Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 Hi Lori, don't give up hope, maybe it will help your ya'll with the OCD.... IVIG has been a lifesaver helping my son's immunodeficiency and he also gets Neupogen for his neutrophils, his bone marrow doesn't produce enough. So he has barely any infections anymore, when his entire life before was plagued by one infection after another. He started with severe OCD after a bout with strep/scarlet fever. He was diagnosed with Asperger's syndrome a few years before. But the OCD was marked by totally consuming rituals and intrusive thoughts.....not like the Asperger's rituals and their preference for sameness, that's just him and always will be.  His psychologist here (an OCDspecialist/Cognitive Behavior Therapist), sent us to the university of Florida in Gainesville....they had an intensive outpatient program for Pediatric OCD, we stayed there 4 weeks. One consult was with Dr , a PANDAS expert....she did lots of different Strep titers on my son.....and he was diagnosed with PANDAS. She said the faulty antibodies he had against the strep had attacked an area of the brain which resulted in the severe OCD.....They treated him with intensive cognitive behavioral therapy,(which helped him very much) ....she said it was too late for more Penicillin but when he gets strep, he can have a worsening of the OCD and should be treated quickly with Penicillin...., which has happened, and then lessened, but it never goes away...always a big problem for him. When the Immunologist said he needed IVIG for his CVID, I did think... " Oh good, I know in Florida, they mentioned that as a possible OCD therapy " But he still has moderate OCD, severe at times....but who knows, maybe it would be worse if he wasn't getting the IVIG..... As far as his autistic behaviors, with the Asperger's...the IVIG hasn't reduced that a bit....he has extreme sound sensitivity, difficulty with 2 way communication, inflexibility to changes in routineand other delays...... From: Lori W <clwild1@...> Subject: Re: Interesting Date: Friday, May 28, 2010, 2:42 AM  hi Sue- I'm sorry to hear that the IVIG doesn't help with the OCD- for your son's sake and for mine too. One of my boys and I have already been getting IVIG infusions for years and my other son has recently had his diagnosis (long suspected) of CVID confirmed also. I strongly suspect PANDAS for him too and his most recent testing suggests it. He also has OCD- quite severe and I am praying that starting infusions will help him- not only with his CVID but also w/ his PANDAS and his aspergers (unofficial diagnosis) My best friend has a son w/aspergers and I know a lot about it- as does she obviously- and she agrees that it is very likely he has it also. He is able to compensate with support and therapies I have learned from my friend. My son is extremely sensitive @ autism and OCD and refuses to be tested formally- which makes me sad on so many levels...WAY too much rambling could happen but I will stop explaining so much now ;-) What tests were done to confirm the PANDAS diagnosis ? I can remember off the top of my head what was tested- but my son has very classic signs of PANDAS. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 Hi Lori, don't give up hope, maybe it will help your ya'll with the OCD.... IVIG has been a lifesaver helping my son's immunodeficiency and he also gets Neupogen for his neutrophils, his bone marrow doesn't produce enough. So he has barely any infections anymore, when his entire life before was plagued by one infection after another. He started with severe OCD after a bout with strep/scarlet fever. He was diagnosed with Asperger's syndrome a few years before. But the OCD was marked by totally consuming rituals and intrusive thoughts.....not like the Asperger's rituals and their preference for sameness, that's just him and always will be.  His psychologist here (an OCDspecialist/Cognitive Behavior Therapist), sent us to the university of Florida in Gainesville....they had an intensive outpatient program for Pediatric OCD, we stayed there 4 weeks. One consult was with Dr , a PANDAS expert....she did lots of different Strep titers on my son.....and he was diagnosed with PANDAS. She said the faulty antibodies he had against the strep had attacked an area of the brain which resulted in the severe OCD.....They treated him with intensive cognitive behavioral therapy,(which helped him very much) ....she said it was too late for more Penicillin but when he gets strep, he can have a worsening of the OCD and should be treated quickly with Penicillin...., which has happened, and then lessened, but it never goes away...always a big problem for him. When the Immunologist said he needed IVIG for his CVID, I did think... " Oh good, I know in Florida, they mentioned that as a possible OCD therapy " But he still has moderate OCD, severe at times....but who knows, maybe it would be worse if he wasn't getting the IVIG..... As far as his autistic behaviors, with the Asperger's...the IVIG hasn't reduced that a bit....he has extreme sound sensitivity, difficulty with 2 way communication, inflexibility to changes in routineand other delays...... From: Lori W <clwild1@...