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Everything posted by Caz

  1. I have a daughter that does not have ts, but would get into these frenzies. I often referred to her as my dr jeckyl and mr hyde kid, happy go lucky 95% of the time, but the other 5% - so defiant. Neither my husband or I could do anything with her when she got into one of these "moods". We had a hair analysis done about 5 weeks ago, and have been treating her for high hair copper for the past 4 weeks, and we have only had one incident in that time - and it was over in a few minutes, rather than hours, wheras before we were having 2 or 3 a week, and she has had no migraines in that time either and they were a weekly occurance, so maybe a hair analysis would help pin point whether metals are an issue. When I give my TS son his supplements, I now give my daughter 300mcg molybdenum, 60mg zinc picolinate, and 5 spirulina (apparently according to a naturopath I spoke to, spirulina contains metalothioine - I can't find any independant verification of this, even from the manufacturers). I am also giving her some NDF. I can't get over the change these supplements have made in her! Hope this helps Caz
  2. Wow Kim - some of us here have tried the houstin enzymes, but there are so many more I had never heard of. Thanks once again for the transcipt. Caz
  3. Good on you Andy. Hope it works for your child - and makes a difference for you. Remember to start slowly, and then gradually ramp up the dose. We are still at two drops, when we go past that we get symptom flareups - maybe gut troubles - not sure why, but we are still slowly easing up. I got my sons hair analysis back, and unforntunatly no mercury coming out in hair, but I just hope that that means he is excreting it thru urine, and not his hair. Overall the hair analysis showed improvement from last time, just about everything in the normal range, unlike before when we had real highs and real lows. My appt with Dr is Monday, so I will keep you updated. Next I want to do a urine heavy metal test to see if he is excreting.... Andy I noticed from another post that you are seeing Dr Levinson in Florida. On his website he mentions he treats movement disorders amongst other things. I watched his dan speech on the internet, and was very impressed. Does he have much experience with TS? Does he feel methylation is an issue in TS?
  4. Thanks for these transcipts Kim. I didn't get on the computer in time to hear either of these talks, but I really wanted to hear Dr Deth. Are you thinking of trying methyl b12? Anyone here doing shots? We are using sublingual drops, but I imagine the shots are the best way to go. Interesting what he said about tics and methylation. I wish a study could be done on tourettes and methylation. Caz
  5. Thanks Kim I popped in the listen for a while to biochat, but then the kids went crazy (school hols and it being am here not pm), so I had to log out. I appreciate all the info you have put up on this and other issues. Chelation seems to be fraught with issues. I had wondered about adding td-dmps to what we are doing, but it is another large cost, and for now, things seem to be going along ok. That being said, my kid has come down with the flu, and tics have increased dramatically, but we know this happens each time he is sick. I am giving extra zinc and vitamin c to help. Thanks for the tips with the pool chlorine. I was not aware that espom salts helped with the chlorine, as I was also not aware of sunbathing being an issue with chlorine. Thanks guys Caz
  6. Kim - I remember now you talking about your sons blood tests and that the pediatrician didn't seem to think anything of the results. Hopefully that is where integrated drs make the difference, they look at the big picture, rather than dismiss such results. Have you run the complete blood test again, to see if the results are the same, or if they are more "in range" now. Sometime eleveated lymphocytes indicate an active viral infection, if that was the case, and it is now passed, they may be more within range, and you can stop being concerned. If not, then you know that there is an area that needs further attention. I get so annoyed when Doctors just dismiss stuff and us as parents for being paranoid. We know that there is something "amiss" somewhere in our kids bodies, or they wouldn't have the issues they do, but most normal doctors just want to bandaid the problems and tell us the stop worrying. Can you tell me which dr will be on biochat on the 14th July. With the time difference I am listeing to the webcast at morning school drop off time, so its a bit tricky! Isn't it great thought!!!!!!!!!!!!!!! I read some notes from Dr McCandless and she mentioned milk thistle for the liver. I have never had a liver enzyme test done for my son, but we did do the functional liver test, which showed low glycination ability. That the one where you talk tylenol and a few other things and they test your bodies ability to detoxify it. Copper/zinc ratios are a big thing according to Pfieffer and Walsh. It shows that body has problems with its metalathionine. The dr I work with here in Perth thinks copper is a bigger problem than mercury and other heavy metals. He believes you have to get the copper out before the body can deal with the other metals. Not sure if that is entirely the case, but we worked on copper using zinc and molybdonum (not sure of spelling) vitamin c and antioxidants for the first year we did supps, and that was maybe the biggest thing in getting rid of the adhd symptoms. Looking forward to getting recent hair analysis results and seeing if copper is more in balance now. Caz
