Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 , I also was lucky to have a successful treatment. I took off a few weeks when I started treatment, but then worked throughout. I tested undetectable at 6 mos into treatment, at the end of treatment, 6 mos after and then again 12 mos after the end of treatment. Now I just go back to regular physicals and watch my enzyme levels. I don't expect to be bothered by that nasty old dragon again! -dz- Davies <lisamarie64@...> wrote: Leann, Thanks so much for the encouragement....... It is always so nice to here a succes story such as yours... I am ready for treatment, as ready as I can be, and God willing everything will go okay.... And Congrats to you on your tx, that is wonderful....!!! I hope you are putting a little wieght back on as that is an awful lot to loose... Keep up the good work Girl Hugs & Prayers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 I don't know about Similase Jr, but if I upped my son's enzyme dose dramatically he would also have an immediate meltdown. I think that's a long time to use GSE. You might want to rotate yeast killers. See www.danasview.net for yeast info and treatment ideas. > Hi - I've been lurking for several weeks and have found all > information posted very helpful. We've been giving my 4 1/2 yr old > son the enzyme Similase Jr for several weeks. One cap with breakfast > and one with supper. Last Tuesday we bumped it up to 2 caps with > breakfast and 2 with supper. He had an instant " meltdown " which > lasted until this a.m. (Saturday). We've been giving 3 drops/day of > GSE since January, probiotics and vit c. Now I'm wondering about > yeast. Am I right to think that much GSE may have caused a yeast > problem? Will I only know if he has a yeast problem if we have him > tested? > > Thanks for everything, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi and welcome, >>>We've been giving my 4 1/2 yr old son the enzyme Similase Jr for several weeks. Is there any reason he hasn't had enzymes with lunch? School? Why did you start with the GSE to begin with? Most people give it to treat yeast, so it isn't as likely it caused a yeast problem. Did you increase the GSE when you increased the enzymes? What I am wondering is that giving one capsule of Similase twice a day may have been helping a little bit, but it wasn't enough to be an effective 'therapeutic' dose. Often several capsules of another brand are needed to for the same level of effectiveness of a Houston or other 'good' brand which is more targeted to specific issues. So when you upped to the 4 capsules a day, you were hitting some more significant die-off or cleaning out which can last several days. I wouldn't assume yeast just yet. Keep at this dose for a few days and then try adding the Similase at lunch times too...and one capsule at any snacks. This will help with digestion and gut healing each time he eats. IF he has yeast, it will help with yeast too so you aren't wasting any time on that front either. Please post as you go along. Whether it is a yeast problem might become more clear in the next few weeks depending on his response. There are several other inexpensive methods to try after the enzymes. - you might try increasing the GSE for yeast. - epsom salts with help with die-off/yeast www.enzymestuff.com/epsomsalts.htm Testing for yeast will not definitely tell if you have a yeast problem or not. One last question, if he on any type of special diet or had any ear infections? Sorry to pepper you with so many questions, but this answers can give clues to what might be going on. Just the fact he reacted to the increase in Similase enzymes is a good indication you are on the right track right not. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2004 Report Share Posted June 7, 2004 Hi. Thanks for all the help. I'm starting to get a headache from deciding what to do. > Is there any reason he hasn't had enzymes with lunch? School? We only started the enzymes to help him poop. He only poops about 1 or 2 times/week. His day care is very bad about giving meds, so I just left out lunch. > Why did you start with the GSE to begin with? Most people give it to treat yeast, so it isn't as likely it caused a yeast problem. Did you increase the GSE when you increased the enzymes? We started the GSE to help fight colds and flu bugs which he seemed to have a lot of this winter. He gets a couple drops in his juice in the morning. It's also in the handsoap we use. We actually decreased the GSE when we increased the enzymes. Should we add the GSE back in at the old dosage? Then we could wait until next week and add 1 cap (or less) of the Similase at lunch. I'm reading " Enzymes for Austism and Other Neuro Conds " and could try the chocolate ball recipe. I think even Riley would remember to take that before lunch! We've been doing Epsom salt baths about twice/week. Just a little each time. > One last question, if he on any type of special diet or had any ear infections? He's been off the GFCF for about 1 1/2 years although we very much limit his sugar and dairy and absolutely no fast food. After we increased the enzymes, he complained of an earache which we treated with olive oil and garlic. Otherwise, he never gets earaches. Thank you again for all the help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 >>We've been giving 3 drops/day of > GSE since January, probiotics and vit c. Now I'm wondering about > yeast. Am I right to think that much GSE may have caused a yeast > problem? Actually, if the yeast is now gone, it may have caused a bacteria problem. More yeast info here http://www.danasview.net/yeast.htm What do his bms look like? Try dropping the GSE, see if that helps. