Buster

I never know whether people want source material or just answers so I'll do a bit of both. Azithromycin is anti-inflammatory : see http://jac.oxfordjournals.org/cgi/reprint/55/1/10 IVIG is highly anti-inflammatory : see http://www.sciencemag.org/cgi/content/abstract/320/5874/373 Advil is anti-inflammatory : see http://www.jneuroinflammation.com/content/...2-2094-1-21.pdf The best research at this point indicates that PANDAS is a subgroup of children with OCD/tics where there is : an immune response to GABHS by B-cells creating an anti-neuronal antibody (see http://www.pandasnetwork.org/Cunningham.NMpaper%5b1%5d.pdf ) a failure of the immune system (T-reg/B-reg) to stop the anti-neuronal antibody (see http://www.journals.elsevierhealth.com/per...0804-3/abstract ) a breach of the blood-brain barrier that allows the antibody to interact with neuronal tissue (see http://www.jimmunol.org/cgi/reprint/178/11/7412 ) GABHS can alter the permeability of the Blood-Brain Barrier (see http://iai.asm.org/cgi/reprint/21/3/753.pdf and http://www.neurology.org/cgi/content/abstract/54/7/1433 ) So, antibiotics can help to prevent an infection that might lead to #1 and reduce the inflammation in #4 PEX, IVIG can help to address #2 and interestingly #4 (see http://iai.asm.org/cgi/content/abstract/64/12/5395 ) Azithromycin, IVIG, prednisone, advil all seem to reduce inflammation and help close BBB in #3 and in #4 There is pretty good evidence that if it isn't PANDAS then the treatments above don't work (because there aren't any antibodies to go after) (see http://www.ncbi.nlm.nih.gov/pubmed/11026187 ) Buster

Monarchcat, I agree. We noticed quite accidentally an improvement on Advil but strangely not on Aleve (we were trying to see about extended release). I later learned that Aleve didn't contain ibuprofen. So it looks like something specific to ibuprofen. Back when I was researching this I found several nice papers on Cox-2 inhibitors in Alzheimer's Disease. I'll track them down. Our immulonogist did think what we were seeing then and from IVIG may be mostly due to the anti-inflammatory properties. He even thought that perhaps the effect we were seeing from azithromycin might be the anti-inflammatory property. It's an interesting thought. Regards, Buster

I guess the question is whether it was plasmapheresis or plasma exchange. If it was plasma exchange (i.e., IVIG and Plasmapheresis) then you would have gotten rid of most of the "bad" antibodies and added in the "good" antibodies. I learned about the difference here from mom_md, but it wasn't clear to me from your description which one you had. It did seem from your history that your dd did well when within 4 weeks of IVIG. This could mean that the anti-inflammatory propoerty of IVIG was helping, that the antibodies from IVIG were helping, or she was re-exposed to an antigen at around the 4 week mark. Did you check siblings for GABHS? Yes, PEX won't help that. I've been seeing them stay on high levels of prophylactic antibiotics as preventative to getting another sentinal event. They use PEX to get rid of the antibodies, then hold off antibodies by preventing re-exposure. Buster

Prednisone tastes terrible and crushed up is even worse. Pred can cause some really weird behavior itself. Left me feeling jumpy and irritable like my skin had nettles. dd9 didn't seem to have a problem with it. Buster

It wasn't clear to me from your posts whether you were thinking that the IVIG antibodies had worn off (after 4-6 weeks) or whether the prophylaxis wasn't working and your dd was getting another infection. The timeline is certainly interesting. Did you get tested for PID? Were Igg subclasses all in good shape? I saw that on Nov 13th there was a fever -- do you think that was viral now? Dec 29, 2008 -- dramatic change in behavior. Exhibit severe SPD and tantrums. Deterioration in motor skills June, 2009 -- start prophylaxic antibiotic ... July 19, 2009 -- 5 day burst of steroids -- good results Aug 1, 2009 -- IVIG round 1 (not sure of gm/kg) Aug 4, 2009 -- improvement (startu 200mg Azith 2x weekly) Aug 28, 2009 -- substantial improvement Sept 5, 2009 -- symptoms back with high OCD Sept 6, 2009 -- IVIG - 2 Sept 18, 2009 -- 200mg Azith x 5 days Sept 28, 2009 -- 200 mg azith 2x weekly Oct 9, 2009 -- relapse -- high OCD Oct 13, 2009 -- try 30mg/day pred for 7 days, reduce to 24 mg/day pred -- no visible effect. Oct 22, 2009 -- PEX in Georgetown Nov 13, 2009 -- Fever Now considering IVIG round 3 with possible IV antibiotics Regards, Buster

