norcalmom

Great summary. I would say that ABSOLUTELY that cold effected your child. Also, healing post ivig is not linear - it an odd presentation of symptoms that come and go. Its so hard to sit back and "wait" for the healing. Its like watching grass grow - and every once and a while someone comes in and mows the lawn. I know some docs lower or remove antibiotics post IVIG - we did not do this (I did it for about 3 weeks, and in the face of returning to school in Sept - went back up to regular dose azith). Its still cold an flu season - so my only advice would be to try to keep him as healthy as possible. My son still reacts to colds - but it is much shorter (only about as long as the cold) and not nearly as accute. Best wishes for continued healing!

This is not a real scale- Maybe that number should be a 10 and under less likely. I dunno. Some on that has looked at a lot of pandas cases would have to make that call. Urinary frequency - would be in the list of symptoms that I don't show. I'd put that, bedwetting, urinary frequency, in "physical symptoms". Dr K also has "puppet - like movement" on his symptoms list. There are probably a couple other physical ones. The point is if you have tics, and OCD or OCD and Urinary frequency, you are more likely to have pandas, than if you only have OCD only. (so you get a 2 on your symptom group instead of a 1) Again - the numbers I just made up - I just threw on there without much thought - its the concept.

Significance doesn't matter.I'm not trying to say raised cam k is a cause. Just get some sort of a probability. You cannot deny that the vast majority of our kids have raised camk and anti neuronals, and this number goes up in exacerbation (from Leckman recent slide in that presentation that had to be taken down). It also gives people who are borderline something to test for, that might help them decide course of treatment. Advanced topics in Lyme disease is a great read. By Burrasco(?).He's on his 16th? Revision. And I stole the weighted scale concept from that paper. I hope the white paper is shooting for something like it.

WOW - that you could see his cough die down in just a couple days! congrats!

I'n OBVIOUSLY not a doctor. And I've sent this list below to two, because in order for it to go anywhere, it would have be become part of a comprehensive guide to dx'g pans, but here is my thought. Certain things make it more likely that you have pandas. Its not just a list of symptoms, their presentation, or tests. Its a combination. Some things matter more than others. Here is my personal list. Its weighted.It obviously needs work, and would be part of a much longer comprehensive document. ANYONE READING THIS SHOULD NOT USE THIS LIST FOR DX'G THEIR KIDS. THEY SHOULD SEE A DOCTOR. I'm just a parent that has observed some commonalities on our kids. And I've observed that many kids don't fit the cookie cutter perfect profile for pandas. _________________________ You would have a symptoms list- grouped into 3 or 4 different groups - movement, psychiatric, physical, emotional - (we all know the list....) next to each symptom two boxes to check - 1) almost always present, and 2) only present when things are acute -( which suggests episodic course) and on next page - the weighted scale. ___________________________________________________________________________________________________________ Symptoms from one group(i.e. just tics, just OCD).............................................................1 Symptoms (from 2 different groups)(ie tics and OCD, or OCD and sep anxiety) ...................2 Symptoms from 3 groups .................................................................................................3 Sudden, Overnight Onset.......................................................................................................2 Onset of all Symtoms within 8 weeks...................................................................................1 Positive Throat Culture...........................................................................................................3 Other Strep Infection, impetigo, peri-anal step...................................................................2 Raised Strep Titer..................................................................................................................2 Raised mycoplasma IgM titer..............................................................................................1 Raised Cam K II......................................................................................................................4 Raised anti-neuronals..........................................................................................................4 Immune disorder or dysfuntion....................................................................................1 An episodic course, temporally linked to infections (viral or bacterial)........................3 A worsening of symptoms due to stress or other traumatic event.................................1 Evidence of chronic infection (lyme, other...)...............................................................2 If you score a 3 or 4, you are unlikely to have panda 4-6 likely to have pandas 6+ very likely to have pandas Pediatric onset, and neuro-psych symptoms are a given. Its more about the concept than how I weighted them. Only a doctor (or swedo, cunningham, leckman,or pandas expert ) could actually really come out with such a scale. Its the concept. a tool to aid someone that know little about the disorder. Obviously all other disorder would have to be ruled out.I think the docs do a pretty good job of this. So, in my experience they have been able to say what we don't have...just couldn't spit out what we do have. Its just an idea. There are probably lots of reasons its a bad one...so please let me know..I don't even know what to do with it.