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Hi Dana- Thanks for the info. We will drop the GSE for a while to see if that helps. His bms are kind of carmel colored, big pasty poop ball (still uses a diaper, major pooping issues) and somewhat stinky. He only poops once or twice a week. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Dana-I forgot to mention in my last post that Riley has had a rashy butt for a while. Looks like little pimples. Just a sweaty kid, or something being released...? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 > Dana-I forgot to mention in my last post that Riley has had a rashy > butt for a while. Looks like little pimples. Just a sweaty kid, or > something being released...? Might be yeast. Might be virus. Might be a food he is eating. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 Welcome , Sorry about your dx, but glad you found the group. There are great people, and wonderful information. I'm glad that you have a good rheumy, that is so important. There are so many different meds to choose from. I'm on Humira, methotrexate,lodine,folic, and take loratab for the pain. Are you going to taper off the Prednisone? Are you also taking the folic acid? That is very important, it helps the side effects from the methotrexate. Glad your here, Tawny > > > Hi Everyone. > > I was recently diagnosed with RA. It came on suddenly, and before I > knew it, I couldn't barely walk or physically take care of myself or > my children. I have a great Rheumatologist, and am on my second > combination of meds (first combo didn't work!). What I am trying to > figure out here is what everyone takes? I know there are MANY > different meds out there, and not the same combo works for everyone. > I am just shocked at how many different ones I need to feel > somewhat " normal " and to function day to day. > > I am on the following: > > Methotrexate - 20mg - once a week > Prednisone - 20mg daily > Hydroxychloroquine - 400mg daily > > In addition, I have had Cortisone shots, and take pain pills as > needed. > > Is there anyone else out there on a similar combo? I am concerned > about stomach/gastro-intestinal upset. > > This is a wonderful resource, and I am thankful to have found it! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 Hi Tawny. Yes, I am also on the folic acid as well. As for the Prednisone, I was on a tapered dose, and I became increasingly ill each time my dose was lowered, so I am on a steady amount right now. I am limited as to what I can have for pain because I've had a Gastric Bypass, so I am stuck with the Tylenol 3's with Codeine. They don't take away the pain, but just take the edge off. Thank you for the welcome, I'm glad to have found the group. -- In , " tdianaok " <tdianaok@y...> wrote: > > Welcome , > Sorry about your dx, but glad you found the group. There are great > people, and wonderful information. I'm glad that you have a good > rheumy, that is so important. There are so many different meds to > choose from. I'm on Humira, methotrexate,lodine,folic, and take > loratab for the pain. > Are you going to taper off the Prednisone? Are you also taking the > folic acid? That is very important, it helps the side effects from > the methotrexate. > Glad your here, > Tawny > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 hi karen..... my name is rae and i was diagnosed with RA about 1 year ago... i was put on 40 mgs of prednisone with methotrexate and i could not tolerate the MTX so i am on enbrel and plaquinel and trying very hard to get off the prednisone... i am dowm to 2 1/2 mgs every other day.... and i am doing it... i feel ok and i have LOST 9 pounds... i do not fel starved all the time.... and ihave chosen to eat HEALTHY only.. so i am really proud, i gained 30 pounds on the prednisone... so i have many more pounds to lose... rae [ ] Newbie With Questions Hi Everyone. I was recently diagnosed with RA. It came on suddenly, and before I knew it, I couldn't barely walk or physically take care of myself or my children. I have a great Rheumatologist, and am on my second combination of meds (first combo didn't work!). What I am trying to figure out here is what everyone takes? I know there are MANY different meds out