Guest guest Posted March 26, 1999 Report Share Posted March 26, 1999 Baby-Jack wrote: >I was wondering if anyone has a child with PANDAS. My son is going in for bloodwork next week. We suspect PANDAS because he developed OCD overnight last year after a few bouts of strep. Also, his OCD is exacerbated during illnesses now. > >I find this PANDAS theory to be completely fascinating. What do you all think? > I think it's fascinating too, and I'm excited and hopeful about this research. My 5-year-old experienced several sudden behavioral and personality changes a year ago following scarlet fever, which intensified and lessened over the past months leading up to last December when she woke up with horrific obsessions. She quickly developed more compulsions than I can count. From the first article I read about PANDAS, I recognized my daughter's case and suspected this was what had happened to her. I've had an awful time finding a doctor in my area who even knew about PANDAS and who would agree to either order strep titers for her or prescribe antibiotics to see if they would lessen her OCD symptoms. Her own pediatrician refused to be involved in the treatment of a " psychiatric " problem--even though what I wanted was a blood test and antibiotics. Her first psychiatrist said the blood test was unavailable anywhere he was aware of and in any case PANDAS was experimental. On Tuesday I took my daughter to the University of Florida, they are doing a PANDAS research project there. The UF doctor told me that kids with PANDAS-induced OCD may be the lucky ones, since controlling and limiting what she described as on-going brain damage from antineuronal antibodies produced in response to strep infections can help them avoid the usual poor outcome of such early-onset OCD. I am still woozy from hearing about " on-going brain damage " and " usual poor outcome " and I can only hope that if my daughter has to have OCD, it's strep-linked. My daughter has only been diagnosed for three months and I am constantly amazed at how hard it is to navigate the counselors, therapists, doctors of all types, not to mention all the wildly conflicting treatment advice, to provide good care for her. My ongoing feeling is that one needs an " in " to do this effectively and efficiently . . . Kathy R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2000 Report Share Posted November 4, 2000 In a message dated 11/4/2000 2:43:25 PM Eastern Standard Time, JB66111@... writes: > They assumed when he was a kid that he had heart problems, > they didn't have EKGs and such at the time. Actually he didn't have too > much > damage, luckily. But when he got sick at 64 they couldn't figure out what > was wrong with him until the doctor thought to ask if hed ever had RF. > My mom had RF as a young teen. If she were alive today, she would be 62. She was one of the first pediatric heart catherization patients while being treated at s Hopkins. As poor as her parents were and with all the kids they had, her mom still traveled to Baltimore to get her the best treatment. I think my grandmother also enjoyed getting out of the hills and away from all those kids for awhile . Back then, the miner's insurance (I am a coal miners granddaughter) paid for cab fair, meals, etc..even for her mother. She was told never to have children or labor would put too much strain on her heart. She had 4 girls and was doing pretty well until she was 53. She had a series of infections, mostly sinuses, ear, URI's. After doing the doctor shuffle, Tim called her cardiologist (who he use to fly with) and insisted he see her. Turns out those are signs the heart is weakening. She had to have valve replacements which worked for 8 months. I don't think pencillin was around when she was young. I'm a bit concerned.. has been on amoxicillin since Tuesday and his behaviors are continuing to escalate. I don't think it's touching his problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 i have used YS Bee farms propolis paste, microhydrin, and garlic/clove tea successfully. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi , you wrote: > From Slate Magazine: > > > Last February a happy, confident 8-year-old girl went to bed and woke up the > next morning having turned into someone else... You are amazing, the discoveries you turn up. Thanks so much for your dedication and contributions here. One thing that was very amazing about this particular article and the contentions, discoveries cited therein, was the mention of the use of plasmapheresis. (Actually it is known as TPE, Total Plasma Exchange. Plasmapheresis is the actual act of seperating the plasma from the whole blood.) In any event, what we are looking into is the use of this very same procedure to rid individual's of the possible lingering metabolites of the " dirty " drugs we are dealing with here. (Eg.- LSD) We have found this to be of great help in one individual...Time will tell ~ which drives me even nuttier...because, were we able to do a large study with those who have been shown to have metabolites still in their blood,(expensive procedure just to ascertain that), we would have something very close to a " cure. " GOD, IF WE COULD ONLY GET FUNDING! Watching the news, knowing people are suffering, etc., etc., becomes totally overwhelming for me at times when I know something could conceivable be done. But, since very few will even acknowledge what these drugs can do long after cessation, the bucks just don't come floating our way...The Lord's perfect timing is a very hard " pill " to swallow, indeed.No pun intended! Best ~ Collissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi , you wrote: > From Slate Magazine: > > > Last February a happy, confident 8-year-old girl went to bed and woke up the > next morning having turned into someone else... You are amazing, the discoveries you turn up. Thanks so much for your dedication and contributions here. One thing that was very amazing about this particular article and the contentions, discoveries cited therein, was the mention of the use of plasmapheresis. (Actually it is known as TPE, Total Plasma Exchange. Plasmapheresis is the actual act of seperating the plasma from the whole blood.) In any event, what we are looking into is the use of this very same procedure to rid individual's of the possible lingering metabolites of the " dirty " drugs we are dealing with here. (Eg.