Hi FallingApart, Can I check your history here? It sounds like: Dec 29, 2008 -- dramatic change in behavior. Exhibit severe SPD and tantrums. Deterioration in motor skills July 19, 2009 -- 5 day burst of steroids -- good results -- no antibiotics??? no propholaxis?? Aug 1, 2009 -- IVIG round 1 (not sure of gm/kg) Aug 4, 2009 -- improvement (200mg Azith 2x weekly) Aug 28, 2009 -- substantial improvement Sept 5, 2009 -- symptoms back with high OCD Sept 6, 2009 -- IVIG - 2 Sept 18, 2009 -- 200mg Azith x 5 days Sept 28, 2009 -- 200 mg azith 2x weekly Oct 9, 2009 -- relapse -- high OCD Oct 13, 2009 -- try 30mg/day pred for 7 days, reduce to 24 mg/day pred Oct 22, 2009 -- PEX in Georgetown Nov 13, 2009 -- Fever Now considering IVIG round 3 with possible IV antibiotics It sure looks like you are seeing a fall-off of antibody effect at 4 weeks -- or she is getting reinfected every 4 weeks or (i.e., prophylaxis is not working) or ... something else. Is the history and antibiotic dosing right? Buster

That's great!

Yes, she even started verbalizing a bit on prednisone. She only had the 5 days, but even her teacher noticed how much better she was. On the 5th day, though, she started getting sick with fever and cough. I mostly wanted to let you know that we're thinking about you and wishing there was some way to help. Hugs first and then a couple questions ... Are you thinking of doing PEX and then IVIG? or just PEX (if you can get it)? The tricky part for your pediatrician/immunologist is if they did find PID then they could order the IVIG for that. It's the ordering of PEX (which isn't recommended for PID) that's probably problematic. They sort of have to find an autoimmune disorder (like PANDAS) to get PEX covered. It's probably worth talking with mom_md about how her's was done. What I was wondering is whether your ped/immunologist was willing to do IVIG rather than PEX (I know in your case getting both is probably better) but was wondering if he was shying away from IVIG or just PEX. We did end up just going for IVIG with good effect although not the immediate benefit I hear others had with PEX -- we had 2 weeks of turning back the pages. I think our CaM Kinase II numbers during exacerbation were similar to yours -- although it sounds like yours stay chronically high. If you've already resolved on PEX, sounds like a road trip :-) Seems amazing there's no one closer who's studying this... Buster

Oh well. it was worth a shot. The exposure was over 3 weeks ago. Did any of the parents at the sleepover say that their kids got strep? That would be another good test. Probably could use the sleep That's great. Just a reminder that it's still a research study and they're still working out what the results mean. We think they are finding some separation of kids with Sydenham Chorea, kids with PANDAS/OCD/tics and non-PANDAS OCD/tics. Nice clip. Looks like she was pretty calm about the whole thing -- what a trooper. Thank you for posting the updates. You probably don't need more information about PANDAS... but... since you are being so great about getting the message out there... a couple things: PANDAS defines a subgroup of kids who are diagnosed with OCD and/or tic (i.e., it defines some symptoms and isn't a bacteria or virus.). It's thought to be caused by an antibody response to group A streptococcus (a pretty common bacteria) The antibody is thought to interfere with neuronal signalling causing tics and OCD -- but the research is still really early here It is thought to be very similar to Sydenham Chorea -- a symptoms of acute rheumatic fever Luckily it doesn't seem to cause heart issues There is lots of debate about PANDAS and it's possible that you'll receive a lot of mail that she's just got a vocal tic (i.e., that there isn't a cause). Most of us on this board don't accept that explanation because we observe really different behavior correlated with strep exposures. Whether it's a tic, PANDAS, TS or something else, we really hope your segments and your daughter's courage encourages more research here that helps both Lauren and other kids. Regards, Buster

