Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 We have this book in the TA library x > > Hi all, > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > (it's handy that amazon uk have started showing the us reviews) > also > http://www.savingsammy.net/index.php > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 We have this book in the TA library x > > Hi all, > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > (it's handy that amazon uk have started showing the us reviews) > also > http://www.savingsammy.net/index.php > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2012 Report Share Posted January 13, 2012 We have this book in the TA library x > > Hi all, > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > (it's handy that amazon uk have started showing the us reviews) > also > http://www.savingsammy.net/index.php > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 This is such a good book in its own right but my take on it is: - the antibody theory might be stand alone or just one causal factor in how strep acts in autoimmunity. Research now being done on immune system interaction particularly cytokine involvement. - Sammy was a " typical " child. The problem with OCD and strep is that most of the current research is on NT kids. Frustrating to read of her struggle with antibiotics with Sammy, which led to IVIG treatment (off book for autism in the UK and mercilessly expensive elsewhere when the blood product is available. So although I learned a bit, and its very readable, it turns out to be a bit of a blind alley for a lot of us. She doesn't use any naturals either. I do love Beth and all the work she has done to raise awareness. To add to that, I was speaking to a pandas doctor in NYC and he tells me he is identifying a sub-group of kids who've had the MMR who are coming in with PANDAS symptoms. Some as young as 3. No slouch this guy, he was head of paediatric neurology at Hopkins, and he feels W has been wrongly interpreted and accused, surprise surprise. - Even if you have the money some providers wouldn't even provide IVIG if there is a prior diagnosis of autism. The PANDAS criteria says if there is a prior diagnosis of autism then the person cannot qualify (ridiculous IMHO) - Gamma Strep. I totally 100% agree with Sandy and Tim on this one, when doing research I emailed about 90 pandas parents (mostly) and nearly 50 of them mentioned Gamma Strep, and when I went into it further with them, many said that their practictioners said it wasn't " the kind of strep that went with PANDAS " . Well, a lot of practitioners don't seem to have dug very deep so far! I got the same reply (not from ) from my previous DAN at the Breakspear. I feel it is implicated. After Gamma Strep came up on the OAT, we saw a rash that could easily have been mistaken for yeast, but it wasn't, and we went into our worst phase from there. Sandy how do you think you cleared Gamma strep if you are prepared to share. I really feel this is important it might work for some of us. Much love all Eil x > > Hi all, > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > (it's handy that amazon uk have started showing the us reviews) > also > http://www.savingsammy.net/index.php > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 This is such a good book in its own right but my take on it is: - the antibody theory might be stand alone or just one causal factor in how strep acts in autoimmunity. Research now being done on immune system interaction particularly cytokine involvement. - Sammy was a " typical " child. The problem with OCD and strep is that most of the current research is on NT kids. Frustrating to read of her struggle with antibiotics with Sammy, which led to IVIG treatment (off book for autism in the UK and mercilessly expensive elsewhere when the blood product is available. So although I learned a bit, and its very readable, it turns out to be a bit of a blind alley for a lot of us. She doesn't use any naturals either. I do love Beth and all the work she has done to raise awareness. To add to that, I was speaking to a pandas doctor in NYC and he tells me he is identifying a sub-group of kids who've had the MMR who are coming in with PANDAS symptoms. Some as young as 3. No slouch this guy, he was head of paediatric neurology at Hopkins, and he feels W has been wrongly interpreted and accused, surprise surprise. - Even if you have the money some providers wouldn't even provide IVIG if there is a prior diagnosis of autism. The PANDAS criteria says if there is a prior diagnosis of autism then the person cannot qualify (ridiculous IMHO) - Gamma Strep. I totally 100% agree with Sandy and Tim on this one, when doing research I emailed about 90 pandas parents (mostly) and nearly 50 of them mentioned Gamma Strep, and when I went into it further with them, many said that their practictioners said it wasn't " the kind of strep that went with PANDAS " . Well, a lot of practitioners don't seem to have dug very deep so far! I got the same reply (not from ) from my previous DAN at the Breakspear. I feel it is implicated. After Gamma Strep came up on the OAT, we saw a rash that could easily have been mistaken for yeast, but it wasn't, and we went into our worst phase from