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Buster
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"Sudden Onset" definition and studies
Buster replied to norcalmom's topic in PANS / PANDAS (Lyme included)
EAMom sent me a reminder about this post and in light of the recent presentations at the IOCDF, I thought we should pick this one back up. What the heck is sudden onset? If I were some researcher who didn't believe in PANDAS, I'd wait until this was the new established "criteria" and then attack it as "ill defined" and then prove it didn't occur because the kids in my sample who had onset overnight, didn't separate from kids who had onset over a week. If you wanted to be a PANDAS-naysayer, nothing is easier than to attack definitions. I look at Kurlan's 2008 article where he painstakingly says that he met the published criteria of 1998 -- did he meet the criteria of Swedo's 2004 "separating fact from fiction" article -- nope -- he stuck with the original definition and attacked episodic. I think Swedo and Murphy and others are going to have to publish something much more precise to get around this. Here's my try (this is just a draft to get your comments): "Sudden Onset means a change of symptoms from a baseline of functioning behavior to an inability to function over the course of 1 month or less. This abrupt change of behavior may be measured using standardized instruments such as a change in CYBOCS of +16pts. A change of 16 pts represents a dramatic shift in symptom severity from a child who was functioning (perhaps with some quirky behavior/compulsions) to one unable to function (fairly constant imparement, "possessed", everyone on eggshells, unable to function in a school setting)." Here's a try at a graph: And for relapsing/remitting: Thoughts? I realize a lot of cases may not meet the above. But does the above help better than "sudden onset"? Buster edited based on comments below from Vickie and EAMom. -
Survey results -- boys vs girls symptoms
Buster replied to Buster's topic in PANS / PANDAS (Lyme included)
Bumping an old post to see if anyone has looked at this boys vs girls symptom thing in more detail. -
Preparing for IVIG #1- need any helpful advice
Buster replied to 3boysmom's topic in PANS / PANDAS (Lyme included)
I'm sure you all have checked for other co infections because you have so involved with all of this research through these years. ... How is your DD now? Will you be doing more IVIGs? Is she still on Antibiotics? Our history is that March appears to be the bad month for us. We think this is because dd11 gets sick in February. We will likely do another round of IVIG as we've had good results from prior IVIG's (one in 2009 and one in 2010). In the prior 2 IVIG's we saw 80-90% improvement. This is roughly similar to the results in some cases of Swedo's original study where she found children with acute symptoms and PANDAS consistent OCD symptoms had a 58% improvement one month out from before treatment and a 68% improvement one year out(i.e., this was by no means the cure-all, but there was sustained improvement in these very acute children). One of the better papers (meaning understandable) on why IVIG likely works is here : http://bloodjournal.hematologylibrary.org/cgi/content/full/115/9/1663 My summary of the paper is that they think IVIG works by either: Saturating all the Fc receptors on the APCs so APC never presents the auto-antibody Binding to a suppressor mechanism (currently unknown) that prevents the APC from presenting any auto-antibodies Binding to Fc receptors on the endothelial cells so auto-antibodies have no place to attach and die I think it is (a) -- namely that the APCs are saturated and never get around to presenting the auto-antibody and hence the cycle stops -- but who really knows. On the concept of co-infection, there's a lot to consider there. The literature seems quite compelling that Sydenham Chorea is a sequela to an untreated GABHS infection. There's something going on when the immune system can't clear the particular antigen. Perhaps this is what is happening in Lyme too -- the original antigen just can't be cleared. Perhaps it isn't co-infection as much as an inability in some people to clear the original antigen. The immune system does strange things when it goes into "backup mode". If we think that PANDAS is similar to OCD sequela in Acute Rheumatic Fever, then it is likely that PANDAS is a genetic disorder. Apparently about 3-6% of the population is genetically succeptible to ARF/SC. Beyond this genetic predisposition, they need the right strain, they would need to go untreated for GABHS, and about 30% of those would get ARF and about 20% of those would get OCD and/or SC. We do keep our daughter on prophylactic azithromycin, but have concluded that this at best minimizes the reaction but does not stop an infection or reaction. Antibiotics don't kill bacteria, they just help the body's own immune system kill the bacteria. So what we think is happening is our daughter gets colonized when exposed to GABHS, her body has an immediate response and produces the antibodies and the cycle begins. Buster -
Preparing for IVIG #1- need any helpful advice
Buster replied to 3boysmom's topic in PANS / PANDAS (Lyme included)