> Subject: Re: Interesting Date: Friday, May 28, 2010, 2:42 AM  hi Sue- I'm sorry to hear that the IVIG doesn't help with the OCD- for your son's sake and for mine too. One of my boys and I have already been getting IVIG infusions for years and my other son has recently had his diagnosis (long suspected) of CVID confirmed also. I strongly suspect PANDAS for him too and his most recent testing suggests it. He also has OCD- quite severe and I am praying that starting infusions will help him- not only with his CVID but also w/ his PANDAS and his aspergers (unofficial diagnosis) My best friend has a son w/aspergers and I know a lot about it- as does she obviously- and she agrees that it is very likely he has it also. He is able to compensate with support and therapies I have learned from my friend. My son is extremely sensitive @ autism and OCD and refuses to be tested formally- which makes me sad on so many levels...WAY too much rambling could happen but I will stop explaining so much now ;-) What tests were done to confirm the PANDAS diagnosis ? I can remember off the top of my head what was tested- but my son has very classic signs of PANDAS. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 We have given my son IVIG for seems like forwever. Initially he was a chronic illness child, but as he has gotten older, the illness problems have faded. Instead, we see increased OCD, Tics and agitation as he is nearing the point at which he will receive another infusion. Now that we are past the illness issues, we see a calmer, more cognitavely able child within about 2 days of his infusion. There are a number of different reasons that we feel this is observed. Jon The information in this e-mail from Flint Group or its business units is confidential and intended solely for the addressee. If you are not the intended recipient, then disclosure, reproduction, or distribution of this e-mail is prohibited and may be unlawful. If you believe you have received this e-mail in error, then please inform the sender immediately, and permanently delete all copies of the message. Thank you. >why in the world would infusions help ocd?? I am not seeing the correlation? They are two totally separate issues? > >Makenzie > T .. (Embedded image moved to file: pic24221.gif) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 We have given my son IVIG for seems like forwever. Initially he was a chronic illness child, but as he has gotten older, the illness problems have faded. Instead, we see increased OCD, Tics and agitation as he is nearing the point at which he will receive another infusion. Now that we are past the illness issues, we see a calmer, more cognitavely able child within about 2 days of his infusion. There are a number of different reasons that we feel this is observed. Jon The information in this e-mail from Flint Group or its business units is confidential and intended solely for the addressee. If you are not the intended recipient, then disclosure, reproduction, or distribution of this e-mail is prohibited and may be unlawful. If you believe you have received this e-mail in error, then please inform the sender immediately, and permanently delete all copies of the message. Thank you. >why in the world would infusions help ocd?? I am not seeing the correlation? They are two totally separate issues? > >Makenzie > T .. (Embedded image moved to file: pic24221.gif) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 Dosing for PANDAS (like alot of other autoimmune diseases) is quite a bit more grams and usually only in spurt doses. I've seen some autoimmune diseases do as much as 1 gm per kg per day. Also at that dose there is a risk of kidney failure in some patients (usually adult patients who already have risk of kidney disease). Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Lori W <clwild1@...> Sent: Thu, May 27, 2010 10:42:43 PM Subject: Re: Interesting hi Sue- I'm sorry to hear that the IVIG doesn't help with the OCD- for your son's sake and for mine too. One of my boys and I have already been getting IVIG infusions for years and my other son has recently had his diagnosis (long suspected) of CVID confirmed also. I strongly suspect PANDAS for him too and his most recent testing suggests it. He also has OCD- quite severe and I am praying that starting infusions will help him- not only with his CVID but also w/ his PANDAS and his aspergers (unofficial diagnosis) My best friend has a son w/aspergers and I know a lot about it- as does she obviously- and she agrees that it is very likely he has it also. He is able to compensate with support and therapies I have learned from my friend. My son is extremely sensitive @ autism and OCD and refuses to be tested formally- which makes me sad on so many levels...WAY too much rambling could happen but I will stop explaining so much now ;-) What tests were done to confirm the PANDAS diagnosis ? I can remember off the top of my head what was tested- but my son has very classic signs of PANDAS. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 Dosing for PANDAS (like alot of other autoimmune diseases) is quite a bit more grams and usually only in spurt doses. I've seen some autoimmune diseases do as much as 1 gm per kg per day. Also at that dose there is a risk of kidney failure in some patients (usually adult patients who already have risk of kidney disease). Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Lori W <clwild1@...