAO) to 5-hydroxyindoleacet ic acid (HIAA). Serotonin can also be methylated (first acetylated i.e. addition of acetyl group and then methylated) to form Melatonin. The enzyme involved in the acetylation of serotonin to form N-acetylserotonin is serotonin-N- acetyltransferas e. N-acetylserotonin is methylated (addition of methyl group) to form melatonin by the enzyme HydroxyIndole- O-MethylTransfer ase. The A1298C mutation in the MTHFr enzyme affects the conversion of dihydrobiopterin (BH2) to tetrahydrobiopterin (BH4). Less amounts of BH4 will therefore put a strain on the conversion of trytophan to serotonin and tyrosine to dopamine. This will lead to low levels of neurotransmitters such as dopamine, norepinephrine, serotonin and melatonin. In addition the activity level of the COMT enzyme will further affect the levels of dopamine and norepinephrine. COMT: Catechol-O-MethylTr ansferase is the enzyme involved in the metabolism of dopamine and norepinephrine into subsequent compounds such as HVA and VMA. The rate of activity of COMT will determine how fast these neurotransmitters will be broken down. Mutations in the COMT enzyme (COMT ++ or COMT +-) actually slow down the activity of the enzyme. Normal COMT activity (no mutations) is depicted as COMT -- Mutations in the COMT enzyme will slow down the breakdown of dopamine, therefore individuals who are COMT ++ or +- have higher (as in good) levels of dopamine compared to COMT -- individuals who are rapidly draining their dopamine stores. This condition is further exacerbated if the individual has the A1298C mutation (++ or +-) because their dopamine levels are low to begin with (remember these individuals have less BH4, so less dopamine gets made). Undermethylators: Dr.Amy categorizes individuals who are COMT -- as undermethylators. One of the ways the COMT enzyme breaks down dopamine is by using a methyl group donated by SAMe (remember it is the universal methyl donor). Therefore a COMT -- individual wi ll be in constant need of methyl groups as they are rapidly metabolizing dopamine. This puts a strain on the Methylation cycle as the demand on SAMe for methyl groups is increased. Think of this as COMT constantly demanding methyl groups from SAMe. If there are issues in the Methylation cycle or Folate cycle that affect the levels of SAMe (which in turn is dependent on the levels of methionine), there will be less methyl groups to begin with and even less to go around. It is like a domino affect. A break or strain in one cycle has a ripple effect on the rest as they are all co-dependent. Less methyl groups -> less methylation -> less RNA/DNA/protein synthesis/heavier viral load due to lack of methylation etc. Overmethylators: These are the individuals who are COMT ++. Mutations make the COMT enzyme slower, so it will not break down dopamine as rapidly. Since it is slower in metaboli zing dopamine, its demand for methyl groups is also reduced. Subsequently there is less of a strain on SAMe for methyl groups. So there will be relatively more methyl groups available for other biochemical reactions and to go around the various cycles. Remember these are just relative terms. An undermethylator is low in methyl groups and an overmethylator has a higher store of them, in comparison. Remember one of the reasons we are in this predicament with autism is because we have problems with methylation, regardless of the under or over status. In addition the strain on the BH4 cycle, the amount of BH4 will also affect the functioning of the Urea cycle. BH4 is the rate limiting factor for the Urea cycle. Two molecules of BH4 are necessary to drive the Urea cycle. One molecule will in turn generate peroxynitrite and if the individual has no BH4 left, super oxide is formed. Peroxynitrite and super oxide in combination cause damage to neurons when they accumulate in excess. . Peroxynitrite is a potent oxidant, which is capable of DNA strand scission (breaks open the bonds that keep the two DNA strands bound in a double-helix) , and nitrating tyrosine, all of which wreak havoc on the nervous system, especially a developing nervous system as in children. The ability to detoxify superoxide is facilitated by the enzyme superoxidedismutase (SOD). Urea Cycle: Urea is the chief nitrogenous waste of mammals. Most of our nitrogenous waste comes from the breakdown of amino acids. Breakdown of amino acids results in the production of ammonia (NH3). Ammonia is a toxic compound that is converted into its safer counterp art urea, by enzymes in the liver. Urea is then eliminated by our kidneys. Essentially the urea cycle involves the conversion of ammonia into urea with the help of the intermediates