Guest guest Posted May 21, 2001 Report Share Posted May 21, 2001 Cherry, I lived in Oklahoma City when I was diagnosed with AIH in 1980. My gasteroenterologist was excellent! His name is Larry Bookman. I don't know if that is too far for you, if so maybe he could refer you to someone in the Tulsa area. In addition to being a smart and caring men, he zoomed in on the diagnosis after I had been through amost a year of other Dr's, test after test and noone who had any idea what was wrong. I have been gone from the area for a long time and don't know his phone #. I hoghly recommend him! Patty AIH post transplant 98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hello Fellow Parents! I just wanted to take a minute to give you some encouragement. Three years ago when our son was first diagnosed PDD/NOS, we were stunned. He spoke, he looked at us, but what we didn't know was that he didn't do it with anyone else, and there was another dimension to his thinking and communication that just wasn't there. You know, the wake up call. He didn't play with other children, but stood at the sand box at our church pre school and sifted sand over and over and over all day long. He couldn't speak in complete sentences ( I never noticed--I'm his momma and I could understand a grunt and a point). His Sensory Integration Disorder was with hearing and touch. He couldn't tolerate being touched by kids and got in trouble a LOT for pushing kids down (they pre school hid it not to hurt our feelings until it got intolerable at school, thinking they would be able to coach him out of it). He hears through walls and listened to everything. He screamed at a fireworks display once from the pain in his ears. He spun on the floor and chewed on his shirt necks until they were soaked. His eyes tracked. He didn't always respond unless I said, " look at me " and asked the questions again and again. He looked through me. He had never hugged me and said, " mommy, I love you. " After attending a conference here in Houston and reading Seroussi's book, we started the GF/CF diet and within one week, he was playing WITH other children at his PPCD class, and spoke his first full sentence. The shirt chewing went away and he stopped spinning on the floor. A few months into the diet he began to improve even more as his STIMs decreased and he began showing us that he had an imagination in there. We began treatment with Dr. Arturo Volpe in Houston last April, wanting to implement some of the vitamin therapies we had read about in the DAN! protocol available from www.autismresearchinstitute.com that we had no idea how to do. We are committed to seeing get well and wanted to do whatever we could no matter what the cost to help him. Progress was slow at first, as Dr. Volpe does not believe in shocking the system, but healing the body. Long story short, he's on 22 different supplements, takes methyl B-12 injections, Nystatin, omega 3 oils and is now undergoing DMSA chelation therapy. He's off Ritalin (methylphenidate). His autism is going away. There's just no other way to explain it than that. B-12 helped his focus and communication dramatically. His spelling tests at school (he's in regular 1st grade with resource to do his work for his focus problem) went from 50's (he missed the word " a " --he simply wasn't able to hear it and transfer them on to the paper and focus enough to do it) to 90's and 100's in a matter of 3 days. I woke up one morning over Christmas holidays to a sound I had never heard. and his 4 year old sister were upstairs playing together--TOGETHER and I just sat there and cried realizing how much the b-12 had helped him. The DMSA is where we are noticing the most changes. Right now, lead is pouring out of his system. Don't ask your pediatrician to do a serum lead, it will show " normal " . You have to do the DMSA urine test to see the lead and other heavy metals in their systems. If you've read about the thimerosol issue, Dr. Bradstreet's research focuses on the body needing to be healed to a certain point with Copper, Magnesium, and Zinc absorption BEFORE mercury will come out. We're still waiting for it to come out, but we know from the tests that it is there sleeping, waiting for 's body to be ready to release it. Last month, I took into his primary care pediatrician for a regular well child check up. He hasn't been sick since we took him off wheat and dairy, so it has been 2 years of calls to the Dr., asking if he new about " X " therapy to help us, with usually a neutral answer. " I don't know about this, and can't support it. " We just kept doing what Dr. Volpe said, anyway. My pediatrician had a medical student in his office and was giving him 's autism medical history. Then he said, " and if I saw today in the community I would recognize him physically, but not in any other way. If he came into my clinic today as a new