peglem

I just wanted to say that it seems counter-productive for a pediatrician to do vasectomies!

My guess is that it would just really relax her...

Sort of related- can a person w/ IgE deficiency have an allergic reaction?

Wow, for a kooky PANDAS parent, you sure make a lot of sense!

my TS husband(in his 60s) had massive tic triggers and other alarming reactions to the steroids and altho he didnt get as psychotic as clonidine made him he had a "nuts" element to his reaction tho it was more massive panic/fear/phobia kind. he still feels (a year + later) the steroids altered his cognitive focus as well as the elevation of his TS tics, some that he hadnt had since childhood as an aside, and something I have posted before on the TS forum here, altho my husband has genetic TS/ OCD etc (considered "bad habits, moodiness & eccentricities" when he was a child, his grandad and dad had them too)...he does have a vague recollection of the stories his mom told of him nearly dying from a strep infection/fever as an very young child, and that he had it so bad, his grandmother put him in a tub of ice water to control the raging fever. His mom and dad are deceased now, so I cant try to get more info on that, but I wonder if that strep ? scarlet fever could have been what "triggered" my hubby's TS etc Chemar, Has your husband or son ever had any immune system testing or been looked at for autoimmune problems?

I absolutely agree with you! Yup...people are on long term abs for many reasons, not just acute rheumatic fever. I had a friend whose dd (young child) was on abs for years b/c of a bladder reflux problem. And another (elderly) who was on Azith. for a year for dental problems. But, if you mention long term abs for PANDAS (ya know, prevent and treat mental illness) suddenly abs are "dangerous" and "contraversial". If you were a cow, your whole life would likely be spent consuming antibiotics!

My understanding is that these were the criteria that Swedo used to identify kids that were eligible for her studies, and later kind of turned into dx criteria. She needed to define what made the kids she studied different from your garden variety OCD, and the OCD seemed to be her primary focus, not tics. I don't know as much about tourette syndrome as Kurlan, no doubt, but does he not see a difference between kids who go explosively ballistic w/ tics and OCD very quickly as different from those who wax and wane? Wax and wane suggest gradual and slow to me. They are common, but there's a matter of quantity and quality in PANDAS kids that makes these different. It is unusual for a child to suddenly have the urge to void (for instance) so many times a day- and the quality of it being so often linked to anxiety/fears and overwhelming compulsion- not so common. The severity of these secondary symptoms also sets PANDAS kids apart- There's separation anxiety= "I miss my mom and wish she was here", compared to: "if I can see my mom I will die." I agree with you- sawtooth=sharp, abrupt increase; sharp, abrupt decrease. Wax & wane= gentle waves, slowly building to a crescendo and then easing back down. I agree with this now...but can also see that, again, Swedo only used this in the absence of a culture-to show evidence of strep for the purposes of her study. Maybe she should only have narrowed her subjects to only those who had clearly documented strep cultures. She chose to be more inclusive instead. I wonder what she would have done differently if she could have seen 10 years into the future? The mouse model? There really have been precious few studies of carrier status- and this one sticks in my craw. I suspect carrier state is an indication that there is an immune problem. I would love to see some studies (and I think these are a glaring omission in PANDAS research) on the immune systems of PANDAS kids and strep carriers. Besides low total IgG, my daughter has very low IgG4, low IgA, and the one time IgE was checked it was not detectable (I got a copy of those labs from the immunologist and he had marked the IgE with a big ?. There is a bit of info on low IgG4 and low IgA predisposing to autoimmunity, but there is almost nothing at all on the significance of LOW IgE. Anyway, that whole carrier state needs to be visited by science. Its like a hidden variable-not checked for because there are no symptoms to indicate it should be checked. Does he really believe all TS has a common origin? (he did say that whole gene search didn't pan out, right?) I think he's likely to find many nonPANDAS TS kids with similar MRI's to PANDAS kids- (although I think maybe MRI is not the right tool for this) but with different causes. At any rate- maybe he's just starting to plan a way to save face for when PANDAS ultimately is a proven an accepted dx.

I absolutely agree with you!

