Ronnas

Hi there, I hope all is going well! I wanted to let you know we have had the same experience with our second son and nothing ever came of it. Without everything my oldest son had been through I would not have even known it was a tic that my other son was doing. He had a hmmmm sound for awhile (it seriously made my heart sink at the time) and another tic of pulling his top lip in. Both disappeared and were around only with some illness (around the end of winter for the last two years). He was a little more sentitive and maybe a bit restless but really nothing like my oldest son. Hopefully this will be your experience. Take Care!

quick reply...I have a son who is now 11 years old with PANDAS and I give him azithromycin every 5 days. Antibiotcs have obviously been really important in treating his symptoms of PANDAS but I cannot say enough about him having a very healthy lifestyle. I am more relaxed now but vitamins, most importantly a good multivitamin and essential fatty acids along with probiotics and removing all milk (casein) from his diet were really important parts of helping him. As well I can't say enough about him having a healthy body in terms of general cardiovascular fitness. At one time he benefitted from a reduction in TV and video games as well.

1: J Child Adolesc Psychopharmacol. 2007 Aug;17(4):533-8. Links Tics, Anxiety, and Possible PANDAS in an Adolescent.Coffey B, Wieland N. NYU Child Study Center, 577 First Avenue, New York, NY 10016. Barbara.coffey@med.nyu.edu. PMID: 17822348 [PubMed - in process] I don't have an abstract to post for this study but obviously from the title it is a report of PANDAS in an adolescent. The high titers may or may not be related to the appearance of the vocal tic and OCD. Below is information I have posted before... I have put some info below from the NIH. The majority of information that I have read would put a normal range for a strep titer test at 0-400. The majority of children with PANDAS that I have read about had very high titers. 600, 800, 1000's, 2000's. There is NO test for PANDAS. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. One of the best articles on PANDAS in my opinion: http://www.cmaj.ca/cgi/content/full/165/10/1353 The ASO and Anti-DNAse-B titers that are elevated in association with other symptoms of PANDAS such as a DRAMATIC onset of symptoms, etc means that it is suggestive that strep could be a trigger but the best doctors can do is make an association between symptoms and the onset of tics or OCD. There is no full proof way to rule out or confirm a PANDAS diagnosis...therefore the CONTROVERSY among doctors. Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child? A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.) I wish I knew what to advise re: antibiotics. If your doctor will give it a try I would recommend a 5 day course of azithromycin, there seems to be better results with azithromycin with PANDAS than with amox. Years ago we tried PenVk with my son and it did not help at all. At that time we used Keflex and the doctor wanted to switch to PenVk but my son did not respond to it the way he did with Keflex. Over time your daughters titers should come down. It's kind of a complicated story but my son has never had strep titers done. In terms of having prophylactic antibiotics prescribed for my son, we had an infectious diseases doctors prescribe clindamycin as needed years ago...basically if he showed PANDAS symptoms we would give him a course of clindamycin and this would settle him down. When the study below re: azithromycin was published I took it to my family doctor and she agreed to switch from clindamycin to azithromycin with very good results. http://intramural.nimh.nih.gov/pdn/pub-9.pdf

Although the information regarding PANDAS in older adolescents and adults is limited there is some information in medical journals regarding this. Hopefully you will see an improvement with the antibiotic. In our situation with PANDAS the improvement has always been with 1-2 days. Would your daughter be more willing to talk if you explained strep and PANDAS to her? Really in order to help her you need good communication with her so that you know what is going on. My son is on azithromycin prophylatically (1 1/2 years) and does well with this. If you do not notice an improvement with amoxi. then a 5 day course of azithromycin or another antibiotic like clindamycin may be helpful. 1: Biol Psychiatry. 2001 May 1;49(9):807-10. Links The question of PANDAS in adults.Bodner SM, Morshed SA, Peterson BS. Department of Psychiatry, Yale University Medical School, New Haven, Connecticut 06519, USA. BACKGROUND: Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) are a well-defined cause of obsessive-compulsive disorder in children. However, they have not been described or fully investigated in adults newly diagnosed with obsessive-compulsive disorder. METHODS: We describe an adult with onset of obsessive-compulsive disorder at 25 years of age after a severe antibiotic-responsive pharyngitis. He was evaluated with multiple psychiatric rating scales for obsessive-compulsive disorder and Tourette's syndrome, as well as with serologic assays and radiologic studies. RESULTS: In all respects except age our patient fulfilled established criteria for PANDAS. Assays for antibodies to group A beta-hematolytic streptococci, serum D8,17 lymphocytes, antistriatal (neuronal) antibodies, and anticytoskeletal antibodies all supported the hypothesis that a poststreptococcal process was active. Magnetic resonance imaging was abnormal and is described. CONCLUSIONS: The findings suggest that this patient's illness is similar to PANDAS in presentation and that poststreptococcal disease may result in adult-onset obsessive-compulsive disorder. PMID: 11331090 [PubMed - indexed for MEDLINE]

My son is 11 years old and about 80 pounds. He takes 500 mg azithromycin every 5 days. Azithromycin has a longer half life than other antibiotics therefore once every 5-7 days is fine. He has been on azithromycin for about 16 months and really has done very, very well on it, unbelievable actually given the 4 years prior to the azithromcin. Hope this helps. Ronna

this statement "only something that aggravates the situation" is probably not very accurate, as the theory is that there is a specific autoimmune reaction within the basal ganglia? My question is, when are they going to start testing for these autoantibodies? Is there not an accurate test for this yet? Hi Kim, can you believe after all of this time...I still don't know how to do the quote thing...I think saying "strep is only something that aggravates the situation" is accurate because I think that it is not only strep that is involved, if this was the case then PANDAS would be pretty clear cut and without controversy among doctors. I think strep (and most likely other bacteria or viruses) is involved along with compromised immune systems due to vaccinations, and environmental conditions, and then a genetic susceptibilty. For example, when things started for my son at age 5, in the same summer he had an untreated strep infection, his pre-K immunizations, he was exposed to a pesticide at a lake resort we were staying at, and genetically we have no history of tics but alot of auto immune diseases on both sides of the family. Though really when a family says they have no genetic hx of tics, well who knows, who really knows their family hx enough to say there were no tics, I don't think my dad did, but he died 5 years ago so I can't ask him, my brother and mom and I don't but really my mom's dad died when my mom was a 1 year old...maybe he did? There is a test for autoantibodies...I think this is the D18/17 marker...I don't know much about it and I don't hear much about it, but you are right, we need a test which can show a marker for susceptibility much like the marker for breast cancer...we can only hope! Ronna

But he was willing to put her on zithromax as I told him I had read it was helpful with tics. He only put her on it for 5 days. What do you all think about that? Should it be longer? Five days is the right amount of time for treating strep. Azithromycin is not the same as other antibiotics, it has a very long half life and 5 days of azith. is the same as 10 days on another antibiotic. My concern is that your son is not being treated. Really in my opinion (for what it is worth) is that your son and daughter should be treated at the same time. As well I think the adults in the home should be tested as someone may be a carrier and with a child in the home who shows an increase in symptoms with strep then this would be a reasonable step. At the onset of of discovering my son had PANDAS (meaning by accident we noticed a huge, sudden improvement in his tics when he was started on Keflex for a post op infection) we tested everyone in the family for strep and were completely surprised when it was my one year old daughter who came back positive for strep and she had NO symptoms. I wasn't thinking PANDAS there for a while because of the low ASO titer, but now with this round and her behavior - very irritable, demanding, easily frustrated, a slight increasing in ticking, I'm not sure. PANDAS is very difficult to understand, kim's post was perfect, really it is the trend in the titer level that matters not a single isolated number. Some cases of PANDAS are easy to understand in that they are "classic", especially with the sudden, severe onset. Others are not so clear cut. TS and OCD can be the result of many different triggers, some children have more than one, with some kids having a more clear food trigger, environmental tigger, or immune trigger is the case...each child is different and some have several triggers, genetics is a complicated thing. In our situation my son improved alot with antibiotics, but removing milk, corn, eggs, and chocolate and eliminating screens were very helpful, in addition with vitamins and an omega 3/6 combo. I suspect your daughter has several things going on and you can think of strep as one of her "triggers" but not her only trigger, which would mean it is important to do exactly what you are doing, stay on top of the strep, have throat cultures done as needed and treat when positive. Can't this all also be symptoms of Tourette's? These kinds of things have been going on for us for a while now leading me to think that strep has been missed in the past because we now know she doesn't show obvious signs. Is this TS? well really, this is an impossible question. I don't know how to explain this in a post but regardless the "trigger" for tics etc, or the label you want to give it whether it is TS, PANDAS, OCD, transient tics, etc...isn't it all the same thing? Every kid is different, A PANDAS dx does not mean a child does not have a dx of TS, or OCD...for others gluten/casein is a trigger, remove gluten and milk from the diet and the tics improve, does this child have TS? If additives (feingold) and screens are a trigger, and you remove them and the tics improve, does this child have TS ...do you see why there is a controversy with PANDAS and why some do not buy into it...PANDAS is not a separate thing from TS. In the beginning when I first started looking online for answers on braintalk specifically, I only posted on the PANDAS page, I would not even READ the tourette syndrome page because I did not want my son to have TS, PANDAS was MUCH more appealling because how convenient it was for me to explain to everyone that this was a "strep" problem and not TS! It is only with time and acceptance that I came to realize that "tourette syndrome" was ok for me and my son. That is what I mean by time being a great healer, with time all of this does not seem so difficult, everyone grieves and gets to the acceptance part, but for some it may take longer than others, but really we all get there eventually! In our situation, say for instance, if strep did not exist would my son still have tics, etc. Well I suspect he would, his tics etc. were not a result of only "strep", he has an immune system problem (immune system dysregulation syndrome...I like how kim says it better!). The azithromycin works because it is acting as a immune system regulator, as well as preventing a strep infection, which is a trigger for him. Anyways, now I feel like I am rambling and hoping this post made some sense as in the middle of it I was feeding my 2 year old breakfast which ended up on the floor! You are doing the right thing! Take care, Ronna