  7. I have posted some info on ndf plus usage on the thread called NDF. Interesting Kim about results suggesting b12/folate deficiency. The other stuff about heavy metal treatment and its antioxidant properties was interesting also. Caz
  8. I have been using ndf plus for my son for about 10 weeks now, we are still on a really low dose. At one point we increased the dose to quickly and the tics flaired badly, dont know if this was a gut thing, or an inablility to detox the stuff the ndf pulled or what. I believe it is helping, but we have not as yet had urine testing to show if it is pulling stuff. We recently did a hair analysis and will get the results in 2 - 3 weeks. I'll keep everyone posted as they arrive. I am led to believe that sometimes other nasties are pulled first, before mercury with this stuff. I cleans up numerous types of toxins in the body, so the low dose combined all the junk in my son's body may mean that we are yet to deal with mercury, either way, for us it has been part of a further improvement seen in recent months. We are also using GSE for gut cleaning, and mb12 / riboflavin-5 phosphase (which is activated b2 - a dr here says that if you cant activate vitamins, it is because you dont have enought activated b2 - as this is the vitamin that activated things such as b6 and folic acid to their usable form) I have used the ndf on my 2 other boys, one has improved greatly, the other goes up and down, but this is the one that has lots of throat clearing, and maybe needs the strep testing and immune system strengthening. Caz
  9. Kim, and others Thanks for the transcripts of the other speakers. All the research into Autism is really helpful in that they are working out best protocols for getting rid of heavy metals, gut bugs and inflammation, so I like to read all I can about it. The info on oxidative stress and how it refers to the methylation pathway and how methyl b12 kickstarts this is found in the following research oxidative stress markers The info I have been reading on Dr Neubranders site is in the downloads section Methyl b12 myth miracle or masterpiece IN this info he talks about how often kids that respond to b12 actually show high b12 in the blood, and he says that it is probably that they can't use it, and it just builds up. My sons result was 951 and I have been told that high is over 900. My son has had many test over the time, and really I struggle to make heads or tails of it, his b6 is way over the reference range in his blood. Again I believe he cannot use it, or at least active it in to a useable form. I had his blood histamine tested a while ago, and it was extrememly low, so according to the pfieffer treatment plan, he is an overmethylator, but Dr Neubrander says that maybe the over and under methylator situation is too simple, that really that for most kids if there is a methylation issue, then they should try the 5 week experament he talks about. My son has only had three of the biological markers shown in Jill James research tested, and all 3 were more in the "autistic" range than in the range that the "control" group has, so I figured that trying to get these more into the normal could not hurt. My dr here was happy for me to try. I did write to Dr N back in May about Tourettes and mb12 and I got much the same answer as you, that he has not had much expreience with it, and that if you were to try, then start low, maybe 25% of the normal dose, and slowly up it. I tried sublingual as the needle thing was going to be a challenge, and my kid is already soooo good with all this stuff, and i did not want to rock the boat. I figured that if I see any improvment in the 5 weeks that I will know that mb12 helps along with all the other stuff, and then I will cross the needle vs sublingual thing later. Right now, things are going well, and well just see as time goes on. I have posted most of my kids results elsewhere, but just to reafirm, he has mercury toxcicity as per heavy metal challenge test, low histamine, gut dysbiosis, poor stomach acid and hence low amino acids accross the board, fatty acid deficiencies. He used to have adhd, but not anymore, this has defenitiely corrected itself with supplements. The only thing left is his tics, which are definitely mild now, and sometimes not even there, but they still wax and wane a bit. He is a great kid, happy and well balanced. This was not always the case, on medication (orap) he was depressed, 20 kg overweight and miserable. Testing of nutritional imbalances was the best thing we ever did, and supplementing has made all the difference. Things still seesaw for us, sometimes I think we get one thing in balance and it sends another one off, so we still have a ways to go, but....its a work in progress... Good luck with your dr next week.
