Caz

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

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

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?

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

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

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

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

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

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.

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

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

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

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.

Thought this was interesting carnitine and cytokines More about inosine and cytokines cytokines and atp cytokines and inosine

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.