Thanks to Kim for posting the info about the titers... Our situation is very similar to Alison's. My son has been on azithromycin for just over a year now prophylactically and my son has been very stable throughout the year. A few minor ups and downs that only I would notice. This is typically a very tough time of year for my him due to the extra stress of spring allergies and he is doing remarkably well. As far as doctors we have "seen them all" also...neurologists (3), infectious diseses doctor, pediatric rheumatologist, and several pediatricians...the infectious diseases doctor agreed to prophylactic antibiotics as needed for my son at the time (about 3 years ago) and for 2 years we used clindamycin (keflex prior to this) when my tons symptoms increased with fairly ok results. About a year ago we started using azithromycin prophylactically as per the journal article from the NIMH and we have been so happy, he is so stable, no more of the dramatic ups and downs and he is very happy. When I decided I wanted to try the azithromycin prophylactically I went to my family doctor and showed her the information I had and she was very open to learning and working with me. Overall our doctor is just happy "something" is working for my son and she is pleased to see him doing so well...she's been with us for the long haul (she delivered my son!). All the best to you and I hope you find a doctor who is willing to learn and work with you.

Now I really am a broken record! A single ASO titer does not provide much info in terms of confirming PANDAS or not...it is the trend over time that is important. From the NIMH: A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection. Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child? A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.) ------------------------------------------------------------------------------------------------------------------------------------------- http://www.cmaj.ca/cgi/content/full/165/10/1353 We recommend evaluation of all children who present with the sudden onset or exacerbation of obsessive–compulsive symptoms, using the approach summarized in Fig. 1. This diagnostic algorithm, which is based on the literature summarized earlier as well as our clinical judgement, begins with a history-taking, mental status examination and focused physical examination. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. We recommend antistreptolysin O titre, because the other antistreptococcal test reported in the PANDAS literature, namely, antideoxyribonuclease-B (antiDNAse , is expensive and not widely available in Canada. As stated in this article a single blood test for strep can not rule out or actually dx PANDAS. Whether a level is rising or declining will give much more information. Some children do have chronically elevated strep antibody levels, what matters is the pattern...rising=a more recent infection...declining=recovery. BLOOD TESTS Streptozyme: Detection of multiple antibodies to extracellular antigens of streptococcus with streptozyme is of some diagnostic value but should never replace more standard tests such as streptolysin O antibody (ASO) or DNase-B antibody. These antibodies may be detected in patients after streptococcal pharyngitis, rheumatic fever, pyoderma, glomerulonephritis, and other related conditions. In evaluating a patient with suspected acute rheumatic fever or nephritis, determination of ASO, DNAse-B antibody, and streptozyme will likely yield a positive result in 92-98% of cases. Streptolysin O Antibody (ASO): the ASO test is used to provide serologic evidence of previous group A streptococcal infection in patients suspected of having a non-suppurative complication, such as acute glomerulonephritis or acute rheumatic fever. Use of the ASO for diagnosis of an acute group A streptococcal infection is rarely indicated unless the patient has received antibiotics that would render the culture negative. An ASO performed on serum obtained during the presentation of a non-suppurative complication that shows a titer two dilutions above the upper limit of normal is evidence for an antecedent streptococcal infection. It is recommended, however, to use a second test such as the anti-DNase B to confirm antecedent infections. Elevated serum ASO titers are found in about 85% of individuals with rheumatic fever. When both ASO and anti-DNase B are used, the result is over 95%. Skin infections with group A streptococci are often associated with a poor ASO response. Reference Interval: 0-1 year: 0-200 IU/ml 2-12 years: 0-240 IU/ml >13 years: 0-330 IU/ml DNase-B Antibody: The majority of group A streptococci produce significant quantities of DNase-B, while most other groups of streptococci do not. High levels of neutralizing antibody to DNase-B are commonly found in patients following a group A streptococcal infection. Since it persists longer than other streptococcal antibodies (2-3 months), it is the preferred test in patients with chorea suspected due to rheuamtic fever. Since it is not influenced by the site of infection, DNase-B antibody is more reliable than the ASO test in providing evidence for streptococcal infection in patients with post-impetigo glomerulonephritis. Elevated titers are strongly suggestive of recent or current infection with group A streptococci. Fourfold increases in itier between acute and convalescent samples taken approximately 2 weeks apart are confirmatory. Reference Interval: 1-6 years: < 1:60 7-17 years: <1:170 18 years and over: <1:85 So these are the "tests" for PANDAS which are not actually tests confirming PANDAS but rather the presence of a streptococci infection in association with the onset of neuropsychiatirc symptoms in a child.

We recommend evaluation of all children who present with the sudden onset or exacerbation of obsessive–compulsive symptoms, using the approach summarized in Fig. 1. This diagnostic algorithm, which is based on the literature summarized earlier as well as our clinical judgement, begins with a history-taking, mental status examination and focused physical examination. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. We recommend antistreptolysin O titre, because the other antistreptococcal test reported in the PANDAS literature, namely, antideoxyribonuclease-B (antiDNAse , is expensive and not widely available in Canada. I feel a bit like a broken record. Overall, a single ASO titer will not give you enough information to diagnose or rule out a PANDAS dx. The "trend" in the ASO titer is what is helpful...is the antibodies rising or declining. If your doctor does not know how to interpret the results then he/she needs to speak with someone knowledgeable. The NIMH is very willing to consult with doctors. This is a good article... http://www.cmaj.ca/cgi/content/full/165/10/1353

I hope this helps, sorry to hear about the tough week you are having...PLEASE NOTE: I have no idea why there are smiley faces in my post and I can't seem to get rid of them! From the NIMH: A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection. Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child? A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, [i]and then draw another titer several weeks later to see if the titer is "rising" [/i]– if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.) ------------------------------------------------------------------------------------------------------------------------------------------- http://www.cmaj.ca/cgi/content/full/165/10/1353 We recommend evaluation of all children who present with the sudden onset or exacerbation of obsessive–compulsive symptoms, using the approach summarized in Fig. 1. This diagnostic algorithm, which is based on the literature summarized earlier as well as our clinical judgement, begins with a history-taking, mental status examination and focused physical examination. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. We recommend antistreptolysin O titre, because the other antistreptococcal test reported in the PANDAS literature, namely, antideoxyribonuclease-B (antiDNAse , is expensive and not widely available in Canada. As stated in this article a single blood test for strep can not rule out or actually dx PANDAS. Whether a level is rising or declining will give much more information. Some children do have chronically elevated strep antibody levels, what matters is the pattern...rising=a more recent infection...declining=recovery. BLOOD TESTS Streptozyme: Detection of multiple antibodies to extracellular antigens of streptococcus with streptozyme is of some diagnostic value but should never replace more standard tests such as streptolysin O antibody (ASO) or DNase-B antibody. These antibodies may be detected in patients after streptococcal pharyngitis, rheumatic fever, pyoderma, glomerulonephritis, and other related conditions. In evaluating a patient with suspected acute rheumatic fever or nephritis, determination of ASO, DNAse-B antibody, and streptozyme will likely yield a positive result in 92-98% of cases. Streptolysin O Antibody (ASO): the ASO test is used to provide serologic evidence of previous group A streptococcal infection in patients suspected of having a non-suppurative complication, such as acute glomerulonephritis or acute rheumatic fever. Use of the ASO for diagnosis of an acute group A streptococcal infection is rarely indicated unless the patient has received antibiotics that would render the culture negative. An ASO performed on serum obtained during the presentation of a non-suppurative complication that shows a titer two dilutions above the upper limit of normal is evidence for an antecedent streptococcal infection. It is recommended, however, to use a second test such as the anti-DNase B to confirm antecedent infections. Elevated serum ASO titers are found in about 85% of individuals with rheumatic fever. When both ASO and anti-DNase B are used, the result is over 95%. Skin infections with group A streptococci are often associated with a poor ASO response. Reference Interval: 0-1 year: 0-200 IU/ml 2-12 years: 0-240 IU/ml >13 years: 0-330 IU/ml DNase-B Antibody: The majority of group A streptococci produce significant quantities of DNase-B, while most other groups of streptococci do not. High levels of neutralizing antibody to DNase-B are commonly found in patients following a group A streptococcal infection. Since it persists longer than other streptococcal antibodies (2-3 months), it is the preferred test in patients with chorea suspected due to rheuamtic fever. Since it is not influenced by the site of infection, DNase-B antibody is more reliable than the ASO test in providing evidence for streptococcal infection in patients with post-impetigo glomerulonephritis. Elevated titers are strongly suggestive of recent or current infection with group A streptococci. Fourfold increases in itier between acute and convalescent samples taken approximately 2 weeks apart are confirmatory. Reference Interval: 1-6 years: < 1:60 7-17 years: <1:170 18 years and over: <1:85 So these are the "tests" for PANDAS which are not actually tests confirming PANDAS but rather the presence of a streptococci infection in association with the onset of neuropsychiatirc symptoms in a child.

