eljomom

tampicc---also wanted to add...we did go see Dr. Charles Mansueto at the Behavior Therapy Center in Silver Spring, MD. You can google it. He is a well-known behavior therapist who specializes in kids with tics and ocd, and even what he calls "Tourettic OCD." Also, for someone else on the forum who's child has trich...that's another specialty area...just fyi if you're reading... anyhow, it was very, very helpful to see him and get his opinion on things. WE ended up NOT bringing dd7...my husband was afraid it would make her worse, etc....so we just ended up surprising him for the 2 hour apt. with just dh and myself. He brings to light many things we hadn't thought about, and different ways to think about them. While I thought "we need to get her to therapy NOW" and my husband thought "she's fine, she's happy, she'll outgrow it...", Dr. Mansueto felt we could watch for 3 months...he gave us some guidelines to go by during this time in order to help know when it's "time" to get professional help. Anyhow, it might help to just meet with a good behavior therapist who specializes in OCD, and explain your child to them. Let a professional weed it all out...

tampicc--you are one of the people I am interested in hearing about how the IVIG helps...my dd7 has MANY tics, not just one or two. She of course has the "ocd-ish" issues, hyper, decreased drawing, etc...but I have heard they aren't even accepting kids in the IVIG study who's major symptom is tics due to negative results in prior studies? Does your ds have many tics? Thanks for sharing...

This is very interesting. First, I want to quote something Dr. Leckman (who is an OCD guru) said in an e-mail to me (well, sort of quote, but can look it up if anyone wants...), but he said that basically ALL kids are ocd sometime around age 2-3. Someone posted the other day about their child only wearing green. I too would have seen that as a phase, if there weren't any other major "phases" going on at the same time. ALL 4 of my kids have some degree of ocd, and I'm not sure if we ALL don't. The big thing is if it is interfering with daily life and functioning. That is the "d" of ocd. So 3 of my kids even up...I see them touch things with one hand then the other. One has told me when she scratches on arm, she has to scratch the other. I think I even may do it sometimes. I personally can not stand my shoes to be tied unevenly. My other kid asks questions a lot. He asks things I know he knows the answer to, and I get frustrated with him. But he's happy and functioning. Two of my kids cant' get rid of anything...and I hear this from other friends too. My mom is the same way. One of my kids saved wrappers. One of my kids collected dinosaurs, then football items....One of my kids gets really angry if I don't do her hair just right. Right now, I only focus on my pandas child...as her oc(d) seems to affect her more. She is a germaphobe, but doesn't wash hands, etc...or clean...maybe not yet, or maybe just won't. I guess my point is that it's important to watch how much it is interfering with functioning, development, general happiness. I know I have heard that it can "grow" and get worse, etc...so something to keep an eye on. At risk of getting more rotten tomatoes thrown my way...and truly I can't believe I am even going to say this, as I have been bitten because of writing too many things off as "just a phase"...but I do believe kids are quirky in general, and have personality quirks to some degree, and that we pandas parents are a bit more on high alert to some of these things....

Smarty- We do NOT live in a state that requires "proof"--so I don't really know what that means....honestly, I get done in a few hours what gets done in a couple DAYS in public school, so do you have to show the same number of HOURS of work? If not, then one of the benefits you DO have from homeschooling, is adapting it to what works for YOUR life. If that means you do an intensive reading unit for a month, then when he's ready, focus on math for a month....or whatever works, right? To me, homeschooling means you get to decide HOW you go about getting your kids where they need to be. In our state, we get to decide the "where" part too, for the most part (yes, we do have to do a standardized test), but the how and when is up to us. I'm guessing your son is in 3rd or 4th grade.....I wouldn't stress over the science, history, etc....stuff. Reading, some writing and 'rithmetic. We struggle with the inattention here too with dd7...it really makes me crazy sometimes. If she's over the top, I do let her do some things that she LIKES to do, like even do some math on the computer. Other days, I get more firm with her (sometimes to no avail, but sometimes it works...) and she will finally settle in for a bit. I had to switch a few things I was doing TOTALLY, as they were just not working for an inattentive kid. Sorry if this doesn't help at all....I still feel like a total failure as a homeschooling parent...and I think that thinking about PANDAS 24/7 makes me a bit ADD myself!

Did anyone who treated their dogs find that it helped in ANY way with their child's pandas??? We are supposed to treat our dog, but honestly feel like that would be way too stinkin' easy..if that actually helped...

wow--but wonder if it blocks the "good" immune cells from knocking out viruses, etc...

I haven't replied since I don't know that i have many "definites" to many of the questions, but will do the best I can:

norcalmom--this is very interesting! just trying to find a doc to do the testing has proven impossible for us. A couple questions: Do kids with "chronic myco p" have any symptoms? Lingering cough? If my dd had walking pneumonia a year ago, but healed (no symptoms), and IgG and IgM were both non-existent in tests done in October, is there any reason to do PCR? Also, is Swedo starting a pitand study? Or just writing criteria in case someone else does down the road? I was trying to understand the abstract in the second paper, but this threw me: "as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels." Not understanding this statement....I thought only PLS patients showed high. Didn't the PLS seronegative patients show no antineuronals? Confused.... Thanks for all the insight and info.