  10. Kim, I too listened to Dr Neubrander on biochat after you recommended it. I found him very impressive. He is very passionate about what he does. I only listened for the first hour of so as the baby woke up so I missed your question on Tourette's - interesting his comments on beef. That would seem a highly unusual thing to be allergic to. Over the past few weeks I have read a little from Dr Neubranders website, and looking at the research that has been done on methyl b12, especially the paper on autism and methylation by Jill James. I guessed my kid needed this, as he has low methionine, high b12 in blood and 5.5 homocysteine. As an experament we are trying sublingual methyl b12 and we are seeing a further decrease in tics - but we are only 2 weeks into it, so who knows if the improvement will be sustained. I know Dr N only recommends subcutainious injections, but I really just wanted to see if this made a difference before I tried needles, I think my kid would be totally unimpressed if I tried to give him a needle in the butt. I agree that sometimes supps make things worse before they get better. Thanks again for recommending biochat, its great to hear these dan dr's live. Caz
  11. Cheri Do you have a list or a link to somewhere that lists the blood tests that should be done. I know one is called something titers. My youngest (4 years) has been having throat clearing troubles for about a year now, after a bout of strep, and he kept having large lymph glands in the neck, and the regular doctor just dismissed it as being part of his recovery from tonsilitis. Just last week he got sick with what I suspect was fifths disease (slap cheek) and he turned into a monster. Agro, defiant and using repeditive bad language. He is taking ndf, and I am putting grapefruit seed extract drops on his feet, as he wont take any tablets. Your comments about stealth strep touched a nerve. He did not show any signs of ts until he had the strep last July. He was on antibiotics for that and his illness cleared up, just the throat clearing remained. I guess as my older boy has ts, that it must be genetic, so I kind of dismissed pandas at the time. With all I know about ts from my older one, I should have got these blood tests done sooner! Caz
  12. Cheri Do you have a list or a link to somewhere that lists the blood tests that should be done. I know one is called something titers. My youngest (4 years) has been having throat clearing troubles for about a year now, after a bout of strep, and he kept having large lymph glands in the neck, and the regular doctor just dismissed it as being part of his recovery from tonsilitis. Just last week he got sick with what I suspect was fifths disease (slap cheek) and he turned into a monster. Agro, defiant and using repeditive bad language. He is taking ndf, and I am putting grapefruit seed extract drops on his feet, as he wont take any tablets. Your comments about stealth strep touched a nerve. He did not show any signs of ts until he had the strep last July. He was on antibiotics for that and his illness cleared up, just the throat clearing remained. I guess as my older boy has ts, that it must be genetic, so I kind of dismissed pandas at the time. With all I know about ts from my older one, I should have got these blood tests done sooner! Caz
  13. Is your son sick at the moment? I find illness really flared up my sons tics. Whilst there is a correlation with pandas and strep, I find any illness, even just a cold makes a huge difference. Even just a headache makes them worse. I dont know how long you son has been on lexapro, and I done even really know of this med, but for my son, when he first started orap, I thought it was a miracle, but then over time, the tics came back worse than what they were before we started treating with orap. I think the body becomes "used to" these medications and they loose their effectiveness. For us, the dr kept upping the dose to make it effective, and the side effects were terrible, 20kg in 6 months weight gain. We personally have not seen a Dan Dr, as we dont have any here in Perth, West Australia, but we have seen an orthomolecular dr who uses nutrients and does hair analysis, and other testing, and this has made a huge difference, as we have been able to customize the nutrients to our kids own needs, rather than to a generic plan. Good luck with finding a dr to do the testing, I dont think you will regret it.
