Doug

We go to Dr.k he is also a very good PANDAS doc. at least I think so.. Tracie

I am happy that it is in the paper but not to happy about the end of it saying that the kids should take prozac and get therapy?? nothing about abx's for a treatment?? I dont get it.. Tracie

Hi Kara sorry I did not see your post but I think you found it is on the pandasnetwork.org that is also a awesome place for info also.. thanks Tracie

Also tell your Doc that PANDAS has just got into the journal of Pediatrics for info on it.

This Forum WILL be your Doctor It has helped everyone that has been on here including us. There is a list of Doc's that are PANDAS Doc's on here I think at the top, find one and call them Dont mess around with a Doc that dont know anything about PANDAS it is just waisting time. We have been to Dr.k twice but I know therre are alot more now who are all doing what they can for our kids I am sorry.. Just remember that he CANNOT control this... my Daughter started when she was 4 she is now 7 and as for now her PANDAS is gone Tracie

Hello everyone I have not been on here for a while but we are on IvIg # 2 from Dr.k and all is going good so far we had it in Feb Anyway I just wanted to let you all know that we took our DD out of first grade this year and I am home schooling her and I am doing the k-12 program and it is very easy to follow if anyone was wanting to go that direction. I am so very calm as far as school goes because I dont need to explane to anyone about PANDAS !! she has a few kids that she can play with after school that understand that if they are sick that they cant be around her so that is nice.. We will see what happens next year. Tracie

So what abx are you giving and how much?

Hello Everyone, Lauren is now 7yrs old and is 4 1/2 months post second IVIG, she has been doing great, until 3 weeks ago, we think it was a loose baby tooth and a new tooth coming in. We have been giving her a 250mg Azithromycin every other day " She weighs just 43 lbs " She started having mild seperation anxiety and and worries. We started daily Azith and it calmed down we did this for 10 days, then it came back so we did this again for 14 days and it went away. Now we stopped and went back to every other day and once again it appears to be coming back. We doubled based on Dr. K's advice. I am wondering if we need to keep her on a full dose for longer or a different antibiotic? Does anyone have any thoughts. Take Care, Doug Patrick

Our BCBS has paid both time for my dd ivig with Dr.k but only for that,they dont pay for him as the Doc because he is out of network,but some money is way better than none for sure. all the rest we us on our taxes,hotel,food,flight tickets and rental car. Hope all is going good for your son. Tracie

It is nice to read a happy post!! I don't think we can ever give up hope because the hope IS out there for our kids we all just need to find what works. Take care Tracie

Thank you..

Thank you Mary.. the weird thing is that she is NOT sick???? at all It might be her loose front tooth that is the only thing we can think of but it is so off and on.. right now as I am sitting here on the computer she is down at the neighbors house catching bugs... she could care less about where I am.. so that is good we will just need to watch and see I am giving her 250 mg of azith everyday for 10 days per Dr.K then we will see. I hope your Mary is doing ok. Tracie

Thank you.. we are on our second ivig.. I know it works... and she is doing so much better but it's the little things that freek us out she say's it's not PANDAS.. but I think she would say that because she dont want to have ivig done again... but she would know if it was PANDAS again.. I pray I pray for all of us..

Please God let this just be a bump!!!! We cant handle anymore.... Tracie

OMG Have a good day!!!I think we would ALL love to have that day by the pool... ENJOY IT Tracie

WOW what a great link My DH will love reading this... I even read most of it.. We have has 2 HD of ivig with Dr.K and we are on azith 250 every other day for a year would that be pulsing?? I know it all started with her ears..... she had so many ear infections... Tracie

When my dd started with the food OCD we would just feed her what she wanted... and most of the time it was junk.. But she was eatingI bought her some pediatric protein drinks chocolate... she would drink them all down without a problem... someday's that would be all she would drink/eat.. IVIG has helped all of that for her. I am sorry I hope he feels better soon... Tracie

LOVE IT !!!!!!!! it is a nice feeling I think we all learn to do the happy dance with the good day's and try to keep it in check with the bad day's... So today DO THE HAPPY DANCE !! Tracie

Yep honey works... not all night but long enough for my dd to get to sleep and I agree with you I thought my dd just had a BIG TIME sweet tooth but mabey her body is on to something.. I just make sure she brushes her teeth more.. I am not worried about her weight because she weighs nothing as it is.. ( I wish that was me my dd will do anything for Chocolate.....

I did the same thing with her shots.. she hates them so bad so her doc said well we can combind them and just get it all done with.. I wish I could take that back also.. but I was thinking about my dd.. But I think she was already starting PANDAS but I can't remember because we did not know at the time about PANDAS.. Tracie

Yep... my dd 6 was ocd about dying so she would always ask how old is to old when birthdays came around for anybody.. she has started to mellow on that we had ivig # 2 in Feb and she is doing great. Tracie

Find a PANDAS doc don't mess around with local Doc's if they don't believe you you will just waist time and money we went to dr.k also he does ivig and knows what he is doing. Dr.T is very smart and will tell you what tests to run,and he will get you on the abx's but I dont think he does IVIG I have read that dr.B is also good get ALL the blood tests done even the one for lymne.. you just never know stay strong Tracie

My dd has NEVER tested + for strep.. They think it started with all of her ear infections when she was little Tracie

Find a good P.A.N.D.A.S doc.. we go to Dr.k dont mess around with local docs that dont know anything about pandas you will just waste time and money. Tracie

Oh yes call anytime:) The steroid burst just helps to settle things down It made my dd very hypper that was about it now after ivig he will give you a rx for a steroid to help the stuff that comes with the day 2.. Tracie