Hi 3boysmom, So DS11 is on Augmentin XR 1000mg twice a day. Did you put DS10 on anything? This is a big decision and we too went for IVIG after the scary symptoms returned (in our case the eating disorder). I will tell you the first two weeks after IVIG were particularly difficult and made us wonder if we had made a horrible decision as almost all behaviors returned with intensity for those 2 weeks. Dr. K often says in his talks that the predinsone is there for the parents - to help them understand that it is an autoimmune disorder. In our case, our daughter was exquisitely sensitive to her sister getting GABHS. In fact when PANDAS daughter ramped in symptom we could invariably take younger sister in and she'd be culture positive. When symptoms subsided, we could take younger daughter in and she'd be culture negative. We decided to call this the "peanut allergy" equivalent. She just had to be around someone with peanuts to have a reaction. (I know, not very scientific, but what we observed). Yup. We've seen exactly that. That hasn't been our experience I'm sorry to report. What we did see was a dramatic falloff of symptoms post-IVIG for approximately 6 months. Then when there was a fever, symptoms would return. Not disasterous like the last time, but say 40-50% of last time. These would subside, but there was a baseline drift. I guess the way I'd say our case went was if 100% was the worst, we got about 90% back when daughter went on azith, then when got sick again, baseline moved up to about 20% (i.e., 80% better than worst). Then sick again, baseline moved up to 40%. We did IVIG again, returned to about 10% for about 6 months. Then when sick, baseline shifted up again. We don't know how others have done, but that's what we see. Buster -
Yes, the underlying drug used is amantadine, an N-methyl-D-aspartate (glutamate) antagonist. They found in http://www.springerlink.com/content/724p204w617032k7/fulltext.pdf that the drug provoked a selective enhancement of noradrenaline plus a minimization of adrenaline, dopamine, plasma serotonin and platelet serotonin circulating levels. Still trying to figure out the study and what else might be going on. Buster
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ASO & DNASE way down now. What does it mean?
Buster replied to beeskneesmommy's topic in PANS / PANDAS (Lyme included)
Hi Beeskneesmommy A number of items in your post. You might want to take a quick look at the 2008 thread: http://www.latitudes.org/forums/index.php?showtopic=3756 which tries to explain some of the research around ASO and Anti-DNAseB. The only properly studied effect has been rising ASO or rising Anti-DNAseB. If you have chronically elevated or falling titers, then basically nothing is known. It literally is not studied how long it takes for these antibody levels to fall. When the titers are rising, it means that the child had a strep invasion 4-6 weeks prior (ASO rise) or 8-10 weeks prior (AntiDNAseB rise). However, studies indicate that ASO rises in only 54% of the children with confirmed GABHS colonization. Even when adding in AntiDNAseB titers are confirmatory in on ~70% of cases -- meaning ~30% don't show such a titer rise. When we ran our informal (ala non-scientific) study on ~400 children on this forum we found : Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness Whereas 54% of boys had elevated ASO or Anti-DNAseB In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture whereas 14% of boys had this situation. What I found interesting was that boys appeared ~4x more likely to have a rise in ASO or Anti-DNAseB Whereas girls were ~2x more likely to be labeled as "carriers" (see http://www.latitudes.org/forums/index.php?showtopic=9495&st=0&p=79704&fromsearch=1entry79704) I was also wondering if you had been on amoxicillin in your time of elevated titers. Could you provide what antibiotics you tried? Best regards, Buster -
Wanted: how IVIG works and time it takes
Buster replied to Burnell's topic in PANS / PANDAS (Lyme included)
For the first of your questions, you might find this thread helpful. http://www.latitudes.org/forums/index.php?showtopic=7855&view=findpost&p=63932 The referenced paper is quite good. Buster -
Talking to Child about her illness
Buster replied to taytay's topic in PANS / PANDAS (Lyme included)
This is super tricky to do (especially with someone at 12). In the discussions with our daughter, she referred to the OCD symptoms as part of her -- helping her do things. It wasn't until she got better (and got older) that she had the insight that something was off. When she was no longer exhibiting symptoms she was able to reflect back on the time and say "it was something I sort of wanted to do and then it got away from me" (referring to an eating disorder). When reflecting back on the defiance and outrageous demands, she'd say "it didn't seem weird when I was doing it... it does now." We did do some video taping and then when she was in remission showed her some of the videos. This was effective at showing it and being able to talk about the behavior. At 12, she might not be willing to admit anything is amiss (certainly not to parents) and so you might consider having a neutral confidant involved (such as a psychologist/phychiatrist) or even an journal. Best wishes, Buster -
serum ferritin--anyone else had this checked?