patient, I doubt I would catch any signs of autistic spectrum disorders. " Wow. I sat there stunned. I knew we thought what we were doing was working, but now a skeptical Dr. in the mainstream had confirmed what we knew. It was working. My Dr. called on Dr. Volpe's office to get copies of his treatment records sent over--he's actually watching with interest now, instead of skepticism. My point . . . no matter what your doctor tells you, there is something you can do to help your autistic kid. is totally verbal now, in regular 2nd grade in the fall, and up for reevaluation on his autism. I anticipate him losing services because he simply doesn't need them. His SID's are gone. His motor skills are better. His focus is up. We have a long way to go socially, because he's waking up from his dream world and realizing that he doesn't fit in. Thank God for the summer is all I have to say! If you've ever dreamed of your autistic child crawling up in your lap, hugging your neck, rubbing his cheek against yours, and saying, " mommy (or daddy) I love you, " then do the DAN! protocol with a trained DAN! doctor. There is hope out there for our kids. Keep reading, working, crying, being frustrated, and trying again. Don't listen to the doctors that offer you drugs to " control the behavior " , and in the words of Winston Churchill, " never never never never give up! " In love and belief, P. Santos 281 332 1339 www.marykay.com/lsantos Cadillac Unit September 2004 www.laurasantos.com First they ignore you, then they laugh at you, then they fight you, then you win. --Mahatma Gandhi Re: MEG or Magnetoencephalogram > > my son had one done...... it was long but relatively painless! > michelle guppy > > Moisuk <moisuk1@...> wrote: > Hi, > > Does anyone here have direct experience with a MEG or magnetoencephalogram? > > Thanks. > > Cornelia > > > > Texas Autism Advocacy > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Thank you for the words of encouragement ! That is exactly what this list is for - sharing successes - and defeats - so that we can all learn from each other. That is so awesome to read - we wish your son continued healing! Guppy Palmire Santos <foxylaura@...> wrote: Hello Fellow Parents! I just wanted to take a minute to give you some encouragement. Three years ago when our son was first diagnosed PDD/NOS, we were stunned. He spoke, he looked at us, but what we didn't know was that he didn't do it with anyone else, and there was another dimension to his thinking and communication that just wasn't there. You know, the wake up call. He didn't play with other children, but stood at the sand box at our church pre school and sifted sand over and over and over all day long. He couldn't speak in complete sentences ( I never noticed--I'm his momma and I could understand a grunt and a point). His Sensory Integration Disorder was with hearing and touch. He couldn't tolerate being touched by kids and got in trouble a LOT for pushing kids down (they pre school hid it not to hurt our feelings until it got intolerable at school, thinking they would be able to coach him out of it). He hears through walls and listened to everything. He screamed at a fireworks display once from the pain in his ears. He spun on the floor and chewed on his shirt necks until they were soaked. His eyes tracked. He didn't always respond unless I said, " look at me " and asked the questions again and again. He looked through me. He had never hugged me and said, " mommy, I love you. " After attending a conference here in Houston and reading Seroussi's book, we started the GF/CF diet and within one week, he was playing WITH other children at his PPCD class, and spoke his first full sentence. The shirt chewing went away and he stopped spinning on the floor. A few months into the diet he began to improve even more as his STIMs decreased and he began showing us that he had an imagination in there. We began treatment with Dr. Arturo Volpe in Houston last April, wanting to implement some of the vitamin therapies we had read about in the DAN! protocol available from www.autismresearchinstitute.com that we had no idea how to do. We are committed to seeing get well and wanted to do whatever we could no matter what the cost to help him. Progress was slow at first, as Dr. Volpe does not believe in shocking the system, but healing the body. Long story short, he's on 22 different supplements, takes methyl B-12 injections, Nystatin, omega 3 oils and is now undergoing DMSA chelation therapy. He's off Ritalin (methylphenidate). His autism is going away. There's just no other way to explain it than that. B-12 helped his focus and communication dramatically. His spelling tests at school (he's in regular 1st grade with resource to do his work for his focus problem) went from 50's (he missed the word " a " --he simply wasn't able to hear it and transfer them on