P_Mom

Pass!

Yeeee-Haaaaa! We can, or, I mean ARE going to do this!!!!!! KEEP VOTING!

Okay, sorry, but I have a different take on this than the majority on here. I wasn't going to respond, but, I can't sleep. (what else is new) I think the majority of us have dealt with this type of......."it is just behavioral" stuff. Anyway, I'd go to my Dad's house on Father's Day! You are already giving this woman too much....don't give her this now. People like this feed off of how they affect people...they love to see what impact they can have on things/people. Staying away or even getting into it with her would just be throwing in the towel and giving her what she wants.....she'll LOVE the fact that she gets to you so much that you avoid her. Yes, you need to fight back, but, in a way that will drive her nuts! Go....be happy...enjoy your Dad (you never know when there will be no more Father's Days)........be kind to her, but, not overly engaging. Smile.....IF she brings up anything about your son.......just stop, look at her, smile bigger, then, turn your head (ignoring the comment) and begin speaking with your Dad or whoever is near about something else. Tell everyone to do this if she tries to bring the subject up with them..........don't give it ANY attention on this day.......don't let her get under your skin about this......if you can do that, now, that is victory! If she is smart, she'll get the picture eventually and drop it, and, hopefully you two can have a better relationship in the future. Not going to your Dad's, fighting with her, or even trying to convince her of your child's PANDAS........waste of time and energy! It is stealing away from YOU....not her. Forgive me, but, to me, it would be like giving in to her crap. Who cares if she believes you or not?? YOU know what you know and that is all that matters! I agree with your last statement "I have bigger fish to fry." Everything will come around full circle someday. I say Go! Smile...have fun....ignore any and all references made about your son! Sorry..........this is just my opinion and what I would do.

Remember that Dr. Latimer is out indefinitely....I wouldn't suggest her right now.

My older, clearly PANDAS son has a Cam Kinase score of 112...... he was called low positive in an e-mail from Kathy Alvarez, but, when the hard copy came in the mail, he was marked negative for PANDAS range Cam Kinase. He is a mild case caught early...... makes sense he would be in the low range. If you look at the graph, he overlaps with normal and PANDAS...just on the borderline.

Bump again. I am becoming suspicious of the "cured" responses since no one wil come on here and fess up to placing those votes and tell us their story! Sorry, everyone! I just REALLY wanted to hear about it.....don't we all??!! I'll leave it alone now........

Bump. Sorry , guys, But I would really like to hear from the people on here who have cured children! They must be on because it did not take long for them to answer the pool. If my child were cured (in the true sense of the word) from IVIG, I would be shouting it from the rooftops and helping other people out by doing so. It would really help to hear the stories! I know, at the crossroads I am in right now regarding IVIG....I really need to hear it. By the way....to those that mentioned I just ask Dr. K, well, I did....he responded..... "yes", he still holds by his claim IVIG is a CURE! Complete and lasting CURE of the condition. Kelly

I am ASSUMING it could, given that a burst supresses the immune system....giving the yeast a better chance of survival.?

It is always GREAT to hear good news about PANDAS kids...always! I hope it continues for you, Steph! So, just to clarify things...were you one of the people that voted cured?

Could the two people that declared their children cured from IVIG PLEASE chime in and tell us your story! We would all LOVE to hear about it! Kelly

I have been corresponding with Dr. Cunningham here and there to keep her up to date on the Pepsi Project. Because of recent questions regarding the heart and PANDAS, I thought I would ask her opinion in my last e-mail to her. I asked her, since I know she studies the heart and the affects autoimmune conditions can have on it, what her opinion is on PANDAS and the heart. I asked if she has ever seen heart involvement with PANDAS and if she thought the two were related. I got a very brief response, but, a response nontheless. "It is probably rare that both would occur in the same individual but it is possible. We are looking." This goes along with what all the other top PANDAS docs have said.........they are not finding a correlation between heart issues and PANDAS.....and this is good news! I am glad Dr. C is looking into it anyway.....but, seems to me she hasn't found anything yet.

Holy cow!!!

I vote nerves!

Jill, I looked up the definition, too! (before you even said you did) Regarding anxiety with my son....after a steroid burst, he was so calm, until he got Pertussis. He handles school with no problems and has no special accomodations........no issues that I am aware of....no concerns from his teacher. He is an over-achiever for his grade....I think the little guy missed less than 10 points total in all subjects the whole year! He plays baseball and does well with that too...no problems or issues. He just tells my he feel "bothered" all the time. That bothers me! Perfectionism....yes, a little, but nothing that concerns me. Mom with ocd son....thanks for telling me I wasn't crazy....I needed that! Fixit.....my kids are 3 years out from their "episode"....they are no way cured........that dang PANDAS is just below the surface.....keeping held at bay by keeping strep away with antibiotics. Peg...your story is indeed touching and I am so happy for you and your daughter. So, everyone........I know Marci Linchtenwalter, Jamie's Mom, said that since Jamie has been a teenager and off antibiotics, he has gotten strep again...just recently actually. Remember, she just managed his PANDAS with Amox. until he was able to go off....like Sammy. No IVIG, steroids, Pex. Anyway, I asked if he got his PANDAS symptoms (tics, ocd...did you see her video clip) when he just recently got strep...she said NO! Just that he was really run down for a bit. So, is that a child growing out of it as a teen???? I am actually thinking about letting my boys go off antibiotics for a bit this summer.......their symptoms do not escalate off them......maybe just a couple of weeks or so.....give their tummies a break and pump them with probiotics. Now, that may be crazy........right? And, where are those people that voted "cured" for thier kids? You really need to please tell us your story!