Buster replied to EAMom's topic in PANS / PANDAS (Lyme included)
One other thing to highlight is that iron supplements tend to cause constipation... -
I am fuming after iep meeting, buster?
Buster replied to Tamistwins's topic in PANS / PANDAS (Lyme included)
I can't see the original email, but if I were replying to a letter about de Oliveira's paper, I'd probably say something like the following: Thank you for sending me a copy of the most recent de Oliveira's paper. I wasn't sure if you had read her prior paper (http://www.pedrheumonlinejournal.org/july-august/RHEUMATIC%20FEVER.htm) in which she correctly states that about 40,000 children die each year of untreated streptococcal infection (with another 2 million needing heart surgery). Thank goodness that despite her comment in that previous paper that the "the pathogenesis of RF remains elusive [and] how and why a small percentage of patients develop RF is still under investigation" that children can still receive treatment for a GABHS infection and prevent acute rheumatic fever. Based on the efficacy of antibiotics for RF, it would be immoral to withhold treatment pending the outcome of researchers trying to discern the pathogenesis of the disease. This is at the heart of the debate about PANDAS. No one debates the clinical signs. To have PANDAS one must have a diagnosis of OCD or a tic disorder -- this is the first criteria. No one debates the apparent efficacy of the Perlmutter treatments. What is being debated (just like for Sydenham Chorea for the past 200 years) is whether the symptoms are caused by group A beta-hemolytic streptococcus. Luckily recent studies such as that by Kirvan are helping us understand both Sydenham Chorea and PANDAS (see http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf). this might get her to read the actual cunningham paper :-) -
I am fuming after iep meeting, buster?
Buster replied to Tamistwins's topic in PANS / PANDAS (Lyme included)
I've been thinking about how to respond to the post. I deeply understand the frustration you must be experiencing. Some comments however, For the iep, are you pursuing eligibility under OHI or under SLD? If OHI, then the required items is to have a condition and show it is negatively impacting access to the educational program. Under current definition, someone identified as being on the pandas cohort would have either OCD or tic disorder. It is irrelevant (for purposes of the iep whether the team agrees on the cause of the symptoms - only the symptoms need be present). As such you may find it easier to get a dsm vi diagnosis of anxiety disorder or OCD or tics. Tourettes syndrome is typically classified under OHI even though the definition of ts exclude medical cause. The real hurdle you have to pass is not what to call it, but showing it is impacting access to the educational curriculum and by reason thereof requires special education. I know first hand how tempting to try to convince others of pandas, but that's unlikely to be your best route. No one disputes that children diagnosed with pamdas have profound symptoms, the only dispute is whether GABHS is the culprit. Focus in the iep on the symptoms and not the cause and the least restrictive environment that will help you child access the cirruculum. I know you'd rather dump the papers on the nurse, but just switch it around and say "you know the controversy is about the cause and not about the symptom right?" Buster -
Sudden onset OCD is present in about 70% of children with Sydenham chorea. In Swedo's studies in 1994-1998 some children with sudden onset OCD had the episode 3 weeks before Syndenham and some 3 weeks after the movement disorder. Strangely having Sydenham Chorea diagnosis may actually help you in getting treatment. Many believe that Sydenham Chorea is monophasic (and it is in about 70% of cases), and many believe it is self-limiting (which it is for the motor abnormality), however, there are very spread and inconsistent results for the OCD accompanying the SC. van Immerzeel's paper http://www.ncbi.nlm.nih.gov/pubmed/20349351 on the benficial nature of IVIG for SC. There are also many papers from Brazil as SC and SC+OCD are quite a problem still there. Best regards, Buster
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What happened to people on here from a year or so ago?