there, and not the same combo works for everyone. I am just shocked at how many different ones I need to feel somewhat " normal " and to function day to day. I am on the following: Methotrexate - 20mg - once a week Prednisone - 20mg daily Hydroxychloroquine - 400mg daily In addition, I have had Cortisone shots, and take pain pills as needed. Is there anyone else out there on a similar combo? I am concerned about stomach/gastro-intestinal upset. This is a wonderful resource, and I am thankful to have found it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2005 Report Share Posted February 12, 2005 Hi , Yes, you have to be careful coming off the Prednisone. The Loratab just takes the edge off my pain also. I just don't think I'm ready yet to try anything stronger. You take care of yourself, Tawny > > > > Welcome , > > Sorry about your dx, but glad you found the group. There are great > > people, and wonderful information. I'm glad that you have a good > > rheumy, that is so important. There are so many different meds to > > choose from. I'm on Humira, methotrexate,lodine,folic, and take > > loratab for the pain. > > Are you going to taper off the Prednisone? Are you also taking the > > folic acid? That is very important, it helps the side effects from > > the methotrexate. > > Glad your here, > > Tawny > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Read the last 100 or so posts. They will answer most of your questions. Then search this board for more specific info. Then if you have more questions, ask. Someone will be able to help. Welcome to the group. Been there done that. > Hi everyone: Tell me if I am in the right church,wrong pew. Went to > the Dr. complaining of almost complete loss of sex drive, flashes, > some loss of body hair and he-hooters bigger than I think I should > have. He did blood work, other than cholesterol up (shoot me I'm > Italian) he says my testosterone level is not too low, not the highest > it could be, but he doesn't think that I should worry about taking > testosterone yet. Says it is my age. While I am 51, I am not quite > ready to look like my nana when I get naked! Just moved to this area > and only been with this Dr. a short while. Before I shop for a new Dr. > would appreciate some advice on testosterone, estrogen so I can hold > an intelligent conversation with this or a new Dr about what's going > on. PS, negative for any STD's, cancer, and PSA is within normal > range. No infections that they can find. What are " normal " levels for > the hormone tests he is doing. Thanks, Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Hello Mike: You are in the right church and you even made it to the right pew BOTH! REGARDING TESTOSTERONE LEVELS: Here is the chart we always refer to: http://www.natural-hrt.com/andropause04.html But, optimally, if you had a bloodwork test from your last physical (back when you were feeling good) showing your " Total Testosterone, " " Free Testosterone " and " Percentage of Free Testosterone " as well as your " E2 levels " and your " Prolactin levels " - - this would be the better way to get a good idea as to what " NORMAL " is for you. Reason being, everyone is different and, normal for you is not the same as normal for me. REMEMBER: When doctors look at your lab results and the numbers for your testosterone levels show you to be in a " normal " range -- IGNORE, IGNORE, IGNORE!!! The normal range used by labs all over the world is SO averaged out and dumbed down to the lowest common denominator, they are useless. Men are being told day in and day out that the amount of testosterone in their bodies is in the " normal " range and these poor fools are believing it. They feel horrible, have enlarged breasts, no sex-drive, and have trouble with erections. OBVIOUSLY, their testosterone level is NOT " normal " for them or they wouldn't be feeling like crap and have no sex-drive, etc. If you want to hold an intelligent conversation with your doctor about Estrogen in men, buy two copies of Dr. Eugene Shippen's book called " The Testosterone Syndrome. " Keep one copy of the book for yourself and, give one copy of it to your doctor. Chapter 5 explains the dangers of estrogen in men clearly and intelligently. Hope this helps! Best Regards, Gene > Hi everyone: Tell me if I am in the right church,wrong pew. Went to > the Dr. complaining of almost complete loss of sex drive, flashes, > some loss of body hair and he-hooters bigger than I think I should > have. He did blood work, other than cholesterol up (shoot me I'm > Italian) he says my testosterone level is not too low, not the highest > it could be, but he doesn't think that I should worry about taking > testosterone yet. Says it is my age. While I am 51, I am not quite > ready to look like my nana when I get naked! Just moved to this area > and only been with this Dr. a short while. Before I shop for a new Dr. > would appreciate some advice on testosterone, estrogen so I can hold > an