Hi there and welcome, My son did very well with the removal of milk (casein) from his diet for a few years. He can now tolerate milk without ticcing but really he only has it with his cereal, cheese on pizza etc. I still would not ever give him a glass of chocolate milk etc. I also have a one year old boy who I have had on soy milk. At one and one and a half I tried giving him whole milk and I instantly noticed a change in him with head banging and other behavioral stuff...anyways, I am sticking to soy milk with him for sure. My 5 and 8 year old kids seem to be fine with milk. As far as the PS3, we also have gone down this road and this was our solution...my kids can only use the computer, play station on Fridays (after school and in the evening)...they look so forward to Fridays, especially since they have discovered pokeman crater on-line, anyways, my sons do react a bit to the PS2 but because they are off for the weekend it is ok. Hang in there. My other advice would be to take things SLOWWWW, one thing at a time, for example first eliminate the PS3 for a week, assess any changes and THEN remove milk for a week or so, assess, then if you are going to add supplements, make any other changes to his diet do it "onen thing at a time" and keep a diary as to what you are doing because after awhile it is hard to remember what you did. Take care. Ronna

Below I have copied a journal article that I think is one of the best from the Canadian Medical Association Journal. A single ASO is not informative, rather serial ASO titers that show that elevating or declining numbers is much more informative... "Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. [b]These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre."[/b] http://www.cmaj.ca/cgi/content/full/165/10/1353 Is obsessive–compulsive disorder an autoimmune disease? Paul D. Arnold and Margaret A. Richter Dr. Arnold is Fellow, Children's Mood and Anxiety Service and Neurogenetics Section, and Dr. Richter is Staff Psychiatrist, Anxiety Disorders Clinic, the Centre for Addiction and Mental Health, University of Toronto, Toronto, Ont. Correspondence to: Dr. Margaret A. Richter, Centre for Addiction and Mental Health, 250 College St., Toronto ON M5T 1R8; fax 416 979-6853; peggy_richter@camh.net Abstract OBSESSIVE–COMPULSIVE DISORDER (OCD) IS A COMMON and debilitating neuropsychiatric disorder. Although it is widely believed to have a genetic basis, no specific genetic factors have been conclusively identified as yet, leading researchers to look for environmental risk factors that may interact with an underlying genetic susceptibility in affected individuals. Recently, there has been increasing interest in a possible link between streptococcal infections and the development of OCD and tic disorders in children. It has been suggested that OCD in some susceptible individuals may be caused by an autoimmune response to streptococcal infections, that is, a similar biological mechanism to that associated with Sydenham's chorea. The term "pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections" (PANDAS) has been used to describe a subset of children with abrupt onset or exacerbations of OCD or tics, or both, following streptococcal infections. Affected children have relatively early symptom onset, characteristic comorbid symptoms and subtle neurological dysfunction. Neuroimaging studies reveal increased basal ganglia volumes, and the proposed cause involves the cross-reaction of streptococcal antibodies with basal ganglia tissue. Vulnerability to developing PANDAS probably involves genetic factors, and elevated levels of D8/17 antibodies may represent a marker of susceptibility to PANDAS. Prophylactic antibiotic treatments have thus far not been shown to be helpful in preventing symptom exacerbations. Intravenous immunoglobulin therapy may be an effective treatment in selected individuals. Further understanding of the role of streptococcal infections in childhood-onset OCD will be important in determining alternative and effective strategies for treatment, early identification and prevention of this common and debilitating psychiatric disorder. -------------------------------------------------------------------------------- Obsessive–compulsive disorder (OCD) is a common and debilitating disorder, which an estimated 2%–4% of individuals will develop before the age of 18 years.1 The pathogenesis is presumed to involve basal ganglia dysfunction2,3 and underlying genetic factors.4,5 Compared with adults, children with OCD are more likely to be male1 and to have comorbid Tourette's syndrome, which is another highly familial disorder attributed to basal ganglia dysfunction6 that many investigators believe may result from the same underlying diathesis.7,8 Recently, there has been increasing interest in a possible link between streptococcal infections and OCD and tic disorders in children.9 A subtype of childhood OCD known as "pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections" (PANDAS)9,10 has been postulated. The purpose of this review is to provide clinicians with an overview of the PANDAS concept and information regarding the clinical presentation, prevalence, pathophysiology, predisposing factors and treatment of this condition. Sydenham's chorea: a medical model for OCD Sydenham's chorea, which is a neuropsychiatric syndrome that usually occurs in prepubertal children, may represent a "medical model" of onset of OCD in childhood. Sydenham's chorea develops following group A ß-hemolytic streptococcal infections and is one manifestation of rheumatic fever according to the Jones criteria.11 In a process known as "molecular mimicry," antistreptococcal antibodies cross-react with basal ganglia proteins, triggering an inflammatory response and producing the symptoms of Sydenham's chorea.9 In addition to the chorea that gives the syndrome its name, there are characteristic psychiatric symptoms, including a syndrome similar to attention-deficit hyperactivity disorder and emotional lability.12,13,14 Obsessive–compulsive symptoms, which were first described in patients with Sydenham's chorea by Osler,15 have been well documented in prospective studies of the syndrome14,16 leading to the suggestion that OCD may represent a "forme fruste," or an atypical, incomplete form, of Sydenham's chorea.17 PANDAS: a proposed OCD subtype Longitudinal studies of children with OCD identified a subgroup with a course of illness characterized by the dramatic onset of symptoms or their exacerbation, or both,9,10 one-third of whom exhibited "choreiform" movements resembling the chorea of Sydenham's chorea.18 The exacerbations of symptoms in some of these children were correlated with a history of recent streptococcal infections.9,10 Studies of children presenting with tics19 also raised the possibility that some children with neuropsychiatric disorders have symptoms caused or exacerbated by streptococcal infections. Following up on these early clinical observations, a group based at the US National Institute of Mental Health recruited children with presumed streptococcal-induced OCD based on a set of diagnostic criteria that they had developed. The term "pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections" (PANDAS) was coined to describe a putative subtype of children with OCD and tic disorders who met all 5 working criteria.9 Table 1 summarizes these criteria and other diagnostic guidelines gleaned from the current literature.10,20 View this table: [in this window] [in a new window] Table 1. The prevalence of PANDAS is unknown. There is one report on the prevalence of streptococcal-induced exacerbations in a group of children presenting with tics, 11% of whom had a history of exacerbations within 6 weeks of a streptococcal infection.21 Limitations of this study include its setting in a highly specialized clinic, which limits its generalizability to other populations with tic disorders, and its reliance on retrospective historical data instead of objective laboratory findings such as antistreptococcal antibodies. Two studies have evaluated antistreptococcal antibodies in subjects with Tourette's syndrome compared with controls, and in both of these studies significantly elevated titres were observed in the subjects with Tourette's syndrome.22,23 Antistreptococcal antibody levels were found to correlate with severity of symptoms in one report.22 The PANDAS syndrome is believed to result from antistreptococcal antibodies that have cross-reacted with basal ganglia tissue, as has been demonstrated in Sydenham's chorea. Consistent with this model, the following findings have been reported: significantly elevated antineuronal antibodies in children with PANDAS24 and related neuropsychiatric disorders,25,26,27 increased basal ganglia volumes on volumetric MRI28 in subjects with PANDAS and higher antistreptococcal antibodies that correlated with increased basal ganglia volumes in subjects with either attention-deficit hyperactivity disorder or OCD.29 Taken together, these findings are consistent with autoimmune-mediated inflammation of the basal ganglia, although further research is required to confirm this association, and many unanswered questions remain. For example, it is not clear whether this autoimmune mechanism is specific to OCD and tic disorders or has implications for other childhood neuropsychiatric disorders. This was highlighted by a recent study reporting a significant correlation of antistreptococcal antibody titres with a diagnosis of attention-deficit hyperactivity disorder, but not with OCD or tic disorders.29 Predisposing factors for PANDAS Streptococcal infections are ubiquitous in childhood, however, neuropsychiatric disorders are not, suggesting that only certain individuals are predisposed to develop the PANDAS phenotype.9 Vulnerable individuals may have a genetic predisposition to developing neurotransmitter dysfunction or to formation of antistreptococcal antibodies that cross-react with neuronal proteins, or may have a form of immune dysregulation, or both. D8/17, which is a monoclonal antibody that identifies a specific B lymphocyte cell-surface marker, is one possible susceptibility factor for PANDAS. Significantly elevated levels of this marker have been found in individuals with rheumatic fever and to a lesser extent in their family members when compared with controls. It is, thus, considered a possible trait marker, indicating genetic susceptibility to rheumatic fever (and by inference, to Sydenham's chorea).30,31 To date, elevated levels of antibodies that recognize the D8/17 marker have been demonstrated in children with PANDAS,32 and more generally in subjects with early onset OCD and tic disorders.33,34 In a sample of children with autism, D8/17 expression was shown to be significantly correlated with compulsive behaviour.35 Although the D8/17 data are suggestive, the functional significance of this marker is unknown,30,31 and further investigation is needed to clarify its etiological and clinical significance. Elevated rates of tic disorders and OCD have been reported in first-degree relatives of children with PANDAS, which is comparable to previous observations in relatives of individuals with OCD and tic disorders, indicating that genetic factors may be important in conferring vulnerability to the PANDAS subtype.36 However, although a number of candidate genes have been implicated in OCD,37,38,39,40,41 there are no published reports of molecular genetics studies of individuals with PANDAS. A few studies have measured cytokines or immune cells in subjects with OCD. In addition to acting as protein messengers between immune cells, cytokines are also known to influence central nervous system signalling and, therefore, may play a role in the pathophysiology of a number of psychiatric and neurological disorders.42 A relative skewing toward type 1 cytokine production in cerobrospinal fluid has been demonstrated in pediatric patients with OCD.43 Various immunological abnormalities reported in adult subjects with OCD44,45,46,47 have not been consistently replicated, and other studies have produced negative findings.48,49,50 In summary, although it is presumed that individuals who develop PANDAS in the presence of streptococcal infections are vulnerable as a result of a genetic predisposition or a form of immune dysregulation, or both, this has yet to be clearly demonstrated. Interesting preliminary findings in PANDAS that require further investigation include the presence of elevated levels of D8/17 antibodies, elevated rates of tic disorders and OCD in first-degree relatives, and immunological abnormalities reported in individuals with OCD. Approach to the diagnosis of PANDAS We recommend evaluation of all children who present with the sudden onset or exacerbation of obsessive–compulsive symptoms, using the approach summarized in Fig. 1. This diagnostic algorithm, which is based on the literature summarized earlier as well as our clinical judgement, begins with a history-taking, mental status examination and focused physical examination. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. We recommend antistreptolysin O titre, because the other antistreptococcal test reported in the PANDAS literature, namely, antideoxyribonuclease-B (antiDNAse , is expensive and not widely available in Canada. The D8/17 marker is an experimental assay that is not available for routine clinical use. View larger version (44K): [in this window] [in a new window] Fig. 1: Assessment and treatment of children presenting with abrupt-onset obsessive–compulsive disorder (OCD) or tic disorders. ADHD = attention-deficit hyperactivity disorder, ASO = antistreptolysin O, CBT = cognitive behavioural therapy, SRIs = serotonin reuptake inhibitors, NIMH = US National Institute of Mental Health, PANDAS = pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Treatment of PANDAS Current first-line treatments for OCD include pharmacological treatment with serotonin reuptake inhibitors (SRIs) and cognitive behavioural therapy. Researchers have reported response rates of between 50% and 75% for pharmacotherapy1 and from 67% to 100% for cognitive behavioural therapy.1,51 With the accumulating evidence that PANDAS represents a distinct autoimmune subtype, it is now possible to examine various therapies for the disorder targeting either the infectious trigger for the illness or the immune response itself. Recently, 2 randomized controlled trials have evaluated these approaches to the treatment of children with PANDAS.52,53 In the first study, patients received either 4 months of penicillin V administered orally followed by 4 months of placebo, or placebo followed by penicillin V. There was no difference between the active and placebo phases in the severity of obsessive–compulsive symptoms or tics. However, the penicillin regimen used was ineffective in preventing infections and, consequently, no conclusions could be drawn regarding the efficacy of penicillin prophylaxis in preventing exacerbations of tics or OCD symptoms.52 In the second study, children with severe PANDAS received one of 3 treatments: plasma exchange, intravenous immunoglobulin, or placebo (sham intravenous immunoglobulin). When subjects were assessed one and 12 months post treatment and compared with the placebo group, both plasma exchange and intravenous immunoglobulin were associated with striking improvements on standardized scales that measure obsessive–compulsive symptoms, anxiety and overall functioning.53 An open trial of plasma exchange in a small group of children with treatment-refractory OCD without a history of streptococcal infections failed to show any therapeutic benefit.54 These findings demonstrate that immunomodulatory treatments may represent an efficacious treatment for PANDAS specifically and are probably ineffective in treating other forms of OCD. Plasma exchange and intravenous immunoglobulin are highly invasive, require admission to hospital and have not been directly compared with more traditional therapies such as serotonergic medications and cognitive behavioural therapy. However, as a result of recent publicity surrounding PANDAS, parents and physicians in the United States have been seeking immunomodulatory treatments for children with OCD and tic disorders despite the potential risks. This has led the US National Institute of Mental Health to issue a warning to parents and clinicians that plasma exchange and intravenous immunoglobulin are not to be used outside research protocols.55 Our recommended approach to treatment, based on the literature summarized above as well as our clinical judgement, is summarized in Fig. 1. Standard therapies shown to be efficacious in the treatment of OCD51 and tic disorders56 should still be used as first-line treatment, accompanied by careful monitoring and early treatment of group A ß-hemolytic streptococcal infections. However, in treatment-refractory children with a clear PANDAS course, prophylactic antibiotics might be considered in consultation with a pediatrician. To our knowledge, immunomodulatory treatments are not currently available anywhere in Canada for the treatment of childhood neuropsychiatric disorders. Physicians who are seeking treatment for a child with PANDAS are encouraged to contact the US National Institute of Mental Health directly (www.nimh.nih.gov) regarding ongoing clinical trials. Childhood-onset obsessive–compulsive disorder Lifetime prevalence: 2%–4% Pathogenesis: genetic causes, basal ganglia dysfunction Children with this disorder are more likely to be male and to have comorbid Tourette's syndrome or tics Sydenham's chorea Poststreptococcal syndrome that usually occurs in prepubertal children Pathogenesis: mechanism of "molecular mimicry" in which antistreptococcal antibodies cross-react with basal ganglia proteins Psychiatric symptoms: obsessive–compulsive behaviour, emotional lability, "attention-deficit hyperactivity disorder–like" syndrome Evidence regarding the origin and pathogenesis of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) Elevated antineuronal antibodies Increased basal ganglia volume measured using volumetric MRI Elevated levels of cells expressing the D8/17 marker Positive family history of obsessive–compulsive disorder and tic disorders Evidence of response to immunomodulatory therapies