there. Sandy how do you think you cleared Gamma strep if you are prepared to share. I really feel this is important it might work for some of us. Much love all Eil x > > Hi all, > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > (it's handy that amazon uk have started showing the us reviews) > also > http://www.savingsammy.net/index.php > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 This is such a good book in its own right but my take on it is: - the antibody theory might be stand alone or just one causal factor in how strep acts in autoimmunity. Research now being done on immune system interaction particularly cytokine involvement. - Sammy was a " typical " child. The problem with OCD and strep is that most of the current research is on NT kids. Frustrating to read of her struggle with antibiotics with Sammy, which led to IVIG treatment (off book for autism in the UK and mercilessly expensive elsewhere when the blood product is available. So although I learned a bit, and its very readable, it turns out to be a bit of a blind alley for a lot of us. She doesn't use any naturals either. I do love Beth and all the work she has done to raise awareness. To add to that, I was speaking to a pandas doctor in NYC and he tells me he is identifying a sub-group of kids who've had the MMR who are coming in with PANDAS symptoms. Some as young as 3. No slouch this guy, he was head of paediatric neurology at Hopkins, and he feels W has been wrongly interpreted and accused, surprise surprise. - Even if you have the money some providers wouldn't even provide IVIG if there is a prior diagnosis of autism. The PANDAS criteria says if there is a prior diagnosis of autism then the person cannot qualify (ridiculous IMHO) - Gamma Strep. I totally 100% agree with Sandy and Tim on this one, when doing research I emailed about 90 pandas parents (mostly) and nearly 50 of them mentioned Gamma Strep, and when I went into it further with them, many said that their practictioners said it wasn't " the kind of strep that went with PANDAS " . Well, a lot of practitioners don't seem to have dug very deep so far! I got the same reply (not from ) from my previous DAN at the Breakspear. I feel it is implicated. After Gamma Strep came up on the OAT, we saw a rash that could easily have been mistaken for yeast, but it wasn't, and we went into our worst phase from there. Sandy how do you think you cleared Gamma strep if you are prepared to share. I really feel this is important it might work for some of us. Much love all Eil x > > Hi all, > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > (it's handy that amazon uk have started showing the us reviews) > also > http://www.savingsammy.net/index.php > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > Best wishes, Sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 Sorry just wanted to add those people I looked up were people with autism and pandas symptoms. NT kids don't have our kinds of tests i.e. OAT test which shows Gamma Strep, they tend to just get titres taken. > > > > Hi all, > > > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > > > (it's handy that amazon uk have started showing the us reviews) > > also > > http://www.savingsammy.net/index.php > > > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > > Best wishes, Sandy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 Sorry just wanted to add those people I looked up were people with autism and pandas symptoms. NT kids don't have our kinds of tests i.e. OAT test which shows Gamma Strep, they tend to just get titres taken. > > > > Hi all, > > > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > > > (it's handy that amazon uk have started showing the us reviews) > > also > > http://www.savingsammy.net/index.php > > > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > > Best wishes, Sandy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 Sorry just wanted to add those people I looked up were people with autism and pandas symptoms. NT kids don't have our kinds of tests i.e. OAT test which shows Gamma Strep, they tend to just get titres taken. > > > > Hi all, > > > > I was reading about PANDAs and came across this book - a mum's story of her son's OCD onset and his recovery. > > http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1\ ?ie=UTF8 & qid=1326051066 & sr=8-1 > > > > (it's handy that amazon uk have started showing the us reviews) > > also > > http://www.savingsammy.net/index.php > > > > I've not found info about the actual treatment though. From what I've read about PANDAs it's the strep antibodies the body produces following an infection that are the problem. > > For us OCD-type behaviours went roughly about the time gamma strep disappeared from test results. > > Best wishes, Sandy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 Hi Eileen, Thanks! That's really interesting (and useful too). I can remember myself being frustrated about some possible treatments that weren't an option. For us gamma strep disappeared after oregano oil. Not sure if anyone else has ever seen such an improvement with it though. Best wishes, Sandy Quote Link to comment Share on other sites More sharing options...
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