> Sent: Thu, May 27, 2010 10:42:43 PM Subject: Re: Interesting hi Sue- I'm sorry to hear that the IVIG doesn't help with the OCD- for your son's sake and for mine too. One of my boys and I have already been getting IVIG infusions for years and my other son has recently had his diagnosis (long suspected) of CVID confirmed also. I strongly suspect PANDAS for him too and his most recent testing suggests it. He also has OCD- quite severe and I am praying that starting infusions will help him- not only with his CVID but also w/ his PANDAS and his aspergers (unofficial diagnosis) My best friend has a son w/aspergers and I know a lot about it- as does she obviously- and she agrees that it is very likely he has it also. He is able to compensate with support and therapies I have learned from my friend. My son is extremely sensitive @ autism and OCD and refuses to be tested formally- which makes me sad on so many levels...WAY too much rambling could happen but I will stop explaining so much now ;-) What tests were done to confirm the PANDAS diagnosis ? I can remember off the top of my head what was tested- but my son has very classic signs of PANDAS. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 oh ok, so it would be too much to expect from his cvid dose....thanks ursula for clarifying this....sue From: Ursula Holleman <uahollem@...> Subject: Re: Re: Interesting Date: Friday, May 28, 2010, 5:06 PM  Dosing for PANDAS (like alot of other autoimmune diseases) is quite a bit more grams and usually only in spurt doses. I've seen some autoimmune diseases do as much as 1 gm per kg per day. Also at that dose there is a risk of kidney failure in some patients (usually adult patients who already have risk of kidney disease). Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Lori W <clwild1@...> Sent: Thu, May 27, 2010 10:42:43 PM Subject: Re: Interesting hi Sue- I'm sorry to hear that the IVIG doesn't help with the OCD- for your son's sake and for mine too. One of my boys and I have already been getting IVIG infusions for years and my other son has recently had his diagnosis (long suspected) of CVID confirmed also. I strongly suspect PANDAS for him too and his most recent testing suggests it. He also has OCD- quite severe and I am praying that starting infusions will help him- not only with his CVID but also w/ his PANDAS and his aspergers (unofficial diagnosis) My best friend has a son w/aspergers and I know a lot about it- as does she obviously- and she agrees that it is very likely he has it also. He is able to compensate with support and therapies I have learned from my friend. My son is extremely sensitive @ autism and OCD and refuses to be tested formally- which makes me sad on so many levels...WAY too much rambling could happen but I will stop explaining so much now ;-) What tests were done to confirm the PANDAS diagnosis ? I can remember off the top of my head what was tested- but my son has very classic signs of PANDAS. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 Thanks for the info !!! Lori > > > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2010 Report Share Posted May 28, 2010 The theory is that infections effect the brain and cause the mental health issues. By reducing the continued impact of low grade infections you reduce the ongoing damage. This is also the case for lungs and the gut. BARBIE ________________________________ From: K <nalla70@...> Sent: Fri, May 28, 2010 6:24:10 AM Subject: interesting why in the world would infusions help ocd?? I am not seeing the correlation? They are two totally separate issues? Makenzie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 Ursula- Thank you again for the info- I am very interested in the dosing info- for more than treating PANDAS too. I also have CVID (as do 2 of my kids) and a lot of autoimmune diagnoses. 1 gm per kilo per day is obviously a HUGE dose- I thought my dose was high at @ 66 grams -no I am not going to say how many kilos we are looking at ;-) every 3 weeks ! I will have to do some research on the kidney risks I suppose- I have some other complicating diagnoses as do my sons. The info is very much appreciated thank you ! Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 Ursula- Thank you again for the info- I am very interested in the dosing info- for more than treating PANDAS too. I also have CVID (as do 2 of my kids) and a lot of autoimmune diagnoses. 1 gm per kilo per day is obviously a HUGE dose- I thought my dose was high at @ 66 grams -no I am not going to say how many kilos we are looking at ;-) every 3 weeks ! I will have to do some research on the kidney risks I suppose- I have some other complicating diagnoses as do my sons. The info is very much appreciated thank you ! Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 that dosing isn't every 3 weeks though. Usually what happens is that you get that dose, two or three days in a row in an inpatient setting. With it comes the kidney failure risk, side effect risks and the possibility of it not working at all. Usually it is done for a series of 3 stays and then not done again. you are basically shocking the system into a normal state. Unlike the supplementing you do with IVIG to replace or replenish a PID patient. Autoimmune dosing is not meant to be a treatment but a cure. Definitely not long term either. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Lori W <clwild1@...> Sent: Sun, May 30, 2010 3:38:38 PM Subject: Re: Interesting Ursula- Thank you again for the info- I am very interested in the dosing info- for more than treating PANDAS too. I also have CVID (as do 2 of my kids) and a lot of autoimmune diagnoses. 