Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Hi all, My name is and I have 2 sons, Lucas 4.7 PDD-NOS and Spencer 3 NT. We live in Pennsylvania--1 hour from Philadelphia. We have been doing an ABA program and typical preschool with Lucas and he is improving. His major deficit remains delayed language although this is improving as well. We tried the gf/cf diet for 4 months without improvement. He is now on a regular diet. Lucas has had a severe fungal infection of his toenails since the age of 2 1/2. I have been to numerous MD's about treating this and finally now have a prescription for a heavy duty anti-fungal medication. I am now convinced that he also has mercury poisoning. I am a master's prepared nurse and my husband is a conservative MD. Neither of us are comfortable trying unconventional approaches (my husband more so then I). In the past year we have been to the following conventional doctors: Developmental MD, psychologist, dermatologist, genetic doctor, GI, ENT, Allergist, and Immunologist. I am beginning to realize that we must explore other less conservative methods. My questions: How do I convince myself and my husband to try chelation? (any professional research we could read?) How is this fungal infection related and should I treat this first? What are the initial tests I should do? I have heard melatonin has some kind of effect on metals--is this true? Do your kids need to be on gf/cf diets? Do any kids get worse or not improve with chelation? I am hoping to attend a DAN! conference in May. Thanks for all of your help. I just joined the list this weekend and am learning a lot. mary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 , have you gone to the files at the autism treatment site? Many of your questions might be answered there, with references. go to www.autism treatment@... and sign in. Once into the autism mercury page, click on " files " on the left. Carol G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Where is there a DAN conference in May? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 We live in Wyomissing. How old is your child? Have you found a good DAN! doctor? mary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 The Oakland County Chapter (in Michigan) is sponsoring a great conference on May 5 and 6. Speakers are Wakefield, Shattock, Pangborn, Cave, Barese and . I have forwarded a more detailed post about it. You can print a downloadable form on ANDI's website Go to www.autismndi.com, then go to " upcoming speaking engagements " and go to May 5th and 6th. Tali --- krnstvn@... wrote: > Where is there a DAN conference in May? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 Where do you live in Pa? I also am an hour from Philadelphia. Do you live anywhere near Geigertown? Sharon MLBarbera@... wrote: > Hi all, > > My name is and I have 2 sons, Lucas 4.7 PDD-NOS and Spencer 3 NT. We > live in Pennsylvania--1 hour from Philadelphia. We have been doing an ABA > program and typical preschool with Lucas and he is improving. His major > deficit remains delayed language although this is improving as well. We > tried the gf/cf diet for 4 months without improvement. He is now on a > regular diet. Lucas has had a severe fungal infection of his toenails since > the age of 2 1/2. I have been to numerous MD's about treating this and > finally now have a prescription for a heavy duty anti-fungal medication. > > I am now convinced that he also has mercury poisoning. I am a master's > prepared nurse and my husband is a conservative MD. Neither of us are > comfortable trying unconventional approaches (my husband more so then I). In > the past year we have been to the following conventional doctors: > Developmental MD, psychologist, dermatologist, genetic doctor, GI, ENT, > Allergist, and Immunologist. I am beginning to realize that we must explore > other less conservative methods. My questions: > > How do I convince myself and my husband to try chelation? (any professional > research we could read?) > How is this fungal infection related and should I treat this first? > What are the initial tests I should do? > I have heard melatonin has some kind of effect on metals--is this true? > Do your kids need to be on gf/cf diets? > Do any kids get worse or not improve with chelation? > > I am hoping to attend a DAN! conference in May. Thanks for all of your help. > I just joined the list this weekend and am learning a lot. > > mary > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 > I am now convinced that he also has mercury poisoning. I am a master's > prepared nurse and my husband is a conservative MD. Neither of us are > comfortable trying unconventional approaches (my husband more so then I). How does this discomfort express itself? Does reasoned argument help, or do you have to " go along with the crowd " and do something your colleagues approve of? > In > the past year we have been to the following conventional doctors: > Developmental MD, psychologist, dermatologist, genetic doctor, GI, ENT, > Allergist, and Immunologist. I am beginning to realize that we must explore > other less conservative methods. My questions: > > How do I convince myself and my husband to try chelation? Very simple. Focus on the following: What is his present prognosis according to all the " mainstream " guys. What are people reporting is happening to their kids on this list - kids who had a worse prognosis than yours does. Also, talk to the people here who are chelating their kids about it. > (any professional > research we could read?) Not directly on point. A lot that talks around the issue. > How is this fungal infection related and should I treat this first? Don't treat it first. Mercury intoxication prevents neutrophils from making superoxide radical, which is what they use to kill yeast. He can't fight off yeast while toxic. > What are the initial