BINGO -SF Mom - Interfase - gave my son a wicked stomach ache last night. That was the first day I gave it to him. I googled it late - its a digestive enzyme used to break down microfilms...I don't know if my son will be able to take it. He had to lay down his stomach hurt. I gave it to him with dinner, and about an hour-2 hours after is when he was doubled over...BUT it went away pretty quickly. He said he felt OK at bed time. The bummer is - because he had stomach upset, I didn't give him his second does of Azith..oh well. I'm glad I didn't give it on same day as started Rifampin - sever stomache pain is a get to the hospital warning on the label. I think I'm going to take a couple to see what happens to my stomach. I'm going to skip today. My son is in a horrible mood. This is so awful...are the antibiotics working...or not working... he has more symtoms is a good thing...or indicates he needs a different antibiotic...arrrggghh. Yes - the new immunologist has given ivig to pandas kids before. He is from UCLA. We'll see what he says about ivig for my son. I actually forwarded him Dr Cunningham's latest slides (the ones that were removed...before it was removed) and he sent me some comments on her data and thanked me for sharing it. We'll see it Stanford squashes the pandas out of him or not. I'll let you know! SF- I actually did know that about your kids. I recently went back and read your old posts so I could put the story together more (I mix so many threads up). I wanted to see how bad of a relapse you had before lyme treatment started. It looks like your kids were doing fairly well (al realative) before the lyme treatment started -so perhaps - the ivig helped correct some of the autoimmune stuff your kids were dealing with prior to the lyme treatment? Did they have "traditional" lyme symptoms, that you did not know about (but discovered from lyme education?) that indicated lyme (in addition to pandas)? I mentioned on a pandas thread this morning...Cunningham's had a slide that said "Succeptible Host" and it had 4 inputs - Genetic, Neurologic (family member with tics), Immunologic, and Types of Exposures. Strep - was still the trigger. To me (although their was not audio with the slide so I could be very wrong!) this means that you are at risk if you have any of those 4 things (plus strep). And if you have 2 - probably higher risk. I would think Types of Exposures would be lyme, or other (chronic) infections. And, logically, you can't get better until you treat both. Perhaps you can get better with just treating the lyme, if the lyme is causing the autoimmune dysfunction. Problem is, none is mutually exclusive. You could have all 4.

my son HAD to take this with food. I think there are certain food to avoid - because they limit absorbtion - but others that may be OK (might even be some that increase absorbtion - kinda remember soemthing about that). You can google it. I'm pretty sure milk products and ant acids limit absorbtion - can't remember exactly, but my son (and I when I did the orovocation testing) HAD to take it with food. Its "better tolerated" because it uses the bowel instead of the liver - but I think it causes more stomach upset because of that too. ALSO - I've seen this posted on the board as well as was recommended by my LLMD -for "herxing" - (and I need to tell him) - You should not take antiacids with this. He recommended alka seltzer gold(the one without the asprin) - and specificatlly on the label there was a "Do not take antacids" warning. This wan't Dr H - it was another practicionaer in his office, and he probably didn't realize we were on Doryx when I asked for what to do for herxing. I looked it up - it isn't a dangerous interaction, it just makes it absorb less.