I found several, but here's one that is freely available : http://jac.oxfordjournals.org/cgi/reprint/58/1/117 Think of it this way, suppose your immune system creates these antibodies but they don't really work so good against the real strep. Well now you get someone else's antibodies and it correctly marks the antigen with the flag saying "kill this". The antibiotics keep the antigen from replicating too fast and now your macrophages can find the marked antigens and engulf and destroy them. So without the IVIG the immune system just couldn't seem to mark the bad stuff (wrong antibodies). Now with IVIG, the borrowed antibodies mark the "bad stuff" for elimination and the host immune system can wipe it out. Antibiotics are more effective because you finally have clearance. Anyway, that's what I think is going on... Buster

I'm so sorry to hear the news. So is your doctor willing to say she needs PEX but can't preform it? That's something you could use... I know you are going PEX to knock down the antibodies (and hopefully see a more immediate improvement than IVIG). Did your daughter have any improvement on pred?

Hi folks, I somehow missed the posts back here -- sorry. I don't know what it means exactly. There is a % number and an absolute count number for Eosinophils. I've been wondering about EAMom's comment that the reaction is like an allergy (given the suddenness of symptoms) and while we clearly see the B-cell antibody activation (in the CaM Kinase II #), it made me wonder if the body was also creating Eosinophils and elevated IgE. No idea if it means anything or just that kids get a lot of allergies too -- but our daughter was elevated for Eosinophils each time she had a major exacerbation. Generally Eosinophils are often high with allergies and for some bacterial infections. It just caught me as something really odd. When I spoke to the immunologist he dismissed it saying "everyone he sees has high eosinophils" -- he's in the allergy center :-) Buster

A couple other oddities, some of the contamination fears did manifest way back when she was 5.5 for 3 weeks. She had a compulsive handwashing episode (red chapped hands) and needed to cover her mouth in the bathroom for fear she'd swallow a fly (perhaps you know the nursery rhyme). At the time we thought this just a "bedtime fear" but going back in my notes she also needed to walk 15 feet behind people for those weeks because she thought she might catch cancer from the neighbor's "grandma". It was just odd but there had been a child's death in our neighborhood so we put it down to, well, childhood anxiety. She did get over it and we didn't think about it. When I look back in the medical logs (which we pulled), she got amoxicillin for a URI after these events and after the amoxicillin the behavior disappeared. Still could be coincidence, but probably these were initial episodes. Minor daytime urinary frequency -- first episode (4.5) Contamination fears -- second episode (5.5) Severe OCD and Anorexia Nervosa -- third episode (7.5) Buster

Oh, we had one like that ... When our dd9 was at her worst, she would do these really odd things like shout out: "Go away, but you can't leave" "I need you here but I'm mad at you" It was all the contradictions. It was at the worst of her OCD -- she could sort of see the contradiction but not really (at the time she was 7). It was a bit scary at the time because you could see how distressed she really was. She says now that she wanted to be alone and slam the door (like any other angry 7 year old) but couldn't stand the thought of being along (strong separation anxiety). So frustrating for her and us. Buster

Wow and so great to hear (aside from the GI part)... but wow! Yippee!