intelligent conversation with this or a new Dr about what's going > on. PS, negative for any STD's, cancer, and PSA is within normal > range. No infections that they can find. What are " normal " levels for > the hormone tests he is doing. Thanks, Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 On Sat, 06 Aug 2005 04:06:03 -0000, you wrote: >Hi everyone: Tell me if I am in the right church,wrong pew. Went to >the Dr. complaining of almost complete loss of sex drive, flashes, >some loss of body hair and he-hooters bigger than I think I should >have. He did blood work, other than cholesterol up (shoot me I'm >Italian) he says my testosterone level is not too low, not the highest >it could be, but he doesn't think that I should worry about taking >testosterone yet. Without the numbers we can't tell you anything. what were the test results? >Says it is my age. While I am 51, I am not quite >ready to look like my nana when I get naked! Just moved to this area >and only been with this Dr. a short while. Before I shop for a new Dr. >would appreciate some advice on testosterone, estrogen so I can hold >an intelligent conversation with this or a new Dr about what's going >on. PS, negative for any STD's, cancer, and PSA is within normal >range. No infections that they can find. What are " normal " levels for >the hormone tests he is doing. Thanks, Mike - - - - Just another albino black sheep Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 Hello Debra65, I haven't had surgery yet. I plan to avoid it as long as possible. I heard, and sveral pain drs confirmed it- surgery doesn't get rid of all the pain. You will very likely still have pain, probably at least as severe as you have now, after surgery. You can expect to releive the radiating pain, and maybe all the numbness with surgery. I go to PT twice a week, and do all my PT stuff every day. It often helps. You may want to check out: http//www.newyorker.com/printables/fact/020408fa_FACT It talks about surgery and is very informative. You may also want to get a referral to a pain clinic. If you can, go to the Mayo clinic, or another nationally 'famed' clinic. I go to the pain at at Jewish Hospital (where hristopher Reev, superman, went). This clinic made my previous clinic experience seem like a drunken rodeo. Yeah, there IS a lot of difference in clinics. I hope some of this helps. Good luck with whatever you decide! Gos bless you > Hi to all, > Can any of you out there tell me how long it took to heal? What about > PT? I am really scared that I won't be able to turn my head at all > after the surgery! > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 I also had a bone spur, needed a diskectomy, and had a fusion. It took two weeks for the major pain to clear, and two months for me to feel so much better, I was sorry I hadn't gone in for surgery before. I do not seem to have reduced mobility, but I only had one fusion. Maybe with two you will get some limit to your mobility, but if you've been in pain a long time, you will unlikely have less mobility than you have now. One thing...is your surgeon a bone or nerve doc? For spine, better to go with nerve expert. (My opinion, YMMV.) Best of luck on the surgery November 8th. Shulamit --- debrar65 <debrar65@...> wrote: > Hi to all, > I have some questions regarding Cervical fusions and your varous > outcomes... > I have been bouncing between Drs since February with tingling and > numbness in my hands. After xrays and MRI they said I have > congenital > fusoins at C5-6 and C3-4. I also have severe impingment at 4-5 > which > the Dr called a spinal cord injury and a large bone spur and some > stenosis at C2-3. Finally found a DR I felt comfortable with and am > > scheduled for diskectomy and fusion at these 2 disks on November > 8th. > Can any of you out there tell me how long it took to heal? What > about > PT? I am really scared that I won't be able to turn my head at all > after the surgery! > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 Shulamit, Thank you for responding to me. I am planning on being out of work for at least 8 weeks so hopefully I will be feeling better by then. . As I said in my original post I have bounced around various docs... ortho, nuero, general surgery, etc.. The surgeon I decided on is an ortho guy but he has asked a nuero to assist. The way I see it that is the best of both worlds. Thank you for you rgood wishes, Debra Shulamit <shulamitw@...> wrote: I also had a bone spur, needed a diskectomy, and had a fusion. It took two weeks for the major pain to clear, and two months for me to feel so much better, I was sorry I hadn't gone in for surgery before. I do not seem to have reduced mobility, but I only had one fusion. Maybe with two you will get some limit to your mobility, but if you've been in pain a long time, you will unlikely have less mobility than you have now. One thing...is your surgeon a bone or nerve doc? For spine, better to go with nerve expert. (My opinion, YMMV.) Best of luck on the surgery November 8th. Shulamit --- debrar65 <debrar65@...