Faith, You know, Dr. K did tell us not to worry so much about the tics....he didn't seem concerned with them....he said the tics go away. He was more concerned with my boys behavior, how they were doing in that area. If that is the case, then IVIG for my older son wouldn't be necessary, as Dr. K predicted. He only has tics that range from zero to moderate. Moderate episodes only rarely, and very briefly....... he is usually at a 1 or 2 in a scale from 1 to 10, but, right now he is dang close to 0. So, for him, if the tics go away, then, no concerns there. His behavior is good....no anxiety or ocd....just some ADHD type behavior in the initial episode...that is gone now. My younger son is the one I worry more about. Besides tics, he has the behavior stuff.....the ocd, anxiety, etc. He is mild right now, but, some anxiety seems to always be there. Dr. K said for him, he would most likely need IVIG. He also said that the anxiety stays (if you don't get IVIG!) I suffer from anxiety and it STINKS! I don't want my boy to have to deal with it for the rest of his life....that is where I am stuck with him. Would IVIG get rid of the anxiety??? Who knows?? Anyone? Debbie.......PLEASE keep us posted on how your children do with IVIG. Your son sounds alot like my younger son (symptom wise). Am I crazy.......? Am I the only one on here, that, when initially reading Dr. K's site, was ready to jump all over IVIG because he uses the word "cure" on his site in regards to IVIG? Am I the only one who feels the word "cure" should mean exactly that?

Great news, Amy! Does your daughter ever show any symptoms at all....however minor?

Great news, Amy! Does your daughter ever show any symptoms at all....however minor?

Great news, Amy! Does your daughter ever show any symptoms at all....however minor?

Just something that may reassure you, SF Mom. Some docs can hear heart murmurs, some cannot. It is entirely possible that the docs missed the murmur in the past. Also, many children have heart murmurs while they are young, and, they resolve over time....fairly common. My 7 year old PANDAS son has a heart murmur, or, a click, as they called it..............only ONE doc we have seen was skilled enough to hear it (we have seen tons like everyone else)....all the rest missed it. It is not new since PANDAS, has nothing to do with PANDAS, and, we were told to forget about it. My doc declared to me last year he heard a "very loud murmur" when listening to my heart. I was sent for an echo, and, there was nothing found to back up what he "heard." Granted, if the doc said he heard a murmur, yes, you need to get it checked out, just to be sure. My bet, and my hope, is that it is benign and has/had nothing to do with PANDAS. Hoping to hear good news!

Thanks for the info. Vickie! Getting ready to do this today! Kelly

OKAY, ANOTHER CURED response. Please, those 2 that posted that....please share your experience. It is very important to us all! And we would all LOVE to hear about it!

Jill.....I would think, being that Dr. K, L and T have been treating these kids for a decade, on average, that if they kept records on these kids, they would indeed have enough info. and time to find out what happens after these "cured" kids get IVIG or PEX, go off antibiotics, and then get strep. I know Dr. K takes the kids off antibiotics after a year....so, he should have that info. IF he has done proper follow-up on these kids. And, if it is a temporary cure, or, partial cure, why does he not say that? Why does he say "COMPLETE cure of the condition?" Right, there is not enough info. kept by these docs over the long haul to claim cure......that is where I get caught up with Dr. K's statement....and it doesn't help my anxiety at all to hear him say that....only makes it worse! As far as the last statement regarding kids being asymptomatic off antibiotics, getting strep, developing symptoms, getting antibiotics and becoming asymptomatic again....you say that is pretty much close to cured. I say no, not close to cured at all in my opinion....just properly "managed." All I want to hear is Dr. K say that IVIG can "manage" a child....that is all he really has the right to say at this point! Do you know how many parents that go to his site are getting IVIG for their kids hoping for a cure because of his statements? I bet dozens, and dozens! And I do know that some know better and realize that IVIG is most likely temporary, and, they are happy with that. Sorry if this upsets people or is disagreed with by many....but, don't we deserve the truth???? And another thing that bothers me......I feel huge pressure to get IVIG for my kids before they hit puberty because Dr. K says it becomes ineffective afterward! Dr. L and Dr. T say that is NOT the case....but, it is a parents natural tendency to err on the side of caution, right? So here I am, with two mild boys, wondering if they need IVIG, wondering if it will "cure" them or bring them to absolute 100% (there is not really anywhere else they can go...improvement would make them 100%, I assume, they are currently at 97% and 93%, I'd guess)...and, on top of that...feeling alot of pressure to do it NOW or my chances will be shot.....my older son is 10/12. Dr. Cunningham stated that Cam Kinase burns out with time regardless of treatment....she says that IVIG is not necassarily needed for these kids! UGH!! Who to believe ? What to do? I know it is an easy decision for the kids that are in crisis and not coming out of it.....but, what does one do in my situation? Any advice?

Who is that? This cured person....please share more!

Computer not freezing today!!

Someone on here (1 person) posted their child was cured with IVIG!! I would like to hear more about that....... Everyone is in a different boat with PANDAS.....and I understand those who say they are only looking for improvement, and that cure does not matter to them, however, it does matter to me. Debbie.....what were your kids symptoms, and, how bad, when you got IVIG for them? What does Dr. B say about IVIG? Cure? How did he get insurance to cover it? Thanks!