ajcire

I personally don't think that's enough to go on. I think that really we would be looking at basically all kids if we pull things apart like that. I know that when my kids have playdates I see quriky behaviors or things that make I might consider inappropriate that make me go hmmm too but then I stop and think that perhaps I just have forgotten what is normal and that really people just react different in different circumstances. Some people are quick to react, others not so quick, some can let stressful situations just roll off them, others can't. He could have just been shocked to have been actually held responsible and called out on it when yanked from the people.... or if it wasn't his own parents I imagine that would shock a kid too. I think that we have to be careful to not take all less than perfects and attribute it to infections.

I think she has her experience which I think is pretty significant. Her son was certainly not just a mild case. I think she has as much if not more than some others who have found themselves now being looked at as authorities on it. She can't be expected to include everything in her packet when it's not even all stuff that is proven. It would not be responsible to put things that currently are not fact and that are based on a message board. She is basing this on her experiences and it sounds like it's a guide for the person brand new to this... a place to start. I didn't read it so I'm just guessing. Hopefully those new people find this forum first but if not, they very well might find it useful and money well spent. I certainly am not suggesting that I think it's cool to do but I really don't think it's much different than what many people out there have done.. a billion e-books being sold out there that are full of info on things that can be found online.

Dr. T explained it to me as that if you don't treat with antibiotics before and after it that it's like changing a filter on an air filter... you take it out and all the dust starts flying around... so if you don't treat the strep before when you mess with the tonsils you are now exposing it all around. At least that is how I understood it when he explained it to me.

To be honest, it makes sense to me that they wouldn't allow it just not sure how they know what's just more than one person on one computer versus proxy voting.

One of the pediatricians in my kids practice gave me his copy to borrow.....he didn't quite understand just how much info I already had. He obviously is not a totally non believer as he pulled this out of his pocket and handed it to me and told me that he wanted me to have all the same info as him... I had to hide a chuckle at that. He was really proud of himself for having this info. I should have handed him all my packets and told him I wanted him to have the same info as me... But it was still good because he at least had come around from the first time I had asked him about pandas... at that time he told me he didn't know... he wouldn't shut the door on it, he knew strep could cause all sorts of whacky things but he really seemed doubtful that my son could have it because he felt if it was real it was rare. That said, I took the pamphlet home and I read it... I stopped in my tracks on page 7 and called the office to leave him a message to call me... I really wanted to know why then different doctors in that office kept treating my kids with amoxicillian for strep and why the one dr. there who was willing to write a script for a month for me was adament it had to be amoxi..... He tried to come up with a good explanation but I definitely gave him something to think about... Next time I was in I returned the pamphlet to him as he had asked (I left a book mark on page 7 for him) and he was really funny... still not grasping how much I had already researched this... he told me that I could have kept it longer, copied it whatever I needed.... 3 days later I got my own copy in the mail from him. It's a start.

Is it possible you said 3 minutes, he said 2 just because he wanted to be difficult for the second and just said it was because it was even or odd and then realized wait a minute... 2 is less time than 3... I better go back to the 3? It just sounds like such a typical kid thing to do to me. If you said he always had ocd type issues with this, I might look at it different.

Thanks for that explanation momtopandas. It is interesting that the tics were the same. I wonder if others with more than one child with this see the same tics... I know the eye blink is very common but you said they both do a stretch and roll kind of thing... it's all interesting. My pandas ds was how you described but to a lesser degree when he was little... with things his way. I assumed it was regular toddler stuff and really don't know if it was or wasn't... like if I put his pants on for him and he said he wanted to he would take them off and redo them, same with his shoes.... If I cut his sandwich into triangles but he wanted squares that was it, he wouldn't eat it and would cry for a long time if I didn't make a new one... that stuff is all just hindsight for me as to whether it was typical kid stuff or not...my youngest who is not pandas (I hope and don't think he is) has weird things he does too... and if he doesn't buckle the carseat himself he will get hysterical as well... it's so hard at that age to figure it all out.

Why the nystatin? When Dr. L cancelled she doesn't reschedule for another day?

momtopandas, you say your kids were mild pandas. Can I ask what kind of tics and ocd they had right before the IVIG? Did you know they had sinus issues or was that discovered by Dr. B? I consider my son mild pandas but my guess is everyone considers mild something different?

I too find the pepsi site to be quite frustrating to navigate through and to vote on. I suspect anyone I had voting has since stopped due to that.

I sadly don't even know what a proxy vote is?