- LSD) We have found this to be of great help in one individual...Time will tell ~ which drives me even nuttier...because, were we able to do a large study with those who have been shown to have metabolites still in their blood,(expensive procedure just to ascertain that), we would have something very close to a " cure. " GOD, IF WE COULD ONLY GET FUNDING! Watching the news, knowing people are suffering, etc., etc., becomes totally overwhelming for me at times when I know something could conceivable be done. But, since very few will even acknowledge what these drugs can do long after cessation, the bucks just don't come floating our way...The Lord's perfect timing is a very hard " pill " to swallow, indeed.No pun intended! Best ~ Collissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 I have seen other studies like this, linking cancers, ulcers and diabetis to viruses. Extremely interesting. Suzy >From: " Creel " <ccreel@...> >Reply-SSRI medications ><SSRI medications > >Subject: Strep >Date: Thu, 7 Mar 2002 05:57:46 -0500 > >From Slate Magazine: > > >Last February a happy, confident 8-year-old girl went to bed and woke up >the >next morning having turned into someone else. She came to her mother with a >series of shocking confessions. She said she had licked people's bottoms >and >drunk her own urine. She listed the people to whom she had shown her >private >parts. She asked if this made her a " bad person. " > >The mother was horrified and baffled. She calmed the girl down and sent her >to school. When her mother picked her up, the girl said she had spread her >feces around the school. The mother casually checked with a teacher about >the girl's behavior and was told she was fine. This went on day after day. >The girl said she had blinded her brother with a fork in his eye. She said >she wanted to step in front of a bus. She said she had swear words stuck in >her head. At first the mother suspected sexual abuse, but the daughter said >no one had touched her, and the parents could find no evidence anyone had. >The pediatrician said it sounded like a case of obsessive-compulsive >disorder, a condition of unknown origin, and referred the family to a >psychiatrist. > >Surfing the Web, the mother discovered other cases just like her >daughter's: >normal kids who suddenly become consumed by horrible thoughts or, in some >cases, begin twitching uncontrollably. Doctors at the National Institutes >of >Health had a startling suspect: strep throat, one of the most common >illnesses of childhood. Two months before the girl's transformation, she >had >come down with strep throat four times. > >Virtually all elementary-school-age children will get a sore throat, often >many sore throats, caused by the Group A streptococcus bacterium, and the >overwhelming majority will recover uneventfully. Many will get better >without even seeing a doctor and getting antibiotics, the standard >treatment. But there is growing evidence that a range of neurological >disorders from temporary tics, such as eye-blinking and head-scratching, to >full-blown OCD and Tourette's syndrome are linked to the bacteria. The >scientists who connected these neurological maladies to strep throat named >the condition pediatric autoimmune neuropsychiatric disorders associated >with streptococcal infections, or PANDAS. Some scientists even believe that >strep throat might be a factor in some cases of anorexia nervosa. > >It is estimated that about 2 percent of the population suffers from OCD >and/or tics, which are diagnosed on the basis of behavior, making the >conditions more common than schizophrenia and manic-depression. But many >believe the incidence is likely far higher. No one knows the cause, and not >even researchers in the field know to what degree strep might turn out to >play a role in these cases. > >That infections can trigger common mental illnesses is not a new idea. It >is >a very old one, discredited for most of the 20th century. In the middle of >that century the cause for such disorders as schizophrenia, >manic-depression, Tourette's syndrome, and OCD was believed to be bad >parents. One theory was that OCD was the result of punitive toilet >training. >Toward the end of the century, the blame shifted to bad genes. That idea, >which is still the most widely held in the scientific community, is that >the >unfortunate few inherit a bad gene or genes that, in the case of >schizophrenia, make people hear voices or, in the case of OCD, have >obsessive thoughts. Yet, despite many seemingly promising leads, no one has >been able to identify this blighted DNA. > >But what if the problem isn't bad genes but bad germs? Researchers are >making the connection between OCD and tics with evidence of an infectious >assault to the brain. For example, brain scans of children with PANDAS show >that they have an inflammation in the basal ganglia, a portion of the brain >that acts as a sort of gatekeeper for behavior and movement. It is the same >inflammation seen in a rare neurological condition that arises from >rheumatic fever, a disease caused by strep. > >Scientists at both Brown Medical School and Yale University School of >Medicine have infused rats with the blood serum of patients with Tourette's >and/or OCD. How it affected the rats' thoughts is unknown, but the infused >rodents exhibited the tics and grunts stereotypical of Tourette's. And, as >just reported in the Journal of the American Medical Association, >researchers at the University of Rochester Medical Center identified a >small >group of children when they first exhibited signs of OCD and tics and >eliminated the symptoms with early antibiotic treatment. > >The researchers themselves warn that these studies, while intriguing, don't >prove the infection connection and that each step forward raises more >questions. For instance, treatments that have been effective in the newly >diagnosed have been failures in people with chronic cases. Is that because >strep is responsible for only a small portion of these neurological >illnesses? If so, what causes the rest? Or could chronic cases be linked to >strep, but the available treatments are only effective when the brain is >newly under assault? > > Ewald, a professor of biology at Amherst College, is a leading >theorist >of the germs-not-genes movement (read a full explanation of his theories >here). But if