Lisa3

I 'd love to hear more about this too since this is one of my DD10 triggers.

Thanks dcmom! Decided to do it on day 3.

My DD was put on a 5 day steroid burst 1/25-1/29 while we were waiting for bloodwork results. At that time she was also on Amox. We did see results on day 5, 6 & 7 - then she slid back. After bloodwork she was diagnosed with PANS/PANDAS - with strep, mycoplasma and coxsackie as triggers - labs showed normal immune system. She's on biaxin and valtrex. Dr T ordered a 5 day steroid burst as well and said to use them if she's not coming out of the flare up by Friday. I'm not sure what to do, she's a teeny bit better, but still isolates herself, still has tics and OCD, is still very irritable. So my question is do I start the steroids again? Is is too soon since the last burst? Like I said we saw great results before but they didn't last. Thanks

airial95 - I have been keeping a journal the last two weeks and I will start using the numerical scale. I will use ibuprofen too. Thanks for the encouragement Teri - glad to know you're close and I like that, I will choose faith not fear!

I love this quote from the movie: "This is what I believe to be true: You have to do everything you can and if you stay positive you have a shot at a silver lining."

Thank you ladies - I am terrified because I know this will be ongoing and I have a lot to learn, but I'm also grateful that we are finally on the right path. dcmom, your support group may be a little too far for me - but I'll map it out. It's helpful to know you see Dr. T, I'm sure I'll have some questions for you. michiganpandas, that gives me hope for my dd - She has barley left her room in weeks, yelling at us..telling us to leave her alone. It's heart breaking. One thing I know is that I'm not alone in this )

My dd 10 had just been diagnosed with PANDAS, by Dr. T with strep, mycoplasma and Coxsackie as triggers. Today we started treatment with Biaxin and Valtrex. Before that we were on Azith for 10 days. Amox before that. I can't help but feel like the worst mom in the world because she's had symptoms for years, but I thought she was being difficult or challenging us. It wasn't always bad - she would wax and wane. She often complained of a “tummy ache” and would say “my head hurts” She always complained of being tired and she was often very moody with inappropriate aged outbursts. She always had separation anxiety and would repeatedly ask for something - usually outlandish. She has a history of strep, scarlet fever and pneumonia. My pediatrician knew all these things, but never mentioned PANDAS. She did do a CBC and tested for Lyme which was normal and we also did an xray of her abdomen which was also normal. Her final suggestion was to see a therapist. Okay, now fast forward 2 years - Her acute onset started this year, grades slipping, major separation anxiety, major depression, withdrawn from friends and activities math skills and handwriting deteriorated, clothes and shoes sensitivities - her tics/OCD much worse with repetitive movements kicking her leg and spinning and playing non-stop on her iPod touch or any electronic (which we have to hide). On Jan 10th 2013 after a positive strep test she literally turned into a different child - pupils wide and possessed. Somehow I stumbled on PANDAS myself while looking up 'depression in children' online. I immediately thought “Oh my God, this is her” I asked my pedi(a new pedi by the way) if he ever heard of PANDAS he said he was "sort of” familiar with it, but not really and that I would be lucky to find someone to treat her - someone that believes in it. Luckily through a friend, I found Dr T. I’m hoping now we are one the right track, because this has been beyond draining. My dd has been home bound for a month so far. I'm shocked over the unawareness of this disease. No one has heard of it - family, friends and teachers are all hearing about this for the first time. How many children have suffered needlessly? I’ve been lurking on this forum for a few weeks and I’m so happy to be a part of such a great support group. I’m in NJ (Jersey Shore area) and would love to talk and meet others who are in NJ too.