  14. Thought this was interesting carnitine and cytokines More about inosine and cytokines cytokines and atp cytokines and inosine
  15. It has intreguided me about folic acid increasing inosine. Looking further into this last night, I found that inosine is a byproduct of the "methylation" cycle, something to do with adenosine being turned into inosine via an enzymatic step. If methylatin isn't working well, then some of these byproducts will not adequately be produced by the body. ' If inosine is such a great antiinflammatory why is it not more well researched in either Tourette's, or autism, or even any of the other inflammatory conditions like arthritis etc. I think if increasing folic acid helps, then this is probably a more natural way to get this inosine rather than supplementing it directly.
  16. Anyone heard of or used inosine? The reason for my question is that today I had my kid at the pediatrician today for his 6 month followup on desinsitization needles for dust mites, and the decision was made that even though he is sensitive to these via ige blood and skin prick, the desensitization is not helping his hayfever. The dr said maybe he has vasomotor rhinitis, rather than allergic rhinitis (I didn't know there was a difference...)Anyway, I put vasomotor rhinitis into pubmed and in a few papers it talked about nitric oxide and how it can cause rhinitis. To cut a long story short, I spent a few hours looking into nitric oxide. On braintalk I had heard that some suspected nitric oxide could be part of TS, and so I delved into it a bit. It seems that TNF alpha can stimulate nitric oxide, so then I looked more into TNF which had been implicated in TS in the above paper. I came accross a paper that talks about a product called inosine which inhibits both interleukin 12 and TNF. When I then put inosine and ts into the search engine, there was actually a paper on some research done in China on this, hence my question on if anyone has used it. inosine and tourette's It is natural product, not a pharmaceutical. From what I gather it is not an amino acid, but a byproduct of certain events that happen in the body. It helps the body produce atp (part of the krebs cycle I believe) and it is the atp production that helps in its antiinflammatory properties. Any comments on its use?
  17. We are seeing huge success on reducing tics with three supplements, GSE (grapefruit seed extract), NDF + and spirulina. We have gone from 80% success to now 95%plus improvement. These things are in addition to our usual array of supplement, like cal/mag, omega 3's, b vitamins, extra b6, zinc, digestive enzymes and protein digestive aid. I have hesitated to try GSE as I had been told that it is soooooo disgusting. We can only get it as a liquid here in Australia, due to the therapudic good dept not allowing it in capsule form, but I have brought empty capsules and am putting the drops in there and my son is taking it just fine. This is a very potent antifungal/antimicrobial. It is different from grapeseed extract which is an antioxidant and is recommended by Bonnie for people with TS. Not sure which of the three is making the difference, but the NDF is moving metals I am sure, as I am also using it on my 4 year old, and his demenour has improved out of sight. He is much calmer and happier. We only added the spirulina over the past 5 days or so, so not sure if these improvement would have occured anyway, but the thing that appealed to me about spirulina is that it is natural vitamins not synthetic one, and the aminos are in an easier to digest form apparently. Anyway, wanted to share our success. Hope it continues.
  18. Methylation is one of the detox pathways in the liver, and yes, there is speculation that it is "fixed" from birth, eg, you have a natural disposition to having trouble with enzymatic reactions that cause blocks in these pathways, but certain nutrients do help. They are finding in autism that methyl b12 makes a huge difference. Cant find it now, but there is a great research paper by Jill James about oxidative stress and methylation in Autism. There is also lots of specualtion that mercury and other polutants upset the bodies ability to methylate. Last night I listened to Dr Bocks talk from DAn and he said so many troubles are caused by imbalanced methylation, including an inability to methylatte neurotransmitters. They need to by methylated to be recycled, hence without being able to recycle then, you end up with overloads of certain ones, like dopamine etc. In his talk he kept referring to Jill James and Richard Deth as being the experts on this stuff, so next i plan to listen to them. Caz
  19. HI Everyone The videos of the recent Boston Defeat Autism Now conference are on the web. The address is Bostan DAN videos I haven't looked at any myself yet, (need kids to be in bed so I can "concentrate") but the list of topics looks quite interesting. I am keen to read about latest research on omega 3 fatty acids etc. Methylation really seems to be a big thing in DAN at the moment. Caz
  20. I had to laugh this morning. I don't know whether it is Mothers Day elsewhere, but it is here in Australia, and this morning my kids wanted to give me breakfast in bed. Well, guess which bunny had to bounce out of bed before anyone else to get the morning tablets ready, as my kid has to take his carnitine half hour before food! After I had been up, it seemed pointless to go back to bed, so I milled around in the kitchen whilst Dad and kids prepared the breakfast, had a lovely chat and lots of hugs and kisses, which makes us Mums feel good. It kind of struck me while all this was going on about all us mums (and dads) doing this stuff for our kids to make a difference in their lives, and I felt really proud of what we are achieving! As a result I wanted to pass on my best Mothers Day wishes to all of you! Everyones support and helpfulness makes dealing with the challenges our kids cope with in dealing with tics and TS so much more bearable.