I thought this was very well written and informative and may be of some interest to someone and I think it is worth reading through...R. ** New Issue - Helping "Explosive" Children: An Innovative New Approach ** ************************************************************************************* Several years ago when my younger daughter was prone to explosive outbursts, my wife and I were helped tremendously by an excellent book called 'The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, "Chronically Inflexible" Children'. The book is authored by Dr. Ross Greene, a clinical psychologist from Harvard Medical School. Dr. Greene's approach impressed me as a thoughtful and respectful way to deal with the behavioral volatility and emotional outbursts that often add to the challenges faced my many parents of children with ADHD. ** WHAT ARE THE COMMON CHARACTERISTICS OF INFLEXIBLE-EXPLOSIVE CHILDREN? ** The label "inflexible-explosive" child is not a diagnostic term recognized in DSM-IV, the official diagnostic guide for psychiatric disorders. Instead, it is used by Dr. Greene to capture the key features of children who are extremely difficult for parents to manage. According to Dr. Greene, the key features of such children are the following: 1. A very limited capacity for flexibility and adaptability and a tendency to become "incoherent" in the midst of severe frustration. These children are much less flexible and adaptable than their peers, become easily overwhelmed by frustration, and are often unable to behave in a logical and rational manner when frustrated. During periods of incoherence, they are not responsive to efforts to reason with them, which may actually make things worse. Dr. Greene refers to these episodes as "meltdowns" and argues that the child has little or no control over his/her behavior during these episodes. 2. An extremely low frustration tolerance threshold. These children often become overwhelmingly frustrated by what seem like relatively trivial events. Because their capacity to tolerate frustration develop more slowly than their peers, they often experiences the world as a frustrating place filled with people who do not understand what they are experiencing. 3. The tendency to think in a concrete, rigid, black- and-white manner. These children fail to develop the flexibility in their thinking at the same rate as peers, and tend to regard many situations in an either-or, all-or-none, manner. This greatly impairs their ability to negotiate and compromise. 4. The persistence of inflexibility and poor response to frustration despite a high level of intrinsic or extrinsic motivation. Even very salient and important consequences do not necessarily diminish the child's frequent, intense, and lengthy "meltdowns". As a result, typical approaches of rewarding a child for desired behavior and punishing negative behavior do not diminish the child's tendency to "fall apart". According to Dr. Greene, traditional behavioral therapy approaches for such children often don't work at all and can make things worse. In addition to these key features, Dr. Greene notes that a child's meltdowns often have an "out-of-the-blue" quality, occurring in response to an apparently trivial frustration even when the child has been in a good mood. As a result, parents never know what to expect and things can seem to fall apart at any moment. ** WHAT CAUSES A CHILD TO BE THIS WAY? ** According to Dr. Greene, most children who become extremely inflexible and explosive do so because of biologically-based vulnerabilities and not because of "poor parenting". The list of biological vulnerabilities that may predispose children to develop these characteristics include the following: - Difficult Temperament - By nature, some infants come in to the world being more finicky, emotionally reactive, and more difficult to soothe than others. These "innate" aspects of personality are what psychologists refer to as temperament. (Note: It is important to recognize that even very difficult temperaments can be modified over time and this in no way "dooms" a child to a life of ongoing difficulty and struggle.) - ADHD and Executive Function Deficits - Many children with difficult temperaments are eventually diagnosed with ADHD. As discussed in prior issues of Attention Research Update, current theorizing about the core deficits associated with ADHD focus on problems in a crucial set of thinking skills referred to as "executive functions". Although there is not universal agreement on the specific skills that constitute executive functions, most lists would include such things as: organization and planning skills, establishing goals and being able to use these goals to guide one's behavior, working memory, being able to keep emotions from overpowering one's ability to think rationally, and being able to shift efficiently from one cognitive activity to the next. Deficiencies in these skills are believed to help explain not only the core symptoms of ADHD (i.e. inattention and hyperactivity/impulsivity), but also the poor frustration tolerance, inflexibility, and explosive outbursts that are seen in the "inflexible-explosive" children described by Dr. Greene. For example, if a child has difficulty shifting readily from one activity to the next because of an inherent cognitive inflexibility, this child may feel overwhelmingly frustrated when parents say it is time to stop playing and come in for dinner. The child may not intend to be disobedient, but may have trouble complying with parents' demands because of trouble shifting flexibly and efficiently from one mind-set to another. In fact, Dr. Greene argues that most "explosive children" want to behave better and feel badly about their outbursts. He believes they are motivated to change their behavior but lack the skills to do it. - Language processing problems - Language skills set the stage for many critical forms of thinking including problem solving, goal setting, and regulating/managing emotions. Thus, it is not surprising that children with poorly developed language abilities, as is often true in children with ADHD, would have greater difficulty managing frustration. - Mood difficulties - Some children are born predisposed to perpetually sunny and cheerful moods. Others, unfortunately, tend to experience sustained periods of irritability and crankiness for reasons that are rooted largely in biology. This is not just true for children who experience full-blown mood disorders such as depression or bipolar disorder, but can apply to "sub-clinical" mood difficulties as well. Imagine for a moment how you tend to handle things when feeling cranky and irritable. If you're like most people, you probably become frustrated more easily and lose your temper more readily. For children who are prone to these negative mood states, more chronic difficulties with frustration and temper are thus likely to be evident. ** WHAT CAN PARENTS DO? ** How can a parent help their "explosive" child become less explosive, develop greater self-control, and thereby create a better quality of life for everyone in the family? According to Dr. Greene, the first step is to develop a clear understanding of the reasons for the child's explosiveness. To the extent that parents - and others - regard a child's explosiveness as reflecting deliberate and willful attempts to "get what they want", the overwhelming tendency will be to respond in punitive ways. Dr. Greene argues convincingly, however, that punishments will not work for a child who lacks the skills to handle frustration more adaptively. That is because when these children are frustrated they are not able to use the anticipation of punishment to alter their behavior. When one's mindset changes from "my child is acting like a spoiled brat" to "my child needs help in learning to deal with frustration in a more flexible and adaptive manner", it becomes easier to move from a punishment-oriented approach to a skills-building approach. At the heart of this effort is what Dr. Greene refers to as the "Basket Approach". ** THE "BASKET" APPROACH ** Because "meltdowns" can be so difficult for everyone in the family to endure, the primary objective in working with "explosive children" is to first reduce the frequency of such episodes. Reducing the number of meltdowns from several per day to one per day, and eventually to just a handful per week, can make an enormous difference in the quality of family life and to children developing a sense of being able to control their behavior. Initially, this is accomplished largely by reducing the demands to tolerate frustration that are made on the child by sorting the types of behaviors the create problems into 3 baskets according to how critical it is to change the behaviors or to curtail them when they occur. - Basket A - Some behaviors are so problematic that they must remain off-limits even if enforcing the rule against them will result in a meltdown. Initially, Dr. Greene suggests that the only behaviors to be placed in Basket A are those that are clear safety issues (e.g. wearing a seat belt in the car; not engaging in dangerous or harmful behaviors such as hitting others). This is where parents must continue to stand firm and insist on compliance. Dr. Greene's specific criteria for what goes in Basket A are as follows: 1. The behavior must be so important that it is worth enduring a meltdown to enforce: 2. The child must be capable of behaving in the way that is expected. For example, Dr. Greene would argue that there is no point insisting that completing assigned homework be placed in Basket A when the child lacks the skills and frustration tolerance to do this consistently. By reducing the number of behaviors for which compliance is non-negotiable to those that are really and truly essential and that the child is capable of performing, the number of exchanges that are likely to set off explosive episodes can be drastically reduced. - Basket B - Basket B - the most important basket according to Dr. Greene - contains behaviors that really are high priorities but are ones that you are not willing to endure a meltdown over. These can include such items as completing schoolwork, talking to parents with respect, complying with reasonable expectations, etc. It is around Basket B behaviors that Dr. Greene believes that critical compromise and negotiation skills can be taught to your child. For example, suppose your child is watching TV and you know it is time to stop and get started on homework. You tell your child to turn off the TV and get started, and he refuses. The temptation here would be to insist on immediate compliance and to threaten punishment (e.g. no TV for the rest of the week) if your child does not comply. But, in Dr. Greene's framework, this is not a safety issue, and thus should not be placed in Basket A. He would ask what is likely to happen if you make such a response? One likely consequence is that your child's frustration will increase, he or she will lose control, and a full-fledged meltdown will