Buster replied to eljomom's topic in PANS / PANDAS (Lyme included)
Interesting question... We're doing well and I'm not on the forum all the time. When I do check in, there's a lot of great advice and I'm finding I don't have a lot to add -- this is frankly a bit of a relief. Back in 2010, I started documenting everything I had collected or learned in hopes that I'd save someone the hours I spent searching. History: http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300 Summary: http://www.latitudes.org/forums/index.php?showtopic=6265 FAQ: http://www.latitudes.org/forums/index.php?showtopic=6266 Flowchart: http://www.latitudes.org/forums/index.php?showtopic=6688 Comparison: http://www.latitudes.org/forums/index.php?showtopic=11715&view=findpost&p=98115 How IVIG works: http://www.latitudes.org/forums/index.php?showtopic=7855&view=findpost&p=63932 Survey Results: http://www.latitudes.org/forums/index.php?showtopic=9495&st=0&p=79704entry79704 I hope these resources continue to be beneficial and I update them occasionally. Buster -
EAMom is correct. The original comment came from a discussion with Dr. Ed Kaplan regarding research he has been doing for well over 20 years on carriage. A good paper on the topic was the Th17 activation in nasal innoculation/colonization in Cleary and Wang's recent paper. See http://www.pnas.org/content/early/2010/03/11/0904831107.full.pdf This is one of several papers that are looking at the effects of carriage (in this case in mice). There's a lot of distance between mice and men, but this is part of the research that is looking at the immune systems response to just carriage. Regards, Buster
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If any of the children here have mitral valve prolapse then you might want to check whether the children have ARF. Mitral valve involvement is one of the ARF signs. Keith
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Just hoping that over the next 5 years we get more science in place that makes something a better test. I think Cunningham's are the leading candidate, but Dale and Church also had some ABGA tests. Bottom line, hopefully something better comes along :-) Buster
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So bringing this full circle back to the article :-) I think the article and ones like it will be used to say: The definition of PANDAS is too broad as currently written and includes kids who do not have the disease The evidence for assertion (1) is going to be Kurlan, Singer, and now Leckman's papers where they will show that Tourette's Syndrome kids meet the "previously published criteria of PANDAS" even though they don't have the explosive OCD symptoms. The neurologists will save face saying "we weren't arguing whether kids had auto-immune triggered OCD" just that the definition was too broad. That's all we were trying to say (yeah, right....) I also think the following things are likely to occur over the next 5 years: New studies will focus on the original explosive OCD trait and the cooccurance of other psychiatric conditions This will tighten the criteria and neurologists will feel heard and Swedo will be vindicated/proven There's likely to be some fight on whether PANDAS is a mild form of Sydenham Chorea and whether Sydenham Chorea should be allowed to be a standalone diagnosis for Acute Rheumatic Fever, but that's the fight for the DSM-VI book. Doctors will switch from testing unreliable ASO and AntiDNAseB titers to using symptoms and specific tests that check for anti-neuronal antibodies. It will become common practice and the AMA will recommend that throat cultures be given anytime a child presents with explosive OCD traits (and regressive behavior) Okay, the last 2 are just things I wish for, but I can see happening within the next 5 years. I truly think we'll see a whole bunch of these "repositioning papers" where the abstract is of the form "did not confirm existence of ..." and then the details of the paper will talk about the paper being "underpowered for OCD-only" or "selection criteria used the 2002 criteria rather than the revised 2005 criteria" or "that we found one case fitting the definition in retrospect in our control group indicating that the admittance criteria needs to be fixed". This posturing will happen over the next year as the evidence mounts. Bottom line, this will resolve. We're just likely to face another 5 years of the war until the original Perlmutter study is redone. Buster
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Quoting from the study: "All subjects were sequentially enrolled at one of six clinical settings( Yale University, Cincinnati Children's Hospital Medical Center, New York University Child Study Center, Johns Hopkins University School of Medicine, University of Alabama at Birmingham, and University of Rochester School of Medicine) during a 4-year, 6-month period from July 2002 to December 2006." The diagnostic criteria used was the one from Swedo's 1998 paper on the first 50 cases (i.e., Swedo's clarifications from 2004 and 2005 on episodic course, co-occurent psychiatric conditions, and acute and dramatic onset were not used). In Table 1, 26/31 proported PANDAS cases had a diagnosis of TS (inclusive of chronic tic disorder). 49/53 had such a diagnosis in the non-PANDAS cases. To have a TS diagnosis required vocal and motor tic with no remission lasting for > 3 months. 22/31 had OCD in the proported PANDAS group (but this is co-occuring with TS) and 35/53 had OCD in the non-PANDAS subgroup (with the same coocurrence with TS). You'll see that there could be only 5 OCD-only PANDAS cases and only 4 OCD-only controls. As such, the study is underpowered to reach any conclusion regarding OCD in the absense of TS diagnosis. Buster