bad genes aren't responsible, why do disorders such as >OCD/Tourette's/tics run in families? Ewald says there is a place for >genetics in the theory. He posits that genes determine how an individual's >immune system reacts-or overreacts-to any given infection. So, if that's >the >case, in the end what's the difference? Either some of us inherit a gene >that makes us crazy, or some of us inherit a gene that makes us crazy >because we got a certain infection. One crucial difference is if the cause >is infection, there's the possibility of prevention or cure (for now, genes >can't be fixed). Ewald says, for example, that the discovery of penicillin >is the " biggest success story in all of psychiatry " because it ended one of >the most common mental illnesses, syphilitic insanity. > >For germ-theory proponents, the case that strep throat can cause a variety >of mental disorders otherwise believed to be either psychological or >genetic >in origin is tantalizing. And a model for how that might happen already >exists. > >In the early 1990s, Dr. Swedo, a senior investigator at NIH, was >hoping to better understand OCD by studying a rare and ancient malady when >a >chance remark by a patient's mother led to the description of PANDAS. Swedo >was looking at Sydenham's chorea, known in the Middle Ages as St. Vitus' >dance, a disorder that causes facial grimacing and flailing limbs. >Sydenham's occurs as a result of rheumatic fever, an autoimmune reaction to >untreated strep throat that can cause inflammation of the heart. It was >once >the major killer of young children in the United States. But since the use >of penicillin to treat strep throat became widespread in the 1940s, >rheumatic fever incidence has declined dramatically. What intrigued Swedo >about Sydenham's is that before the onset of physical symptoms, the young >victims often experience OCD. > >About 25 years ago, researchers discovered the likely neurological basis of >Sydenham's. When we contract strep, our immune system recognizes the >invading proteins on the outside of the bacteria, the antigens, and creates >antibodies that attach themselves to the invader. That sends a signal to >our >white blood cells to kill the trespasser. But in an unfortunate quirk of >nature known as " molecular mimicry, " proteins in the human heart closely >resemble strep antigens. In vulnerable individuals, the immune system, >instead of stopping when the strep is vanquished, continues on an >autoimmune >rampage against its own heart. In the case of Sydenham's, the molecular >mimicry, and the damage, is found in the neurons of the basal ganglia of >the >brain. > >Swedo was evaluating a boy thought to have Sydenham's. He didn't, but he >did >have OCD and tics, and because these things often run in families, Swedo >was >not surprised to find that his older brother had Tourette's syndrome. As >Swedo was talking to the boys' mother, the woman mentioned that it had >become a family joke that whenever her kids' tics got worse, it was time to >take them in for a throat culture because an increase in tics inevitably >meant a strep throat. > >It clicked. Swedo theorized that Sydenham's could just be one manifestation >of neurological damage due to strep. Perhaps there were children who never >got rheumatic fever or Sydenham's but who got OCD or tics directly as a >result of an unremarkable sore throat. If that was the case, it meant there >might be something they could do to cure it. Antibiotics were not the >answer >for the patients Swedo saw. Because it was so long between the onset of >symptoms and her patients' arrival at NIH, the initial strep infection had >cleared up. What was needed was a way to stop the autoimmune damage >occurring in the brain. > >So Swedo and her colleagues used a procedure called plasma exchange or >plasmapheresis. It's like a high-tech bloodletting. She performed a series >of five on each patient-the patient's blood was removed, and the fluid >part, >the plasma, where the antibodies are found, was discarded and replaced. > >Swedo's initial study was much too small to be considered definitive. In >all, she has treated only about 30 children with the most devastating >cases. >But the results are striking. Last April, two months after the onset of her >symptoms, the 8-year-old girl was admitted to NIH for a two-week course of >plasma exchange. During her first three days in the hospital, she was >unable >to eat because of the extreme distress of seeing other sick people; she was >convinced she had made all of them ill. By the third plasma exchange, the >girl was less fraught with worry. By the fifth, she was almost herself >again. Within a week of returning home she was completely better. Over the >course of the plasma exchange study, 80 percent of the children receiving >it >maintained a remarkable improvement in their symptoms a year later. > >Will there be other neurological disorders linked to strep infection? Dr. >Mae Sokol, a specialist in eating disorders at Children's Hospital in >Omaha, >Neb., believes some of her patients with anorexia nervosa had >strep-triggered onset. Like the PANDAS patients, they tend to be preteens, >and their parents can usually pinpoint exactly when, even to the day, the >obsession with food began, usually within a few weeks of a strep infection. >One 10-year-old patient, after an inadequately treated strep infection, >became consumed with the idea that she couldn't swallow solid food. As she >began losing weight, she liked the result. Six months and 30 pounds after >the onset of her symptoms, she was referred to Sokol. At that time, the >girl >had a sinus infection, and Sokol treated her with a high dose of >antibiotics. The girl began eating two days later. Sokol says there is a >possible physiological explanation for such cases: The part of the brain >thought to be responsible for body image is close to the basal ganglia, >which is inflamed in children with PANDAS. > >Could other infections trigger PANDAS-like symptoms? Dr. Louise Kiessling, >a >professor at Brown Medical School, says there is some evidence Lyme disease >can provoke similar behaviors. And once the immune system is primed to >overreact, other invaders besides strep can set off the process. For >example, says Kiessling, children with Sydenham's have had recurrences of >writhing after infection with the chicken pox virus or bacteria