Hi Momtocole1: We had similar numbers and at least in our case this was not considered an IgG deficiency. So, in some ways this is good news. Monthly IVIG for a primary immune disorder is a huge issue and huge expense. Same here. Our immunologist said he'd only be concerned if he revaccinated and there was no rise in titers. We weren't about to revacinnate given everything else that was going on. That's the Anti-DNAse-B -- if it is rising it indicates that there was a likely strep infection 6-8 weeks prior. Since your last strep was likely in February, this number is probably not meaningful. Yup Just checking, on things -- it looks like the only cultured strep was all the way back in February. About 3 years ago, your ds was diagnosed with PANDAS when he was 8. In February he got a strep infection and had sores in the corner of his mouth You tried 10 days of Keflex with good effect, but then after finishing the dose his symptoms got noticably worse You tried motrin (advil) and this seemed to help but couldn't be sure You then tried 14 days of azith and then switched (?) to 600mg Augmentin By October, it sounds like your son had strong OCD traits and was retracing his steps and raging. He was having eating issues due to the amount of retracing By mid October, you tried 1000mg 2xday augmentin and things seemed to calm considerably with retracing stopping. You had blood work end of October showing low ASO and AntiDNAse B -- but since last strep might have been Feb these may be irrelevant. You also had Cunningham tests showing Cam Kinase of 165 -- I wasn't sure if blood draw was pre-1000mg Augmentin Things were going well for the past month and then on Nov 14th, there was a big exacerbation where he says his throat hurts. You think it might be viral since he is already on high-dose augmentin Then yesterday, things sound like they got better where he's able to wear certain shirts again However, you still notice that he is very wound up at night, having insomnia, and his eyes are sometimes dilated. Is this about right? Buster

I have been so hesitant to respond to this post because it asks the question I worry deeply about... whether it all comes back... Talk about my fear... I truly think that PANDAS is going to be a watershed moment in the study of psychiatric diseases and change the entire discussion of the pathogenesis of OCD and tics. Buster

Hi Angela, welcome to the forum. Yes, we noticed this with our daughter too. She also fell asleep almost right after the advil in our case. In our case we tried a couple of antibiotics and then realized we needed to clear strep from the house as apparently her sister was cross-colonizing her. On 250mg/day azithromycin we saw dramatic improvement at 10 days of azithromycin and kept her on prophylaxis. Hard to say, but withdrawl from any SSRI is tough and should be done gradually. In our case, our daughter was on Lexapro and had akathesia. I think the theory in PANDAS is that they have difficulty with seratonin and dopamine regualtion and not too much or too little. However, as far as I know, the SSRI side isn't well studied. Our dd9 is still on a low dose of Prozac, but we too worry about whether she needs it now. We've been holding off on changing any variables. Prozac at least is self weaning. Be careful with Celexa because it does have significant withdrawl symptoms if a dose is missed. regards, Buster

Hi LaurenJohnsonsMom, I really, really encourage you to get a throat swab for strep first. It takes 5 minutes for a rapid and 72 hours for the culture. They can do the swabs together. If the rapid is positive, that's enough to get you on antibiotics. This has extremely high risk with low risk. Are you or your doctor thinking that she has brain damage or ADEM? It doesn't sound like it for your symptoms. MRIs are really hard for tic-y kids and Cat Scan's have a lot of radiation. It would seem these would be good if you've ruled out the easier tests. Also if she's on any psychotropic drugs already (like SSRIs or atypical antipsychotics) you need to be careful with any sedative. Please ensure you inform the pharmacy of anything your daughter is currently taking. Regards, Buster

Hang in there. It will all come out good. We went for the 1gm/kg/day (i.e., go in for 2 days). They are long days no matter what. Buster This is a great idea. I usually just bring my binder, but I'll send the most important information ahead of time. And thanks for the encouragement. I feel very worn down at this point, and it's getting more and more challenging to stay positive.