ensue. Is this worth it? If standing firm and tolerating this meltdown made it more likely that your child would comply the next time you made such a demand, the answer would be yes. If, however, standing firm and triggering the meltdown does not increase the likelihood of compliance in the future, or reduce the probability of future meltdowns, Dr. Greene would suggest it was definitely not worth it. What to do instead? Dr. Greene argues that these Basket B behaviors provide wonderful opportunities to try and engage your child in a compromise and negotiation process. In the scenario above, the parent could say something like, "I know that it is important to you to keep watching TV. I would like for you to be able to do this, but I also know that you have homework that needs to get done. Let's try to come up with a compromise where you'll get some of what you want, and I'll get some of what I want." The goal here is not only to get the child to give in and do what you want, but to begin teaching your child the compromise and negotiation skills that will contribute to his or her becoming more flexible over time. Dr. Greene points out how this process can be extremely difficult for inflexible-explosive children, and that it is not unusual for them to become increasingly agitated when trying to negotiate a solution. As a parent, if you observe this starting to occur, and sense your child is getting closer to a meltdown, the goal becomes trying to diffuse the tension so that a meltdown does not take place. This can mean offering compromise solutions for the child in an effort to help things calm down. When this does not work, Dr. Greene suggests just letting things go so that the meltdown is avoided. In the example above, should the efforts to negotiate fail and lead the child to the verge of a meltdown the parent might say, "Well, I can see you are getting really upset about this. I appreciate that you tried to work out a compromise with me but we have not been able to come up with a good one yet. So, why don't you just watch a bit more TV for now and we can try again in a little while to work out a good compromise." This can be very difficult to do and many parents along with mental health professionals would be concerned that such actions would result in teaching the child that he or she can get what she wants by refusing to give in and becoming upset. This is what a traditional behavioral therapist would argue. From Dr. Greene's perspective, however, insisting that the child turn off the TV when a compromise was not reached would accomplish little more than triggering a meltdown that would also prevent homework from getting started on and be much more upsetting for everyone. Because of this, he advocates doing your best to help your child develop some much needed negotiation skills, but dropping things when it is clear that an explosion is imminent. Later, when the child has settled back down, you can resume your efforts to negotiate. Developing skills to compromise and tolerate frustration does not happen right away. Dr. Greene points out that progress in these areas can be painstakingly slow, but that over time, the approach he recommends can lead to substantial gains for explosive children. - Basket C - Basket C contains those behaviors that are simply not worth enduring a meltdown over, even though they may have previously seemed like a high priority. By placing a number of previously important behaviors in Basket C, the opportunity for conflict producing meltdowns between parents and their child is greatly diminished. What kinds of things belong in Basket C? This depends on the specifics of each situation but may include such things as what a child will and will not eat, what clothes they wear, how they keep their room, etc. Dr. Greene suggests that the question to ask in determining whether a particular behavior falls into Basket C is "Is this so important that it is really worth risking a meltdown over?" If not, and you've already identified a number of behaviors that seem more important and worth negotiating over (i.e. those in Basket , then into Basket C it goes. - How does this compare to traditional parenting approaches? - Dr. Greene's approach to dealing with explosive children runs counter to what many parents and professionals believe, i.e, that if a child is not punished, for behaving inappropriately they will never develop the necessary self-control nor be deterred from continuing to misbehave. Thus, Dr. Greene's thesis here is a controversial one and is at odds with traditional behavior therapy approaches that have substantial research support. Dr. Greene suggests, however, that for children whose explosiveness stems from a basic and biologically based inability to manage frustration, Dr. Greene suggests that behavioral interventions may not be effective can actually make things worse by increasing, rather than decreasing, the frequency with which a child loses control. - Isn't this just giving in to a misbehaving child? - Not necessarily. Dr. Greene points out that there is an important difference between giving in and deciding what behaviors are important enough to stand firm on. It remains the responsibility and prerogative of parents to be clear about what is non-negotiable, when compromise is a reasonable way to go, and what things to let slide for the time being. As the child becomes better able to tolerate frustration and learn much-needed compromise and negotiation skills, more and more behaviors can be moved from Basket C into Basket B, thus providing your child with increasing opportunities to practice learning to compromise. - DOES THIS APPROACH WORK? RESULTS FROM A RECENT STUDY - Dr. Greene's approach will resonate with some people and be sharply criticized by others. However, the hallmark of a scientist is a willingness and desire to test one's theories through empirical research and I was thus quite pleased to recently come across a study published several years ago by Dr. Greene in which he tested the approach described above against more traditional behavioral parent training therapy with a sample of oppositional defiant children who also had symptoms of a mood disorder (Greene et al. [2004]. Effectiveness of collaborative problem solving in affectively dysregulated children with oppositional-defiant disorder: Initial findings. Journal of Consulting and Clinical Psychology, 2004, 72, 1157-1164). Participants in this study were parents of 50 children with ODD - for a description of diagnostic criteria for ODD see www.helpforadd.com/oddcd.htm - who also had at least sub threshold features of either childhood bipolar disorder or major depression. In addition, about two-thirds of the children were diagnosed with ADHD and many were being treated with medication. The parents of these children were randomly assigned to 1 of 2 interventions designed to help them bring their child's behavior under better control: the collaborative problem solving model developed by Dr. Greene or a more traditional behavioral parent training program developed by Dr. Russell Barkley, one of the world's leading authorities on ADHD. Dr. Barkley's parent training program is a highly structured behavior management program that lasted for 10-weeks. The focus is on teaching parents more effective discipline and behavior management strategies and sessions were attended primarily by parents, although children participated occasionally as well. Families assigned to the Collaborative Problem Solving (CPS) treatment were educated about the biological factors contributing to their child's aggressive outbursts, the "baskets" framework described above, and about the use of collaborative problem solving as a means for resolving disagreements and defusing potentially conflictual situations so as to reduce the likelihood of aggressive outbursts. As with Barkley's parent training program, sessions were attended primarily by parents. The number of sessions attended by parents ranged from 7-16 and the average length of treatment was 11 weeks. - RESULTS - At the conclusion of treatment, parents in both groups reported a significant decline in their child's level of oppositional behavior. At 4-months post-treatment, however, the gains reported by families who received traditional parent training were beginning to erode while those who received Greene's Collaborative Problem Solving therapy reported that gains were fully sustained. Specifically, 80% of children in the CPS condition were reported to be either very much improved or much improved by their parents compared to only 44% in the traditional parent training program. Parents in the CPS condition also reported that they were experiencing significantly less stress, that their children were more adaptable, and that hyperactive-impulsive symptoms were reduced. They also felt more effective at setting limits for their children and that communication with their child had improved. Significant improvements on these dimensions were not evident. - SUMMARY and IMPLICATIONS - The approach developed by Dr. Greene for developing self-control in children prone to emotional outbursts and melt-downs represents an important shift from traditional behavioral treatment methods. It is based on the premise that when this behavior has a strong biological underpinning, as he feels is true for many children, the use of punishments and rewards are not likely to be effective. Instead, he advocates that parents work to remove sources of frustration from their child's life, become clear about what behaviors they truly need to take a stand on, and focus helping their child develop the ability to negotiate, compromise, and manage their affect. Because melt-downs can be so painful for everyone to endure, parents are taught to avoid making demands on their child that would be likely to trigger a melt-down unless it is absolutely necessary. This will be regarded by many as a controversial approach, but results from a preliminary test suggest that these ideas may have real value for children and families. Because this is only an initial study, however, it is clear that more work needs to be done, and I am hopeful that a larger trial that tests the value of Dr. Greene's treatment suggestions will be published shortly. For those of you who would like to learn more about these interesting ideas, Dr. Greene maintains a web site at www.explosivechildren.com where his published books and videos/DVDs are available. There is also a web site at www.cpsinstitute.org that is in the process of being redesigned but that should be back online shortly. ************************************************************************************* Thanks again for your ongoing interest in the newsletter. I hope you enjoyed the above article and found it to be useful to you. Sincerely, David Rabiner, Ph.D. Senior Research Scientist Center for Child and Family Policy Duke University Durham, NC 27708 ************************************************************************************* © 2007 David Rabiner, Ph.D.