  21. Great web site Kim, that really explained in simple terms about the concerns with omega 6's. I have a bottle of flax oil here that contains 1000mg oil, of which 450mg is omega 3 ala, and 100mg is omega 6 and 100mg is omega 9. I wonder what the rest is?
  22. From what I understand, carnitine helps fatty acids get into the mitochondria part of the cell, which is where the fatty acids are "burned" as fuel for the body. In the braintalk post you posted elsewhere I think they meant long chain fatty acids, not medium chain, as both omega 3 and 6 are long chain - saturated fats are most medium chain I understand. My son also had tests done that showed he was high in saturated fats and well below reference range for omega 3 and 6 dha, epa and gla, so I spent quite some time researching these. I am not an expert by any stretch, but I do now know that it is quite hard for the body to digest/absorb omega 3/6 fatty acids. They are best taken with a digestive enzyme that includes lipase, and make sure your zinc level is up, as this is a necessary part of the converstion process. Use good quality pharmacy grade oil, not just stuff from the health food store, as there is a huge difference in quality. Nordic Naturals are supposed to be good. Here is a web site that tells some things you can do for treating a high triglyceride (thats the bad saturated type fats) level. It also talks about carnitine and how it helps with fats. It was just a web site that I found while looking at tnfalpha and carnitine - cant always trust everything you find on the web, but it is a good place to start. My Webpage There are differing reports on this forum about which oils worked best for their kids, I guess this depends on why they are deficient in the first place. I have used fish oil, but recently changed to flax oil, have not found either to be better than the other, but time will tell. Theoretiacally fish oil is the easiest form to get the necessary bits from, with flax oil it is a harder process for the body to convert the alpha linolenic acid (ala)through to epa and dha. In fish oil, it is already in the necessary form. Another thing about flax oil is that it contains omega 3, 6 and 9. Apparently the body find omega 6's easier to convert so it used its resourses (minerals,vitamins) in this process, and if you are defiecient, it may then not use the omega 3's. This is a simplistic explanation, but there is a large debate about whether most people even need omega 6, as our diet is already high in them, and maybe this is one reason that so many people are omega 3 fatty acid deficient. The baby is pulling at my arm, he obviously wants something, so must go. Caz
  23. The baby was sleeping so I had a few minutes to look into this research. Interesting as noted on braintalk that two of the things of benefit to lowering intereleukin12 and tnfalpha are fish oils and carnitine. Somewhere while I was looking at all this info, I found a reference to how cytokines build up beacuse of too many electrons, that is, oxidative stress. Funny how these same things keep coming up. I guess the question here is are these research findings the chicken or the egg?????? Caz
  24. I am glad that research is being done into the why rather than what drug can we give to fix the problem. Caz
  25. Without wanting to be controversial, and I certainly dont want to get anyone's back up - I know there have been discussions here before with reference to Tourette's and whether or not it is on the autism spectrum of disorders, but I found something said at the recent DAN conference on Autism interesting. I did get this second/third/fourth hand, from someone who was there, and kindly posted their notes on another forum that I read. They were saying that as kids recover from autism using chelation and other methods, it is not uncommon for them to have a "busstop" at a diagnosis of Tourette's, ADHD or OCD. I am still trying to ascertain which speaker it was that said this, and then get a transcript of their presentation, but it leaves you to wonder doesn't it, if as the autism symptoms leave, for a short while they have these syptoms whilst still recovering, and that then these symptoms too disappear as they head towards full recovery. Caz
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