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There's a lot here that I could go into, but the short comment is that it appears that by the time the report got back to the doctor (i.e., throat culture positive) and this got back to the parents -- enough time had elapsed that the children were already "feeling" better and didn't get antibiotics (i.e., this is largely the parents choosing to address or not). I'll have to go and see if I can find the original clinical trial invite as I wonder what parents were thinking was going on when they signed up. I'm pretty sure if I was part of the clinical trial and heard my kid had a positive throat culture, I'd be getting antibiotics :-) One other thing to consider is that the whole longitudinal study and data is the same set of kids that Singer, Kurlan and Kaplan were all writing about in other papers. The same methodological flaws that existing in the original sample group, exist here. Essentially if you wanted to know if GABHS caused exacerbation in OCD-only cases this study tells you nothing. If you wanted to know if GABHS caused exacerbations in long established TS cases, the studies tell you something. What you really get is that: if you pull a kid from the Tourette's study group -- it'll likely be a boy if you pull a kid with established tics -- exacerbations will be due to lots of things if you pull kids with a baseline CYBOC score > 16, these will fluxuate about 5-10 pts over a year if you ask tic folks to evaluate OCD, you generally don't have them recording anxiety or other comorbidities once a study is conducted with the term PANDAS and non-PANDAS - those terms will stick even if the kids don't match the actual PANDAS criteria upon reflection (rather than at time the study was constructed). Remember these kids were recruited in 2002 before the clarification by Swedo in 2005. Sigh. Buster
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I've done a first pass analysis on the paper and the cited references (particularly reference 47, Lin et al Sept 2002). Lin's criteria is being used to define an exacerbation. If taken at face value, this means an exacerbation is: a 7 point rise in CY-BOC score with a minimum value of 16 or a 9 point rise in YGTSS score with a minimum value of 19 or a combined rise of 10 points with a minimum value of 33 on a combined CY-BOC and YGTSS score [*] This is important because the sample group was drawn from the Tourettes study group. This means that most of the population were patients with Tourettes or chronic tic disorders and had had such a diagnosis for some time. [*] In addition, the sample was prodominantly male (i.e., 81% of PANDAS cases were boys) [*] Only 5 proported PANDAS subjects and 4 non-PANDAS subjects had OCD-only symptoms. This implies the study is underpowered for any comments on OCD-only PANDAS presentations. [*] The paper correctly highlights that many of the proported PANDAS patients would not be considered PANDAS if the criteria was tightened to include Swedo's observations in 1998, namely the co-occurance of anxiety, emotional lability, irritability, aggressive behavior, sudden difficulties with concentration or learning, developmental regression, etc. [*] As others have pointed out, the blind was broken in terms of the results of GABHS throat cultures. What was good, however, was that the study did track whether antibiotics were given. On the other hand, the duration, compliance and type of antibiotic, however, was not tracked. [*] There is also a reference to the non-proported PANDAS that seemed awfully PANDAS-like in retrospect. This is likely what prompted the researchers to say that perhaps their admission criteria is flawed and needs to be tightened. [*] The duration of the exacerbation is not listed. Lin notes in the 2002 paper that the duration of OCD exacerbation was approximately 3 months. So, what is the core take away from this study. Well, I think the core is the high degree of agreement on what is an exacerbation the improved clarity that Tourettes (i.e., long term tic disorders that do not have remission) is unlikely to be PANDAS continued confusion on what means "sawtooth". Leckman and others are using an increase of 7 points on a base of 16. In looking at CY-BOCS, this appears to be a change in 2-3 questions by one category (please help me folks if you know the CYBOCs score better). This is actually a relatively minor change relative to the explosive change reported by Snider and Swedo. I appreciate that the paper will be used by many to say "more proof PANDAS doesn't exist" but I think the actual item is more "if you pull samples from Tourettes Study Group, you are unlikely to get a PANDAS kid". Anyway, that's my first pass response on the paper. Buster
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I agree with all the other posters. The clinical presentation is the most important. All the other tests (including cunningham) just help round out the picture. ASO is at best a coin flip. AntiDNAseB has a very fixed time window and rate of fall is not known. Igg helps with identifying an immune deficiency, but PANDAS isn't an immune deficiency in itself -- the immune system (if anything) is overactive. with you the best, Buster
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Sounds a bit like too much flouride. Is she taking flouride supplements or any other way she's getting to much flouride?