My son - not autistic at all - had flaps. Does it in exacerbation almost exclusively. Looks more like he is shaking something off his hands. Any way - PCR testing -from Wikipedia - The polymerase chain reaction (PCR) is a scientific technique in molecular biology to amplify a single or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence. Developed in 1983 by Kary Mullis,[1] PCR is now a common and often indispensable technique used in medical and biological research labs for a variety of applications.[2][3] These include DNA cloning for sequencing, DNA-based phylogeny, or functional analysis of genes; the diagnosis of hereditary diseases; the identification of genetic fingerprints (used in forensic sciences and paternity testing); and the detection and diagnosis of infectious diseases. In 1993, Mullis was awarded the Nobel Prize in Chemistry for his work on PCR.[4] Most tests test for antibodies to an antigen to see if the antigen is there. PCR - is looking for the genetic material of the actual antigen. Unfortunately, I was just reading that (at least in the case of mycoplasma) you need to be off antibiotics. At least for the blood test. There are also urine PCR tests. I know for our lyme provocation test - my son and I were on high amounts of antibiotics for several days - that test was looking for dead bacteria in the urine. So we took urine samples days 2, 4,6. That I think is also a PCR test (and or Dot blot - whatever that is ..and it has some confirmation they do if positive to lower rate of false positive) I think, ivig, theoretically, wouldn't interfere with it. Antibiotics might. may depend on what test. We haven't done it yet - but after a very, very high iGG for mycoplasma - we may do it ... I know.....so many tests...uggghh. below is information from a chornic infection site that lists top 5 and the speciality labs for each of the tests - 1. MycoplasmaTest Panel (CPT: 87581)—Mycoplasma species test by PCR. This is a Mycoplasma general (all species) test. Some individual tests can be ordered (Mycoplasma fermentans, Mycoplasma pneumoniae). Justification: Almost 60% of CFS/FMS and 50% of Rheumatoid Arthritis (RA) and other autoimmune patients have one or more intracellular, systemic mycoplasmal infections similar to those found in a variety of chronic illnesses [Nicolson et al. Mycoplasmal infections in chronic illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis. Medical Sentinel 1999; 5:172-176]. Ultrasensitive and ultraspecific mycoplasma tests can only be done by a small number of labs, most university or government labs that have been trained by us under a U.S. government contract. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours. 2. Chlamydia pneumoniae Test (CPT: 87486)—Chlamydia pneumoniae by PCR. Justification: Many CFS, FMS, MS, RA and other patients have this systemic infection along with viral infection(s). We were among the few labs that developed the molecular tests that are now done for this type of infection. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours. 3. Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/). Specimen Requirements: Contact laboratory for a specimen kit. Collect in Red Top Tube, separate, and send in clear tube. Store in Refrigerator until shipment. Ship within one day of collection at Room Temperature. 4. HHV-6 Test (CPT: 87532)—Human herpes virus 6 (HHV-6) test by PCR. Justification: Many CFS and some FMS patients have this systemic viral infection, and it should be tested for in any autoimmune illness. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours. 5. CMV Test 07034 (CPT: 87496)—Cytomegalovirus (CMV) test by nested PCR. Justification: Many CFS and FMS patients have this systemic viral infection, and it should be tested for in any autoimmune illness. Recommended Lab: VIP Laboratories of Reno, NV (http://www.vipdx.com/) Specimen Requirements: Contact laboratory for a specimen kit. The blood is collected, immediately mixed and immediately stored in a refrigerator until it is shipped (same day) in an insulated container overnight air courier to arrive within 24 hours.

I dont think it is - antilysoganglioside has been around for a while. There are other studies on it. So sorry to hear about your weekend Peg - I hope you and Allie are feeling a little better now. I have to say, I've been reading a lot about chronic infections and it sounds like you may be dealing with one (or several). You may want to look into PCR testing for the top 5. I think its the only way to test for chronic infections personally - the igg's tell you nothing, and the igm tell you very little and give you false sense of security if negative - as matter of fact - it WILL be negative if the infection is chronic. And, I think you can still get these done while undergoing ivig, because they don't test antibodies (not sure about that though). If she does have a chronic infection, its more likely that she has more than one...given the amount of time she's been sick. ..and more likely messed up immune function, which leads to more to infection. Its a wicked cycle. One of the slides that Cunningham had in that presentation that was removed from the board, she basically hypothesizes-there are 4 things that make a host succesptible to pandas. And, obviously if you belong to more than one of the groups, the higher the risk (and more difficult to treat). her slide said - Host Susceptibility - and it had 4 inputs - Genetic, Immunologic,Types of Exposures and Neurologic (I think she means increased familiar rates of tics - that is on another slide) ....She still has strep as the trigger in all cases.. Now, I'm guessing since there is no audio along with the slide , but "types of exposures" to me would be lyme, mycoplasma, (and other infections, or virus, or even vaccines - things we know have set pandas kids off) .

