aaarrrgh

So true!! But as I sit here and wait for some kind of response from Dr T, with test results from a week and a half ago...Its really hard to be patient. There is no doctor that I can go to here and so try as I might, I still find myself checking the phone, emails!!

Thanks so much Susan!

Hey all, Did a phone consult with Dr T today. We are starting her on Antibiotics and steroid tomorrow morning, and taking Florastor for digestive health. We will also be getting a number of tests done to see exactly what we are dealing with! It was sooooo uplifting talking to a Dr who was on the same page!!! I have new hope and we are moving in the right direction. I feel better than I have in months!! If your out there are looking for information, its here, ask, there are alot of people who have great advice, can guide you in the right direction or share a story that makes you feel not so all alone. The most important thing is don't give up, if you think its PANDAS find a doctor that will listen, if they won't don't waste yours or your childs time. Find someone who will!! God bless this site!!

Very interesting. Dr T is starting my daughter today on Antibiotics and steroids, he recommended getting Florastor, which maintains the balance of the intestinal flora.

P.MOM Awesome!! I've become a fan and pasted in on FB for all my friends and family!! God bless you!!

Thank you all so much for all the support, and everything. I got a responsse from Dr T. we are going to have a phone consultation and said he would be willing to be my daughters doctor, getting tests done, etc. While I'm not ruling out IVIG just yet, I have to look at all the options. I know that with her age, we can't wait and need to do something ASAP as her symptoms seem to get worse on a daily basis. I am feeling a little less helpless now and its all thanks to you all and this wonderful site. I don't know where I would be without it at this point. I will continue to update you all on what happens. If your reading this as a new member looking for answers, don't give up!! Your in the right place and while opinions may vary here, there is hope!!! I feel like I have gotten my second wind and while yes, I still cry at the drop of a hat sometimes, I'm coming out swinging!!

Where are you located? I am in NW Georgia.

Faith, It was a sudden onset in December of last year! No recent vaccines. Having trouble finding a doctor in Georgia that knows how to deal with this. Excuse my ignorance but what exactly is a DAN?

wanted to tell you, I sent an email in detail to Dr K and Dr T. with a copy of the Lab results from Dec. Dr K replied back within the hour with Yes, it looks like your daughter does have PANDAS and everything done until now has been essentially a band aid. Antibiotics work only temporarily and you have experience that. The only real option you have (and that one is becoming more and more of the question because of your daughters age!) is the IVIG treatment that should be persued ASAP. I replied back IVIG? I'll have to look into that one. Do we have any other options? How much does her age define what we can do? He replied No, you don't. I geuss I wasn't expecting that, I haven't really done any research on IVIG because I honestly thought that was for severe cases. Seems very invasive. Can anyone tell me what they have experienced with this procedure if they had it done?

Thanks to you all!! I started sobbing as reading all of your posts, I don't know if it was because relief of someone actually listening and I'm not alone after all or the validation that something else needs to be done and I'm not just a crazy mother that is being unreasonable with the pediatrician. I am def going to contact Dr. K and/or Dr. T. Hopefully they will be able to at least lead me in the right direction and give me some info so I can bring the print out to the doctor. My daughter was taken off the Penicillin because the doctor thought that should have taken care of "it" by now. The only thing that she has told me is this could go on for up to a year and she needs to increase the zoloft to 50mg. when I told her that I didn't think the zoloft was working and I didn't really want my daughter on it she looked at me as if I had two heads and neither one knew what was going on. She said I have several kids that are on up to 100mg. All I know is my daughter is at the I don't care point, where nothing is helping so "whatever". As far as tests, while she was in the hospital she had blood drawn and that is how they came to the conclusion that she had pandas. We were given a summary of lab tests but not really sure what I'm looking at. I have seen on this site about ASO and that was 256.4 back on december 20. but I don't recognize anything else. I thought the Dr would have done more tests by now but she doesn't listen and Im all but convinced we should seek another doctor. Thanks so much for your understanding, I can't tell you how much it means to me. I will keep in touch and let you know how things go. God bless you all and God bless this site for being the light at the end of the tunnel, okay I'm crying again!

Hey all, We are fairly new to PANDAS Syndrome. My 15yo daughter was diagnosed in December, right before christmas. we honestly thought she was having a breakdown with the very bizarre thoughts she was having. We took her to the ER, they recommended her going to a mental health facility for three day observation. (that was a horrible experince in itself) She was put on Zoloft, Risperdal, and Penicillin. On the last day she was diagnosed with Pandas, and was released. They made appointments for Sleep deprivation EEG, and MRI. gave us a pediatricians name who was familiar with pandas (but has never seen or treated it)and we were sent on our way. Well, we still haven't heard about the EEG or MRI, she has been taken off the Penicillin after a month. We have seen a psychologist, who is very nice but has never heard of pandas. She has been taught coping skills, but the OCD's seem so overwhelming sometimes, that they don't help. My daughters seperation anxiety is getting worse, she cries in the morning when she has to go to school and I have had to literally pull her off me a sometimes, night time she cries because she doesn't want to go to bed and be alone. Must be around me at all times and if shes not she worries something will happen to me. Being social at school is non existent, she has no desire to talk to her friends and doesn't want anyone in her "bubble" Joint pain, can't sleep, ear aches that have been going on for months, mood swings. depression, Took her back to the pediatrician, who always just checks her breathing, ears and wants to up her zoloft. She now thinks that its more than Pandas. ????? We finally found a psychologist in Atlanta but he doesn't take insurance, the pediatrician wanted his number and called him. now my daughter is on Clonidine to help her sleep. I'm so frustrated at this point. If it wasn't for this website I would totally be in the dark about what this dreaded syndrome is even about. We can't afford to take her to the Dr in atlanta. I'm tired of trying to educate everyone with the little that I know. Its taking its toll on the whole family. Does anyone out there have any advice or anything? Any vitamin supplements that might help? I have read through alot of the information that is posted and honestly can't really understand some of it but I geuss thats because I haven't been through as much as some of you and my daughters symptoms aren't as severe as some of your situations. If nothing else thanks for listening and letting me be heard!