tests I should do? Very few. Doctor's Data hair element analysis, plasma cysteine at Great Smokies Diagnostic Labs (cysteine, the monomer, not cystine the dimer which all labs do). If you want to do more testing, other tests can be helpful, like the comprehensive liver detoxification test (which has cysteine as a part of it) and a fasting plasma amino acid profile. Great smokies is recommended for both these. Many people also do a blood element test (Doctor's Data is recommended for this - they are cheaper and do more elements) and a comprehensive digestive stool analysis at Great Smokies. There is a list of tests that can be used in diagnosis in my book Amalgam Illness: Diagnosis and Treatment (http://hometown.aol.com/noamalgam). > I have heard melatonin has some kind of effect on metals--is this true? No. > Do your kids need to be on gf/cf diets? No. > Do any kids get worse or not improve with chelation? Lots get worse from using inappropriate and harmful chelation protocols. There are a lot of those around. The every 3-4 hour DMSA/ALA protocol has proven to work for most. Even then a few do respond poorly to it. As with any effective therapy, not everyone will respond positively to it. There is always some risk involved. This can be minimized by doing some homework to find out what happened to other people, then starting off a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 You will be hearing the inappropriate and harmful every 8 hour protocol touted then. Some of these same people posted a " consensus " document on the web about the DAN conference results this past weekend - but it was posted on Friday, before the conference. Many parents have done the experiment of trying every 8 and every 4, but there seems to be some continuing emotional difficulty with accepting the results. Andy > > Where is there a DAN conference in May? > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2001 Report Share Posted February 15, 2001 > Hi all, > > My name is and I have 2 sons, Lucas 4.7 PDD-NOS and Spencer 3 NT. We > live in Pennsylvania--1 hour from Philadelphia. We have been doing an ABA > program and typical preschool with Lucas and he is improving. His major > deficit remains delayed language although this is improving as well. We > tried the gf/cf diet for 4 months without improvement. He is now on a > regular diet. Lucas has had a severe fungal infection of his toenails since > the age of 2 1/2. I have been to numerous MD's about treating this and > finally now have a prescription for a heavy duty anti-fungal medication. > > I am now convinced that he also has mercury poisoning. I am a master's > prepared nurse and my husband is a conservative MD. Neither of us are > comfortable trying unconventional approaches (my husband more so then I). In > the past year we have been to the following conventional doctors: > Developmental MD, psychologist, dermatologist, genetic doctor, GI, ENT, > Allergist, and Immunologist. I am beginning to realize that we must explore > other less conservative methods. My questions: > > How do I convince myself and my husband to try chelation? (any professional > research we could read?) > How is this fungal infection related and should I treat this first? > What are the initial tests I should do? > I have heard melatonin has some kind of effect on metals--is this true? > Do your kids need to be on gf/cf diets? > Do any kids get worse or not improve with chelation? > > I am hoping to attend a DAN! conference in May. Thanks for all of your help. > I just joined the list this weekend and am learning a lot. > > mary , I, too, am (was?) a conservative MD, university professor, etc. who has two sons diagnosed with autism. I must admit that I was slow to accept some of the " alternative " treatments advocated and I have been reluctant to try anything without both a plausible mechanism for it reputed effect and some sort of outcome information - not just anecdotes, which often abound. I still don't " buy " everything that is out there, but I'm doing more and more for two simple reasons:they work and nothing in the " mainstream " therapies offers any real hope. And hope is where it's at in autism; if you don't have hope, you have despair. Please feel free to contact me or have your husband contact me and discuss what my wife (another conservative MD) and I have done with our sons. If you e-mail me " off-line " , I'll send you my phone number. Hope to hear from you, Jim Laidler Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 : My son is 4. I called all the different DAN drs. in the area, but none of them took my insurance and we're not in the position to pay for everything out of pocket. I do have a pediatrician that is working somewhat with me and lets me try different things. Mainly the different support groups on-line that I belong to have given me a lot of information. I try out different things that are suggested and see how my son does. Right now I'm using Ojibwa Tea which boosts the immune system, detoxifies, and also helps pull out metals. I recently began probiotics to treat for yeast. Both of these things, plus the GFCF diet, in addition to a yeast-free diet have helped him tremendously. He also has been going 5 mornings a week for the past year and a half to early intervention at Governor Mifflin Middle School through Berks Co. Intermediate Unit. They're terrific there and have helped tremendously. He also receives some home therapy in the afternoon. He just started this extra therapy about 2 months ago. Where does your son go to school? I can't believe you live so close. Wyomissing is about 25 mts. from me. Sharon MLBarbera@... wrote: > We live in Wyomissing. How old is your child? Have you found a good DAN! > doctor? > > mary > > > Quote Link to comment Share on other sites More sharing options...
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