peglem

I'm never quite sure if I have things figured out right but, as near as I can figure Bcells are like little antibody factories...once they find a target antigen, they assemble an antibody for it and churn out replicas.

Yeah...I'm curious too as to why she is choosing IVIG for your son when she has gone with PEX (or plasmapheresis or whatever it is called!) for the others. Let us know if you gain any other insights on that. When she spoke to my daughter's pediatrician on the phone, she recommended PEX, but IVIG if you can't get that....Is it related to age (my daughter is a teen) and/or length of illness and/or severity of symptoms? Or could be related to Cunningham results?

I can't speak for anyone else, but we did immune testing to try to qualify for IVIG through insurance. IVIG is a treatment for immune deficiencies-to provide the body with the missing or deficient IgG. There is NO WAY we can afford IVIG out of pocket. I don't know if Dr. Latimer does phone consults with patients, but my daughter's pediatrician called her (on the advice of Dr. Cunningham who he also called), and she returned his call, same day and consulted with him. I prefer that to my going to a doctor and saying, "this neurologist in Virginia says..."

SF MOM: But, if they have PANDAS, they HAVE to be making antibodies to at least some strep antigens or there would be no antibodies to cross react with the basal ganglia cells. My daughter has chronic strep and has some IgA and IgG subclass deficiencies, yet she passed the pneumoccus titers test (she responded after 2 vaccines) So, her body is able to mount an immune response to that, and yet can not clear itself of GABHS, and yet shows an immune response to GABHS (if the Cunninham tests are any indication. I just think there is not enough known about the relationship of the pneumoccal titer response to GABHS to make any definitive judgements. But, if failing that test gets you the treatment your child needs to recover from PANDAS...YEA!

Faith, I understand your confusion. If I were in your shoes, (you'd say, "hey! who's this weird lady wearing my shoes?) I'd get the Cunningham blood work done. Although its not officially diagnostic, it will give you another piece of the puzzle.

If the child has an immune deficiency, its possible to get insurance to pay for monthly IVIG, not for PANDAS specifically, but to correct the deficiency.

This has been happening to my daughter in excess of 10 years. Her CamK level while she was in "remission" was 242%. Its hard to realize she's in remission til we see exacerbation... Hoping to do IVIG soon.

Wow, thanks, Buster! Not just for sharing the research but for making it understandable to us.

We just got ours today, I'm not sure how many days, but it was less than a week since I ordered it. Its very cool! I'm touched that people are kind enough to do this for kids who are facing this procedure...I'm scared, can't imagine how my daughter must feel. Anyway, I'm going to wait til my daughter goes to bed to look through it carefully (she hasn't seen it yet), so I don't know if it has stickers...but I think you'll want to look through it 1st anyway- lots of materials in there.

I think that means Kurlan doesn't have a blood test for PANDAS (like Dr. Cunningham has). But, I think it also means that they have not been following the research on this...Cunningham's studies and Maddie Hornig's mouse model- But, this study was most likely started before those and I wonder how long it takes between submission of articles and publishing?

Here's the pubmed abstract: http://www.ncbi.nlm.nih.gov/sites/entrez

I think there is too much going on to get a clear indication. The IVIG should have helped with the messed up dopamine in his basal ganglia, if it worked. But, then you have risperdal blocking some dopamine...so then it'd be hard to tell the effect of the IVIG. Then throwing zoloft in there increases the amount of time that dopamine is stimulating receptors...it all gets kind of mirky. I wonder if he needed to come off the risperdal after IVIG, and it was the risperdal in the face of basal ganglia corrections (from IVIG) that was causing whatever prompted the doc to add zoloft. I feel like I'm not saying this right, but I think after the IVIG, I'd want to see how he does w/o external dopamine manipulators. This is all based on my own supposition....just brainstorming ideas.

