Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 > Hi-- > > My 4.4 year-old son was diagnosed in late January as PDD-NOS. We are > currently GF/CF/SF, and we have seen some improvements in terms of > behavior and ability to grasp concepts. > > We have started seeing a former DAN! doctor (just recently his name > disappeared from the list...I don't know why yet), Call him or ARI and ask. I'd be quite curious to know how they maintain their list. > and he has recommended > several supplements. One of those was Super Nu-Thera, but we saw > tremendous regression (actually, he ended up worse than he had ever been > before), so we cut that and went with a B6 powder that I put in foods. > The doctor recommended Ambrotose, but that made my son pee himself > several times throughout the day (we challenged twice and the reaction > was always the same). So we cut that. Currently he is on Trans Factor > Kids (2x day), flax seed meal (~1 tsp. a day if I can hide it), > acidophilus wafers (2x day), and B6 (200 mg sprinkled in foods). > > At our appointment at the end of last week, the doctor recommended that > we add aloe (liquid that can be put in his juice) and carnosine (I found > a capsule I can separate and put in food)...he had his first dose of the > aloe today, and I'm waiting to see what type of reaction (if any) that > elicits before I try the carnosine. > > Another recommendation was NDF drops (Nanocolloidal Detox Factor). The > only information I can find on this is provided by vested interests who > are selling the product and I'm hoping there is some information here or > somebody could guide me to other information. Well, based on MY read of the information provided by the vested interests, the stuff doesn't work. > We just had my son's hair > taken for a heavy metals test...this is a new area to us, and I'm > honestly not too sure what to expect. Hopefully it was a Doctor's Data or Great Plains hair test, otherwise you'll have to repeat it. See /files/HOW_TO_hair_test for how to interpret it. > Anyway, since the NDF seems to be some type of chelator, nope. > but not one I've > seen mentioned on any of the listserves I frequent, I'm holding off on > that until I have some test results (which I will be sure to share to get > some educated input as I educate myself). > > From what I've told you, does anybody have any recommendations or ideas > for what I could be doing either in terms of supplements vitamin C 3 or 4 times a day, 10,000 IU a day of vitamin A. >or reading that > would help me? I would appreciate input. I have been reading messages > for a few days, and you seem quite knowledgable about areas that are > still very gray to me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 > We just had my son's hair taken for a heavy metals test...this is a new area to us, and I'm honestly not too sure what to expect. <BR> Hopefully it was a Doctor's Data or Great Plains hair test, otherwise <BR> you'll have to repeat it.<BR> Yes, it was sent to Doctor's Data. > Anyway, since the NDF seems to be some type of chelator, <BR> <BR> nope.<BR> Hmmm....that was the reason stated for using the drops. Interesting. That was why I told him I wouldn't give them until I got a lab report that suggested metal toxicity was a problem. Thank you so much for your information and suggestions. And I'm sure I'm not highlighting the previous texts and my responses correctly, so please forgive me if this comes through terribly difficult to read. Practice, practice, practice! Allyson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 > At our appointment at the end of last week, the doctor recommended that > we add aloe (liquid that can be put in his juice) and carnosine (I found > a capsule I can separate and put in food)...he had his first dose of the > aloe today, and I'm waiting to see what type of reaction (if any) that > elicits before I try the carnosine. > > TIA--Allyson I started my son on aloe extract - Salute brand, and was told to get this brand becuase the amount of MPS was high. It was a couple of weeks before I noticed changes. He wasn't on any other supps or diet at that time, just the aloe. His attention was much better, and his eye contact improved greatly. A friend has had her son it for a few years, and still sees some regression if she removes it. Otherwise, he appears mostly recovered. I give mine(7yo, 50lb, PDD/NOS) 2 tsp once a day. I'm also giving him CLO, Pro bio gold, vit A, C, E, zinc, milk thistle, and chelating with ALA (1st round only). Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 > Hopefully it was a Doctor's Data or Great Plains hair test, otherwise <BR> > you'll have to repeat it.<BR> > > Yes, it was sent to Doctor's Data. It also has to be the hair element profile, not the toxic element profile. If you get the toxic profile back, have the doc call the lab IMMEDIATELY and run a hair element profile as well - they usually keep the prepared sample for a while. They will no doubt charge for this unless the doctor's office does a lot of fast talking. > > Anyway, since the NDF seems to be some type of chelator, <BR> > <BR> > nope.<BR> > > Hmmm....that was the reason stated for using the drops. I am aware that many MD's have some interesting views on chemistry. I apologize for all chemists that we didn't crack the whip harder over pre-meds so they knew what they were doing. Andy. . . .. . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 > > Hi-- > > > > My 4.4 year-old son was diagnosed in late January as PDD-NOS. We > are > > currently GF/CF/SF, and we have seen some improvements in terms of > > behavior and ability to grasp concepts. > > > > We have started seeing a former DAN! doctor (just recently his name > > disappeared from the list...I don't know why yet), > > Call him or ARI and ask. I'd be quite curious to know how they > maintain their list. > > > and he has recommended > > several supplements. One of those was Super Nu-Thera, but we saw > > tremendous regression (actually, he ended up worse than he had ever > been > > before), so we cut that and went with a B6 powder that I put in > foods. > > The doctor recommended Ambrotose, but that made my son pee himself > > several times throughout the day (we challenged twice and the > reaction > > was always the same). So we cut that. Currently he is on Trans > Factor > > Kids (2x day), flax seed meal (~1 tsp. a day if I can hide it), > > acidophilus wafers (2x day), and B6 (200 mg sprinkled in foods). > > > > At our appointment at the end of last week, the doctor recommended > that > > we add aloe (liquid that can be put in his juice) and carnosine (I > found > > a capsule I can separate and put in food)...he had his first dose of > the > > aloe today, and I'm waiting to see what type of reaction (if any) > that > > elicits before I try the carnosine. > > > > Another recommendation was NDF drops (Nanocolloidal Detox Factor). > The > > only information I can find on this is provided by vested interests > who > > are selling the product and I'm hoping there is some information > here or > > somebody could guide me to other information. > > Well, based on MY read of the information provided by the vested > interests, the stuff doesn't work. WOULD YOU PLEASE ELABORATE YOUR COMMENT ABOUT NDF? > > > We just had my son's hair > > taken for a heavy metals test...this is a new area to us, and I'm > > honestly not too sure what to expect. > > Hopefully it was a Doctor's Data or Great Plains hair test, otherwise > you'll have to repeat it. > > See > > /files/HOW_TO_hair_test > > for how to interpret it. > > > Anyway, since the NDF seems to be some type of chelator, > > nope. > > > but not one I've > > seen mentioned on any of the listserves I frequent, I'm holding off > on > > that until I have some test results (which I will be sure to share > to get > > some educated input as I educate myself). > > > > From what I've told you, does anybody have any recommendations or > ideas > > for what I could be doing either in terms of supplements > > vitamin C 3 or 4 times a day, 10,000 IU a day of vitamin A. > > >or reading that > > would help me? I would appreciate input. I have been reading > messages > > for a few days, and you seem quite knowledgable about areas that are > > still very gray to me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Good morning, group. I have a question? How can I get my SSd approved when I can no longer see the doctors? I do not qualify for medical assistance, even with SSD pending. (I have been denied 4 times over 4 years) This whole damm disease has cost me the house we used to own, a job that I loved and was well paid at, and most of my friends. You would think that at some point the judges, etc. would all agree that there is no way I could be faking this for so long. Why would I want to? I loved my job, I loved being active with my kids and grandkids. They keep telling me " You're only 38. You're too young to be disabled. You can still work a 12 hour day without a problem " . Excuse me, but wouldn't I be the one to know if it is a problem or not? (Sorry-I said that at the hearing-it didnt help at all) I have had to stop going to the doctor because the bills have gotten outragous. My physical therapy was 300 bux per session, 5 sessions per week. Where was I supposed to come up with that kind of cash? My medical assisstance was revoked when I got denied, so they stopped paying for anything. Boy was I shocked by those bills. The 15 minute appt with the rheumatologist? 465 bux. Twice a month with her, too. My own doctor was costing me over 100 a week, and the psychologist was getting out of hand, too. That was before I bought a single prescription! So anyway, I stopped going to any of them. Now I have to go back, whether I can afford it or not. I still have no insurance, and can't get any. I don't qualify for any of the low-income programs-my husbands annual income is over by about 15.00. We can barely keep food on the table right now, and I am about to add to the bills again by going to doctors. What can I do to get approved? I can't keep adding to the debt load just to generate more paperwork that they stupid hearing judge never even looks at. I am running out of options. I have even tried to go back to work--what a nightmare that turned out to be. I didn't last 2 weeks. I just can't keep up with the rest of the world anymore. If I don't do something soon, I think my head will explode from worrying. And as if all this isn't bad enough, I think my teenage son has fibro. He will be seeing a dr for evaluation soon, but will not take any meds. PA law says he doesnt have too, so he won't. He's been medication dependant his whole life, so I kind of understand where he is coming from.) If anyone has any suggestions as to what else I can do to get my SSD approved, please email me. I am literally at the end of my rope. Lona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 " Will he ever get off the oils " Good question Pam. I am not sure what the longest time a child has been using these supplements. Everyone talks about regression when they stop. Can any long time users comment? I read somewhere ages ago that the types of fish oils change as a child develops. It said something like, but don't quote me, More EFA up to 7 and more DHA after. But these were for 'normal' kids. Given ours are delayed with language development it would make sense that they need the EFA's more, even after age 7. It also seems that everyone, with a western diet maybe, should be using omega oils as we seemed to have an imbalance or deficit. So maybe by the time our children are grown-up it will be something that we all take anyway, bit like extra vits in our cereals. BTW my husband was saying he read somewhere that Omega oils in bread was such a waste of time as 50% was lost and you needed so much of it to make a difference. So, yes, perhaps the only way will be capsules of the oil. I'd like to hear from those that have been using it for many years and there comments. Regards UK Mummy to 8 and Rory 6, with verbal dyspraxia, both deaf with CI. [ ] Newbie with a question Quote Link to comment Share on other sites More sharing options...
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