> wrote: > Hi to all, > I have some questions regarding Cervical fusions and your varous > outcomes... > I have been bouncing between Drs since February with tingling and > numbness in my hands. After xrays and MRI they said I have > congenital > fusoins at C5-6 and C3-4. I also have severe impingment at 4-5 > which > the Dr called a spinal cord injury and a large bone spur and some > stenosis at C2-3. Finally found a DR I felt comfortable with and am > > scheduled for diskectomy and fusion at these 2 disks on November > 8th. > Can any of you out there tell me how long it took to heal? What > about > PT? I am really scared that I won't be able to turn my head at all > after the surgery! > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 In a message dated 02/12/2005 07:02:52 GMT Standard Time, prabito@... writes: We've been seeing a DAN doctor and did the challenge test for chelation with DMPS. It showed a high amount of mercury, yet it wasn't in the red zone, so I am not sure whether to do chelation. I would appreciate any feedback. >>>rarely in the red zone - IMHO - CHELATE for sure Lots of info here _Mercury Detox: Information, Tools, and Resources_ (http://home.earthlink.net/~moriam/) Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Did you do a DDI hair test and apply counting rules? That's more useful. S S <tt> <BR> In a message dated 02/12/2005 07:02:52 GMT Standard Time, <BR> prabito@... writes:<BR> <BR> We've been seeing a DAN doctor and did the <BR> challenge test for chelation with DMPS. It showed a high amount of <BR> mercury, yet it wasn't in the red zone, so I am not sure whether to do <BR> chelation. I would appreciate any feedback.<BR> <BR> <BR> <BR> >>>rarely in the red zone - IMHO - CHELATE for sure <BR> <BR> Lots of info here<BR> <BR> _Mercury Detox: Information, Tools, and Resources_ <BR> (<a href= " http://home.earthlink.net/~moriam/) " >http://home.earthlink.net/~moriam/)</\ a> <BR> <BR> Mandi in UK<BR> <BR> <BR> <BR> <BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Hi Patty, I am chelating my son who has a diagnosis of Apraxia and would have a PDD diagnosis if I sought one. My son is 3.9. From what you have said, my son sounds more severe than yours. At 2.5 my son couldn't say " fan " because he couldn't figure out how to motor plan the " f " sound followed by the " an " sound. I have only chelated him for 8 rounds of low dose DMSA and ALA, but between that and supplementing him, my son is now speaking in sentences. There is an inorganic element to his speech that we are overcoming, but that is no surprise. He can pronounce anything he is asked to pronounce, so it seems to me that we have seen the apraxia start to fall away. Interestingly, the more the apraxia falls away, the more PDDish he seems. I'll take it! I would definitely think you should consider chelating your son.... BUT, and this is a big BUT! You should do your research and be careful. Most or many of us are on this board because we listened to the doctors without doing our research first. Don't make that mistake again just because the doctor you are dealing with is a DAN doctor. I use one too, but that is no substitute for research. I see DAN docs recommend dangerous stuff all the time. You need to know when to say yes and when to say no, and to drive your son's therapies yourself. In fact, many on this board chelate their kids without docs. The reason I bring this up so fervently in this post is because I see you did a DMSA challenge test on your son. Many people on this board think not only that this is not helpful for diagnosic purposes, but is downright dangerous in that you can cause metals in the system to be unnecessarily redistributed, including to the BRAIN. Not something we need to do. On this board it is generally recommended that you opt in for 5 rounds of low dose DMSA (with or without ALA) on a 3 day on and at least an equal amount of days off cycle. If you see progress, then chelation is a good idea. If you don't it might not be. Have you had a Doctor's Data hair test (for essential elements) done? This is an incredibly helpful test. And I would also have a comprehensive blood test done (CBC, Comp. Metabolic Panel, Free T3, Free t4, ferritin). I am sure there is other stuff that I can't think of, but hopefully someone else will chime in on this. The blood work should be able to be done at your local lab. And finally, where apraxia is at issue, I would use DMSA and not DMPS. Some have found that many apraxic kids have high lead, and this is true for my son. DMSA is a very effective lead chelator (moreso than DMPS, I think). I am sure this is too much information, but hopefully it helps. Further recommendations: buy Andy Cutler's Hair Test Interpretations book, read the files section, post any questions, and DON'T RELY ON ANYONE OTHER THAN YOURSELF to make decisions for your son. Sorry if this is rambling. I