dedee, I am so sorry to hear of the difficulties you are having. I suspect the reason why your doctors are "resistant" to a PANDAS dx is b/c your son has had OCD since the age of 5. Typically, PANDAS is a sudden onset of neuropsychiatric symptoms. Either way if the antibiotics are helping it is worth pursuing it with the doctors and advocating for him. It is difficult, in the early stages I thought I would go crazy telling the doctors that the antibiotics were making a difference. Hang in there. Michelle, I would get another opinion. Seriously, early treatment, the younger the better and I think the better the outcome...IMHO...the theory he will "outgrow" complications from strep is not accurate and your son is very young and he will be exposed to strep often as he gets into school. You may want to look at this... Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS).Murphy ML, Pichichero ME. Elmwood Pediatric Group, University of Rochester Medical Center, 601 Elmwood Ave, Box 672, Rochester, NY 14642, USA. BACKGROUND: The current diagnostic criteria for pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS) are pediatric onset, neuropsychiatric disorder (obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt onset and/or episodic course of symptoms; association with group A beta-hemolytic streptococcal (GABHS) infection; and association with neurological abnormalities (motoric hyperactivity or adventitious movements, including choreiform movements or tics). OBJECTIVE: To assess new-onset PANDAS cases in relation to acute GABHS tonsillopharyngitis. DESIGN: Prospective PANDAS case identification and follow-up. RESULTS: Over a 3-year period (1998-2000), we identified 12 school-aged children with new-onset PANDAS. Each patient had the abrupt appearance of severe OCD behaviors, accompanied by mild symptoms and signs of acute GABHS tonsillopharyngitis. Throat swabs tested positive for GABHS by rapid antigen detection and/or were culture positive. The GABHS serologic tests, when performed (n = 3), showed very high antideoxyribonuclease antibody titers. Mean age at presentation was 7 years (age range, 5-11 years). In children treated with antibiotics effective in eradicating GABHS infection at the sentinel episode, OCD symptoms promptly disappeared. Follow-up throat cultures negative for GABHS were obtained prospectively after the first PANDAS episode. Recurrence of OCD symptoms was seen in 6 patients; each recurrence was associated with evidence of acute GABHS infection and responded to antibiotic therapy, supporting the premise that these patients were not GABHS carriers. The OCD behaviors exhibited included hand washing and preoccupation with germs, but daytime urinary urgency and frequency without dysuria, fever, or incontinence were the most notable symptoms in our series (58% of patients). Symptoms disappeared at night, and urinalysis and urine cultures were negative. CONCLUSION: To our knowledge, this is the first prospective study to confirm that PANDAS is associated with acute GABHS tonsillopharyngitis and responds to appropriate antibiotic therapy at the sentinel episode.