I think you're right to look at the meds. I'm wondering why the zoloft was added, since it sounds like he was doing so well. Wanted to share my experience with risperdal. It worked pretty good (not great though, too much going on w/ the PANDAS to know exactly what was doing what) at 1st, maybe because it helped her to sleep better? After a few months though, the effectiveness seemed to wear off, and a month or so later it actually seemed to be increasing rages and irritation- taking her off of it at that point really improved things. As you probably know, risperdal is a dopamine blocker. Zoloft does have some dopamine re-uptake inhibition effects as well as being an SSRI... Sure hope you get things straightened out for your guy and this ticcing doesn't get worse!

The point of this study was....?????? I don't get it. They were trying to prove that people w/ OCD/tics have not had more exposure to strep than other people???!!!! I just don't understand what would motivate anyone to even do this study and then pretend like it refutes Swedo's studies. Do they really not understand the meaning & the whole point of Swedo's work?

I think a lot of confusion over the value of the ASO/AntiDnase titers comes from the fact that Swedo used those in her studies...BUT, because she was only studying subjects w/ OCD/tics that correlated w/ strep infections, she needed to document strep infections in her study candidates. If the infection had already been resolved, so that a positive culture could not be obtained, she could use high titers as documentation that a strep infection had, indeed happened. She did not study kids who did not have documented strep...it was study criteria. Its only purpose was to confirm a past strep infection. Somewhere along the way, many doctors and others have misinterpreted this as a test for PANDAS...and negative titers to mean negative for PANDAS. This is not correct...a positive rapid or positive culture is in many ways better than high titers, because you know for sure when the strep infection actually occurred (although not for how long it has been going on). My daughter saw a pediatric rheumatologist a few years ago. She had beaucoup documented +strep tests, correlated with behavioral exacerbations. But he said it couldn't be PANDAS because her titers were too low...THAT was frustrating!!!!

The titers are antibodies that your body makes and they are specific to what ever substance they are made to get rid of. ASO titers would be antibodies the immune system makes specifically to attack (or mark for destruction) streptolysin O, which is not the actual bacteria, but a GABHS by product. Dnase is also a by product of GABHS (don't remember what it stands for). So, if the strain of GABHS you have is producing those 2 things, the immune system should be cranking out antibodies to get rid of it. I could be wrong, but it seems to me like the low titer (ASO & AntiDnase) kids are the ones who have chronic strep- "carriers" who just don't seem to be able to get rid of it, and do not seem to get typical symptoms. I think the ones w/ higher titers are kids that get strep, but recover from it until they are exposed again. In either case the PANDAS is not caused by those particular antibodies....the Cunningham study seems to indicate that it is caused by some other GABHS antibodies.

I wonder, wouldn't it be cheaper to just treat everybody (including the dog) with antibiotics? For us, that would be 6 labs run for strep- insurance would pick up partial on that, but we'd still be stuck with a pretty hefty bill.

I agree with your doctor! Many of our children come up negative for ASO and antiDnase...we don't know why. A negative on those is meaningless (as far as we know, although it may indicate an underlying immune issue- not making sufficient titers) and a positive just means they've had a recent strep infection. I don't know where socal is. What state are you in? Oh, just realized..Southern California?

Could it be.....that every person who has tested positive for H1N1, would then not be a vaccine sale? When did I get so cynical?

Kimwal, PANDAS is still considered a clinical diagnosis- the correlation of behavioral exacerbations with positivity for strep. Sometimes if you missed the strep when it is happening, you can run ASO and AntiDnase titers (these are tests for antibodies to strep exotoxins that can persist in the system after the infection and high levels indicate a recent infection in the past) which generally insurance will pay for...but these titers are not testing for PANDAS, only for a possible recent strep infection. Low ASO and AntiDnase titers mean nothing (does not indicate there was no strep infection), and high titers confirm recent strep infection. It seems that many of our kids have immune system problems- immunoglobulin deficiencies- immune system testing is generally covered by insurance, but again, these do not test specifically for PANDAS- but if immune deficiencies are found and treated, it can sometimes resolve PANDAS symptoms. The Cunningham test- is a study being conducted at the University of Oklahoma in Dr. Cunningham's immunology lab. She has found some things which seem to be biological markers for PANDAS and Sydenham's Chorea, but this test is still in the study stage (looks promising though). Many of our kids have participated in this study and have used the results to convince our physicians that there is indeed something going on w/ strep and our kids. This test is not covered by insurance. Since it is a privately funded study, they usually ask for a $200.00 donation to cover the expense of testing and postage (blood sample has to be overnighted to the lab). Ask more if you need to!