Shoot! I'm all out of tomatoes. But anyway, I think you have a valid point! But does that give more weight to the zeros in the last 2 categories: "no improvement" and "made worse" ? I hope Dr. K's report is something we can all access for free and take to our doctors...please let us know when it comes out!

And even if he saw DRAMATIC improvements in his patients from abx or IVIG or PEX, he would explain it away as a coincidence of natural waning. 'Course, he's unlikely to see this phenomena if he has his eyes closed to anything that does not happen in a controlled study. He claims a huge placebo effect to PEX and IVIG, and looking at Swedo's study- she really expected that to happen...it didn't.

Oh, and on a more personal note...he sure seemed to talk a lot about HIS articles, and HIS expertise.

I couldn't figure out how to submit questions! But, I have to say, if it were not for my experiences with my daughter, I'd be convinced that there is no such thing as PANDAS. But, his testimony about the effects of abx on symptoms were so far off from what I've experienced...he's just wrong! Maybe the strep is just coincidence (my kid is a carrier), but higher doses of zithromax have made a huge, huge, (I'm talking life altering huge) difference in my daughter's symptoms, so if its not strep then it certainly is something bacterial...dopamine blockers made my child worse...abx much better. And my daughter's behaviors do not wane on their own...never have!

Thank you for doing this PMOM, I'll be supporting this as much as I can.

from Buster's FAQ: So, inflammation opens the BBB?

Did he get that dose covered by insurance? Under what dx?

Are you talking about zithromax-the antibiotic? or is there a treatment called zitro?

OMG- how crazy is that? I'm speechless!

You know how OCD can start when somebody suggests a danger? Well, instruction at school on stranger danger and good touch-bad touch had my daughter terrified to let mommy put cream on privates. It has taken quite a lot to get so that she will try to let me put on the cream. By that I mean she is to the point where she knows she needs the help and will try to cooperate but still reflexively protects from it.

Not silly- a real concern. This is why I use the diflucan tablets.

My daughter also has autism, and the urine thing has come to be a sure sign that a PANDAS episode is imminent. She has had episodes where she just pulls down her pants and pees on things or just on the floor. She went through a few months where she was afraid to go down the hallway where the bathroom is located....But these pee anomalies always go away as she gets better. He may test positive in a few days, or you may be checking in the wrong place. If not on abx already, I think its worth a try to see if it helps (but your doctor probably doesn't respect my opinion!).

The only thing we have found that works for my daughter's vag yeast is diflucan. The nystatin seems to keep the tummy pretty well (we've done both at the same time) but we call in the diflucan whenever the "itch" comes back.

Coming up tomorrow!

The ASO and antiDnase are not the antibodies that cause PANDAS, they are antibodies to strep exotoxins and are used to confirm a past, missed strep infection. Timing post infection is important (there is a post about this in the pinned thread at the top of the forum). These titers do not rise in all children who have or had a strep infection. Normal titers do not rule out a previous strep infection, raised titers do confirm a previous strep infection. My daughter, with almost constant + throat swabs, has not had high titers. The problem is that doc's frequently interpret low titers as ruling out PANDAS...and refuse to treat based on that.

Yes, 5 out of the 14 tested were >2. Thank you! I will talk to him about it.

How long after pneumovax are the titers supposed to be at protective levels? The reason I ask is that Allie 1st had the pneumovax @ 2 1/2 years ago- the first time she had a poor response (less than 2-fold as compared to baseline). She was immediately revaxed and the second time showed an adequate response. When her titers were pulled again last Nov. , they were low again (but this time I would not revax)- but is that normal or should they still have been protective after that much time had passed? At any rate, her IgG that was already well below normal range 2 1/2 years ago- was even lower when checked last November. Like Melanie, I am interested in studies (double blind would be nice) that show higher dose IVIG is more efficacious in autoimmune disease, just to bring with me when we eventually have "the discussion" about dosage. I know swedo used 2g/kg, but she didn't compare that to results of a lesser dosage, and I don't remember her giving a rationale for that dose (maybe I need to revisit the paper). And Dr. K hasn't published on this issue, has he?