Well, this really goes right along with my "theory"---Cam K being high could be from infection? Seems they are now seeing Cam K is high with "Normal" kids with active strep, or could be active anything for all I care. I have a theory that kids with high Cam K and normal antineuronals are the ones who have a good response to antibiotics. Then the kids who ALSO have high anti-neuronals...these are the kids who have a true autoimmune response going on, and are NOT usually kept in check with antibiotics alone. Just a theory....interested in hearing more though! Dr. L is the doc who said the antineuronals are more telling to her. If I had normal antineuronals AND my child responded to antibiotics, I would prefer this I think. Just don't really know...

Our pandas doc wasn't settled on pandas with just our Cam K (which was 168). Said the antineuronals were more telling.... still not really sure I understand the whole thing, as many times as I've reeled it around in my head

Well, I have to say that you made me laugh....with your PMS comment But on a more serious note, normally, I would say this is normal kid stuff. My almost 13 yr old dd (not pandas) still freaks about spiders...if there is one in the bathroom, she doesn't want to shower in that bathroom for a few days. But then again, my pandas dd7 will freak about things that i KNOW are b/c of pandas.....so I guess this doesn't really help you...in a normal circumstance, I wouldn't BLINK over that situation. But now that I am the tic-police, ocd-police, sep. anxiety- police, drawing-police, I would just keep a note in the back of my mind...

MichaelTampa- VEry intersting---so does that mean that you STILL have pandas and exacerbations? Having CamK that high?? Also, I was under the impression that CamK was showing that there was inflammation from infection, and the anti-neuronals were the autoimmune indicator. Did she explain it in any way?

I am really curious how many people have had their entire family either cultured or titers drawn? I keep hearing about it, but my (well-respected) pandas doc has not ordered this, and neither did the I.D. doc she sent us to. I know in our case, we are now PITAND, but could have started PANDAS, or could still be, as noone else has been checked.

HI Dedee- I am sorry you are feeling the way you are---nothing definitive--but I can relate. I will say, even with Cunningham results being high, very high in fact, we are NO further along here with my daughter. Pandas doc is, in my opinion, passing the buck, sending us to I.D. doc, who did NOTHING for us...all because my dd still functions. "Don't count the tics as indicator"--well, they are! And theres' still ocd, etc. too, just not debilitating. So I wouldn't worry so much bout the Cunningham, as even the pandas docs (well, mine at least) aren't treating just based on them. I am envious of all the lab work your doctor ordered....can I ask what kind of doc you are seeing that ordered all that? Also, what test showed the inflammatory markers? Do you know what the panel is called? Also, very intersting that your doc (if mainstream medical) ran stool tests for gut....wish I could find someone to do this stuff! Hoping your apt. with Dr. Murphy is productive.

So how do you test for "chronic mycoplasma?" Is it with titers? This again does not necessarily mean they have chronic infection, I think..so curious if there is a specific test for myco. p.

While we don't have this issue, I see it enough to wonder....why are kids being treated for high titers? I know I may get hit with a few tomatoes on this one, but this is ONE part of the NIMH Pandas statement I do find to be relevant...about NOT treating for titers being elevated. First of all, they can be elevated from mild infections that even clear themselves. STrep included. But the fact is that they elevate after being infected, but this does not indicate there is STILL infection. IgM means "recent" infection, but it still could have been weeks ago, and cleared. Those titers will continue to rise even after infection clears, for a few weeks. Then the antiDNase B heads up. Just curious about this.

I also wonder about the "herxing"---that maybe it's just a bad reaction to an antibiotic. I took Levaquin a few years ago for a major cough that would not go away. I had been in bed, feeling horrible for days, and I mean SICK, SICK. Within an hour of taking first dose, I felt like I was perfectly fine...energy, etc. Now I KNOW my illness was not healed in an hour. But then after a few hours, I had the reverse effect, and got very depressed. Did the same thing the next day after dose....after third day, I called the doc and said I didn't care if I never got well, but I wasn't taking another dose of that medication. She said she rarely rx's it (an on-call doc did it) for that reason...so sometimes I do wonder if people are just reacting badly to the extremely high doses of multiple abx (that's usually when there's a herx, right??) But truly, I am right there with pandas16 and tampicc---is it chronic infection we are trying to get to, or autoimmune. And if pandas is what it is, then it's the latter, so likelihood of abx being a cure seem SLIM>

A-men, tampicc!!