Hard to say. I found that he, like many other doctors, are very pressed for time and it's super unlikely he'll read material until you are there with him. Then realize he'll probably send in some graduate student who will take a history -- don't try to convince the grad student -- he's just there for the history. Hand the grad student (fellow) your history or recite it to him. It's odd, but they really like to hear it orally and don't worry about it, just read it out loud or use it as a crib sheet. Be crisp, be clear, go at a comfortable writing pace. He'll probably interrupt you and ask: * any history of rheumatic fever * any subcutaneous nodules * any recent trauma *... It'll drive you a bit nuts, but keep it simple, direct and matter of fact. Eventually the grad student will go out and then bring the doctor in. It reminded me of being in a car salesman situation :-) Our 20 min appointment took almost 1.5 hours and our dd was going a bit nuts waiting around -- the good part is the doctor got to see some of the odd behavior. My point is that the doctor sees a lot of folks who have likely been misdiagnosed by others (hence why they are seeing him). He comes across as discounting parental observation and not thinking other doctors know what they are doing. Don't worry about it. Realize this is just his style. In our case, he needed to run all his own blood work to rule out something else before we could progress to the next stage. It was extremely frustrating but we just swallowed hard and walked through the steps. He held all the cards so we just kept very rational and direct. Remember, he can always tell you to go back to UCLA so he's an approval body and probably doesn't want to be the PANDAS doc. On the CaM Kinase II, he knows the material, and also is very aware that this is a research study. This means he'll use it as strictly another piece in the puzzle rather than being diagnostic. The anti-lysogangliosides are probably going to be more meaningful to him than the CaM Kinase -- but it does help that the Kirvan papers are in Nature and JNI. My strongest recommendation is to see him in person, let him speak, listen to his arguments and let him know your reasons. I know it all seems like giant toll-booths on the way to a solution and lord knows we were frustrated by how many hoops or gates to jump through, but if you just treat it like it is just a process and you stay calm, I think you'll get a good result. Wishing you calm... Buster

Just as a warning, liquid Clindamycin is about the worst stuff ever -- it will make your house smell and practically impossible to take. If you are going with Clindamycin-- really truly try to get the pill form. An interesting property of Clindamycin is that it does have excellent skin penetration so will likely get anything on the skin or mucosal lining too. We had to abandon using it with our daughter and we switched to azith which was effective.

First and foremost, go see him. He's a lot easier to convince in person. We did 1g/kg but on two consecutive days. Perhaps he'll do that too. The high dose in one day takes forever at the standard infusion rates and you'll be in for > 10 hours if you try it in one day. We were trying for the single dose rather than monthly since we did not have the Selective Antibody Deficiency diagnosis. Go see him in person. He sort of complained that he really can't treat someone without seeing them :-) I actually agree with that so really, truly recommend seeing him if you can. Remember to recruit him otherwise he'll probably send you back to UCLA.... By the way, LP is quite expensive for IVIG (like 10x) -- be glad for insurance... Buster

Just an interesting paper that indicates that doing the rapid and culture swabs together (i.e., at same time) is more effective than at separate times... Just interesting... found it while looking for other stuff... Buster http://jcm.asm.org/cgi/reprint/38/1/279?ma...ourcetype=HWFIG

Wow... Let's start with the basics: What was the prophylactic dose of augmentin? Did you ever miss a dose during prophylaxis? A single missed cycle (i.e., outside the 12 hour window) will leave your child vulnerable for 2 days. Was this a liquid delivery or pill delivery -- I ask because they affect colonization differently. Amox was useless for us -- zith was very helpful. If dd5 broke out in a rash, has that been checked to see if it is viral or whether it is scarlet fever? Definitely worth having checked. dd5 broke out in a rash 7 days into augmentin, but it appeared to be viral (not related to antibiotics). She later got shingles (yes in a 5 year old). The kids will ping-pong if one is clear and the other is not. If there is any way for the lab to send out to Mayo Clinic for emm-type that would be outstanding. Sounds like you've got one really nasty strain there. Yes. and yes. In a research setting, culturing for clearance is done on the 20th day from commencement of the treatment (i.e., from last positive culture that was treated). Great question and it appears you probably won't clear with "normal" dosage of antibiotics. It appears that this is a problem for many on this forum. Antibiotics rely on your immune system to be able to take out the bacteria. The antibiotics slow it down, but the immune system has to take it out. From what you wrote it sure would seem that your IgA levels are low - are they? Are symptoms off the chart for your PANDAS kid or are you mostly worried about the strep? We had the same thought. We tried to put both our kids on prophylaxis but our pediatrician wouldn't do that for the non-PANDAS child. Buster