just feel strongly about this stuff. Best, Anne > > Has anyone who has a child with speech apraxia done chelation? If so, > did it help.....is your child speaking normally now? My 2 1/2 yr old > was diagnosed with PDD and speech apraxia. He is at the very mild end > of the spectrum, but he can't put more than 2 words together, and just > says single words. We've been seeing a DAN doctor and did the > challenge test for chelation with DMPS. It showed a high amount of > mercury, yet it wasn't in the red zone, so I am not sure whether to do > chelation. I would appreciate any feedback. > > Thanks, > Patty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Hi Anne, My son can't say " fan " either. He cannot pronounce the F sound. Why is the challenge test not helpful? Is it not accurate enough? We already did the hair test, and a ton of other tests. The urine toxic elements test showed no lead. What do you mean most of you are on here because you listened to the doctor w/o doing research first. Isn't that what the DAN doctor is for? I can read up on this and do research, but I'm not a doctor and don't feel qualified on what method to use. Why do you all prefer DMSA to DMPS? Is it because it's FDA approved and DMPS isn't? The more I think about this, the more I am convinced that he has mercury in his brain... just listening to him trying to talk. I think the chelation is definitely worth a try. Patty anneecbrynn <abrynn@...> wrote: Hi Patty, I am chelating my son who has a diagnosis of Apraxia and would have a PDD diagnosis if I sought one. My son is 3.9. From what you have said, my son sounds more severe than yours. At 2.5 my son couldn't say " fan " because he couldn't figure out how to motor plan the " f " sound followed by the " an " sound. I have only chelated him for 8 rounds of low dose DMSA and ALA, but between that and supplementing him, my son is now speaking in sentences. There is an inorganic element to his speech that we are overcoming, but that is no surprise. He can pronounce anything he is asked to pronounce, so it seems to me that we have seen the apraxia start to fall away. Interestingly, the more the apraxia falls away, the more PDDish he seems. I'll take it! I would definitely think you should consider chelating your son.... BUT, and this is a big BUT! You should do your research and be careful. Most or many of us are on this board because we listened to the doctors without doing our research first. Don't make that mistake again just because the doctor you are dealing with is a DAN doctor. I use one too, but that is no substitute for research. I see DAN docs recommend dangerous stuff all the time. You need to know when to say yes and when to say no, and to drive your son's therapies yourself. In fact, many on this board chelate their kids without docs. The reason I bring this up so fervently in this post is because I see you did a DMSA challenge test on your son. Many people on this board think not only that this is not helpful for diagnosic purposes, but is downright dangerous in that you can cause metals in the system to be unnecessarily redistributed, including to the BRAIN. Not something we need to do. On this board it is generally recommended that you opt in for 5 rounds of low dose DMSA (with or without ALA) on a 3 day on and at least an equal amount of days off cycle. If you see progress, then chelation is a good idea. If you don't it might not be. Have you had a Doctor's Data hair test (for essential elements) done? This is an incredibly helpful test. And I would also have a comprehensive blood test done (CBC, Comp. Metabolic Panel, Free T3, Free t4, ferritin). I am sure there is other stuff that I can't think of, but hopefully someone else will chime in on this. The blood work should be able to be done at your local lab. And finally, where apraxia is at issue, I would use DMSA and not DMPS. Some have found that many apraxic kids have high lead, and this is true for my son. DMSA is a very effective lead chelator (moreso than DMPS, I think). I am sure this is too much information, but hopefully it helps. Further recommendations: buy Andy Cutler's Hair Test Interpretations book, read the files section, post any questions, and DON'T RELY ON ANYONE OTHER THAN YOURSELF to make decisions for your son. Sorry if this is rambling. I just feel strongly about this stuff. Best, Anne > > Has anyone who has a child with speech apraxia done chelation? If so, > did it help.....is your child speaking normally now? My 2 1/2 yr old > was diagnosed with PDD and speech apraxia. He is at the very mild end > of the spectrum, but he can't put more than 2 words together, and just > says single words. We've been seeing a DAN doctor and did the > challenge test for chelation with DMPS. It showed a high amount of > mercury, yet it wasn't in the red zone, so I am not sure whether to do > chelation. I would appreciate any feedback. > > Thanks, > Patty > ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Yes, we