called >Haemophilus influenzae. > >While the connection between strep and neurological disorders is >intriguing, >it is far from proved. Research to find out to what degree strep is >responsible for what percentage of OCD and tic disorders is continuing on >everything from the chemical level to the epidemiological one. Researchers >are trying to find out if there is a molecule produced in the brain unique >to PANDAS patients. They are also following large groups of children to see >if they can better correlate strep throat and subsequent behavior >disorders. >And if the work on a strep vaccine is successful, widespread inoculation >could result in a dramatic decline of OCD and tics. (The doctors involved >in >the research all warn against rampant use of antibiotics, which is more >likely to cause dangerous antibiotic resistance than prevent PANDAS.) > >For now, Swedo doesn't have much better advice than teaching children about >washing their hands and not sharing drinking glasses, and for parents of >children who have shown neurological symptoms following strep, even minor >ones such as eye-blinking, to be vigilant about sore throats. As the mother >of the 8-year old says, " I can't let her get strep. " > > _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 I have seen other studies like this, linking cancers, ulcers and diabetis to viruses. Extremely interesting. Suzy >From: " Creel " <ccreel@...> >Reply-SSRI medications ><SSRI medications > >Subject: Strep >Date: Thu, 7 Mar 2002 05:57:46 -0500 > >From Slate Magazine: > > >Last February a happy, confident 8-year-old girl went to bed and woke up >the >next morning having turned into someone else. She came to her mother with a >series of shocking confessions. She said she had licked people's bottoms >and >drunk her own urine. She listed the people to whom she had shown her >private >parts. She asked if this made her a " bad person. " > >The mother was horrified and baffled. She calmed the girl down and sent her >to school. When her mother picked her up, the girl said she had spread her >feces around the school. The mother casually checked with a teacher about >the girl's behavior and was told she was fine. This went on day after day. >The girl said she had blinded her brother with a fork in his eye. She said >she wanted to step in front of a bus. She said she had swear words stuck in >her head. At first the mother suspected sexual abuse, but the daughter said >no one had touched her, and the parents could find no evidence anyone had. >The pediatrician said it sounded like a case of obsessive-compulsive >disorder, a condition of unknown origin, and referred the family to a >psychiatrist. > >Surfing the Web, the mother discovered other cases just like her >daughter's: >normal kids who suddenly become consumed by horrible thoughts or, in some >cases, begin twitching uncontrollably. Doctors at the National Institutes >of >Health had a startling suspect: strep throat, one of the most common >illnesses of childhood. Two months before the girl's transformation, she >had >come down with strep throat four times. > >Virtually all elementary-school-age children will get a sore throat, often >many sore throats, caused by the Group A streptococcus bacterium, and the >overwhelming majority will recover uneventfully. Many will get better >without even seeing a doctor and getting antibiotics, the standard >treatment. But there is growing evidence that a range of neurological >disorders from temporary tics, such as eye-blinking and head-scratching, to >full-blown OCD and Tourette's syndrome are linked to the bacteria. The >scientists who connected these neurological maladies to strep throat named >the condition pediatric autoimmune neuropsychiatric disorders associated >with streptococcal infections, or PANDAS. Some scientists even believe that >strep throat might be a factor in some cases of anorexia nervosa. > >It is estimated that about 2 percent of the population suffers from OCD >and/or tics, which are diagnosed on the basis of behavior, making the >conditions more common than schizophrenia and manic-depression. But many >believe the incidence is likely far higher. No one knows the cause, and not >even researchers in the field know to what degree strep might turn out to >play a role in these cases. > >That infections can trigger common mental illnesses is not a new idea. It >is >a very old one, discredited for most of the 20th century. In the middle of >that century the cause for such disorders as schizophrenia, >manic-depression, Tourette's syndrome, and OCD was believed to be bad >parents. One theory was that OCD was the result of punitive toilet >training. >Toward the end of the century, the blame shifted to bad genes. That idea, >which is still the most widely held in the scientific community, is that >the >unfortunate few inherit a bad gene or genes that, in the case of >schizophrenia, make people hear voices or, in the case of OCD, have >obsessive thoughts. Yet, despite many seemingly promising leads, no one has >been able to identify this blighted DNA. > >But what if the problem isn't bad genes but bad germs? Researchers are >making the connection between OCD and tics with evidence of an infectious >assault to the brain. For example, brain scans of children with PANDAS show >that they have an inflammation in the basal ganglia, a portion of the brain >that acts as a sort of gatekeeper for behavior and movement. It is the same >inflammation seen in a rare neurological condition that arises from >rheumatic fever, a disease caused by strep. > >Scientists at both Brown Medical School and Yale University School of >Medicine have infused rats with the blood serum of patients with Tourette's >and/or OCD. How it affected the rats' thoughts is unknown, but the infused >rodents exhibited the tics and grunts stereotypical of Tourette's. And, as >just reported in the Journal of the American Medical Association, >researchers at the University of Rochester Medical Center identified a >small >group of children when they first exhibited signs of OCD and tics and >eliminated the symptoms with early antibiotic treatment. > >The researchers themselves warn that these studies, while intriguing, don't >prove the infection connection and that each step forward raises more >questions. For instance, treatments that have been effective in the newly >diagnosed have been