There is a new immunologist at Stanford that came up from So. Calif. a couple months ago. He was working with a pandas kid from the board - and she posted that a pandas friendly immuno was heading out way. So, hopefully it will be through him. He is running more blood work on DS, primarily looking for cause of failure to mount strep pneumoniae response (fails 13 out of 14). I won't do the vaccination - that is usually how they test. They vaccinate you and see if you make a response a couple months later. He's looking at some B-cell...something(don't have test results back or the lab order form) . My son also has low subclass 3 and overall IgG. The overall IgG went into normal range (2 points in) after the ivig. but subcalss 3 stayed exactly the same.but I guess 100-200 points under for total IgG is considered OK. Its the strep pneumonia titers that concerns him more. As for ivig - Dr H doesn't do it (as far as I know) or even know much about it. He says he has some autism paitents (gettin hdIVIG every month) as well as MS and ALS patients getting it (not sure how often). Those patients he said also have lyme, but the way he talked about it, those patients are being advised fby other doctors for their immune disorder as well. and that is who is recommending the ivig (I'm not 100% sure on that - its just how it seemed to me) Since my son is has possible autoimmune def. (we will know more this week with test results back) and it helped last time, he supports doing another. I have no plans after doing one more. It may depend upon what the immunologist advises. If immune def, he says he has patients that get low does for immune def and the pandas is better. The higher does is for different types of autoimmune disorders. Its a discussion I will need to have with him. He has an office in my town, so not having to go anywhere is sooo nice. I might have see what costs are too - Dr in petaluma another possibility. Thanks for the update - sooo glad to hear your children are doing so well! We haven't moved up to the full does of Rifampin yet, just one per day for first few days, and he's plenty irritable too. Also doing Interfase and Boluke (sp?) or supossed to be anyway. Hard to get it all into him, especially being that he is so moody. I should have my PCR test back in a week - I'll let you know. Thanks for your update.

It seems he may be having a ltitle herx, because he told me the new antibiotics are not working - and he's haveing minor tics and has wet his bed past 3 nights. Other symtoms stable. Could aslo be related to MAJOR stressful even last week for him - a blood draw. Poor kid actually wet himself he was so scared. Lydocaine on the arm and everything. 30-40 minutes for 3 nurses plus me to talk him into the chair and then of course the first try failed (that never happended before) and they had to poke around, and then take it out and try again) He informed me he actually peed his pants he was so scared wehn we got home. Kicked a nurse too. AGGGHHH - Our LLMD is supportive of ivig for him. He has very few symtoms of LD. Possible bartonella or mycoplasma (but not 100% sure on that - they are similar - and treat with similar antibiotics) so, seems for my son, his major complication is autoimmune, in which case the LLMD supports the ivig (this Dr H.). He has no typical lyme symptoms. He thinks he has lyme based upon his testing - it is unlikely that his PCR and the specific bands for lyme on IgM (the most specific was positive, the next specific was IND)..that it is a false positive. But, according to him, seems the lyme is not his major issue. Its the autoimmune reaction to virus (there is a 100% positive correlation between viral illness, and my sons symptoms). If lyme is the underlying cause, yet to be determine, may never be determined.

I've read repeatedly that this "rouge" antibody is the causes the cam K and antineuronal disfunction we see in out kids. It's 24.3.1 Also wonder about the DA17 marker (was it 17 or 18??)... Why don't they test for the 24.3.1 antibody and or the marker- anybody know? Is a high cam K or antineuronl a conclusive sign that the 24.3.1 is there?

Thanks Dawn! How often do you test your son't liver (is there a recommendation on what and when to test for?) My son's been on azith for over a year, and now we are adding this, so I think maybe we are due? No one has every said anything to use about doing this - but have read it (on here as well as in drug warning labels)

hi Borwn eyes - see the post I just made to Kbossman! regarding mycoplama. I am wondering what "significantly low" IgG is for Dr. B - can you tell me what your son't number is ?

HI Kbossman- Is this for IgG or IgM? IgM indicates current infection. IgG indicates past infection - your IgG can stay elevated for a long time. 823 isn't as high as it looks. my son's is 2450. And you can find case studies of kids with 32,000 and 80,000 on line. It could be an indication of chronic infection but you can't know that unless you can confirm it with a PCR test...OR you can keep testing the IgG titer and see if it is going up, or down (just like strep titers). There just aren't any good studies on how long these titers stay elevated. But if it is going up - that's a an indication there is still infection. The theory is that very high titer indicate that your body keeps pumping out more an more antibodies (IgG) because the infection is still there. BUT eventually, it may stop doing this. So, you can have NO titers and have chronic mycoplasma as well. There is evidence that the IgM does not go up in subsequent infections in many people. So, absence of IgM means nothing. High IgM confirms you have active infection. Rising IgG indicates infection. Stable or falling IgG indicates your body was exposed to mycoP, and developed antibodies to it (the way it is suppossed to). PCR is another way to test - it looks for the actual mycoplasma bacteria, not the antibody to it. Only speciality labs do this testing. Hope that helps. PM if you want more info on treatment of chronic mycoP.