are doing chelation, and our first diagnosis was moderate verbal apraxia, later mild PDD with sensory integration disorder and many other made up terms for mercury poisoning. We have completed 18 rounds to date, and the changes in my daughter have been nothing short of remarkable. If your child has mercury, which he does, you should chelate (my opinion of course). I am biased towards Andy Cutler's protocol, since that is what we use. Feel free to email me off line if you want more info. -------------- Original message -------------- > Has anyone who has a child with speech apraxia done chelation? If so, > did it help.....is your child speaking normally now? My 2 1/2 yr old > was diagnosed with PDD and speech apraxia. He is at the very mild end > of the spectrum, but he can't put more than 2 words together, and just > says single words. We've been seeing a DAN doctor and did the > challenge test for chelation with DMPS. It showed a high amount of > mercury, yet it wasn't in the red zone, so I am not sure whether to do > chelation. I would appreciate any feedback. > > Thanks, > Patty > > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Hi Patty, I didn't mean to scare you with my earlier post. Sometimes I am not particularly diplomatic.... Let me first say that we are seeing tremendous progress here, and I don't doubt that you will too once you are up and running. My responses are in the text of your post below. > > Hi Anne, > My son can't say " fan " either. He cannot pronounce the F sound. My son could pronounce many sounds in isolation. This is probably because he was an alphabet nut and knew the alphabet by the time he was 20 months old. It gave his therapists concern in some ways, but good opportunities to practice. It was what motivated him, and that is half the key on the therapy front. > Why is the challenge test not helpful? Is it not accurate enough? The way I see it, and others can speak this more proficiently than I, challenge tests (generally) essentially throw huge amounts of chelator into the system, which grabs whatever metals it has an affinity for and finds, and gets some of that out of the system. The rest is floating around and then resettles. Who knows where. One of the goals of chelation should be to minimize the amount of " redistribution " (and thus regression). What most people on this list do is to give the chelator in low, frequent doses for a number of days (including at night) and then stop for a while, then do it again. How long between dosing times is a function of the half-life of the chelator. For DMSA it is 4 hours, for DMPS it is 8 hours, and for ALA it is 3 hours. This minimized the number of times the metals " resettle " or " redistribute " . I am a lawyer, not a scientist, but this makes sense to me. > We already did the hair test, and a ton of other tests. Why don't you post the test results? There is a template for the hair test somewhere in the files. If you can't find it, someone will be able to help. Also, post blood and other tests. People here will help you make sense of the results. Also, tell us a bit more about your son's history. For example, is he hypotonic? constipated? diahrrea? etc. > The urine toxic elements test showed no lead. I don't know anything about this test, so I can't help you. > What do you mean most of you are on here because you listened to the doctor w/o doing research first. Many of our kids were probably affected by childhood immunizations, which we trusted were safe because we were told so by our children's doctors. > Isn't that what the DAN doctor is for? Supposedly, but it doesn't seem as though they all give good advice. And certainly they will never know your child as well as you do or care about your child as much as you do. > I can read up on this and do research, but I'm not a doctor and don't feel qualified on what method to use. on this list spent a number of months following listserves to determine which protocol they would use for her granddaughter. She found less regression here than with any other protocol. Maybe she can speak to this issue a little bit. > Why do you all prefer DMSA to DMPS? Is it because it's FDA approved and DMPS isn't? It is my understanding that DMPS is not as good at clearing lead as DMSA is, DMSa is good at clearing mercury, and I think my child is both lead and mercury toxic. Of course, neither will get anything out of the brain. You need ALA for that. > The more I think about this, the more I am convinced that he has mercury in his brain... just listening to him trying to talk. Again, if you want to clear stuff from the brain, you will need ALA. > I think the chelation is definitely worth a try. I do too. Going down this path is one of the most difficult things I have done, and the most rewarding. I am going for nothing short of full recovery, and I think we will get there (though we have lots more work to do......) Best, and please do post your son's test results. There are a lot of wonderful people on this board who will be able to help you get started. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Challenge tests can be dangerous and really hard on the kids because docs are using such high doses of the chelators. Also, a lot of kids don't pull mercury until months down the road, so this is not a good TEST of whether or not the child got mercury. Barb Re: [ ] Re: Newbie with Questions > Hi Anne, > My son can't say " fan " either. He cannot pronounce the F sound. > Why is the challenge test not helpful? Is it not accurate enough? We > already did the hair test, and a ton of other tests. The urine toxic > elements test showed no lead. What do you mean most of you are on here > because you listened to the doctor w/o doing research first. Isn't that > what the DAN doctor is for? I can read up on this and do research, but > I'm not a doctor and don't feel qualified on what method to use. Why do > you all prefer DMSA to DMPS? Is it because it's FDA approved and DMPS > isn't? The more I think about this, the more I am convinced that he has > mercury in his brain... just listening to him trying to talk. I think the > chelation is definitely worth a try. > > Patty > > anneecbrynn <abrynn@...> wrote: > Hi Patty, > > I am chelating my son who has a diagnosis of Apraxia and would have a > PDD diagnosis if I sought one. My son is 3.9. From what you have > said, my son sounds more severe than yours. At 2.5 my son couldn't > say " fan " because he couldn't figure out how to motor plan the " f " > sound followed by the " an " sound. I have only chelated him for 8 > rounds of low dose DMSA and ALA, but between that and supplementing > him, my son is now speaking in sentences. There is an inorganic > element to his speech that we are overcoming, but that is no surprise. > He can pronounce anything he is asked to pronounce, so it seems to me > that we have seen the apraxia start to fall away. Interestingly, the > more the apraxia falls away, the more PDDish he seems. I'll take it! > I would definitely think you should consider chelating your son.... > > BUT, and this is a big BUT! You should do your research and be > careful. Most or many of us are on this board because we listened to > the doctors without doing our research first. Don't make that mistake > again just because the doctor you are dealing with is a DAN doctor. I > use one too, but that is no substitute for research. I see DAN docs > recommend dangerous stuff all the time. You need to know when to say > yes and when to say no, and to drive your son's therapies yourself. In > fact, many on this board chelate their kids without docs. > > The reason I bring this up so fervently in this post is because I see > you did a DMSA challenge test on your son. Many people on this board > think not only that this is not helpful for diagnosic purposes, but is > downright dangerous in that you can cause metals in the system to be > unnecessarily redistributed, including to the BRAIN. Not something we > need to do. On this board it is generally recommended that you opt in > for 5 rounds of low dose DMSA (with or without ALA) on a 3 day on and > at least an equal amount of days off cycle. If you see progress, then > chelation is a good idea. If you don't it might not be. > > Have you had a Doctor's Data hair test (for essential elements) done? > This is an incredibly helpful test. And I would also have a > comprehensive blood test done (CBC, Comp. Metabolic Panel, Free T3, > Free t4, ferritin). I am sure there is other stuff that I can't think > of, but hopefully someone else will chime in on this. The blood work > should be able to be done at your local lab. > > And finally, where apraxia is at issue, I would use DMSA and not DMPS. > Some have found that many apraxic kids have high lead, and this is true > for my son. DMSA is a very effective lead chelator (moreso than DMPS, > I think). > > I am sure this is too much information, but hopefully it helps. > Further recommendations: buy Andy Cutler's Hair Test Interpretations > book, read the files section, post any questions, and DON'T RELY ON > ANYONE OTHER THAN YOURSELF to make decisions for your son. > > Sorry if this is rambling. I just feel strongly about this stuff. > > Best, > > Anne > > > > > > > > > > >> >> Has anyone who has a child with speech apraxia done chelation? If > so, >> did it help.....is your child speaking normally now? My 2 1/2 yr old >> was diagnosed with PDD and speech apraxia. He is at the very mild > end >> of the spectrum, but he can't put more than 2 words together, and > just >> says single words. We've been seeing a DAN doctor and did the >> challenge test for chelation with DMPS. It showed a high amount of >> mercury, yet it wasn't in the red zone, so I am not sure whether to > do >> chelation. I would appreciate any feedback. >> >> Thanks, >> Patty >> > > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
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