listed below. Arginine from our diet or from protein metabolism is converted to ornithine and urea by the enzyme Arginase. Ornithine is then converted to citrulline by ornithine transcabamoylase. This is the reaction on the far left side of the pathway diagram. Citrulline is converted back to arginine. This cycling of Arginine through the various intermediates is what converts ammonia to urea. Arginine is also required for the production of Nitric Oxide (NO) by the enzyme nitric oxide synthase (NOS or eNOS). This reaction is dependent on the levels of BH4 available from the BH4 cycle. Remember two molecules of BH4 are needed to generate Citrulline and NO. One molecule of BH4 will in turn generate peroxynitrite and if there is no BH4, super oxide is formed. If we do not have enough BH4 to go around because of the A1298C mutation, we are going to have trouble with ammonia. Because ammonia is dangerous to the body, any BH4 we have is going to be used to try to get rid of the ammonia rather than to be making neurotransmitters like serotonin and dopamine. Furthermore mutations in the NOS (eNOS) exacerbate the situation as they will affect the synthesis of NO. NO is needed for several functions including secretion of certain hormones, addressing inflammation, killing pathogens etc. In essence if the limited supply of BH4 puts a strain on the functioning of this pathway, excess ammonia will accumulate as there is not enough BH4 to help convert it to urea. In addition the lack of BH4 also creates damaging free radicals like peroxynitrite and super oxide (SOD is needed to detoxify superoxide). __._,_._
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reported by a poster on motering.commune vaccine forum http://www.mothering.com/discussions/forumdisplay.php?f=47 full page ad in today's USA Today (page 10A) http://www.generationrescue.org/pdf/070626.pdf Cal-Oregon Unvaccinated Survey Background "We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys." - Generation Rescue
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Frazer, What kind of Dr. are you seeing? Is it a reg. MD?
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Hi Michele, I just wondered if you have done any research regarding your sons test results. The info about your sons zinc levels being within normal range, made me curious. My understanding is that zinc is used in the "excreting process" resulting in low zinc, and high Kryptopyroles. Maybe you can find an explanation for that, prior to your appt. or can ask your Dr. at the consult, why zinc was "normal." Can you give the reference range that was listed on the test for zinc? Was your sons level in the low normal or higher end of range? This is an interesting article. It mentions low zinc in white cells? I don't have time to really try to figure out what it's saying, but would be interested to know what symptoms you see as a "fit" with your son. There are tons of articles in relationship to this. I see omega 6 mentioned in a few of them, which I don't remember reading before. Also, in regards to high hippuric, you may want to search toluene & benzoic acid. Not long ago I did some reading about benzoic acid and posted about it being in every maple syrup (the reg. ones like aunt Jamima, log cabin etc.) on the store shelf. You can also search benzoate on google. There are some researchers who are starting to warn of how toxic it is, and how many foods contain it. When you go in and pay for these expensive consultations, I think it's really important to have your list of questions ready. The more understanding you have of the test results in advance, the better!
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Son going to allergist for the 1st time. What to test for?
kim replied to Mike's topic in Tourette Syndrome and Tics
whoops, sorry mike a doctor of osteopathic medicine http://www.kidshealth.org/parent/system/do.../osteopath.html -
itsme and Imcgill, I wouold say we are fairly long term users, and we have not had any big increases. I mentioned my youngest sons flair up, a couple of weeks ago, just as school was starting tho. If that would have happened, 5 years ago, I would have been terrified. Instead, I just made sure he took enzymes with every meal (we slack on that sometimes) did epsom salt baths, upped his mag taurate (he normally takes 100mgs in addition to what he gets in vits....6 to 10 oer day) and said my prayers. It was a short lived flair up. My oldest son also had a significant flair with a staph infection. I would have to say I feel the Bonnies vits. are responsible for about a 75% improvement, but diet, enzymes, allergy control etc. play a part too, for my boys.