failures in people with chronic cases. Is that because >strep is responsible for only a small portion of these neurological >illnesses? If so, what causes the rest? Or could chronic cases be linked to >strep, but the available treatments are only effective when the brain is >newly under assault? > > Ewald, a professor of biology at Amherst College, is a leading >theorist >of the germs-not-genes movement (read a full explanation of his theories >here). But if bad genes aren't responsible, why do disorders such as >OCD/Tourette's/tics run in families? Ewald says there is a place for >genetics in the theory. He posits that genes determine how an individual's >immune system reacts-or overreacts-to any given infection. So, if that's >the >case, in the end what's the difference? Either some of us inherit a gene >that makes us crazy, or some of us inherit a gene that makes us crazy >because we got a certain infection. One crucial difference is if the cause >is infection, there's the possibility of prevention or cure (for now, genes >can't be fixed). Ewald says, for example, that the discovery of penicillin >is the " biggest success story in all of psychiatry " because it ended one of >the most common mental illnesses, syphilitic insanity. > >For germ-theory proponents, the case that strep throat can cause a variety >of mental disorders otherwise believed to be either psychological or >genetic >in origin is tantalizing. And a model for how that might happen already >exists. > >In the early 1990s, Dr. Swedo, a senior investigator at NIH, was >hoping to better understand OCD by studying a rare and ancient malady when >a >chance remark by a patient's mother led to the description of PANDAS. Swedo >was looking at Sydenham's chorea, known in the Middle Ages as St. Vitus' >dance, a disorder that causes facial grimacing and flailing limbs. >Sydenham's occurs as a result of rheumatic fever, an autoimmune reaction to >untreated strep throat that can cause inflammation of the heart. It was >once >the major killer of young children in the United States. But since the use >of penicillin to treat strep throat became widespread in the 1940s, >rheumatic fever incidence has declined dramatically. What intrigued Swedo >about Sydenham's is that before the onset of physical symptoms, the young >victims often experience OCD. > >About 25 years ago, researchers discovered the likely neurological basis of >Sydenham's. When we contract strep, our immune system recognizes the >invading proteins on the outside of the bacteria, the antigens, and creates >antibodies that attach themselves to the invader. That sends a signal to >our >white blood cells to kill the trespasser. But in an unfortunate quirk of >nature known as " molecular mimicry, " proteins in the human heart closely >resemble strep antigens. In vulnerable individuals, the immune system, >instead of stopping when the strep is vanquished, continues on an >autoimmune >rampage against its own heart. In the case of Sydenham's, the molecular >mimicry, and the damage, is found in the neurons of the basal ganglia of >the >brain. > >Swedo was evaluating a boy thought to have Sydenham's. He didn't, but he >did >have OCD and tics, and because these things often run in families, Swedo >was >not surprised to find that his older brother had Tourette's syndrome. As >Swedo was talking to the boys' mother, the woman mentioned that it had >become a family joke that whenever her kids' tics got worse, it was time to >take them in for a throat culture because an increase in tics inevitably >meant a strep throat. > >It clicked. Swedo theorized that Sydenham's could just be one manifestation >of neurological damage due to strep. Perhaps there were children who never >got rheumatic fever or Sydenham's but who got OCD or tics directly as a >result of an unremarkable sore throat. If that was the case, it meant there >might be something they could do to cure it. Antibiotics were not the >answer >for the patients Swedo saw. Because it was so long between the onset of >symptoms and her patients' arrival at NIH, the initial strep infection had >cleared up. What was needed was a way to stop the autoimmune damage >occurring in the brain. > >So Swedo and her colleagues used a procedure called plasma exchange or >plasmapheresis. It's like a high-tech bloodletting. She performed a series >of five on each patient-the patient's blood was removed, and the fluid >part, >the plasma, where the antibodies are found, was discarded and replaced. > >Swedo's initial study was much too small to be considered definitive. In >all, she has treated only about 30 children with the most devastating >cases. >But the results are striking. Last April, two months after the onset of her >symptoms, the 8-year-old girl was admitted to NIH for a two-week course of >plasma exchange. During her first three days in the hospital, she was >unable >to eat because of the extreme distress of seeing other sick people; she was >convinced she had made all of them ill. By the third plasma exchange, the >girl was less fraught with worry. By the fifth, she was almost herself >again. Within a week of returning home she was completely better. Over the >course of the plasma exchange study, 80 percent of the children receiving >it >maintained a remarkable improvement in their symptoms a year later. > >Will there be other neurological disorders linked to strep infection? Dr. >Mae Sokol, a specialist in eating disorders at Children's Hospital in >Omaha, >Neb., believes some of her patients with anorexia nervosa had >strep-triggered onset. Like the PANDAS patients, they tend to be preteens, >and their parents can usually pinpoint exactly when, even to the day, the >obsession with food began, usually within a few weeks of a strep infection. >One 10-year-old patient, after an inadequately treated strep infection, >became consumed with the idea that she couldn't swallow solid food. As she >began losing weight, she liked the result. Six months and 30 pounds after >the onset of her symptoms, she was referred to Sokol. At that time, the >girl >had a sinus infection, and Sokol treated her with a high dose of >antibiotics. The girl began eating two days later. Sokol says there is a >possible physiological explanation for such cases: The part of the brain >thought to be responsible for body image is close to the basal ganglia, >which is inflamed in