I have posted some of these in the past but I thought I would do so again. R. Mycoplasma pneumoniae infection and Tourette's syndrome. Muller N, Riedel M, Blendinger C, Oberle K, Jacobs E, Abele-Horn M. Hospital for Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munchen, Nussbaumstrasse 7, D-80336 Munchen, Germany. nmueller@psy.med.uni-muenchen.de An association between infection and Tourette's syndrome (TS) has been described repeatedly. A role for streptococcal infection (PANDAS) has been established for several years, but the involvement of other infectious agents such as Borrelia Burgdorferi or Mycoplasma pneumoniae has only been described in single case reports. We examined antibody titers against M. pneumoniae and various types of antibodies by immunoblot in patients and in a sex- and age-matched comparison group. Participants comprised 29 TS patients and 29 controls. Antibody titers against M. pneumoniae were determined by microparticle agglutination (MAG) assay and confirmed by immunoblot. Elevated titers were found in significantly more TS patients than controls (17 vs. 1). Additionally, the number of IgA positive patients was significantly higher in the TS group than in the control group (9 vs. 1). A higher proportion of increased serum titers and especially of IgA antibodies suggests a role for M. pneumoniae in a subgroup of patients with TS and supports the finding of case reports implicating an acute or chronic infection with M. pneumoniae as one etiological agent for tics. An autoimmune reaction, however, has to be taken into account. In predisposed persons, infection with various agents including M. pneumoniae should be considered as at least an aggravating factor in TS. PMID: 15590039 [PubMed - indexed for MEDLINE] 1: Pediatr Neurol. 2004 Aug;31(2):119-21. Links Restless legs syndrome: association with streptococcal or mycoplasma infection.Matsuo M, Tsuchiya K, Hamasaki Y, Singer HS. Department of Pediatrics, Faculty of Medicine, Saga University, Saga, Japan. Group A beta-hemolytic streptococcal infections have been reported to cause neuropsychiatric symptoms, such as chorea, tics, and obsessive-compulsive disorder, presumably through autoimmune damage to basal ganglia. Mycoplasma pneumoniae infections have also been reported to cause damage to the basal ganglia. Restless legs syndrome is a movement disorder with focal restlessness, an irresistible desire to move, and exacerbation by long periods of sitting or lying. We present three children with transient restless legs syndrome-like symptoms possibly associated with group A beta-hemolytic streptococcal infection or Mycoplasma pneumoniae infection. One of three patients had persistently elevated enzyme-linked immunosorbent optical density values against human caudate and putamen. PMID: 15301831 [PubMed - indexed for MEDLINE] Association between streptococcal infection and obsessive-compulsive disorder, Tourette's syndrome, and tic disorder .Mell LK, Davis RL, Owens D. Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA. OBJECTIVE: Reports have suggested that streptococcal infection may be etiologically related to pediatric autoimmune neuropsychiatric disorders (PANDAS), but there are few good epidemiologic studies to support this theory. Using population-based data from a large West-Coast health maintenance organization, we assessed whether streptococcal infection was associated with increased risk for obsessive-compulsive disorder (OCD), Tourette's syndrome (TS), or tic disorder. METHODS: This is a case-control study of children 4 to 13 years old receiving their first diagnosis of OCD, TS, or tic disorder between January 1992 and December 1999 at Group Health Cooperative outpatient facilities. Cases were matched to controls by birth date, gender, primary physician, and propensity to seek health care. RESULTS: Patients with OCD, TS, or tic disorder were more likely than controls to have had prior streptococcal infection (OR: 2.22; 95% CI: 1.05, 4.69) in the 3 months before onset date. The risk was higher among children with multiple streptococcal infections within 12 months (OR: 3.10; 95% CI: 1.77, 8.96). Having multiple infections with group A beta-hemolytic streptococcus within a 12-month period was associated with an increased risk for TS (OR: 13.6; 95% CI: 1.93, 51.0). These associations did not change appreciably when limited to cases with a clear date of onset of symptoms or with tighter matching on health care behavior. CONCLUSION: These findings lend epidemiologic evidence that PANDAS may arise as a result of a postinfectious autoimmune phenomenon induced by childhood streptococcal infection. : J Am Acad Child Adolesc Psychiatry. 1997 Aug;36(8):1128-33. Links Comment in: J Am Acad Child Adolesc Psychiatry. 1999 Mar;38(3):228-9. J Am Acad Child Adolesc Psychiatry. 2000 Jul;39(7):810-2. Case study: an infection-triggered, autoimmune subtype of anorexia nervosa.Sokol MS, Gray NS. Eating Disorders Program, Menninger Clinic, Topeka, KS, USA. sokolms@menninger.edu OBJECTIVE: Certain cases of anorexia nervosa (AN) may be similar to the recently described subtype of childhood-onset obsessive-compulsive disorder hypothesized to be one of the pediatric infection-triggered autoimmune neuropsychiatric disorders (PITANDs). METHOD: Three clinical cases are reported. The first patient is a 12-year-old boy whose AN worsened acutely after a group A beta-hemolytic streptococcal (GABHS) infection. His symptoms were alleviated after antibiotic treatment. Two other patients with possible PITANDs-related AN are described. RESULTS: An infection-triggered process may contribute to the pathogenesis of a subtype of AN. CONCLUSIONS: Future research is needed to explore the nature of PITANDs and their relationship with AN.

I believe quite strongly in food sensitivities but obviously it was a huge key for us in the beginning. Every child is different though and what works for one may not be the answer for another. In our situation milk (casein) was a trigger for tics FOR SURE! Not only does dairy increase my son's tics, he also became hyper and "weepy" with dairy. Corn, eggs and chocolate were also triggers, he seemed fine with gluten. In the beginning I chose to do a single food elimination diet...this takes more time but was much easier to deal with. Basically I would eliminate one thing for about 10 days and then reintroduce and see what his reaction was. We ended up eliminating milk, corn, eggs and chocolate for about a year and got rid of any other junk (fruit roll-ups etc.). After that time we reintroduced things slowly...for example, eggs at Sunday morning brunch only etc...and then corn slowly etc. We re-introduced dairy last and he does tolerate it now as long as it is not too much...pizza is ok now once in awhile and milk with cereal etc...although I would never give him chocolate milk or tons of ice cream for example. I just stay out of the "junk" aisles at the grocery store, my kids don't miss what they don't see! TV/video games was also a trigger, but it was easier to eliminate these as my kids were younger. We do have a PS2 but the kids are so busy they just don't have much time to care whether they play it. We did also use supplements, essential fatty acids (not fish oil), probiotics etc. It was all a bit of work at the time but I was blessed that he could swallow pills easily and was not a picky eater at all. Anyways, my advice would be to take it all a bit slow, make only one change at a time, keep a diary because after time goes by it is hard to remember what you have done and when. Take Care, Ronna

Hi Patty, I wanted to let you know about our experience. I have been posting here for years so most know that my oldest son has PANDAS. Between the ages of 5-7 his tics were quite severe. Now at 10 years old he is mostly tic free and doing well on azithromycin once a week. Anyways, a few years ago my other son started a tic...I could have fallen over...what was the trigger? ME (sort of)!!!! I remember saying in front of him to a friend how the one tic my older son did that drove me NUTS at the time was a HMMM sound. I think my younger son may have heard me ... not one of my finer moments! My younger son was about 6 years old and I think originally he may have done the hmmm sound to copy his brother (maybe a some attention getting behavior/also if a kid is "ticcy" I find they are "catchy"...a kid in my older son's class has begun to tic and heck if he isn't doing the same tic now at times). The tic sort of stuck around and since that time he sort of does a quiet HMMM sound when he is getting some new teeth. It no longer bothers me and it disappears eventually. Overall I have no concerns with him. I now have a one year old boy also and I am quietly "obsessed" with watching his development! EVERYONE tells me "not to worry"...it drives me NUTS...seriously after everything I have been through with my older son it would be crazy not to watch my youngest closely. Anyways, I just wanted to let you know that everything turned out well for my younger son when I noticed a bit of a tic and hopefully this will be the case with your daughter and I certainly understand your worry! Ronna