My ds has the throat clearing tic.... I have never heard of it being a sign of asthma. No doctor ever suggested that to me. My non pandas ds has asthma but never clears his throat. His first symptom was coughing that didn't stop only brilliant me didn't know that was asthma until he was in the mist of a major asthma attack.... My pandas ds didn't start with the throat clearing as his first tic but he started with an eye blink at age 2... that came and went and the throat clearing came at age 4... it was between 5-6 when the behaviors connected to pandas started (fear of sleeping, mild ocd including hoarding of garbage and handwashing, irrational and inflexible in thinking). I consider my son's pandas to be very mild. When I approached the dr. about the throat clearing he told me it was likely a "habit" or just a transient tic... I wish I knew about pandas at that time to have had him cultured. Intersting even at his worst with the throat clearing, when I asked his teacher about it in both first and second grade, neither noticed it. At home it was constant enough that it kinda made me crazy I should add also that now since my son is older... almost 8, when he does it I really can tell the difference between just clearing his throat like we all do sometimes and the tic but if I ask him he can tell me now... I ask him if he feels like there is something there he is clearing of if he just is doing it and he will tell me he is doing it and he doesn't know why.

Great! What awesome exposure for the pepsi project too!! And how cute is her son!

It is totally obnoxious trying to vote. It really takes too long for everything to go through... I am trying to have enough patience to do the pandas vote but if I wanted to vote all 10 of my votes it would take me all day. I know many of the people I had voting have kinda given up trying to maneuver through it.

Even better! Hi Karen, I know how you feel! I could go on with my own experiences, but I thought I would share with you'll a little cathartic exercise I found in a homeschooling website (yes, we homeschooling moms need to let it out every now and then!!!) http://thepioneerwoman.com/homeschooling/2...artic-exercise/ Don't mean to be disrespectful to anyone's feeling (I so there myself), but I thought a little humor would help Isabel

Can you comment even if you don't vote for one? Is it possible people could be saying they voted but not?

Isabel, I love it! Kinda makes you feel like yelling that at some of the doctors too.... You want the truth? You can't HANDLE Pandas! Hi Karen, I know how you feel! I could go on with my own experiences, but I thought I would share with you'll a little cathartic exercise I found in a homeschooling website (yes, we homeschooling moms need to let it out every now and then!!!) http://thepioneerwoman.com/homeschooling/2...artic-exercise/ Don't mean to be disrespectful to anyone's feeling (I so there myself), but I thought a little humor would help Isabel

Tantrums, when was his last case of documented strep? and how high was dnase or did they not give you a number?

I was more meaning that I was curious as to how long out from IVIG for pandas there is to go by long term effects... I guess that means about 10 years. I am a mom of a kid with mild pandas. I feel like the implication is that if I don't do IVIG than I am not giving my child 100% but at the same time I just think that while people here are seeing some success with it, it keeps cropping up where some people are not. I just hate the implication that if I don't take my functioning child and do this that I am holding him back. Nobody really can say with 100% certainty what the right move is. It's one thing for people to say that for their child it worked and it was the right move and another to imply that by not doing this I am holding my child back from 100% There is no guarantee that this is the answer for everyone.

Does anyone know how long ago Dr. K's first IVIG patient was?

Tantrums.. when my pandas son had the pink eye he did actually have obvioius pink eye to go with it... good question though if one can have it and you not realize it because when I went to my doctor for my pink eye in January my daughter had it too.... I had her and my youngest with me (my non pandas kids) and my doctor looked at my little guy and told me that he had it too. I hadn't really noticed it until he pointed it out to me because it was not pink pink like mine was, but sure enough when I looked I could see why he said my son had it. Of course if he has strep minus the sore throat and is giving it to you and you aren't treating you, I would think it could result in pink eye?

It's a tough one. I had pink eye without strep this year as did my non pandas kid... I don't mean to imply you can't have pink eye without strep. I know that when my son had the pink eye she gave me drops.. when the 48 hour culture came back positive she told me I could stop his drops and she called in an antibiotic. When my non pandas ds had pink eye he was on antibiotics for an ear infection at the same time and the dr. said that if that didn't clear up the pink eye in 2 days to start the drops too because the antibiotics just don't cut it for a lot of people with the pink eye... It was not the same dr. who had me stop drops with my son when he got the positive culture though. Personally if you feel ok, I might not get swabbed... but I know when I had strep I had a very very sore throat and there was no mistaking it.. if you think you could have it without the sore throat....

Jag10, I don't think this is what you are asking but I know that with my pandas ds that he doesn't get typical strep symptoms even with positive cultures. The second time he had strep that I was aware of (prior to my knowing about pandas) I had taken him in for pink eye... the ped swabbed him just because she said she always does with pink eye since pink eye can be the result of untreated strep..sure enough he tested positive.

Is it one vote per computer (isp or whatever) or is it one per email (family member, not talking of separate accounts for one person) ?

I see this too.. .it's probably our main symptom now... fortunately minor, doesn't escalate into huge rages or anything now and he will just put himself in his room.... but he's there right now over something and he finally stopped yelling about how his life his ruined and he will have to stay in his room forever... or something like that... Quite the the dramatic one. The hard part for me is that shortly it will just switch off like nothing happened... while I still remember exactly what happened...