children with PANDAS. > >Could other infections trigger PANDAS-like symptoms? Dr. Louise Kiessling, >a >professor at Brown Medical School, says there is some evidence Lyme disease >can provoke similar behaviors. And once the immune system is primed to >overreact, other invaders besides strep can set off the process. For >example, says Kiessling, children with Sydenham's have had recurrences of >writhing after infection with the chicken pox virus or bacteria called >Haemophilus influenzae. > >While the connection between strep and neurological disorders is >intriguing, >it is far from proved. Research to find out to what degree strep is >responsible for what percentage of OCD and tic disorders is continuing on >everything from the chemical level to the epidemiological one. Researchers >are trying to find out if there is a molecule produced in the brain unique >to PANDAS patients. They are also following large groups of children to see >if they can better correlate strep throat and subsequent behavior >disorders. >And if the work on a strep vaccine is successful, widespread inoculation >could result in a dramatic decline of OCD and tics. (The doctors involved >in >the research all warn against rampant use of antibiotics, which is more >likely to cause dangerous antibiotic resistance than prevent PANDAS.) > >For now, Swedo doesn't have much better advice than teaching children about >washing their hands and not sharing drinking glasses, and for parents of >children who have shown neurological symptoms following strep, even minor >ones such as eye-blinking, to be vigilant about sore throats. As the mother >of the 8-year old says, " I can't let her get strep. " > > _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Matt wrote: >At the very best it is just a guess on the doctor's part based on the information you give them. It is impossible to avoid >all triggers. Very true Matt. Connie (granny) thanks for the info on Chlamydia. This mess of a disease can lay dormant for a while, even if it has been triggered. If any of you have read Norman Cousin's book " Anatomy of an Illness " , you will see that he attributed it to a flu like infection he caught while in Moscow. He did not concern himself with the where's, how's, and what for's but did focus on the disease and treatments available at the time. He also educated himself on AS and was one of the first " informed " patients. +Dave --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 04/08/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 In a message dated 6/22/2005 4:14:23 P.M. Eastern Daylight Time, ercokat@... writes: has strep for the first time, and guess what? We're leaving on vacation this Friday! Argh!!!! Perfect timing huh?? So sorry to hear that!! Always something! Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 In a message dated 3/1/2006 12:01:07 PM Pacific Standard Time, rionfam@... writes: Anyone know if there are any " warning signs " I should look for or complications that could arise from strep? If she is not a lot better by tomorrow I think I am going to take her to her hematologist to be on the safe side. Becki-- If her temp isn't down and she is still listless, take her in. The Amoxicillan may not be working well enough to get rid of the infection. When Bri used to get strep chronically, it would knock him off his feet for a few days. Nothing else did this, but strep. I hope she's feeling better!! Sandi, Mom to --age 13--CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 My 4 year old - Non PID - Came down with Strep also on Sunday and yesterday I took him to the doctor because he had a rash over his entire body. The doc said it was scarlet fever caused by the Strep infection and there is a chance that he'd pee blood. It would look like coke. (Thank God that has not happened) - I was worried about my 2 year old with PID (t cell lymphopenia) and he said that my 2 year old should be fine as he is protected because of prophalactic antibiotics. So.... Rash - it is pink to red and some pitichie (sp??) - red spots .........Urinating blood which is old blood so it looks like coca cola .........Make sure that she finnishes all antibiotics as Strep is a cause of some heart problems Hope this helps Kim Becki Rion <rionfam@...> wrote: My 8 year old came down with Strep on Sunday and now Reagon has it for the first time. I took her to the pedi. clinic and they put her on Amoxicyllin last night. She has had 2 doses now and seems to be doing a little better, but keeps " crashing " every now and then escpecially when the Motrin wears off and her fever kicks back in. I am nervous with her being off of IVIG. Anyone know if there are any " warning signs " I should look for or complications that could arise from strep? If she is not a lot better by tomorrow I think I am going to take her to her hematologist to be on the safe side. Becki Reagon (4yrs.) CVID, asthma, allergies This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 > .........Urinating blood which is old blood so it looks like coca cola I have experieinced this with my now 10yo son when he was 3. It can look light pink after he urinates and leaves a pinkish drop on the seat, rim. When I finally saw THAT, I called the dr. Before that, I wondered who in the heck was dumping pop on the tiolet seat (like 2 days!). When it dries is when it looks like coke or tea. We never did find out the cause to that one. Meg, mom to , 10, asthma, allergies , 10, asthma, allergies Annie, 7, asthma, allergies, and pneumo titers picked up after prevnar, so maybe that's it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Kim, Thanks for the info.!. I guess it's the time of year for strep because it is running rampid around here. Every other person I talk to has a child sick with it or just getting over it! I had Scarlet Fever when I was in 5th grade and believe me...it is not fun! I really feel for your 4 year old. My sister caught it from me and she ended up with a heart murmur. I'm sure you know this, but be sure to leave looooots of liquids by his bed at night. I just remember waking up at night and being MISERABLE I'd be so thirsty and too sick & weak to get up. And to make matters worse my throat would hurt so bad I couldn't even call out for anyone to get me anything . I also know it's important to drink alot of water to keep your kidney's flushed. I'd wake up at night