eljomom

great questions ma2ar2rm2---again, I share the same concerns. I just wish there would be some parents who have done IVIG, moved on with life, etc. that would come back and post. Or are there any?

ditto 3boysmom...I have the same questions and fears....why not treat now, before it gets worse, and maybe prevent it getting worse (thus harder to treat), but what if it makes things worse....

We are Anthem PPO....but very high out-of-network deductible, which she is for us (out-of-network). So for us, we pay ALL and get NO reimbursement I assume with a good PPO, then once you meet your deductible, you will get out-of-network benefits. We switched insurance right before my daughter tanked with this....but our old Anthem, we would have paid $300 out-of-network deductible and then been reimbursed. I think it all depends on deductible..

Yes, SF Mom...hope I didn't give the wrong impression....just know that 31+ doesn't necessarily mean 31+ for LYME...maybe the child still has Lyme, but "band 31" is cross-reactive to something else other than Lyme if the epitope is negative...at least I hope I'm understanding Dr. H at Igenex...

Not to make light of this, but I have good friends who act exactly like you described your son regarding facebook! I did it briefly, and could feel myself being sucked in, getting bothered when my kids needed to ask me something when I was facebooking....so I quit. Anyhow, if it give you any peace, this may be a normal facebook reaction!

philamom--who is your llmd? also, are you seeing improvement with lyme treatment?

We had a ++ on band 31 on IgM.....your doctor has to ask to run the 31 epitope confirmation test. WE went from a 31++, to a NEGATIVE on the 31 epitope test, which means 31 was actually negative. I spoke directly with Dr. Harris about this...it was he who recommended the confirmation test. I wonder how many people see the 31+ or 31++ and go on to be treated for Lyme (since 31 is so Lyme specific), but never knew to get the confirmation test. I think Igenex should put that in the results, honestly. Kinda BS to me...sorry...had to say it...

Well, I spoke with Dr. Leckman, who said that he didn't think kids with mainly tics were being included, but that I should call and speak with the screeners. He mentioned that there had been negative (I distinctly remember the word negative) responses.....meaning NO response or help with tics. I also read this on something somewhere by Swedo...would have to dig to find it. Dr. L says to not look at dd's tics when looking at if she's improving...that tics are the hardest to get rid of...well, they are a big issue for us, so i DO look at them as a sign of improvement/decline. Anyhow, just anecdotally on the forum I have heard this too....

My dd had anti d1 of 4000 too....interested in responses to this. SEems really, really high.

I understand that the Yale-Swedo study is excluding kids with primarily tics as there have been negative outcomes from IVIG and tics. IF, IF, IF this is all caused by the same thing (ie., tics, ocd, fine motor, sep. anx.) then why would tics not be as responsive to IVIG?

Yes, I think it's a great sign...just wish they would share what treatments worked for them to get that far....everyone here posts about iVIG, steroids, etc....but not many are getting/staying well, so maybe the other people tried something else? or a different cocktail??

I was really curious if people dropped off because they were more or less "cured" and moved on, or just out of stuff to say...I don't ever hear anybody on here who is just "done" with pandas...do people "sign off" if they feel like they are cured? I know Diana P. swears there are kids who have been basically cured....where they don't even react anymore....just could really use some positive stuff about that...and what they did for treatment.

I was just thinking the other day, as I was searching in some older posts, that many of those posters are no longer on the forum. Of course, there are some of the regulars who post now that were posting back in 08 and 09, but wondering if this forum is mainly people who are NOT getting a cure....are all the old posters moved on and healed??? Does anyone know or keep in touch on the side with any of them?

Okay---so let's find a list of gram negative bacteria....I'm ASSuming strep A is gram negative? Anyone know what else? s&s our Cam K was 168, and Dr. L still wasn't "sold" on pandas till the anti-neuronals came back....

Sorry....what is LPS?? Isolated tics....does that mean "just tics" and no ocd?? Interesting...

The million dollar question is what do you do to get rid of this antibody...or get it to not be "rouge" any more...

S&S--no , not in pandas range for normal strep kids, but still have CAm K elevated. So wonder how this really indicates the autoimmune disorder?? So the infection crossed the BBB or the auto-antibodies? Sorry for the ???'s.

Well, okay, so if even "normal" kids get elevated Cam K during active strep, then I get the infection causation. But then what the heck infection??? Does elevated Cam K mean ACTIVE infection then?? Remind me again WHAT elevates Cam K??? The antibodies to STREP/illness, or the auto-antibodies? And even "normal" kids will have some anti-neuronal antibodies, right? So confused....again...

This is very interesting. Is this a pandas specialist telling you this? I have to say, my dd is 7, weighs 45 pounds, and I give her almost 2 teaspoons if I ever give her Motrin, for a fever, pain, etc.... 1/2 teaspoon is not enough, in my opinion. Just want to make sure you are giving "children's" motrin and NOT "infant's" motrin, though, because the dosing is quite different.

Gosh I'm so sorry about this. How old is your daughter? My oldest (not pandas) had an eating disorder/feeding disorder (not so sure it WASN'T pandas...looking back) due to major anxiety (not body issues...). We started her in treatment when she was just 5 1/2 years old. I was so afraid it would make her worse, talking about something that already made her anxious. I can't say she was angry or openly resistant, but more just anxious about going. I believe, even when looking at myself, when I get the most angry, I am really just scared. Fear. Loss of being in control. All of those things will bring out anger in me, sort of like you feel better feeling angry than anxious, more in control feeling angry than not. Not sure if that makes sense, but maybe that's just part of her being afraid, anxious, etc... and not wanting to face it all. Also, I do believe that if you are with a really reputable clinic, I would think they are very equipped to deal with this sort of thing. I would bet they see as many kids who are NOT excited about treatment as they do who are. I mean, honestly, if you are dealing with an eating disorder, you HAVE anxiety somewhere going on, right? I would also call the clinic and ask to talk to someone (not just the receptionist)....maybe even a clinician, and ask them what they do/recommend in this situation. Should you go ahead and drag your angry child in, and let THEM deal with it?? I wouldn't expect your daughter to overnight just come out and say "you know what, you're right mom, this IS in the best interest for me..", so even if you do get her to go, and she continues to put on the angry face, she may be softening inside. Not saying this from any kind of personal experience or anything....cough...cough... Hoping you can just get your foot in the door, one step at a time....

vermontmoms---did you get the anti-neuronal antibody results with your Cunningham test?

Has anyone tested cytokine 1 and 2 levels?? Just curious....

Wondering where the topic went "Pediatric Grand Rounds...."?? A couple questions, after looking at the slides from the Cunningham presentation: Holy crow----my dd7's AntiD1 (4000) is like, WAAAAY over the top high!!!! I mean, way over SC even!!! What's up with that? Also, on page 8, Leckman's slide about TS and tic exacerbations.....it looks like he's looking at Pandas patients (says Pandas TS)...do the numbers mean the CamK values?? They seem so low! Also, anyone have any more info. on what all the anti-neuronals mean in relation to each other? Like, is it weird to have ridiculously high anti D1, but D2 is normal? Thanks!

AmySLP--do you mind sharing what abx your dd6.5 is on? and how long she had tics prior to starting abx? Thanks.

Welcome, and please keep us posted on your journey. My dd had sudden onset of tics, but it was following a couple years of some ocd things, which I wrote off to "just a phase." In my experience, it has been harder to get docs to see outside the box with the tics, even though pandas/pitand is "ocd and/ OR tics"...