GhostGirl Posted August 19, 2005 Author Share Posted August 19, 2005 QUOTE (Digital Man @ Aug 19 2005, 04:12 PM) We're all pulling for you & yours Belle. I say a little prayer everyday for your family. Thanks, DM. Link to comment Share on other sites More sharing options...
GhostGirl Posted August 19, 2005 Author Share Posted August 19, 2005 QUOTE (dweezil @ Aug 19 2005, 03:15 PM) QUOTE (GhostGirl @ Aug 19 2005, 11:48 AM) UPDATE: I got Stephen an appointment with a holistic M.D. here in our city. I was looking for a dr. for myself, started reading some of the information on his website, and thought...This stuff sounds like what I want for Stephen. So, I called, left a message, he called me back, and said he'd be glad to see Stephen and do the test that the OTHER doctor wouldn't do. Plus I can hopefully cancel the appt. I had made for Stephen to see a dr. in Tennessee, which would be about a 3 1/2 hour drive for us. The downside? No insurance help on this...it's so "radical" they won't pay for this stuff. But, we do what we have to do for our kids, don't we? It's all about the kids Thinking of you and Stephen Thank you, sister... Link to comment Share on other sites More sharing options...
Test4VitalSigns Posted August 26, 2005 Share Posted August 26, 2005 Just found this disturbing and sad story http://news.yahoo.com/s/ap/20050826/ap_on_...tic_boy_s_death Link to comment Share on other sites More sharing options...
Drumnut Posted August 26, 2005 Share Posted August 26, 2005 QUOTE (Test4VitalSigns @ Aug 25 2005, 05:56 PM)Just found this disturbing and sad story http://news.yahoo.com/s/ap/20050826/ap_on_...tic_boy_s_death Saw that story too Test, that is awful! Link to comment Share on other sites More sharing options...
GhostGirl Posted August 30, 2005 Author Share Posted August 30, 2005 I saw this story too...thanks to everyone who sent it to me. This quote is from WebMD: QUOTE "'...many parents treat their children's autism with chelation therapies. Most of them consider intravenous EDTA an extreme treatment,' says Sallie Bernard, executive director of Safe Minds, a group that strongly disagrees with the IOM's [institute of Medicine] conclusions. 'The boy who died was using a form of chelation therapy that is not generally recommended or widely practiced within the autism community trying chelation,' Bernard tells WebMD. 'It is an unusual circumstance. EDTA is not what most of these parents are doing. It is not what is considered the right form of chelation.'" We haven't entered this phase with Stephen...we see one doctor tomorrow (a neurologist) and another doctor on Friday (a holistic doctor who is a real M.D. as well - not the self-proclaimed "holistic healers" that seem to be popping up everywhere)...and so we'll see. We're trying to gather information from every possible source to make the best choices for Stephen. I will not take one ounce of his care and treatment lightly, or undertake anything that is dangerous. I want to help him, and while that may take the form of "non-traditional" treatments, nothing will be done that isn't completely researched first. Thanks again for caring. Link to comment Share on other sites More sharing options...
GhostGirl Posted September 3, 2005 Author Share Posted September 3, 2005 I found a doctor who is a decent, caring man, who is a real M.D. yet works diligently to get patients OFF of the medicines that treat only the symptoms, not the root of the problem. It's a real start, and I'm feeling decidedly more light-hearted tonight. Someone finally listened to me, and he knows exactly what steps to take to try to help Stephen. It's not an absolute guarantee, but it's something. Thanks from my heart to everyone who has reached out to me. I need your support, and I'm grateful. Link to comment Share on other sites More sharing options...
D-13 Posted September 3, 2005 Share Posted September 3, 2005 QUOTE (GhostGirl @ Sep 2 2005, 08:04 PM) I found a doctor who is a decent, caring man, who is a real M.D. yet works diligently to get patients OFF of the medicines that treat only the symptoms, not the root of the problem. It's a real start, and I'm feeling decidedly more light-hearted tonight. Someone finally listened to me, and he knows exactly what steps to take to try to help Stephen. It's not an absolute guarantee, but it's something. Thanks from my heart to everyone who has reached out to me. I need your support, and I'm grateful. This is good news GG! Link to comment Share on other sites More sharing options...
Test4VitalSigns Posted September 3, 2005 Share Posted September 3, 2005 QUOTE (GhostGirl @ Sep 2 2005, 10:04 PM) I found a doctor who is a decent, caring man, who is a real M.D. yet works diligently to get patients OFF of the medicines that treat only the symptoms, not the root of the problem. It's a real start, and I'm feeling decidedly more light-hearted tonight. Someone finally listened to me, and he knows exactly what steps to take to try to help Stephen. It's not an absolute guarantee, but it's something. Thanks from my heart to everyone who has reached out to me. I need your support, and I'm grateful. That's good to hear GG A good start.... Of course you have all of our support Link to comment Share on other sites More sharing options...
