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.

My DD10 saw an LLMD for the first time today. It was our first visit so it was bloodwork, assesement and history He said she has a yeast overgrowth based on some kind of muscle test he did, he also saw thrush on her tongue. He said to use Klaire labs probiotic for her and eliminate all sugars and carbs. He didn't prescribe an antifungal though. Should I call back tomorrow and ask for one? It didn't dawn on me until I got home. Will a probiotic get rid of the yeast infection? No, right??

I feel better that I'm not alone - not that I want anyone else in the same situation, but we have each other as support. As my DD10 is sitting on the couch she's not alone We met with "the team" at her school this morning. I walked away feeling worse instead of better. I feel like I portrayed her in the wrong way. I probably said more than I should have on what's been going on at home because in the end, the social worker was like have you thought about taking her to a psychiatrist??? She also kept stressing that they need a plan in place at the school when she returns - like she's some kind of bomb that will go off at any time. Ugh, sorry venting.... They were very anxious to start homebound instruction. Someone is coming today. I'll let you know how it goes - something tells me it won't, but maybe I'll be surprised.

Thanks so much smartyjones I'll check it out.

Just curious how many of you have your child home? Last Friday I though my DD10 would be able to go back to school for half days. I was wrong, she's so not ready. I meet with the team at her school this morning. How have you handled long term absense? Do any of you home school with success? I don't know if that would work for us because I can't get her to do any make-up work. She's also refusing to have a teacher come to the house. Quick background diagnosed with PANS, by Dr. T with strep, mycoplasma and Coxsackie as triggers. On Biaxin and Valtrex. Early symptoms complaints of “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. 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).

My DD10 has been out of school for almost two months. She is supposed to go back tomorrow, doing half days for the next two weeks. I'm so stressed out about school for some reason. Her routine at home isn't helping her - her obsession is her iPod, she can play 24/7 and when we take it away (she's on a limited schedule) she flips out and gets extremely agitated. Did I mention I twitch when I hear the word "iPod" While she's finally able to focus on a book (Diary of a Wimpy kid) or TV show, she's still very on edge and I highly doubt she'll make it in tomorrow or this week for that matter. Wishful thinking on my part. we would see progress - one step forward, then she takes three steps back. I have a meeting in the morning with the principal, teacher, school nurse and social worker to talk about PANS. They are very open and receptive to what's going on, but I want to bring info in with me to educate them the best I can. Does anyone have suggestions for handouts?

Thanks tpotter, I feel like it's a stupid question - but at the same time it's information overload to me. Mary wag yes, I believe band 41 means any bacteria with flagellates. She was tested for co-infections and was negative. The testing was via Lab Corp and she was on antibiotics at the time. I'm really looking forward to our visit with the LLMD on Tuesday. For us this is only the beginning. Lyme Mom, your story is inspiring and it's nice hearing positive outcomes.

Just curious, my DD10 was diagnosed with PANS by Dr T with strep, mycoplasma and coxsackie as triggers. Her labs showed a "normal immune system" She had a present p41 band. Dr T said she didn't have Lyme, but I am taking her to see a LLMD on Tuesday, because I feel like she does. I also feel like I've turned into a crazy lady, reading everything I can get my hands on. My question is are her symptoms just neuropsychiatric symptoms from Lyme? Has anyone thought their child had PANS/PANDAS to find out Lyme disease is the culprit? The symptoms are so similar - I'm just a little confused. I am positive for Lyme Disease and am being treated. Waiting on bloodwork for other two kids. Thanks!

Just wanted to thank you ladies! My dd has an appt with Dr J in April, hoping to get in sooner. My DH and I got tested last week and I came back positive for Lymes, I was shocked to say the least. I have symptoms, but attributed them to getting old and burning the candle at both ends. My other 2 kids will be tested next week. We have always been an outdoors family, hiking a lot and vacationing in Maine and New Hampshire. I always feared LD, but also thought it wouldn't happen to us. Boy, was I naive.

My DD10 was just diagnosed with PANS by Dr. T her triggers are strep, mycoplasma and coxsackie. She is being treated with steriods, Biaxin and Acyclovir. Her Western Blot was negative except for IgM P41 which was present abnormal. Dr T said she does not have Lyme, but it's not sitting easy with me. Has anyone been told their child didn't have Lyme to then find out they did? I'm in NJ - if anyone knows of a good LLMD that we can see could you please PM me? Thanks, Lisa

My DD10 IgG is 1731, her IgM is 1282, she is on her first round of Biaxin - Dr T is treating her. Her Western Blot came normal except for an abnormal IgM p41 Ab. I'm still concerned and want her tested further for Lymes. Everything I've read on Mycoplasma says it's very hard to treat. We've been homebound for a month so far.I hope we're on the right course, seeing small improvements.