Orlon - thank you for replying. When I use the term exacerbation - what it looks like in my child it this - he gets a cold. Within a day (or even a couple day before his cold) he goes from having 2 symptoms, which are not that severe, to having 8-10 symptoms, most of which are very severe. He will stay that way for 2-3 weeks, at which point, they will start to decrease in severity. until he returns to "baseline" or a new "baseline" of 2-3 symptoms, and the severity may or may not be the same as his old baseline. So - when you say "flare" what does that look like - she adds symptoms over a few weeks or months, or is it almost overnight?(that's what happens with pandas kids...in 2-3 days you can see it all back) When he went on antibiotics, the severity and duration of exacerbation were both decreased, but still there. When he got IVIG - the severity and duration were GREATLY decreased (so that exacerbations only last as long as the cold..days not weeks). But unfortunately for my son - he is still having exacerbations when he gets ill, and most unfortunately, his baseline of symptoms is no longer getting better and better (which is what initially happened after IVIG)..his progress has stopped, and his baseline is bad enough that we are considering another IVIG. Although still much better than his prior to IVIG baseline. I just don't want to see it go all the way back to that again. Its interesting that her antineuronals are all off the charts, but Cam KII isn't that high. It sounds like you are in the hands of a good LLMD. I have read about the pituitary involvement in Lyme...(and how improved people get once that is addressed). I hope you daughter is on her way back to heath. Its such a horrible disease - my best wishes to both of you.

what side effects or or improvements or ANYTHING I should look for? We just switched DS from Doxy back to Azith and added Rifampin to the Azith (for a few weeks)- apparently it helps the Azith work better. (as well as doing its own thing). Doc casually mentioned it might turn his urine red, as well as his sweat and tears....anyone else experience this side effect? I'm wondering how common that is. Thank you!

Yes, it can look like many things. My son has "intrusive thought OCD" triggered by me (sometimes Dad too) swallowing things (including saliva!) or any noise made with mouth - cough, sniffle, smacking lips.. One day he said - "mom you don't understand - when you do that, that image stays in my head for like 20 minutes and I can't think of anything else". Interestingly, Dr K put him in the " food issues" category, although he eats fine - he has issues with me eating and swallowing. Most kids have issues with themselves eating and swallowing. I also read something on line just before pandas dx - a pandas mom describing her son as needing her close by at all time, while simultaneously being repulsed by her. And that was my son too. The psychiatrist that dx'd him said - a lot of kids have the disgust part of OCD (germs, or certain textures patterns) but don't get the ritual part of OCD (washing hands, or touching things a certain number of times...evening up - so the idea of germs disgusts them, so they perform a ritual to rid themselves of it - washing hands for 50 seconds, or 3 times in a row.or touching somehting..) so it harder to see that its OCD, but it is.

See pages 9-11...its page 11 where the "weighted values" come in. First two pages are symptoms. Page 11 is the Diagnostic Checklist. So our symtoms - ie...tic, betwetting..(I think this part already exists in several forms - Dr K's site as mentioned abotve, or Dr Bs) and then last page you combine symtoms with tests (and perhaps the presentaion of the symptoms - "over night" , "over several weeks", or episodic course, following strep infection... This lyme document is GREAT - its what I envision the "White Paper" for PANAS should be (that I believe we will never see) . http://researchednutritionals.com/FactSheets/Burrascano's%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

