Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Hi Lynne, Thanks so much for your notes on the conference. These are really helpful to those of us like me who couldn't get there. Thanks once again for taking the time to do this . (UK) DAN! Conference Notes > > This was my third DAN! conference, so in my case, it was more that I now > better understand some of the mechanisms rather than discovering new > information. > > However here's some thoughts from my notes: > > --Dr. Levinson mentioned DMSA suppositories. I had never heard of > this type of application. Thought it would be helpful for parents who have > problems with yeast during chelation. He talked about how some supplements > that cannot be tolerated via the gut could be compounded for transdermal > application. > > --Dr. Sidney Baker wants to hear from parents whose child has had urine that > smells like maple syrup and also from those with ASD twins who have NOT had > any biomed intervention. His email is sidneymb@.... > > --Dr. Anju Usman reviewed a case study of a 14.5 year old child who finally > made major progress after 11 years of intervention. A wonderful hit run for > this family. I thought this was so incredibly inspiring for parents who are > discouraged and possibly thinking of quitting. > > --At AutismOne, I went to Tamara Jo Mariea's session on FIR Sauna Therapy. > Been thinking about it ever since. She was invited to have a booth at the > DAN! conference, so I got a chance to speak with her again and I think this > is something that I would like to pursue because I think pesticides and > other chemical exposures may be a problem for my child and my children I > know in our farming community. > > At the parent round table session, I asked Dr. Bock about his > thoughts about pesticides, sauna therapy and the DAN! protocol. He said that > he believes that pesticides/chemicals are probably a problem for lots of our > kids and there isn't much in the DAN! protocol specifically addressing this. > Bock said that for pesticides the glutathione axis and sauna therapy would > be good methods. Says he knows some kids who are doing sauna therapy. This > is definitely something I want to pursue. > > --Hyperbaric oxygen therapy was only briefly mentioned. Dr. McCandless said > that she wants to check into it for Chelsey. At a TACA meeting last month > featuring parents of recovered kids, a parent said that hyperbaric had been > key for her child. They went to Canada to do it because it was less > expensive than in the US. Another therapy I would like to try. > > --Everybody was talking about TD-DMPS, but it wasn't really part of the > conference. Buttar had a session across the street that lots of people > attended. Dr. McCandless seemed to be the only one who spent any time > talking about his protocol; perhaps because she is doing it in her practice > and with her granddaughter. We have the stuff and will be starting on it as > soon as we finish phasing in higher levels of minerals for my son. > > --It was awesome to see the recovered kids that Lou Diamond > interviewed on the stage. They were so darned cute and funny. It was great > when one kid was telling Lou about how kids from the opposing team had to > play on his soccer team because some kids on his team weren't there. He kept > asking Lou, " Do you get it? " This kid was a charmer. > > --As suggested, I immediately signed up for the ANDI Parent > Support System so that I can provide dietary support to parents in my area. > > --Dr. Jeff Bradstreet made us say repeatedly, out loud in unison, so that we > will never, ever forget it: Glutathione is Essential! > > --The clinical information on methylcobalamin b12 keeps getting better. Dr. > Jim Neubrander says that now 9 out of 10 kids are responders. Isn't that > amazing? He's doing an open clinical trial. His parent report form asks > parents to rate the kids on 136 areas of improvement. The top three areas > that 90% of the kids see progress: > 1. Greater executive function > 2. Speech and language > 3. Emotion and socialization > Neubrander said that now he is finding that some kids may need to be on MB12 > for 6-12 weeks before the parents will see improvement. With these kids the > methylation cycle is so deficient that they need a LOT before improvement > will surface. > > Neubrander also said that some kids experience hyperactivity on MB12 and > initially some parents were quitting because of it. He says you really have > to look at the type of hyperactivity to determine how to proceed. For some > kids, it's the Rip Van Winkle effect: it's like they have been asleep for > nearly all of their lives and now that MB12 has brought them to awareness, > they can't get enough of everything in their life. This is what he referred > to as " purposeful hyperactivity. " If the parent says the hyperactivity is > purposeful and lots of other good things are happening, he recommends > staying the course. Another side effect initially is often mouthing objects > (but sorry can't remember what he said to do about this). > > The DAN! Think Tank chose MB12 as the modality they want the MIND Institute > at UC to study. This is very, very exciting because this means that > potentially many more children will experience the benefit of this > intervention. > > --Dr. McCandless reminded us all to hang tough with our kids and not to > spoil them. It was a good reminder that our kids need to do chores around > the house and take on responsibilities within the family. Of course, she > gave lots of good biomed info, but since she's my son's doctor, I didn't > write much down. > > --Of course, the speakers touched on gfcf and scd quite a bit. I heard from > lots of parents who were doing all types of variations on diets. As always, > nothing seems to work for everyone. Only one consensus: Get rid of the > refined sugar!! > > Okay, that's it. I'm not much of a note-taker (plus much info is contained > in the proceedings so that you don't have to write everything down), so this > is all I have from 3+ days of listening to speakers. I'd love to hear from > anyone who has any other information. It's always so interesting to hear > what someone else took from listening to the same speaker. It was a > three-hour drive home for me and my friend (she's new to DAN!)--all the way > home I quizzed her on what she thought she might do now and debated many > points. > > Wish you all could have been there! It was great and really inspiring to > hear directly from so many fabulous doctors and researchers (and of course, > accosting them in the hallways to ask questions about my kid!). HOWEVER, as > always, one of the best parts of the conference is meeting other parents and > asking them what they are doing and how it is helping their child. Nothing > beats parent-to-parent advice. > > It was wonderful meeting so many of you at the conference who I have met > online. I really appreciated those of you who came up to introduce > yourselves. Hope to see you at the next conference! > > Lynne > > > > > Many frequently asked questions and answers can be found at <http://forums.autism-rxguidebook.com/default.aspx> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 In a message dated 10/4/2004 11:18:31 PM Eastern Standard Time, lynsuzy@... writes: --Dr. Jeff Bradstreet made us say repeatedly, out loud in unison, so that we will never, ever forget it: Glutathione is Essential! Lynn. Thanks for your report! What is the best way to give glutathione? a H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Lynne- I really appreciate you taking the time to write up your notes. Thank you SO much. Just have to chime in that I agree with where your head is. While mercury may be the biggest assault on our kids, they're under attack from so many other things and I'm not sure (just a mom's opinion) if chelating the metals is enough to repair all the insults. We've been working with Dr. Ellis on a homeopathic detox for for a few months now. We recently started a remedy for antibiotics and this has been, far and away, the most difficult remedy for him to date. I'm certainly NOT suggesting that chelation is a bad idea but I am saying that I'm not sure it's all they're going need to 'clean up'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 > What is the best way to give glutathione? Well, the experts don't seem to agree on this. A couple doctors were negative about oral glutathione saying that it isn't likely to be effective and too expensive relative to its efficacy. However, oral has been good for my son--definitely saw a difference when it was introduced. Now we do both oral (Klaire) and transdermal glutathione (Coastal Compounding). At the conference I was sitting with a mom who says she could feel the difference in herself when she started taking the oral glutathione. So apparently it is effective for some people. Lynne Quote Link to comment Share on other sites More sharing options...
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