GhostGirl Posted September 8, 2005 Author Share Posted September 8, 2005 Several people have asked me about the lines in my sig, under Stephen's picture. I posted about the song last fall, after the new U2 album came out, so if you don't mind, I'm just pasting in my post from back then. Thanks again to everyone who keeps in touch with me and cares about Stephen. QUOTE (GhostGirl @ Nov 30 2004, 12:52 AM)Most of you know my son Stephen has autism. I'm loving the new U2 album, and there's a song on it called "Miracle Drug," that I believe Bono wrote about a friend of his who was stricken with cerebral palsy. I'm not equating autism and CP, but these lyrics have moved me powerfully...they express exactly how it feels to want to communicate with someone so badly it hurts. This song describes how I feel about my son perfectly. Indulge me and give them a good read. I want a trip inside your head Spend the day there... To hear the things you haven't said And see what you might see I want to hear you when you call Do you feel anything at all? I want to see your thoughts take shape And walk right out Freedom has a scent Like the top of a new born baby's head The songs are in your eyes I see them when you smile I've seen enough I'm not giving up On a miracle drug Of science and the human heart There is no limit There is no failure here sweetheart Just when you quit... I am you and you are mine Love makes nonsense of space And time... will disappear Love and logic keep us clear Reason is on our side, love... I've had enough of romantic love I'd give it up, yeah, I'd give it up For a miracle, a miracle drug, a miracle drug God I need your help tonight Beneath the noise Below the din I hear a voice It's whispering In science and in medicine "I was a stranger You took me in" The songs are in your eyes I see them when you smile I've had enough of romantic love Yeah I'd give it up, yeah I'd give it up For a miracle, a miracle drug Miracle, miracle drug http://img.photobucket.com/albums/v297/RushBabe/Stephen/PICT0019.jpg "The songs are in your eyes, I see them when you smile..." you, sweetie! Link to comment Share on other sites More sharing options...
sullysue Posted September 8, 2005 Share Posted September 8, 2005 Oh, my gosh, M. That's beautiful. Your baby is an angel. He's fortunate to have you for a mother. Your heart is made of gold. SS Link to comment Share on other sites More sharing options...
Cygnus Posted September 8, 2005 Share Posted September 8, 2005 QUOTE (sullysue @ Sep 8 2005, 10:53 AM) Oh, my gosh, M. That's beautiful. Your baby is an angel. He's fortunate to have you for a mother. Your heart is made of gold. SS I concur GG Link to comment Share on other sites More sharing options...
GhostGirl Posted September 8, 2005 Author Share Posted September 8, 2005 Oh, my heart's just a regular one. It's just got a couple of little boys living in it. Link to comment Share on other sites More sharing options...
Dweezil Posted September 8, 2005 Share Posted September 8, 2005 GG As the masks of our composure drop, and we see the suffering and courage and brokeness and deeper dignity underneath, I truly respect and love you. Through love and respect we assist one another to elevate each other. You know the closest place to find grace, courage, strength and love? It is within yourself. Love and hugs to you and Stephen Link to comment Share on other sites More sharing options...
GhostGirl Posted September 8, 2005 Author Share Posted September 8, 2005 QUOTE (dweezil @ Sep 8 2005, 10:06 AM) GG As the masks of our composure drop, and we see the suffering and courage and brokeness and deeper dignity underneath, I truly respect and love you. Through love and respect we assist one another to elevate each other. You know the closest place to find grace, courage, strength and love? It is within yourself. Love and hugs to you and Stephen You have no idea HOW MUCH that means. Well...yeah, you do. EDITED for clarity Link to comment Share on other sites More sharing options...
GhostGirl Posted September 8, 2005 Author Share Posted September 8, 2005 I find myself needing to come in here and let off steam, so I hope you guys don't mind. I'm still reading Evidence of Harm and am now learning about a conference the CDC had with certain vaccine company reps and related personnel...basically the meeting was to discuss the "signal" being tossed around that the thimerosal/autism connection was real, and specifically if it was "significant." In relation to the number and type of kids included in "studies" done by the CDC...Dr. David Rhodes (a CDC statistician) argued that kids with congential disorders (who had been excluded from the study RIGHTLY - if a disorder is clearly congenital, thimerosal isn't CAUSING their difficulty) should be put back into the mix: QUOTE All those kids that Tom [CDC investigator] has excluded, I have thrown them in. I think there is a clear argument that is going too far, but that further brings things down. So you can push, I can pull. But there has been substantial movement from this very highly significant result, down to a fairly marginal result. Evidence of Harm, pp. 170-71 They put kids into the statistical pool whom they KNEW they could categorically say, "Look! Thimerosal didn't damage them at all." That's because they were ALREADY HURT. They padded the numbers to make themselves look better. This example (and there are tons more) makes me so sick I can hardly sit up in my chair. Thanks for letting me vent. Link to comment Share on other sites More sharing options...
Daylin Posted September 8, 2005 Share Posted September 8, 2005 GG, this is unacceptable...to say the least! I know you are going through some very hard, frustrating, stressful....etc., times. Just know we/I care so much about you and your son! I wish there was something I could do! What I can do is pray for you and Stephen And listen to and feel...as best I can, your words....Anytime! Love, Lin Link to comment Share on other sites More sharing options...