with my throat and kidneys killing me. I remember my mom making me stay in bed for several days afterwards too...something about kidney damage?? She swears her cousin got kidney damage from not getting enough rest when he was getting over scarlet fever. Good luck!! Becki Re: Strep My 4 year old - Non PID - Came down with Strep also on Sunday and yesterday I took him to the doctor because he had a rash over his entire body. The doc said it was scarlet fever caused by the Strep infection and there is a chance that he'd pee blood. It would look like coke. (Thank God that has not happened) - I was worried about my 2 year old with PID (t cell lymphopenia) and he said that my 2 year old should be fine as he is protected because of prophalactic antibiotics. So.... Rash - it is pink to red and some pitichie (sp??) - red spots .........Urinating blood which is old blood so it looks like coca cola .........Make sure that she finnishes all antibiotics as Strep is a cause of some heart problems Hope this helps Kim Becki Rion <rionfam@...> wrote: My 8 year old came down with Strep on Sunday and now Reagon has it for the first time. I took her to the pedi. clinic and they put her on Amoxicyllin last night. She has had 2 doses now and seems to be doing a little better, but keeps " crashing " every now and then escpecially when the Motrin wears off and her fever kicks back in. I am nervous with her being off of IVIG. Anyone know if there are any " warning signs " I should look for or complications that could arise from strep? If she is not a lot better by tomorrow I think I am going to take her to her hematologist to be on the safe side. Becki Reagon (4yrs.) CVID, asthma, allergies This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Sandi, What anitbiotic worked with ? She doesn't seem to be responding to the Amoxicyllin at all. We are into our 3rd day of antibiotics and she is still running 101-102 fever and vomiting. I also think her asthma is kicking in full force. Ugh!! I was thinking maybe she would respond better to Zithromax? Becki ---- Original Message ----- From: sassykay59@... Sent: Wednesday, March 01, 2006 7:53 PM Subject: Re: Strep In a message dated 3/1/2006 12:01:07 PM Pacific Standard Time, rionfam@... writes: Anyone know if there are any " warning signs " I should look for or complications that could arise from strep? If she is not a lot better by tomorrow I think I am going to take her to her hematologist to be on the safe side. Becki-- If her temp isn't down and she is still listless, take her in. The Amoxicillan may not be working well enough to get rid of the infection. When Bri used to get strep chronically, it would knock him off his feet for a few days. Nothing else did this, but strep. I hope she's feeling better!! Sandi, Mom to --age 13--CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Becki - did they send the rapid swab for culture? If they did then they should have a sensitivity report back by now that would tell them which antibiotics are best to use. Ursula - mom to Macey (10,CVID) and (13) http://members.cox.net/maceyh Immune Deficiency Foundation http://www.primaryimmune.org Pediatric PID email list Modell Foundation http://jmfworld.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 My kids present strep with mild sore throat and no fever. My son (non-PID) had a sore throat with cold symptoms so I didn't take him....by the end of the week, I said, OK, lets go....STREP. I can't win no matter what. If it is a PID kid, better to be safe. Kim, Mom to 9 - CVID Strep > My kids seem to always present with what I call " hot potato voice " -you > know that voice you get when you take a bite of a really hot baked potato > and then try to talk?! > > I have had one of those weeks-Maddie my pid-spiked a 102 fever on > Sunday-that was while we were already on 2000 mg of Augmentin a day-so off > to the ER-no pneumonia-so on Monday all the docs consulted and decided her > antibiotic needed changed-you think? One day of omnicef and she was > already 75% better! > > Then on Wednesday--my non pid healthy as a horse long distance > runner-came home from track-laid down on the floor saying she did not feel > good. Took her temp-about 100-but she still had on a full layer of > under-armour, tshirt and sweats. I told her to get her jammies on take > some naproxen and go to bed. She woke me at 5 am saying something was not > right-took her temp again-it was 105! I freaked out-went to eh ped first > thing-viral-strep culture was negative. They sent us home to try and rest > and hydrate-she woke up two hours later not able to move her neck and > screaming about the light hurting her eyes-so off to the er for more > tests-and yes the dreaded spinal tap-which Thank God was negative-but I > was stuck with this terribly ill child-her bp dropped to 58/16 while we > were there-and her fever was still 104-and pain so bad morphine did not > even help. They sent us home-all hydrated and hoping she could rest-she > even told the doc she thought she was dying. > > So here we are on Sat-still running a fever-bloody mucous and another call > to the doc-go in and sinus infection now on top of influenza. So we > shipped her back to Grandma's=so I can clean her room and keep her away > from Maddie. She is miserable-and think she will never be well again-she > is upset-she was supposed to run the Indy 500 Mini-Marathon next > weekend-which she has been training for since September of last year! > > Well-thanks for letting me vent! > > Becky in IN-mom to Maddie, age 19-IgA def, low IgG, gerd, asthma, > constipation, mild cp....and the wonder athlete-that is so sick-and > making her pid sister laugh at how much of a baby she is about blood > tests! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Dear Edith, I am sure they are directly related. Ear insufflation will take of both problems. Best of Health! Dr. Saul Pressman strep > > > I have a friend with a 12 yr old daughter. She has strep throat a lot. > She also has sinus/adnoid problems. Do you think the 2 are related? > And if so, would ear insufflations be a treatment for that? > > Edith > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 SINCE *MOST OR ALOT OF US DON'T HAVE THE MEANS TO DO INSUFFLATIONS, * *I'VE FOUND THAT GARGLING WITH THE FOOD GRADE PEROXIDE...OF COURSE DILUTED * *TO 1% OR SOME LIKE 3%, I PREFER LESS. * ** *RHEUMATIC FEVER RAN IN MY ANCESTRY, AND IT WAS CAUSED BY A STREP GERM... THEN * *THERE WOULD ALSO BE THE SCAR IN HEART AFTER BAD STREP. MY MOTHER HAD SAID* *THAT SOME PEOPLE COULD BE CARRIERS OF THE GERM, AND NOT ALL WOULD SEEM SICK.