Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 : See the pasted info below that I received from Kathy on this board... She also told me that sometimes symptoms like fever and sore throat do not have to be present for a child to have strep. Hope this helps. in Missouri " Is D.J. by chance sick, or was he recently (within the past few months)? There is a type of OCD that is infection-caused (strep A bacteria). It is characterized by an abrupt, near-overnight explosion of severe symptoms that then tail off slowly as the child's circulating antibodies to strep A fall. This is referred to as PANDAS which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. It may be wise to take him to his ped for a throat culture to rule in/out a strep infection. A blood test (may be difficult to get a sample given D.J.'s current blood obsessions) will show if his strep titers are elevated. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 Hi, There are some PANDAS kids in this group. I think the subject was recently brought up. You might want to search our " archives " for PANDAS and see what turns up. I had wondered at one time if my son had PANDAS OCD as his OCD seemed to come on overnight, although he'd always had a few minor OCD behaviors. His OCD also got really bad last spring during a bout of strep. But I think with him it's just OCD and gets worse when he runs fevers or is sick, etc. Keep us updated on how your son is doing! > Does anyone else have a child with PANDAS? My son was recently > diagnosed with it. He recently went through an exacerbation of his > OCD symptoms because he had strep throat without our knowledge. > After about three months of intense OCD symptoms, he was doing > considerably better. Then he had one day, last week, where he seemed > sluggish, but he didn't have a fever and he didn't complain of a sore > throat. The very next day, he began asking for reassurance again. > For the past week, his OCD symptoms are escalating again. I don't > want to overact when he doesn't feel good, but I certainly want to > get him antibiodics if he has strep to help prevent these > exacerbations. How do I know? Has anyone else had this problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 Hi there, my child is a PANDAS child and when she has an abrupt upswing of OCD symptoms I take her to her pediatrician for a throat culture to determine if she has a strep infection, and antibiotics if she does. Our ped was reluctant to do this sometimes since she often didn't have any other signs of strep infection, only the suddenly worse OCD symptoms. Her psychiatrist called her to explain PANDAS and why it was important to go ahead and test in her case even if she wasn't presenting the full clinical picture of a strep infection. This was a few years ago, perhaps now pediatricians are more aware of PANDAS and the reason to rule in/out strep when these kids have abrupt worsenings. Adding to the confusion is, since my child has gotten older, many of her abrupt exacerbations have been caused by other germs or viruses, not strep. This is consistent with what Dr. Swedo of the NIMH has been reporting as true of some PANDAS kids. When Kel's worsening is due to something other than strep, she typically has abruptly worse OCD for 4 or so days, then she'll start in with fever or congestion or some other physical symptom that shows she is ill. Around that same time, the OCD symptoms will start to slowly wane. HTH, Kathy R. in Indiana > Does anyone else have a child with PANDAS? My son was recently > diagnosed with it. He recently went through an exacerbation of his > OCD symptoms because he had strep throat without our knowledge. > After about three months of intense OCD symptoms, he was doing > considerably better. Then he had one day, last week, where he seemed > sluggish, but he didn't have a fever and he didn't complain of a sore > throat. The very next day, he began asking for reassurance again. > For the past week, his OCD symptoms are escalating again. I don't > want to overact when he doesn't feel good, but I certainly want to > get him antibiodics if he has strep to help prevent these > exacerbations. How do I know? Has anyone else had this problem? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 I don't have any experience with TF/Xymogen and this is the first I have heard of this side effect. I'm sorry. - Stan > > > > > > We got results from Immunosciences for PANDAS > > panel. > > > There are three abnormalities with IgM. Does this > > mean > > > he has PANDAS? > > > > > > Meanwhile while on transfer factor and Oral > > > Immunoglobulins(Xymogen) he kicked up croup-like > > > cough/runny nose/fever/5-6 cold sores on face. He > > is > > > willing to sleep despite having slept only 5 hours > > in > > > the last 30 hours. > > > > > > We are a little worried today(approaching weekend > > as > > > well). Left a message for local DAN. Some words of > > > wisdom would help. > > > > > > IgG Strep