Could your extreme symptoms in December have been from your worsening pandas due to the infection you were on Biaxin for, and maybe NOT from the Biaxin? 1 i don't believe we ever tested for that..is that something that was done with swedo??? are more people testing that one??? is it just for tics or for ocd too and or http://ajp.psychiatryonline.org/cgi/content/abstract/158/4/605 2 my son and his paternal side do not react well to it either... can you explain reaction... and how does it stimulate the immune system... do you have any problems with penicillans or other specific abx 3..so is that why the hd ivig was not good for you, because of high ige it is strang as you sound similar to my ds also in the very allergic pollen area....if you are very sensitive..you realize that you are bringing in stuff all the time, hair, shoes, coats, purses..just openeing an closeing the door... i started ds on allergy shots about 5 months ago...vvvveeeerrryyyy low....and the first few times it seemed to actually help immediately..coincidence to somehting else...idk..but a slight betterment 24 hours later..(as it is supposed to desensitize) and you cannot avoid pollens when you are that hyper sensitive.. his ig's are low side of normal.. failed igg subs Back in 1998, I was part of a research study at NY Presbyterian that tested d8/17. I'm not sure if it is a test that is available now and I don't remember too much of the details because I was 9 & incapacitated. When I had IVIG they used Sandoglubulin (sp) which isn't even used anymore and I think it was low dose. I don't know how I would react to it now. When I took Biaxin in december, I had absolutely awful OCD and complete body tics. Everything came back. I don't know why. Things still haven't calmed completely.

Well, funny, kind of going along with another post I saw earlier, when she had the sore throat, she was actually sweeter and easier than she's been in a long time. I waited for the $%#@ to hit the fan, but WHILE she had a the sore throat, nothing. I will have to check my very scattered notes, but pretty sure she got a little worse, then a little better, then a little worse again last week. Very weird. I wonder if I should run titers now, but then again, they don't really tell us much about NOW....all it would do, if elevated (which we haven't had) would be to make me kick myself for not taking her in, and I'm pretty black-and-blue from that already I just wanted to let you know that there are some strains of strep that are resistant to macrolides (zithro falls into this class) Did your daughter's symptoms increase last month?

pandas16...I was hoping you would chime in So if Cunningham is high, that means that the cytokines are still running around, but WHY?? And if they are still circulating, then that means the BBB is staying open? for the auto-antibodies to get in and muck things up in the b.g.? Aren't cytokines and macrophages from current infection?? What about "chronic" kids, where there appears to be no infection?? I think they also interfere with dopamine signaling, right?? momwithocdson....this also leads to your statement, which I could not agree with more (even though not necessarily about glutamate only....) that it matters what came first, the chicken or the egg, in how we treat.

wow, dd7 was negative for myco p. IgG and IgM, despite having had pneumonia 3 times, and walking pneumonia (?) 7 months prior to test. Was told it was negative.....is this another thing like Lyme has become...it's positive even when it's negative?? Sigh. Also, the Group B strep is interesting. Our pandas doc AND the I.D. doc have not tested our family yet, but my mom's doctor happily did a throat culture on her. She was positive for Group B strep. She is around my kids a lot (and always sharing food with them, etc...). Her doc told her Group B strep you don't treat, and it's not the one implicated in Pandas (he called someone about it...he's an Internist). Curious now though.

So my post about if it's inflammation or infection spurred some great discussion. I woke up this morning, early, kicking myself for NOT taking my dd7 in for a swap last month with the sore throat, rash by her mouth (thinking she couldn't really have gotten strep...that's why she's on zithro, right...to prevent it??)...but now really believe it might have been. Will never know....anyhow, I digress....but that led me to another totally different thought.... I would LOVE, LOVE, LOVE to hear the answer to this from everyone's pandas "expert", from Sue Swedo, Dr. Cunningham, Dr. Leckman, etc.... So this really sums it up: Why, in the absence of infection or exposure, do some kids have distinct "episodes", where there is a clear exacerbation, and then they go back to baseline, and why do other kids end up "chronic" with symptoms? My thoughts, but still don't know what they mean in terms of treatment implications, are: Some stay the former, some start the former and then become the latter, and I suppose some start and stay the latter. It appears, then, that some (the former) stop circulating the auto-antibodies when infection/exposure clears, while the chronic kids keep making and circulating the auto-antibodies. Or, they are ALL always making them against the brain, but only kids with damaged BBB's are chronic? I am going to e-mail my pandas doc (and am certain I will not get a reply), but if anyone else wants to ask their pandas docs, I would love to hear the explanations....and implications of treatments. (ie., abx for the former, immune modulating for latter?) Thanks for bearing with my mindless chatter....off to teach science co-op....physics today

wornoutmom---to add to Renowned PANDAS expert: "PANDAS kids don't get yeast issues....they just don't for some reason."

I purchased the book Natural Treatments for Tics and Tourette's from latitudes, when we thought that's what this all was. Picked it up last night, and read some stuff from this guy at Utah STate University...He's a Phd. Anyhow, I googled him and autoimmune disorders, and saw this. VERY interesting stuff...sounds like GREAT tests, and I like how he encourages testing to see what kind of disorder you are specifically dealing with before deciding on the immune therapy. Also, read all the way to the box at the end of the article....pandas or what? I plan to call this guy and pick his brain, unless someone already has??? Going to try to attach a link: My link