eljomom

Jennifer---I am not a doctor, and I dont' want to say "everything is pandas" but your case sounds about as Pandas-like as it gets, AND you have the ASO that so many doubters want to see. So, as a mom who didn't look hard enough, I would suggest you find a doctor who will treat her. Pandas-specialist, or any doc who will treat. Do not pass GO, do not collect $200. Do not stop....jump on this!

Ok--this is just because I am feeling punchy, but do they have numbing gel for the brain that you can give pandas kids before blood draws.....bwahahahahah! I'm sorry...for us, it just sucks to even walk in the door...

Anyone have the values for a 7 year old? Also, IgG subclasses for 7 year old?

I agree with LLM---dd7 got a very hard, red localized swelling at shot sight too. Pretty sure just a localized reaction, but then again, that blase attitude is likely why we ended up where we did--pandas!

adkmom---how long after having tics/ocd did you start the steroids? were there a ton of tics?

I am tossing back and forth the same questions....looking forward to hearing input. Does your son have Lyme? Or treating for strep? Wondering how soon you were diagnosed and started on Zithromax, and how long it took to see improvement? Thanks, wendy

IgG 2000!! Gosh, my dd7 was like 862! Wasn't flagged as low though. Could that depend on age??

So glad you have an answer and a plan! Can I ask what test was used for the co-infections if Igenex was negative? Do your kids have any other LYme symptoms---fatigue or pain, or just neuropsych symptoms?

Thanks for the update. I can't believe how quickly he got you IVIG, after hearing of people trying for MONTHS!! CAn I ask what co-existing infections he is testing for? This is something I really want to look into. Also, what is CVID? Praying she continues to improve!!

Thanks guys....I wish I could blame it ALL on the docs, and at the end, when it got bad, before I really knew about PANDAS and was convinced about it....I can blame them. But the last few years, when I didn't take her to the doctors for high fevers and being very ill.....had I just taken her in and gotten antibiotics, this could have been prevented?????? I know they say that treating strep prevents complications such as Rheumatic Fever (well, I know this NOW), so why could this not have been prevented by getting treatment for strep, etc....this is what kills me, every time I see my child tic, ocd, stuggle with anxiety, unable to draw like she once could, I am reminded that I could have prevented this....but I didn't take her in to the doc b/c why? Didn't want to overuse abx, didn't want doc to think I was a nervous nellie.... kimballot, I will read the article you linked....thanks!

Wish I were a man, because if you could really follow the simple advice they give when you are down and need to vent, then life would be a bowl of flippin' cherries. NO offense to men...in fact, if you are one of the few men on this forum, you probably operate different than most men Can I please just dump some guilt out here. It's all hitting me as I read over and over about prompt treatment, etc. giving better outcome. IF ONLY.... ...I had known that ocd in a 5 year old was not just a quirk or phase ...I had known that a couple tics (like 3), again, is NOT just a phase, and IS SUDDEN ONSET ...I had kept taking dd to the doctor like I did her first 4 years, as well as my other 3 kids, for every fever, illness, etc.... and got antibiotics...which probaly kept her from getting extreme so long... ...I had not tried to protect dd from overuse of antibiotics, letting days of 104 fevers go on, and on....God this makes me sick... ...taken her in for antibiotics for the horrible skin infection, which started a week or two after the high fever, and around when the tics exploded....rather than just put peroxide and neosporin on it for 2 straight weeks.... ....and then took older brother in for the infection she gave HIM, and got abx... ...and then took older sister in for the infection they gave her...and got abx... ...and then took brother back in for getting the infection again, and got abx... ....and finally, 3 months later....took her in for abx after she got the infection again... ....and then only gave her 10 days of it ...I had googled sudden onset of tics sooner, and known that pandas existed. ...I had known that PITAND existed, after knowing the tic explosion was not from strep, but likely a viral fever, and then skin infection... ...I had tried the abx sooner, that I talked a friend's pediatrician into trying, and he called it in, and I still was afraid to try without getting the opinion of a pandas doctor... ...I had gotten more appt.s scheduled, done more testing, ...I had more $$ so that it's not an issue... ...I weren't so afraid of making dd more odc about germs by taking her to more docs God, I should be taken away, when you read all that. I hate to even admit it all, when I read it over, I really screwed my baby royally. All in trying to protect her from what??? Antibiotics??? Which I am now giving daily...and getting nowhere. Today just sucked. Sorry to dump. Had the dental apt. from #$*& and now dd is having one meltdown of anxiety after another, worrying herself sick about loose teeth, etc.....it's totally unreasonable. And it makes me want to just give her some Zoloft!!! Which I know is not a good idea. And I'm so scared that this is for life. That I've waited too long to get anywhere near a cure. That I may need to keep her in a bubble, which I just won't do. :(