The NIMH's list of criteria dosen't actually include "sudden onset" (I just checked this after review the old post about this someone cited above)...However the very first paragraph on the page says "The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection. "...and Swedo seems to be harping on this aspect recently (as EAMom pointed out from the Blogtalk interview). And, I'm wondering if it isn't some back room bargaining with the toruettes people - "you get the sudden onset folks, we get everyone else". I know, I'm jaded. Having sudden onset being the lead characteristic delayed my son's treatment, for at least several months. And it took a conversation with another pandas parent, that has talked with hundreds of pandas parents, to convince me that what my son had was pandas. Her definition of the word sudden was "softer" than mine. When I think back now, one of my early appointments (3rd?) was with a Dr of integrative medicine and I said " I don't know what's going on, but I think its been going on for a long time". He dismissed me as having pandas (never brought it up, and actually quoted me when I told he a few months later that my son was DX'd as pandas)..Why did I say this? Because my son had "mini exacerbations" prior to his major explosion. He had 2 or 3 years where he would "go through a phase" or "grow out of" some behavior. Fear of water. bed wetting, adhd - that would not be an issue for 6-9 months, and then would. Sensory issues (that would come and go). The doctor did not question me from a stand point of "episodic"...nor did I accurately represent his OCD - because I thought it was "sensory integration" - so I was describing extreme irritability and intrusive thoughts by saying things like, "he's really bothered by sounds" - lille sounds, like me swallowing food, or when we reading next to each other in my bed at night - and I hit the button on my kindle that turns the page" What my son had was 2 or 3 mini exacerbations - all fell within "normal" childhood behaviors. And then, he had the EXACT presentation found in SC - a strep infection (a poorly treated on - peri anal strep that I threw some antibiotic ointment on a few times, though just irritated from not wiping or washing well enough down there - he's a 9 year old boy who plays a lot of sports, never thought TWICE about this rash...was never asked about a rash by any of the 5 doctors I saw) several weeks after that he started "intrusive thoughts" his eating thing OCD - but he appeared to just be a kid that was bickering with sister and family at the dinner table as this developed. That, and bedwetting, went on for weeks before the tics started, and nightmares, and obsession with death, and insomnia. But even all of that - I could find excuses for (as could doctors) - its probably a transient tic, he's probably stressed about the death of his grandfather (that occurred months prior, whom he hardly knew because he lived on opposite coast, and was very sick for a very long time)...And add to that the fact that his tics were not that bad at home - he was doing them, but mainly when going from one activity to another, but once he started inon somehting, he didn't do them. And, according to his teacher, he didn't do it at school. Then one day, both she and I saw him and it was CRAZY his tics were out of control - his tics were triggerd by being in big open spaces. By his THRID exacerbation - yes, I could see that within days all of his symptoms would happen at the same time, within a couple days, from a couple minor symptoms, to very pronounced and added about 7 new ones. But before that - as for timing, and what an actual symptom was, well, didn't actually know that bedwetting, or asking for the bathroom key, or nightmares, or that weird butt rash he had...were all symtoms, so I didn't even connect the dots. Certainly no regular doctor would. I've been thinking of something - the Lyme quesitonaire I had to fill out...then I saw the same thing in a long document on "advanced topics in Lyme Disease" the same questionare - only it was weighed. I think it was very helpful to me just to understand how that disease is diagnosed by the doctors. I think we could use on of those. Basically, if you are under a "4" you probably don't have lyme. Then theres the 4-10 range, and then 10+...where you almost certainly are dealling with lyme disease. Some things can give you a 4 immediately - like a positive Western Blot. But, if you don't have any symptoms....you are still a 4. (and this is true - your body can create the antibodies, you test positive WB, but you have a superior immune function and your body has rid itself of the disease). In my mind - that would be like a positive Cunninghams' test. Add in Bedwetting (value=1)that coincides - you're a 5, add in OCD that started at (around) the same time (weight this higher, maybe a 3 or 4) you're now an 8, add in a positive strep titer, or positive lyme test(2) = you're a 10 - probably have pandas. I'm going to talk to someone with access to some medical advisors on this, and see if we can put something together.

PS - please let us know what you find low dose vs high dose!

WOW - that is GREAT! Congratulations! And thanks for breaking in Dr McGhee, and sending his info our way!!