to the paper and focus enough to do it) to 90's and 100's in a matter of 3 days. I woke up one morning over Christmas holidays to a sound I had never heard. and his 4 year old sister were upstairs playing together--TOGETHER and I just sat there and cried realizing how much the b-12 had helped him. The DMSA is where we are noticing the most changes. Right now, lead is pouring out of his system. Don't ask your pediatrician to do a serum lead, it will show " normal " . You have to do the DMSA urine test to see the lead and other heavy metals in their systems. If you've read about the thimerosol issue, Dr. Bradstreet's research focuses on the body needing to be healed to a certain point with Copper, Magnesium, and Zinc absorption BEFORE mercury will come out. We're still waiting for it to come out, but we know from the tests that it is there sleeping, waiting for 's body to be ready to release it. Last month, I took into his primary care pediatrician for a regular well child check up. He hasn't been sick since we took him off wheat and dairy, so it has been 2 years of calls to the Dr., asking if he new about " X " therapy to help us, with usually a neutral answer. " I don't know about this, and can't support it. " We just kept doing what Dr. Volpe said, anyway. My pediatrician had a medical student in his office and was giving him 's autism medical history. Then he said, " and if I saw today in the community I would recognize him physically, but not in any other way. If he came into my clinic today as a new patient, I doubt I would catch any signs of autistic spectrum disorders. " Wow. I sat there stunned. I knew we thought what we were doing was working, but now a skeptical Dr. in the mainstream had confirmed what we knew. It was working. My Dr. called on Dr. Volpe's office to get copies of his treatment records sent over--he's actually watching with interest now, instead of skepticism. My point . . . no matter what your doctor tells you, there is something you can do to help your autistic kid. is totally verbal now, in regular 2nd grade in the fall, and up for reevaluation on his autism. I anticipate him losing services because he simply doesn't need them. His SID's are gone. His motor skills are better. His focus is up. We have a long way to go socially, because he's waking up from his dream world and realizing that he doesn't fit in. Thank God for the summer is all I have to say! If you've ever dreamed of your autistic child crawling up in your lap, hugging your neck, rubbing his cheek against yours, and saying, " mommy (or daddy) I love you, " then do the DAN! protocol with a trained DAN! doctor. There is hope out there for our kids. Keep reading, working, crying, being frustrated, and trying again. Don't listen to the doctors that offer you drugs to " control the behavior " , and in the words of Winston Churchill, " never never never never give up! " In love and belief, P. Santos 281 332 1339 www.marykay.com/lsantos Cadillac Unit September 2004 www.laurasantos.com First they ignore you, then they laugh at you, then they fight you, then you win. --Mahatma Gandhi Re: MEG or Magnetoencephalogram > > my son had one done...... it was long but relatively painless! > michelle guppy > > Moisuk <moisuk1@...> wrote: > Hi, > > Does anyone here have direct experience with a MEG or magnetoencephalogram? > > Thanks. > > Cornelia > > > > Texas Autism Advocacy > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 >My Dr. called on Dr. Volpe's office to get copies of his treatment records sent over--he's actually watching with interest now, instead of skepticism. My point . . . no matter what your doctor tells you, there is something you can do to help your autistic kid. is totally verbal now, in regular 2nd grade in the fall, and up for reevaluation on his autism. I anticipate him losing services because he simply doesn't need them. His SID's are gone. His motor skills are better. His focus is up. We have a long way to go socially, because he's waking up from his dream world and realizing that he doesn't fit in. Thank God for the summer is all I have to say! >Praise God that he has blessed your family!! What great joy! We've been experiencing similar results with our son but through vitamins, homeopathic chelation, NAET and craniosacral. It's been so amazing to watch my son begin to have conversations with his sister and want to be a part of our world. We're not completely there yet, but we get closer all the time. a, who is your pediatrician? There is a great need in the Houston area for pedis who are open to the DAN! protocols. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 >My Dr. called on Dr. Volpe's office to get copies of his treatment records sent over--he's actually watching with interest now, instead of skepticism. My point . . . no matter what your doctor tells you, there is something you can do to help your autistic kid. is totally verbal now, in regular 2nd grade in the fall, and up for reevaluation on his autism. I anticipate him losing services because he simply doesn't need them. His SID's are gone. His motor skills are better. His focus is up. We have a long way to go socially, because he's waking up from his dream world and realizing that he doesn't fit in. Thank God for the summer is all I have to say! >Praise God that he has blessed your family!! What great joy! We've been experiencing similar results with our son but through vitamins, homeopathic chelation, NAET and craniosacral. It's been so amazing to watch my son begin to have conversations with his sister and want to be a part of our world. We're not completely there yet, but we get closer all the time. a, who is your pediatrician? There is a great need in the Houston area for pedis who are open to the DAN! protocols. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 , Just a quick question before I ramble. Did your functional assessment investigate free time versus task time? Holland (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Quoting : > Thanks so much for all the support, been withdrawn off everything, > finished all medication, on morphine, this is my choice, I don't want to live anymore. Lots of love Carol - Australia > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Messages In This Digest (2 > Messages) > > > > > 1a. > > Immune suppresion > From: > jb50192@... > 1b. > > Re: Immune suppresion > From: > rrfman > > > > View All Topics | Create New Topic > > > Messages > > > > 1a. > > > > Immune suppresion > > Posted by: " jb50192@... " > jb50192@... > > > jcbjcbjcb2000 > > > > Sun Apr 26, 2009 6:47 am (PDT) > > > > > > > > Hi , > > Thank you for Dr. Keating's email - even though he chose not to respond to > > my research question. With my lack of technical skill, I was wondering if > > you would consider posting the following for me on your CIG discussion > > group. > > Immune Suppression Question: > > Has anyone else ever experienced immune suppression problems from IgA > > deficiency following chemotherapy? This has greatly negatively impacted my > > quality of life, and caused me many problems - including frequent > respiratory > > infections and 4 bouts of pneumonia this year. My Kaiser medical providers > > just recommend continually taking antibiotics and tell me taking Vit C, > > etc. could make me even more susceptible to pneumonia. They have ruled out > > trying gamma globulin, because I developed allergic reactions to many > > medications following 6 months of chemotherapy 3 years ago. > > I would be greatly appreciative if anyone knows of any possible experts > > world wide who might be knowledgeable about such immune suppression > problems, > > or if anyone has any suggestions regarding research institutions anywhere > > in the world that might be helpful. > > Many thanks, Louise > > louise@... > > PS In case anyone is curious to know more about my situation, here is some > > info about it: My IgA deficiency was noted following 6 months of > > chemotherapy given 3 years ago for an unclear leukemia – lymphoma > diagnosis. (Dx > > then included: Stanford - CLL/PLL; City of Hope - CLL/SLL; Rush Hospital - > non > > Hodgkin’s lymphoma with a leukemia aspect; UCLA – atypical CLL/SLL with > > increased prolymphocytes; Kaiser – lymphoproliferative disorder that may > > include CLL, SLL, B cell PLL, splenic marginal zone lymphoma, variant of > > mantel cell lymphoma). Chemotherapy primarily included Fludarabine and > Rituxan > > with Prednisone, etc. (Cytoxan 1st briefly prescribed but D/C after WBC > > rose above previous 80,000). My IgA, which was normal in 04/06, now remains > > under 6 mg/dl (normal range 40 – 375), and is apparently considered the > cause > > of my unfortunate immune suppression situation. > > Thanks everyone again, Louise > > **************A Good Credit Score is 700 or Above. See yours in just 2 easy > > steps!(http://pr.atwola.com/promoclk/100126575x1220814855x1201410739/aol?red > > ir=http://www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=A > > prilfooter426NO62) > > > > > > > Back to top > > Reply to sender > | > > Reply to group > | > > Reply via web post > > > > Messages in this topic > (2) > > 1b. > > > > Re: Immune suppresion > > Posted by: " rrfman " > rrfurman@... > > > rrfman > > > > Sun Apr 26, 2009 4:50 pm (PDT) > > > > > > Louise > > Having low antibodies (hypogammaglobulinemia) is quite common in CLL > patients, perhaps up to 75% of patients. The level of the low antibodies, > and the quality of the remaining antibiodies, differentiate those who run > into trouble from recurrent infections from those who do not. Infusions of > antibodies (IV Ig or IVIG or gammaglobulin infusions) are very helpful in > preventing recurrent infections. The current