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Hi folks, I could sure use help from those who have been through IEPs (or know someone who is a good advocate). Our dd10 has an IEP with OHI for social anxiety, OCD, Developmental Coordination Disorder, and Learning Disorder NOS. Although she is almost 95% back in terms of behavior, she has several very specific difficulties that are essentially lost skills. These are skills typically learned in 2nd thru 4th grade (i.e., the time of the PANDAS crisis and recovery). Curiously these skills are also ones that require good coordination of the basal ganglia. The skills lost are in penmanship, math fact memorization, capitalization, spelling and vowel controlled /r/'s and /s/ articulation. She had extreme social anxiety that made it quite difficult for the school to 'pull her out' to work on the lost skills because that pull out was exactly the spotlight of attention that was so devastating to her (due to the social anxiety). We were able to pull her out for speech because other kids in the class were going to speech as well (i.e., she didn't feel different by going). We just couldn't get her to the resource room for anything else. This basically meant that her IEP goals ended up being around speech with a goal to try to get her comfortable with going to the resource room for math/spelling. Only the speech goals were met. When we went for IVIG in May 2010, the social anxiety dropped considerably and her mood and comfort with others got much better; however, she still does not want to be pulled out for additional resource help. In some ways this is more a memory of a prior fear than actual fear. Curiously she's willing to "assist" in one of the younger grades (and learn in the process). We tried this last year and it worked well. It's a perception thing. She says when she goes to the resource room she feels dumb, when she goes to the younger grade to help, she feels like she's stealth learning (and helping). It makes her feel good and helps her self-esteem. I'd like to write in this year's IEP goals about learning her math multiplication table and improving her handwriting and would even like the method to be through "assisting in the lower grades". I think the handwriting will actually help her spelling and line up her math. Curiously she can easily do the steps of long division, but just can't remember what 4x4 is. We've been using accomodation thus far (i.e., use a math multiplication chart and this has helped). So, any thoughts about writing into the IEP a goal about learning the multiplication tables or being able to spell 3rd grade words (she's in 5th grade). I live in a bit of worry about causing her more stress, but also know that without relearning these skills she's going to have a very hard time in middle school. I'd like to get the goals identified and then determine if the method is to try using "helping in another class" rather than going to the resource room. Mostly seeking comments from folks who have been there. The IEPs are always a slightly stressful time with the school. Best regards, Buster
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Hi Phasmid, Our child (at the time 7 years old) had compulsive questioning around food and food facts. She started with "will this make be gain weight?" "will my arms be bigger than my sisters?" "does this have fat in it?". This then turned into restrictive eating so that when she did eat she "wouldn't weigh more than 50 lbs". In her case, she had an obsession around not weighing more than 50 lbs. There was nothing rationale here. She was outright paniced and couldn't quite express what would happen if she did weigh more. She had body image issues with odd measurement rituals trying to prove to herself that she hadn't gained weight. Her pictures and drawings became quite odd with strange proportions. This got so bad we had to hospitalize her for malnutrition because she had lost 15% of body weight in 2 weeks. It sounds like your son has a very different presentation (i.e., not the restrictive eating, but the compulsive questioning). We did three things that helped our daughter: 1) 10 days of augmentin 2) We got food into her using pediasure and calling it "medicine" 3) We put her on a lowdose SSRI I know we changed three variables at once, but the combination helped -- who knows exactly which was the trigger. It sure seemed to be the augmentin, but the SSRI and food probably helped too. We tried upping the SSRI and that was definitely a mistake as she had activation. We dropped that back down and we were back to contamination fears and restrictive eating again. We switched to a different SSRI (low dose) to soften withdrawls off the 1st SSRDI and that seemed to help a bit. Then we switched from augmentin/amoxicillin to azith and had dramatic improvement. It's hard to know which combination of stuff helped - i.e., delayed response to augmentin, getting food in her, the delayed response to SSRI, or the nearer term effect of azith, but she had dramatic improvement on the 9th day of azith. My point is that the body image issue went mostly away. This is over 2 years ago. The restrictive eating had a resurgence about a year ago and we did decide to try HD IVIG and this resolved symptoms. Not sure whether our case helps you any, but yes, body image questioning is a standard/common OCD trait. Restrictive eating is deadly and scary. Wishing you the best, Buster
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All I was meaning was that while a rising titer could mean an active infection it also can mean that there was a past infection. Both are possible. In most kids, the infection is cleared on 10th day with antibiotics, and in ~70% of cases, kids will clear on their own in 14 days with or without antibiotics. However in about 30% of cases, kids won't clear without antibiotics. In about 10% of those cases, the strain of strep is a rheumatic strain and in about 4-6% of the untreated cases the kids get acute rheumatic fever. If you take the US population of kids 5-12, this is about 42M. So we're talking ~168,000 potential cases in the US of ARF. About 30% of those get Sydenham Chorea, so the estimated amount of SC is around 50,000 cases. Of that around 70% get OCD, so that's about 35,000 cases of OCD fo the rheumatic strain version. PANDAS may be the same strain or different, we don't know. Buster