I was just reading a post by EAMom responding to Swedo's Blogtalk radio interview. Then, I went back and listened to the interview. And what Eamon said is something that has ALWAYS bothered me. What...is sudden? It seems that even Swedo contradicts herself when describing PANDAS onset, and what is sudden to one person, may not be to another. 1) where are the studies that separate those that went from 100%, perfectly normal, non-quirky, no OCD tendancies EVER, to EXCORCIST overnight vs kids that developed pandas symptoms over several weeks? Lets not let the researchers off the hook on that one. You can't say it only applies to one group, unless you study it compared to another group. 2) One day he didn't tic, the next day he did. So in that respect, who ISN"T sudden? 3) In Swedo's presentation at the Mind (I think its that one) she says that pandas, like SC, usually follows a course -a strep infection- then up to several months later - OCD - then - later still - tics or chorea. What's sudden about that? That is the FRIST incidence, and then on subsequent exposures/infections - the symptoms come closer and closer to the infection, until finally, you can predict that the child will soon culture positive based upon behaviors, before the throat is even sore. So, those that didn't notice anything until the "exorcist" syndrome - probably missed the first few exacerbation (and strep). 4)In her talk she mentions that Tanya Murphy has done studies of "mini exacerbations" - and these kids later have major episodes of pandas. If your kid has had mini episode, and 9 months later it is major episode - what is sudden about that? - you're excluded from "sudden onset". You had these symptoms before. 5)Most kids have symptoms at baseline, which get worse during exacerbation (and they may add symptoms) what's sudden about that? 6)"normal" childhood behavior and pandas, sometimes, look similar. Terrible twos (for us it was threes)..."anxiety related behaviors" that you attribute to stress(divorce, moving, new school, Daddy traveling, family death). You miss the initial onset, or next episode( because it looked "normal" - and now your child has some "baseline" ocd. You're now excluded from "sudden". 7) Kids hide stuff, and triggers, may be outside the home. It may be that the symptoms came on rather suddenly, but a parents awareness of the symptoms was more gradual. 8)She notes that in her first study - she made one criteria "episodic". And admits now that this should not be part of the definition. It was a criteria, that helped it make it more LIKELY that the child have pandas (so her study would have better statistics - which is fine) . JUST LIKE THE TERM "SUDDEN ONSET". If they want to use this term in diagnosing pandas kids - they need to define it better. Its too subjective. More importantly - if you catch your child early in mini-exacerbation, as described by Murphy, or, at early stages of VERY first episode, where strep may be months prior to the first symptom, your child will go untreated, they don't meet the pandas criteria. And, unteated strep, untreated pandas, is not going to make it easier to treat next time. In the interview - she even cites studies in Brazil on SC patients- SC is still a problem due to the strains of strep there- and after 3-4 untreated episodes of SC, it is found to cause treatment refractory OCD. SC is the best model we have for pandas, so while there are no pandas studies on this yet, I think we have to assume that could be the case with pandas as well. I'm not saying there isn't room for it in diagnosing. It makes it more likely that your child has pandas, like a positive strep titer. But, we certainly should not be excluding kids based upon on interpretation of this word. Every kid deserves a full work up to see if they have infections causing these behaviors, and in my opinion - immune work up that includes a CAM K II and anti-neuronals - to see if auto-immunity is likely playing a part.

how long has she been in this state of exacerbation? I'm so sorry you've had almost no relief. Very scary. Are you thinking about ivig? I think with immune deficiencies that are significant, most insurance would cover it.

similar to lyme, according to what I've read. 6 weeks of Doxycycline (usually, but not always...) and then rotate antibitoics -6 weeks on, 2 weeks off. Doxy, Azith, and other anitbiotics that are considered "intracellular"...and sometimes augmentin or ammox used in the 2 week off period, or in conjunction - the entire time. Titers are a problem - most people don't make IgM for subsequent infections. And IgG can stay elevated for years, after an infection (this from last immuno visit) but I can't find any studies on that. So, titers don't measure much except if you child is in the middle of an infection - and its URI. Chronic - is not the same. Just got back from blood draw ..what a nightmare. I'm gong to have to get something to "take the edge off" next time (30 minutes in the little room with 3 nurses and me to get him in chair...so tense - vein collapsed - kicked a nurse, I thought he was going to pass out, he was hyperventilating and crying. He just infromed me that he was so scared he wet his pants a little) At least I'm going to need something to take the edge off. He's 12 in 2 weeks - weight almost as much as me - we aren't talking about a little kid. He always been nervous - but his was BEYOND- he's been freaking for days. And he told me in car that it isn't just the fact he hates needles, its the pandas that makes it so he can't think of anything else when he's oging to have ablood draw (even though he knows it isn't that bad..) I