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CP, This article had caught my attention, awhile back, because it mentioned dopamine in relationship to love. I could have sworn I had read several accounts along the way of tics disappearing when someone was in a new relationship. Since my oldest son's tics are so minimal (I don't believe he tics outside of this house at all, just an occasional neck stretch or head twith when he's sitting relaxing), I was thinking OH NO. He just informed me last night, that he has a date for homecoming next weekend. I just thought it was interesting. http://www.livescience.com/health/050531_love_sex.html Romance seems to steep in parts of the brain that are rich in dopamine, a chemical known to affect emotions. These brain regions are also linked by other studies to the motivation for rewards.
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Carolyn, I had both boys stick their tongues out. Did it myself too. No quivers or sideways action. No tic meds for either boys, except a fairly breif bout of clonidine.
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Carole, Thanks for the response. This is obviously way over my head, but this sentence, I think, may have to do with what Dr. Pessah was talking about when he spoke of the peptide clip being disrupted (?) allowing empty space on the cells surface, where self proteins may be picked up Nucleotide sequence analysis of the chorea mAb VH genes revealed that mAb 24.3.1 VH gene was encoded by the VH1 germline gene family which encodes other anti-ganglioside VH genes associated with motor neuropathies. mAb recognition of tubulin and the neuronal cell surface with initiation of cell signaling and dopamine release supports an emerging theme in autoimmunity whereby cross-reactive or polyreactive autoantibodies against intracellular Ags recognize cell surface epitopes potentially leading to disease. Can you by any chance point me to a forum where this has been discussed? Dr. Pessah started that lecture with discussion of the rise in allergies. I found the whole thing to be so interesting. Just wish I could understand more of it.
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Son going to allergist for the 1st time. What to test for?
kim replied to Mike's topic in Tourette Syndrome and Tics
Mike, If the allergist is a conventional Dr. he will probably only do Ige testing. That is the type that is picked up with the individual injections or scratch tests. I have had my sons to 3 allergy Dr.s although the third, was not for allergy testing. He was a Pediatric allergist DO, but he was also into, what I guess you would say, non conventional methods and was familar with the test that are dicussed here. He is the one who wrote the order for our regular Ped, to get the blood or IGg testing done. It is possible to find one that does both, but you will have to check first. You may want to look for a DO. They seem to be a little more open minded and our insurance would cover this guy, (after the initial $300..00 appt). The individual injections covered a ton. Grasses, pollens, dustmites, animals and foods etc. The only food that was discovered this way, was peanut (mild) in my youngest son. His IgG or blood testing for sensitivity showed a strong reaction to peanut, milk, and a couple of other things. Pork was one, which was weird as he has never touched pork, that I know of. Milk and peanutbutter, are two of the foods in his very limited diet. My oldest son showed all of the grains...oats, barley, rye etc. with the blood or IgG testing. I do think it is worth while to have both done. -
Possible Pandas/High Strep Titres/Tics....tonsils angle?
kim replied to 81lumberjack's topic in Tourette Syndrome and Tics
Lumberjack, I edited above post, it didn't belong on your thread, I'm sorry. I wanted to ask Dedee and others what they used to manage pain after tonsil removal. As I mentioned in the other post, We were given tylenol with codeine, and told to alternate with motrin. My son did have a very sore throat (which I was not expecting) for quite some time after the surgery. I have since learned that tylenol is probably not what you want to be giving kids especially long term, as it's said to lower glutathione, which may be low in our kids to begin with. If you decide to go ahead with removal, maybe you could ask on this forum, if there are any supplements that would be a good idea to boolster your son prior to the surgery. http://neurotalk.psychcentral.com/forumdisplay.php?f=49 Pain management and getting my son healthier before having his tonsils removed, are two things I wish I would have given more thought to. Dedee, how long has it been since your sons tonsils were taken out, to his last titers test? -
Well, maybe if this vaccine makes it to market, there will be some warning about suspected unusual reactions to previous strep infections, but what about kids where the parents or Dr.s have not made a connection btwn behaviors/tic and strep. another article http://abclocal.go.com/kfsn/story?section=...&id=3855069 A VACCINE FOR STREP? Dr. Kotloff recently led a pilot study on a vaccine to prevent strep infections -- much like vaccines that prevent measles, mumps and polio. It's the first time in 30 years a vaccine for strep infections has been studied. Dr. Kotloff explains: "There were attempts to develop a group A strep vaccine for many, many years but there were major safety issues with developing those vaccines. These modern vaccines have been able to be designed to overcome some of the concerns of previous vaccines." bolding mine
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http://www.wchstv.com/newsroom/healthyforlife/2465.shtml The vaccine is not available to the public yet. The next step is to study it in more and younger people. I wonder if they will allow children with suspected autoimmune issues into the trial? NOPE, but once it's deemed safe, what do you want to bet it's recommended across the bd.