GhostGirl Posted September 9, 2005 Author Share Posted September 9, 2005 Thanks, Daylin. Link to comment Share on other sites More sharing options...
sullysue Posted September 9, 2005 Share Posted September 9, 2005 QUOTE (GhostGirl @ Sep 8 2005, 02:20 PM) I find myself needing to come in here and let off steam, so I hope you guys don't mind. I'm still reading Evidence of Harm and am now learning about a conference the CDC had with certain vaccine company reps and related personnel...basically the meeting was to discuss the "signal" being tossed around that the thimerosal/autism connection was real, and specifically if it was "significant." In relation to the number and type of kids included in "studies" done by the CDC...Dr. David Rhodes (a CDC statistician) argued that kids with congential disorders (who had been excluded from the study RIGHTLY - if a disorder is clearly congenital, thimerosal isn't CAUSING their difficulty) should be put back into the mix: QUOTE All those kids that Tom [CDC investigator] has excluded, I have thrown them in. I think there is a clear argument that is going too far, but that further brings things down. So you can push, I can pull. But there has been substantial movement from this very highly significant result, down to a fairly marginal result. Evidence of Harm, pp. 170-71 They put kids into the statistical pool whom they KNEW they could categorically say, "Look! Thimerosal didn't damage them at all." That's because they were ALREADY HURT. They padded the numbers to make themselves look better. This example (and there are tons more) makes me so sick I can hardly sit up in my chair. Thanks for letting me vent. This is so inexcusable. How can they live with themselves after expending so much energy covering their tracks rather than putting the well-being of children first? Vent all you want, G.G. We're all standing with you. Link to comment Share on other sites More sharing options...
GhostGirl Posted September 9, 2005 Author Share Posted September 9, 2005 Thank you, sis. I was just saying this morning that I don't know how the people who made these decisions to keep this quiet live with themselves, or stand to look at themselves in the mirror...when deep down, they KNOW this was the wrong thing to do. Link to comment Share on other sites More sharing options...
GhostGirl Posted October 4, 2005 Author Share Posted October 4, 2005 Second Song to Darkness In my deepest depression I could be lifted by a sound and a rhythm, as if the innermost heart of all cold murky hopeless places had developed a voice and begun to speak repeat a thought like an echo there were edges of steel and glass in that voice and it could make you listen, still, attending follow the news, feel the change in underground currents see if there won't be sparks flying soon not long I believe, until it will blow itself to a furious flame, a torch that won't be covered this mind so full of some passion, so blind, that in the deepest dark it won't cease its song never seeing it's giving that place a name, a sound and a rhythm it must soon begin to shine its own light (H. Pukki, Autism Netverse) Link to comment Share on other sites More sharing options...
happysmiles007 Posted October 4, 2005 Share Posted October 4, 2005 how very sweet, GG, and so deep.. Link to comment Share on other sites More sharing options...
NeilPeartFan2112 Posted October 4, 2005 Share Posted October 4, 2005 GG, I hope that everything will get better for your son. Having a disability myself, I know how hard it can be at times, for both myself and my parents. No matter how difficult the times may become, I have always been able to get through it, and I hope that will be the case for you. I know that you are a very loving person and that you will do anything for your children just as any parent would. Hopefully this means something for you, and I wish you and your family the best of luck, as always. Billy Link to comment Share on other sites More sharing options...
Pags Posted October 5, 2005 Share Posted October 5, 2005 [sigh] all that you go through. And I know nobody could keep you from any of it for even a moment if it means trying to help Stephen. I'll keep praying for his way through this, and for your perseverance. Link to comment Share on other sites More sharing options...
Necromancer Posted October 5, 2005 Share Posted October 5, 2005 I can't begin to find the words to express all that i feel after reading this entire thread. I knew from some small posts and your signature that you dealt with autism with your son, but until reading this thread, and a recent conversation with Rolinda about her son's trials had I ever comprehended the degree. I have taken my children's relatively good health for granted in the past, and though I always thank God for what we do have, it somehow adds to the feeling of thankfullness when you are confronted with what others must endure. I could NEVER handle things as you all who have endured this have. These children that have been trespassed upon by "medical science" have at least been blessed by having parents as loving and caring and STRONG as you. I will add you to my prayers and I do wish you all well and that science or holistic treatment can step up and help you with this trial you must endure. Stay strong my friends and I hope I can find this level of strength should i ever be confronted with such a nightmare. Link to comment Share on other sites More sharing options...
debe Posted October 5, 2005 Share Posted October 5, 2005 Hello All, Odd that this should come up today. As in class (my nursing class) we were discussing the study just published. I can't remember the doctors name now, but apparently it was a huge study.I will ask my teacher for it again and see if I can find some site links. Anyhoo, the study found no connection to vaccination and autism. So that's out now. Now we just have to find what the common thread is. There has to be something else that all these patients share other than the diagnosis. Link to comment Share on other sites More sharing options...
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