* ** *HER SISTER DIED FROM COMPLICATIONS AFTER THE FEVER....AND MY MOTHER NEVER FULLY RECOVERED FROM THEM BOTH...THOUGH SHE HAD 5 CHILDREN AFTER...BEFORE DEVELOPING NEPHRITIS AND HEART TROUBLE. FIRST WAS IN THE 30'S AND MOM HAD STREP IN THE 50'S* ** ** On 8/16/06, Saul Pressman <saul@...> wrote: > > Dear Edith, > > I am sure they are directly related. > > Ear insufflation will take of both problems. > > Best of Health! > Dr. Saul Pressman > > > strep > > > > > > > I have a friend with a 12 yr old daughter. She has strep throat a lot. > > She also has sinus/adnoid problems. Do you think the 2 are related? > > And if so, would ear insufflations be a treatment for that? > > > > Edith > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Dear lie, Please unlock your caps lock. No one enjoys being SHOUTED AT. Best of Health! Dr. Saul Pressman strep > > > > > > > > > > > I have a friend with a 12 yr old daughter. She has strep throat a lot. > > > She also has sinus/adnoid problems. Do you think the 2 are related? > > > And if so, would ear insufflations be a treatment for that? > > > > > > Edith > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 sorry...using laptop and regular type looked so small.... i don't want to shout at anyone. excuse my typo's too. i am caring for a couple grandchildren, and trying to read my e-mail! Thanks.rosalie On 8/16/06, Saul Pressman <saul@...> wrote: > > Dear lie, > > Please unlock your caps lock. > No one enjoys being SHOUTED AT. > > > Best of Health! > Dr. Saul Pressman > > strep > > > > > > > > > > > > > > > I have a friend with a 12 yr old daughter. She has strep throat a > lot. > > > > She also has sinus/adnoid problems. Do you think the 2 are related? > > > > And if so, would ear insufflations be a treatment for that? > > > > > > > > Edith > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2006 Report Share Posted August 16, 2006 Do her words come across as shouting? Maybe she is partially blind, or deaf...I can see it better. :-) strep > > > > > > > > > > > I have a friend with a 12 yr old daughter. She has strep throat a lot. > > > She also has sinus/adnoid problems. Do you think the 2 are related? > > > And if so, would ear insufflations be a treatment for that? > > > > > > Edith > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 The daughter of a friend of mine also has repeated strep throats requiring antibiotics several times each winter. This has been going on for a number of years. I told them about grapefruit seed extract and she has gargled with it everyday all winter. She has not had one strep infection this year. As a side note, this young woman had a radical mastectomy for cancer at age 20. Some alternative thinking folks I know think there is a direct link to breast cancer and carrying strep. Doesn't prove anything, Just an observation. Arrow In oxyplus , ejohns9525@... wrote: > > > > I have a friend with a 12 yr old daughter. She has strep throat a lot. > She also has sinus/adnoid problems. Do you think the 2 are related? > And if so, would ear insufflations be a treatment for that? > > Edith > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 The daughter of a friend of mine also has repeated strep throats requiring antibiotics several times each winter. This has been going on for a number of years. I told them about grapefruit seed extract and she has gargled with it everyday all winter. She has not had one strep infection this year. As a side note, this young woman had a radical mastectomy for cancer at age 20. Some alternative thinking folks I know think there is a direct link to breast cancer and carrying strep. Doesn't prove anything, Just an observation. Arrow In oxyplus , ejohns9525@... wrote: > > > > I have a friend with a 12 yr old daughter. She has strep throat a lot. > She also has sinus/adnoid problems. Do you think the 2 are related? > And if so, would ear insufflations be a treatment for that? > > Edith > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Ah, now Saul. Maybe she was just trying to shout in an effort to resurrect the dead. I'm joking, ofcourse. It's just that these lists seem to be moving very slowly lately. Don't know the why of it either. Maybe many are on vacation. Few are contributing anymore (myself included) and have noticed some questions (like Ken's pain in the legs question) are going unanswered. (I'd have answered you, Ken but didn't know the answer.) lie, I actucally think you gave some good information. It is true that strep left untreated can cause heart damage. If one can't afford a generator to insufflate and the pezodixe works, that's a really good thing to know. Looks like your family had to learn the hard way, but what better way to testify than those that have experienced it. Sorry to hear of the damage you and yours incurred from the strep. Thanks for sharing. Gail > > Dear lie, > > Please unlock your caps lock. > No one enjoys being SHOUTED AT. > > Best of Health! > Dr. Saul Pressman > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2006 Report Share Posted August 17, 2006 Ah, now Saul. Maybe she was just trying to shout in an effort to resurrect the dead. I'm joking, ofcourse. It's just that these lists seem to be moving very slowly lately. Don't know the why of it either. Maybe many are on vacation. Few are contributing anymore (myself included) and have noticed some questions (like Ken's pain in the legs question) are going unanswered. (I'd have answered you, Ken but didn't know the answer.) lie, I actucally think you gave some good information. It is true that strep left untreated can cause heart damage. If one can't afford a generator to insufflate and the pezodixe works, that's a really good thing to know. Looks like your family had to learn the hard way, but what better way to testify than those that have experienced it. Sorry to hear of the damage you and yours incurred from the strep. Thanks for sharing. Gail > > Dear lie, > > Please unlock your caps lock. > No one enjoys being SHOUTED AT. > > Best of Health! > Dr. Saul Pressman > > Quote Link to comment Share on other sites More sharing options...
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