recommendations are for > patients who are hypogammaglobulinemic and: > > 1) have recurrent infections > > 2) a single life threatening infection > > 3) chronic sinusitis or bronchietasis > > > > The only patients who develop problems from IV Ig are those patients who are > IgA deficient. This means not just having low IgA levels, but no IgA. The > IgA deficiency needs to have been present since childhood in order to be a > problem. What happens is that you can develop an allergic reaction that can > result in anaphylaxis when exposed to IV Ig. > > > > If your IgA was normal in 4/06, you are not going to develop an allergy and > should be able to tolerate IV Ig. It is not uncommon for people to develop > low-grade fevers and chills during the infusions, but not much more. > > > > With regard to your case, you really sound as if you would benefit from IV Ig > and should be able to tolerate it. > > > > Rick Furman, MD > > > > > > > > > > > > > Hi , > > > Thank you for Dr. Keating's email - even though he chose not to respond to > > > my research question. With my lack of technical skill, I was wondering if > > > you would consider posting the following for me on your CIG discussion > > > group. > > > Immune Suppression Question: > > > Has anyone else ever experienced immune suppression problems from IgA > > > deficiency following chemotherapy? This has greatly negatively impacted > my > > > quality of life, and caused me many problems - including frequent > respiratory > > > infections and 4 bouts of pneumonia this year. My Kaiser medical providers > > > just recommend continually taking antibiotics and tell me taking Vit C, > > > etc. could make me even more susceptible to pneumonia. They have ruled out > > > trying gamma globulin, because I developed allergic reactions to many > > > medications following 6 months of chemotherapy 3 years ago. > > > I would be greatly appreciative if anyone knows of any possible experts > > > world wide who might be knowledgeable about such immune suppression > problems, > > > or if anyone has any suggestions regarding research institutions anywhere > > > in the world that might be helpful. > > > Many thanks, Louise > > > louise@... > > > PS In case anyone is curious to know more about my situation, here is some > > > info about it: My IgA deficiency was noted following 6 months of > > > chemotherapy given 3 years ago for an unclear leukemia †" lymphoma > diagnosis. (Dx > > > then included: Stanford - CLL/PLL; City of Hope - CLL/SLL; Rush Hospital - > non > > > Hodgkin’s lymphoma with a leukemia aspect; UCLA †" atypical > CLL/SLL with > > > increased prolymphocytes; Kaiser †" lymphoproliferative disorder that > may > > > include CLL, SLL, B cell PLL, splenic marginal zone lymphoma, variant of > > > mantel cell lymphoma). Chemotherapy primarily included Fludarabine and > Rituxan > > > with Prednisone, etc. (Cytoxan 1st briefly prescribed but D/C after WBC > > > rose above previous 80,000). My IgA, which was normal in 04/06, now > remains > > > under 6 mg/dl (normal range 40 †" 375), and is apparently considered > the cause > > > of my unfortunate immune suppression situation. > > > Thanks everyone again, Louise > > > **************A Good Credit Score is 700 or Above. See yours in just 2 easy > > > > steps!(http://pr.atwola.com/promoclk/100126575x1220814855x1201410739/aol?red > > > > ir=http://www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=A > > > prilfooter426NO62) > > > > > > > > > > > > Back to top > > Reply to sender > | > > Reply to group > | > > Reply via web post > > > > Messages in this topic > (2) > > > > > > > > > > > > > > > > > Recent Activity > > > > 1 > New Members > > > > > > > > > > Visit Your Group > > > > > > Finance > It's Now Personal > Guides, news, > advice & more. > > All-Bran > 10 Day Challenge > Join the club and > feel the benefits. > > > Mom Power > Community just for Moms > Join the discussion > > > > > > Need to Reply? > Click one of the " Reply " links to respond to a specific message > in the Daily Digest. > > > > > > Create New Topic | > > Visit Your Group on the Web > > > > > > Messages > | Files > | Photos > | Links > > | Polls > > | Calendar > > > > MARKETPLACE > > > I'm happy I lost my Job. Now I make $12,000/mo online! See how I > do it: WealthResource.org. > > > Mom Power: Discover the community of moms doing more > for their families, for the world and for each other > > > > > > > Change settings via the Web ( ID required) > > Change settings via email: Switch delivery to Individual | Switch format > to Traditional > > > Visit Your Group | > > Terms of Use | > > Unsubscribe > > > > ------------------------------------------------------------ This email was sent from Netspace Webmail: http://www.netspace.net.au Quote Link to comment Share on other sites More sharing options...
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