1 gm per kilo per day is obviously a HUGE dose- I thought my dose was high at @ 66 grams -no I am not going to say how many kilos we are looking at ;-) every 3 weeks ! I will have to do some research on the kidney risks I suppose- I have some other complicating diagnoses as do my sons. The info is very much appreciated thank you ! Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 that dosing isn't every 3 weeks though. Usually what happens is that you get that dose, two or three days in a row in an inpatient setting. With it comes the kidney failure risk, side effect risks and the possibility of it not working at all. Usually it is done for a series of 3 stays and then not done again. you are basically shocking the system into a normal state. Unlike the supplementing you do with IVIG to replace or replenish a PID patient. Autoimmune dosing is not meant to be a treatment but a cure. Definitely not long term either. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Lori W <clwild1@...> Sent: Sun, May 30, 2010 3:38:38 PM Subject: Re: Interesting Ursula- Thank you again for the info- I am very interested in the dosing info- for more than treating PANDAS too. I also have CVID (as do 2 of my kids) and a lot of autoimmune diagnoses. 1 gm per kilo per day is obviously a HUGE dose- I thought my dose was high at @ 66 grams -no I am not going to say how many kilos we are looking at ;-) every 3 weeks ! I will have to do some research on the kidney risks I suppose- I have some other complicating diagnoses as do my sons. The info is very much appreciated thank you ! Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > > > My son was diagnosed with PANDAS in 2006, at a study done of Pediatric OCD patients, at the University of Florida......his OCD is severe at times. He also has CVID and receives IVIG....I can tell you, from my experience, that the IVIG has done nothing for his OCD...I wish it would, maybe it helps some kids, but not mine. Sue > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 oh, ok that makes sense it is a super high dose for a few days in a row on a few separate occasions then ? I wonder if you have PID and autoimmune dxs if they would do both ?? Thanks again for the info :-) Lori lucky mom blessed with triplets > > that dosing isn't every 3 weeks though. Usually what happens is that you get that dose, two or three days in a row in an inpatient setting. With it comes the kidney failure risk, side effect risks and the possibility of it not working at all. Usually it is done for a series of 3 stays and then not done again. you are basically shocking the system into a normal state. Unlike the supplementing you do with IVIG to replace or replenish a PID patient. Autoimmune dosing is not meant to be a treatment but a cure. Definitely not long term either. > Ursula > Mom to (17) and Macey (14) > Macey's Caringbridge site > > Macey's Blog > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2010 Report Share Posted May 30, 2010 oh, ok that makes sense it is a super high dose for a few days in a row on a few separate occasions then ? I wonder if you have PID and autoimmune dxs if they would do both ?? Thanks again for the info :-) Lori lucky mom blessed with triplets > > that dosing isn't every 3 weeks though. Usually what happens is that you get that dose, two or three days in a row in an inpatient setting. With it comes the kidney failure risk, side effect risks and the possibility of it not working at all. Usually it is done for a series of 3 stays and then not done again. you are basically shocking the system into a normal state. Unlike the supplementing you do with IVIG to replace or replenish a PID patient. Autoimmune dosing is not meant to be a treatment but a cure. Definitely not long term either. > Ursula > Mom to (17) and Macey (14) > Macey's Caringbridge site > > Macey's Blog > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2011 Report Share Posted October 11, 2011 Houston doc: stop taking Vitamin E to treat prostate cancerHOUSTON CHRONICLEIf you’re taking vitamin E because you think it will help treat prostate cancer, Dr. Lee has just one word for you: Stop.Lee, assistant professor and medical director of the integrative medical program at the University of Texas M. D. Cancer Center, said Tuesday’s news that vitamin E could be harmful to men with prostate issues is another in a string of medical missives from a huge study looking at the use of selenium, vitamin E and prostate cancer.The study, dubbed SELECT, began in 2001 and by 2008 it had become clear that the trial would not show that the supplements could curb prostate cancer. In fact, the study has shown that men who took 400 IUs of vitamin E daily had more prostate cancer (76 per 1,000 men) than those who took placebos (65 per 1,000 men).Lee said that men concerned about prostate health or prostate cancer can find all kinds of recommendations on the Internet, but said “there really is no role for vitamin E in prostate cancer prevention or treatment.â€â€œLots of people ask what herbs or supplements to take and many patients are reading things on the Internet or hearing from others about taking supplements,†Lee said of prostate cancer patients. “I don’t believe there are any good supplements or pills out there (for this).â€His best advice is this:Incorporate more soy, flax seed, green tea and lycopene into your diet.Focus on healthy eating through a whole-foods diet.Get regular exercise.Get to a healthy weight and stay there. .." .. Quote Link to comment Share on other sites More sharing options...
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