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bmom, YOU WERE ABSOULTELY right to decline vaccines if your daughter recently had strep and was on antibiotics. Was the shot Hep A or B? I can't post a lot right now, but I would encourage you to look at this site, and find out what immunizations are even required for school attendance in your state. I was shocked to see what my boys were given, and what's actually required for school here. There are exemptions available for school in the event you decide not to vaccinate further. http://www.vaclib.org/indexdoc.htm edit....be sure to pay attention to the difference btwn REQUIRED and RECOMMENDED when researching this .
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Has anyone seen this? It's all perfectly clear now! http://www.jimmunol.org/cgi/content/abstract/178/11/7412
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Possible Pandas/High Strep Titres/Tics....tonsils angle?
kim replied to 81lumberjack's topic in Tourette Syndrome and Tics
Welcome Lumberjack and Optimistic, Lumberjack, my oldest son now almost 15, had his tonsils out after repeated strep and ear infections. His tics were worse after removal, but I can't say that he fit the classic PANDAS profile thouogh either. Not what I would describe as "explosive onset." My youngest son also had many strep infections, was said to be a carrier, but his tonsils were not removed. Ped said they weren't enlarged enough, where my oldest sons were. I would have to guess that he had elevated titiers, due to the repeated positive cultures, with no symptoms., but titers were never tested. I do believe that my oldest son had less strep infections after his tonsils were removed. -
Emma 1, Can you recall the last time your daughter received any type of vaccination? Just wanted to add, that my son improved with zyrtec, but it was mostly behavioral change for the better. I think he was really suffering with histimine issues. He didn't have the normal watery eyes, stuffy nose symptoms, but he did itch from head to toe. I was also wondering, if you got a copy of any of the lab results that were done? Do you know if zinc levels were tested by any chance? Kim
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Julia 24, Since you mention brain fog and miscarriage and I think you have mentioned mood issues in the past (?), I'm wondering if you have ever looked into vit B12 deficiency? You can find some good info here. Rose has a B12 site...you can find the link under her signature http://neurotalk.psychcentral.com/forumdisplay.php?f=49 Did your Dr. do a standard blood profile when he did the mercury blood test? Can I ask you if you have any problems wiith acid reflux or bleeding, as in nose bleeds, wounds bleeding longer than expected? Have you ever noticed tingling in your hands or feet? Do you eat meat? I don't believe that would be the most accurate way to test for mercury body burden (if only it were that easy!). A hair test would probably be the safest, since you are trying to conceive, but finding a good Dr. to interpret the results, may be a little costly. A hair test can show high mercury, which may be good or bad (good..indicating that you are excreting or Bad... showing high exposure ) or low (Good..meaning you have had low exposure or BAD because you are NOT excreting). My understanding is that you are looking for skewed mineral results. This is the way I understand it, as explained by Andy Cutler. I think Carolyn has some info, on another way to read hair mercury results.
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MSG Info - HUGE Trigger for Son's Tics
kim replied to CarolynN's topic in Tourette Syndrome and Tics
Faith, I ran across this in an old aol email account, that I just happened to check today. I used to get Mercola's health newsletter there. http://articles.mercola.com/sites/articles...ers-of-msg.aspx And, if you do eat processed foods, be on the lookout for the many hidden names for MSG on food labels. They include (but are far from limited to): Gelatin Hydrolyzed Vegetable Protein (HVP) Yeast Extract Malted Barley Rice Syrup or Brown Rice Syrup There were a coulple of other articles too, that I haven't read yet. This is one California flouride in water http://articles.mercola.com/sites/articles...ds-at-risk.aspx -
Study links hyperactivity to certain food additives
kim replied to Claire's topic in Tourette Syndrome and Tics
Good idea Claire..... Thanks for taking the time to clarify and post all of these!