Enzymes 25 (0-100) > > > > > > IgM Strep Enzymes 56 (0-50) > > > > > > IgG Step Antigen 22 (0-100) > > > > > > IgM Strep Antigen 59 (0-50) > > > > > > IgG B-cell antigen 30 (0-100) > > > > > > IGM B-cell antigen 40 (0-50) > > > > > > Myelin Basic Proten IgG 22 (0-88) > > > > > > Myelin Basic Protein IgM 30 (0-54) > > > > > > Myelin Basic protein IgA 7 (0-21) > > > > > > ASIALOGANGLIOSIDE IgG 15 (0-20) > > > > > > ASIALOGANGLIOSIDE IgG 40 (0-20) > > > > > > ASIALOGANGLIOSIDE IgA 2 (0-20) > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 try valtrex list, a few people there have lots of experience treating pandas (not sure if they are all still posting...). Also on NIDS list, think few have been treating on that protocol. re cholesterol, look into SLO syndrome and their diet – these kids are deficient due to genetics, there is a diet high in egg yolks that they are finding very helpful... Think they are using powdered pasteurised/raw egg yolks... http://www.smithlemliopitz.org/slofaq.htm#Eggs btw Swedo is the biggest authority on Pandas, she was behind the now-abandoned study on DMSA treatment for autism. She has been very approachable .... Will send you her email if you want to try nx Tom is showing testing results likely for PANDAS or at least possible, Incredibly high strep markers. Bugger! Could someone point me in the right direction as we've never even considered this, and his blood test (which also threw up fairly low cholestoral damn) is Big Bad News to us thanks!!! Steph xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Hi My grandson has just been diagnosed with PANDAS. The winter before last he had a bad ear infection - ears bleeding - and was given antibiotics. But as usual never followed up by NHS doctor. He has had quite a bad year - started OCD bedhaviours and quite spacey. We put it down to his high Candida. When he had the antistrep titers test it was very high and Dr. Monro (Breakspear) wanted to see him immediately. We did not realise that he had a temperature and very enlarged tonsils and glands. She has put him on penicillin and nystatin. He is now on the second course. We hope for better results next tests. Jill > > > > > try valtrex list, a few people there have lots of experience treating pandas > > (not sure if they are all still posting...). Also on NIDS list, think few have > > been treating on that protocol. > > > > > > > > re cholesterol, look into SLO syndrome and their diet these kids are > > deficient due to genetics, there is a diet high in egg yolks that they are > > finding very helpful... Think they are using powdered pasteurised/raw egg > > yolks... http://www.smithlemliopitz.org/slofaq.htm#Eggs > > > > > > > > > > btw Swedo is the biggest authority on Pandas, she was behind the > > now-abandoned study on DMSA treatment for autism. She has been very > > approachable .... Will send you her email if you want to try > > > > > > nx > > > > > > > > > > > > Tom is showing testing results likely for PANDAS or at least possible, > > Incredibly high strep markers. Bugger! > > > > Could someone point me in the right direction as we've never even > > considered this, and his blood test (which also threw up fairly low > > cholestoral damn) is Big Bad News to us > > > > thanks!!! > > > > Steph xx > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 thanks Natasa, by my reckoning you know enough to start practising medicine! I don't know how you do it but I'm very grateful that you do We're about to start a synthetic cholestoral booster, I'll post the name of it when I get it. We're doing this antibiotic and nystatin. I'm sure Tom reads these lists, he seems to pick things up as they become news. He's never tested high for strep before!! steph xx > > > > > try valtrex list, a few people there have lots of experience treating pandas > > (not sure if they are all still posting...). Also on NIDS list, think few have > > been treating on that protocol. > > > > > > > > re cholesterol, look into SLO syndrome and their diet these kids are > > deficient due to genetics, there is a diet high in egg yolks that they are > > finding very helpful... Think they are using powdered pasteurised/raw egg > > yolks... http://www.smithlemliopitz.org/slofaq.htm#Eggs > > > > > > > > > > btw Swedo is the biggest authority on Pandas, she was behind the > > now-abandoned study on DMSA treatment for autism. She has been very > > approachable .... Will send you her email if you want to try > > > > > > nx > > > > > > > > > > > > Tom is showing testing results likely for PANDAS or at least possible, > > Incredibly high strep markers. Bugger! > > > > Could someone point me in the right direction as we've never even > > considered this, and his blood test (which also threw up fairly low > > cholestoral damn) is Big Bad News to us > > > > thanks!!! > > > > Steph xx > > > > > > > Quote Link to comment Share on other sites More sharing options...
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