Glad you took a break when you needed it. Its a scary prospect, especially when the 1st result you see is worsening of symptoms. So, glad you're seeing great improvements now. 100% would be fabulous, but in my daughter, even 20% better would be a miracle! Right now, I need to hear the anecdotal stuff, but, yeah,the CamK levels going down are impressive! So do you just have a closet full of those Cunningham blood draw kits?

Thanks for the update, Buster! I've been missing your super-informational posts here. Such exciting news!!!! This one, especially, gave me a burst of joy: Wow, no rages for a whole week, wow! Fascinating CamKII numbers...

There was a three year period there where I still can't look at photos of my daughter without being very sad...how could I not see how sick she was, and remembering ABA during that time (it was a miserable failure- my child is a Lovas flunky)...well, she's not well yet, but never, never want to go back to that time of quiet desperation that not only destroyed my hope, but made me afraid to hope. Thanks to all of you here...I've got some hope again, well...guarded hope. You've helped me find out what to do when it seemed like nothing I did helped. Thank you for that truly amazing gift!

Yes, its above the mean for SC. Her pediatrician ran the immune panel, and I'm not exactly proud of this, but I don't want to ask the doctor if its an effect of the prednisone, because those numbers are going to be used to make the case for IVIG (with the immunologist)....but, just a little research has been done into the effects of female cycle hormones on immune system and it looks as though those have quite an impact on the immune system as well....they just don't know yet what the implications are. My daughter did well on the steroids- it was only a 5 day course so we didn't taper off. But, her PANDAS symptoms didn't return until a couple weeks off prednisone. It was what looked like a cold- runny nose and just not feeling well, that came up immediately following the pred...I'm assuming it was a virus, since she was on 1500mg/day of keflex at the time. Should be getting that referral to the immunologist soon- pediatrician wants to contact him first to lay out the situation, explain everything.

I'm just going to give a series of events here- I'm confused as to what's going on exactly. My daughter just turned 15 a couple of days ago. Sept. 1st- throat swab detected strep- she was on proph. zith at the time. May have been suffering from strep for a couple of weeks- the behavioral signs had been there- I just was so sure that the prophylaxis was working that I ignored the signs (enuresis, increase in ragey behaviors, messed up sleep schedule) and attributed everything to school starting up again. (which I guess isn't too far off since she gets exposure to strep there) She was given a full strength course of zith, which may have cleared the infection, but did not improve symptoms, so she was placed on full strength Keflex. But, while all this was going on, Cunningham test results (from the beginning of July- I don't think it was during an exacerbation, but very high 242% CamKII activation) were shared with her doctor and after contacting Dr.s Cunningham and Latimer, she was also given a 5 day course of prednisone. Symptoms improved on prednisone, but... On the last day of the prednisone, she began getting ill with what I think was a cold. Just as she was recovering from the cold, blood was drawn for an immune panel- low IgA and Low IgG4. She resumed proph. zith, but at a higher dosage and frequency: 500mg, Monday, wed, Friday. A few days later, she started her 1st ever period...that was 8 days ago and she's still flowing pretty steady. Symptoms have returned for the last 4 days-enuresis, ragey behaviors, messed up sleep schedule). It just seems like there are too many variables here to think things through very well. Did the prednisone suppressing her immune system cause her to get sick with a cold (if that's what it was?)? Did it also cause the low IgA, IgG, which was tested a few days after the prednisone? In light of her recovering from the strep, shouldn't the IgG/IgA have been elevated? Did hormone fluctuations from the impending menstruation have any effect on all this? Will she ever stop bleeding? (okay, I'm pretty sure she will.) So anyone have any ideas on all of this?