thomasmom---anytime!! S&S--come visit the funny farm any time

This is very interesting, as I just e-mailed back an forth with a doctor in Maryland (Dr. Richard Layton) who does some allergy type stuff, and said he's treated kids with seeming tourette's and had success with many. His website is www.allergyconnection.com. VERY, very nice guy. Will e-mail you back and answer as many questions as you ask. I told him we are looking for someone to do a full, comprehensive workup....infections, gut, immune, etc....and he told me what he would be comfortable with, and what he would suggest we get done by someone else, which I found very honest. This was after a number of e-mails with many questions. I have not ruled hiim out at all. In fact, he has seen some pandas kids, and said he sends his difficult cases to a neurologist in Maryland....when I asked who, it was Dr. Latimer.

I haven't had a chance to read through all the replies, but honestly, if my child were happy in school and not being ridiculed, chastised or punished (privately or in front of the class) for not doing work, then I would leave it be. Then, on the roof of your mouth with your tongue, write this: "Mrs. Teacher....all the worksheets that you have given my son, that you have not even bothered to follow up on, are really just busy work, and in the whole scheme of things, in 2nd grade, just don't #@$!*& matter"---and then just walk away with a smile, knowing that your son is happy. Then, if you really get a wild hare up your booty, you can address the 504, and make a list of specific accommodations that are required. This might mean getting private testing to be able to have them documented, etc....depending on your school system. I might also meet with the principal, just to have it on record, and you could bring along a letter that you address all of this in, just so if it comes down to it, in the end, and they try to say that you are the one to blame, you have documentation. It just stinks to have to worry about that. We are homeschooling, but I don't know how long that will last, but I shudder to think about what will happen if dd7 had to go to school.....been there, done that with another child with issues, and it's not fun. And I understand it from both sides as I used to teach middle school.....

If you are only going gluten-free, then whey is fine. If you are going "dairy" free, whey is dairy. I've had those bars (I am gluten free)--the don't taste too bad, but for some reason always make me feel like they get stuck in my craw

I was thinking about what the pros and cons are of treatments for PANS (tired of calling it pandas....what a misleading name!!!), and realized that I really don't know the cons of IVIG/PEX, because I have not gotten that far yet, and have spent all my time just trying to understand this illness. But I am guessing there really are some possible cons of this sort of treatment, both in the short and long term. Can anyone explain??? So, I am about the most clueless chart-maker on earth---but wondered if one of the people who make charts like they make a PB&J would be willing to put one together for people in order to help with decisions about treatment? We could compile all the data people reply with and put it in chart form. I am happy to put it in list form, but just am not so good at putting a chart together, or posting it. So far, Antibiotics----- Pros----works on the infection that might be causing the antibodies, possibly anti-inflammatory, possibly immune-modulating (we could even break this topic down to which abx are better for what) Cons----resistance, lowers immune function (this I really don't know), guessing there are other cons Steroids--- PROS----immune-modulating, anti-inflammatory (guessing again) CONS--- if underlying infection, can allow it to become worse (?) IVIG--- PROS---anti-inflammatory CONS---not sure, I am now in unchartered territory, so I won't even try to guess..... Anyone who can put some facts and info here would be appreciated. Wendy

Kimballot--would you mind posting them on the forum? I am trying to figure out what we still need....thanks.

Thanks for the input. You know, I had horrible teeth as a child too. So I doubt it's Lyme. Maybe just hereditary. But my concern is why the tooth has decayed??? under the cap(is it a crown? it's a silver cap over the tooth...)? I know she eats too much sugar, and carbs. I just was googling and saw something about decay being caused by candida albicans? Is that yeast?? Really think that could be an issue for her. I am just dreading tomorrow....