I posted this on another thread...thought I would put it here also. You may want to show it to your doctor. http://intramural.nimh.nih.gov/pdn/pub-9.pdf Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE. Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland 20892, USA. sniderl@intra.nimh.nih.gov BACKGROUND: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. METHODS: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. RESULTS: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p<.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p<.01]. CONCLUSIONS: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup Others can give more info re: food sensitivities etc but for us antibiotics were not the only answer, changing my son's diet to eliminate casein (milk), corn, and eggs certainly helped, along with limiting TV, video games etc. This was a few years ago. He is doing really well now, he is 10 years old, tolerates milk (although I still would not give him lots, for example, he had egg nog over Xmas and of course he started ticcing, but now he is ok with having milk in his cereal, cheese pizza etc...a few years ago even a little bit and he would tic, become hyper etc)...anyways, I would also recommend Sheila Roger's book, and other books like, "Is this your child" by Doris Rapp and the this book...it was one of the first I ever read when my son began to tic etc... even though my son does not have autism, it really inspired me as it made me realize there was alot I could do for my son in terms of diet etc http://www.amazon.ca/Unraveling-Mystery-Pe...TF8&s=books

We have been away since New Year's...we just got home..."lurking" also and posting when I can...I hope this link helps. Very good article to give to your doctor. My son is doing really well on azithromycin also. He has been on it since last spring and it is the best 8 months in 5 years. http://intramural.nimh.nih.gov/pdn/pub-9.pdf Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders.Snider LA, Lougee L, Slattery M, Grant P, Swedo SE. Pediatrics and Developmental Neuropsychiatry Branch, National Institute of Mental Health, National Institutes of Health, Department of Health and Human Services, Bethesda, Maryland 20892, USA. sniderl@intra.nimh.nih.gov BACKGROUND: The acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) describes a subgroup of children with obsessive-compulsive disorder and/or tic disorder that experience symptom exacerbations following streptococcal infections. We hypothesized that the prevention of streptococcal infections among children in the PANDAS subgroup would decrease neuropsychiatric symptom exacerbations. METHODS: Twenty-three subjects with PANDAS were enrolled in a double blind, randomized controlled trial. Antibiotic prophylaxis with penicillin or azithromycin was administered for 12 months. Rates of streptococcal infections and neuropsychiatric symptom exacerbations were compared between the study year and the baseline year prior to entry. RESULTS: Significant decreases in streptococcal infections during the study year were found with a mean of .1 (.3 SD) per subject, compared to the baseline year with 1.9 (1.2 SD) in the penicillin group and 2.4 (1.1 SD) in the azithromycin group [p<.01]. Significant decreases in neuropsychiatric exacerbations during the study year were also found with a mean of .5 (.5 SD) per subject in the penicillin group and .8 (.6 SD) in the azithromycin group, compared to the baseline year with 2.0 (.9 SD) in the penicillin group and 1.8 (.6 SD) in the azithromycin group [p<.01]. CONCLUSIONS: Penicillin and azithromycin prophylaxis were found to be effective in decreasing streptococcal infections and neuropsychiatric symptom exacerbations among children in the PANDAS subgroup. PMID: 15820236 [PubMed - indexed for MEDLINE]

Azithromycin is a well tolerated antibiotic... SIDE EFFECTS: Azithromycin is generally well tolerated. The most common side effects are diarrhea or loose stools, nausea, abdominal pain, and vomiting, each of which may occur in fewer than one in twenty persons who receive azithromycin. Rarer side effects include abnormal liver tests, allergic reactions, and nervousness. We have not noticed an increase in thirst but I do tell my son to take his azithromycin with a full glass of water. Ronna

For a long time we had a pediatric rheumatologist who coordinated the care for my son, however he does have a dx of rheumatic fever due to a mitral valve regurg on his ECHO (so he also sees an pediatric cardiologist yearly for follow-up) and a seconary dx of PANDAS as per the NIMH. I found the infectious diseases doctor to be the most helpful and he was also the doctor who recommended the long term prophylactic antibiotics and he is the doctor our family physician goes to if she has questions. We have never seen an immunologist as we live in a smaller center and one was not available to us. As well in the beginning we saw several neurologist...all of them fairly useless (they just wanted to prescribe meds like Orap, etc) and several pediatricians, but it was not till we started going to our pediatric rheumatologist that things improved and we found someone we had good teamwork with.

Pediatric Autoimmune Neuropsychiatric Disorders and Streptococcal Infections: Role of Otolaryngologist. Triological Society Papers Laryngoscope. 111(9):1515-1519, September 2001. Orvidas, Laura J. MD; Slattery, Marcia J. MD Abstract: Objective: To increase awareness and understanding of the putative role of streptococcal infection in the development of neuropsychiatric disorders in children and to discuss therapeutic options in this group of patients. Methods: Case illustration and literature review. Results: Two siblings, one with obsessive-compulsive disorder (OCD) and one with a tic disorder, had tonsillectomy for recurrent streptococcal pharyngitis. At the latest follow-up visit (11 mo postoperatively), both patients exhibited significant improvement in their psychiatric illnesses. We discuss these cases as well as the diagnosis, pathophysiology, and treatment of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). Conclusion: PANDAS is an active area of research investigating the relationship between streptococcal infections and the development of obsessive-compulsive disorder or tic disorders (or both) in children. The etiopathogenesis of PANDAS is thought to reflect autoimmune mechanisms and involvement of the basal ganglia of susceptible hosts. Because otolaryngologists evaluate a large portion of pediatric patients with recurrent streptococcal pharyngitis, it is important to be aware of this association and to manage these patients appropriately. PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection).Lynch NE, Deiratany S, Webb DW, McMenamin JB. Department of Paediatrics, Royal College of Surgeons in Ireland Medical School, Dublin. PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection) is a rare condition first described in 1998. It describes the presence of obsessive-compulsive disorder (OCD) or tics with an episodic course, and a temporal relationship to Group A beta haemolytic streptococcal infection (GABHS). Recurrent episodes can be disruptive and upsetting for a child, but the best way to treat the condition has yet to be established. Penicillin prophylaxis has not proved effective, and other therapies are experimental. There is some evidence in the literature to support the role of tonsillectomy in improving the condition. We report a case of a 6-year-old boy who presented with tic and hemi-chorea associated with GABHS throat infection. He had a recurrence of his symptoms associated with a further GABHS infection, but has had no further symptoms following tonsillectomy. This case report lends further evidence to the role of tonsillectomy in the management of PANDAS. These are a few articles supporting tonsillectomy for PANDAS. The NIMH does not recommend removing the tonsils for PANDAS but it something that comes up lots with parents with children with PANDAS, especially on the PANDAS message boards through Yahoo...I wish I had answers for all of your questions. I understand how confusing it all can be. If your son's doctor thought it was appropriate to have his tonsils out then it could be the way to go. Since your son is symptom free at the time hopefully having his tonsils out wil prevent future strep infections and you will not have any further tics, etc. Only time will tell...what I can tell you is that with time things will get easier. In our situation my son is doing really well on azithromycin and at the age of 10 seems to be outgrowing some of this. Take care, Ronna

Many children are on penicllin prophylactically for PANDAS and penicillin is still (I think) the recommendation from the NIMH. To make a really long story short because I have to get my kids to bed...we stumbled on to PANDAS when my son was treated for a post-op infection with keflex, we switched to pen vk, he did not respond to the pen vk, back to keflex and then further down the line with clindamycin....now azithromycin. We have had the absolute best results with azithromycin over the last 6 months and I am very please with how much easier it is...once a week! If the penicllin is working for your daughter I would stick with it and keep azithromycin as an option down the road. Like Alison, we took our son off the prophylactic antibiotic, we had a rocky road and now I will keep him on the prophylactic antibiotics (azithromycin) indefinetly...most likely through the teenage years for sure. Ronna

My son has PANDAS and we have to stay away from probiotics with the "good strep bacteria"...my son reacts to them... As an aside I ordered Threelac for my son and I took it myself before trying it on my son...I had an immediate, horrible, horrible reaction to it. Seriously, if what happened to me was the "die-off" effect I would rather have yeast...though I have a friend who had great results with it for her daughter.