Lisa3

Great I'll call you today

I know there's two support groups in NJ, but nothing in Monmouth County. I would really love to start one and if there's anyone that would like to join forces with me, please let me know. I was out to breakfast with my DD's old home instructor and we were talking about PANDAS. I had a brochure on the table from PANDASNetwork.org and the waitress said, "I don't mean to be nosy, but a know someone with PANDAS" we started taking about how more awarness in our area needs to be raised and how support is so valuable.

I love this idea! My belief as well. Please add us to the list lisa3 (and her 3 PANS kids)

We have three children with PANS/PANDAS and see symptoms in some our nieces and nephews. Wondering how many of you see this in other family members? None of our kids had overnight onsets. All were gradual, only one went into a major flare.

Dr. B has to do the initial consultation after her sees you once then you can schedule appointments with his PA. We've also had nothing but rudeness from the secretaries. We complained and when we did we heard that we weren't the only ones having problems. Dr. B is a pioneer and we are lucky to have him, but it's beyond frustrating dealing with his staff.

Dr. Jones diagnosed my DD10 with autoimmune encephalopathy PANS/PANDAS.

T. Anna he will get there. We are still on our road to recovery, but have come miles in just 6 months. In January of this year my DD10 was flipping mattresses, punching the shower door hiding in the closet and would walk through the house screaming, throwing everything in site against the wall. She has PANS and is being treated for multiple infections, Lyme and co-infections. She has missed the school year. This past weekend she was a flower girl in a wedding. I stressed about the day for weeks prior, wondering if she could do it (thinking there's no way). I'm so proud to say that she was able to have her hair done and wear a uncomfortable dress all day, with minimal complaining. This is a girl who wouldn't wear certain materials or let me come near her with a brush. She danced and played with her cousins until 10:30pm. We paid the price the next day (actually still are paying it), but it was worth every minute.

Prayers to you and your family.

That's so awesome! Woo Hoo

My DD10 has buds on her chest enlarging now. What is that a symptom of?

Mine too - she is 10 and literally fell off the cliff this January on her birthday to be exact. Has been out of school over two months. It was in the works for a while but she literally exploded on her 10th birthday.

I'm interested in this too. My LLMD told me to give my DD10 oil of oregano for yeast overgrowth. Anyone have experience using it? How much, how often. I'm scared to use it because it's so poweful.

My vet said doing a swab wouldn't be accurate so she prescribed an antibiotic based on what I told her. Maybe try a different vet?

Thanks ladies, hugs to you all. We are going to take it slow and steady and start with homebound instruction, I also plan to call The Rothman center, because school refusal is going to be a big problem. All of your advice and encouragement is means a lot.