I first am so sorry to be a posting freak the past few days....I've finally had the time... But I need help----my dd7 has horrible teeth. She's had numerous fillings so far, and had a silver cap on one of her molars about 2 years ago. Tonight I insisted on flossing her teeth, which only happens (I shudder to admit) about every couple months, because she freaks out any time someone messes in her mouth. She has white hard buildup on the edges of her teeth...likely from plaque or tartar hardening... Losing teeth involves a week of building anxiety, until the day it hangs by a thread, at which time she is totally unreasonable and has freak-outs all day long, until I finally lose it with her, hold her down while she shakes violently, and pull it. Anyhow, when I mentioned flossing, she started her freak-out, screaming and crying, shaking, running to another room and not letting anyone near. I tried to reason with her, and after about 30 minutes, she finally said it might hurt. We hashed at that for a bit, then she said something about a loose tooth, and she didn't want me to pull it. I reminded her that she just lost a wiggly tooth, and no others are ready yet. She told me the silver tooth is loose and hurts when she eats on that side. I asked how loose, and she wouldn't show me. Another 15 minutes of horror, and finally I freaked out on her, and said let me see it NOW!!! or we will go to the dentist first thing in the morning. Well, that worked like a charm.....NOT!!! But I did finally have her wiggle it, and I finally got my hand in there, and the tooth is loose. She just turned 7, and this is the lower molar, the second one back. Not due to come out till she's like 12. So my concern....is this possibly and underlying source of infection???? And if so, what do I need to do to protect her from any bacteria from this harming her or making her steady, not-improving pandas even worse???? She is on 100 mg zithromax (weighs 45 pounds)--not sure what would be good for oral stuff. I am probably jumping the gun, or even feeling like maybe we found a "source" of infection---why would that molar with the silver cap be wiggly? Anyone got any info. on dental stuff?? I am going to call in the a.m. but want to be prepared.....sigh. Oh, big sigh. I better eat my Wheaties in the morning...I can tell it's going to be a long one. Poor sweet girl.

My link It's under the section titled: "Treatment of Pandas based on pathogenesis of post-streptoccal autoimmunity"

My mom brings out The Washington Post Sunday "guts" for me each week for the coupons. Lately I have been just chucking it....so busy doing life and thinking about PANS that I don't coupon lately. But for some reason today, I opened last week's guts, and the front cover of the Parade section caught my attention...about cold season.... I am going to try to post a link to one of the pages that had some interesting stuff.....nothing new, but very simply put, about NOT boosting the immune system, and also implies the "inflammation" that causes head to throb, nose to run, etc.....from the immune system. Just thought I'd post......I really may call this Dr. Winther---she's at UVA, my alma mater so maybe she'd talk to me???? My link

Bump---also I added a couple more names....thanks.

kimballot---great explanation ... again. Sorry I keep asking the same questions...I seriously think I have some memory issues going on:( Didn't Dr. Cunningham just hire a B cell researcher? Very interesting. What dose of Quercetin do you give a 45 pound kid? Also, is this better than Curcumin?? Hi - regarding your backsliding while you wait for your appointment next week - I don't know if you use anti inflammatories, but they can help if it is a PANDAS reaction. Quercetin and fish oil are good for long-term use, and many people use ibuprofen for short-term relief. I am sure Scott Smith and your Dan! doc will have lots of ideas about ways to reduce inflammation.

Just curious--how does Scott Smith treat PANDAS??? Anyone.... Also, I keep coming back to the kids who might no longer have infection, but are now having chronic pandas symptoms.....we spend all this time trying to find a hidden infection, and there might not be one. What is going on in these kids.....symptoms stay with no infection? Is that the permanent damage? I mean, if pandas is like Rheumatic Fever of the basal ganglia....my father in law had RF as a child, and had a massive heart attack at 41, and died of a second one at 44.

Fixit--why Labcorp only for CD 57?? We had it done thru Igenex, and it was high!!! Like 243.... i do think that is a good idea to get panels done...then you have an idea what to really go after..... but start with those that are typically listed here.....you can test till the cows come home...start with some of the more known triggers...and check vits d, b, ferritin, mag thyroid...things that are common and help support immune system if you have been doing abxs you should check liver enzymes when you go in...every 3-6 months....most children don't have problems as they process stuff so fast...but you can be sure and feel better about how you procede include igg subclasses and cd57(labcorp only) and i think you know the other ones.