sacpandasmom

My 5 yr old daughter has this issue as well and also feels like she can't stop urinating and can become very frustrated with the situation enough to cause anxiety attacks or meltdowns. She had her initial Flare up back in Feb was on antibiotics for about 45 day when we took her off and started her on olive leaf extract, a good probiotic and other supplements. She is about 95% back to normal, but this is the one symptom we still constantly struggle with. We had her tested for several ui's and tested her urine for any other bacteria growth. She also had a kidney ultrasound and everything came back normal. She also started bio-feedback PT, which I'm not sure if it is helping or not yet.

Just curious if you have been able to find a treating dr in the sacramento area. I am new to the forum and are from Sac as well and looking for any advice or referrals. We have UC Davis Med group as our primary. Thanks!

I'm still new, but quickly learning lots of new medical terminology, so forgive me if this doesn't make sense. Xrays showed she actually had an extra vertabra in the top portion of her neck (8 rather than 7), which alone doesn't really mean anything, just rare. The very top of her spine, C1 and C2, are not curved the correct way. He believes this combined with the extra vertabra is putting extra pressure on the spinal cord and could possibly be a result of suppressing the immune system and controling some of the behaviors since this is the area sending messages in and out of the brain. It can be adjusted in about 3 weeks. He also works with lots of other kids, adhd and autisic and said he has had success in improving behaviors there. My daughter is neither and luckly hasn't shown signs of either since this hit us. At this point, I'm kinda thinking it can't hurt to have her adjusted back inline. Most of her symptoms are still tactile sensitivity related. She went through the whole excessive wiping and constantly feeling wet after urinating and still battles with that, but on a lesser scale. She also had a big problem with feeling like she couldn't stop urinating once she went and was afraid to get off the potty. This has gotten better w/ antibiotics, but came back over the weekend when we introduced a probiotic (Florastor). I have since removed it from her supplement list and she seems to be getting better again. She also had severe aggression, tantrums and some suicidal thoughts, but these pretty much deminished once we started antibiotics. She says she still feels sad from time-to time and doesn't know why, has trouble falling asleep or getting comfortable at night, dark circles still remain under her eyes, seperation anxiety, regression/baby talk and some small movement/ocd things (Milk maid grip, finger movements,chewing on clothes or hair)- these come and go. For the most part she is getting better, she is just still not the same. I am concerned about having her on long term antibiotics - plus I have noticed they are starting to stain her teeth, but at this point I feel like it is the only thing keeping her stable.

We have recently got a dx of pandas from Hill Park Med center in Petaluma. We went there after being laughed of our ped office when I brought PANDAS up as a possibility after my 5 yr old daughter was sick w/Strep in Feb 2012. We started her on antibiotics about 30 days ago and saw her get about 70% back to normal within a week. Since then, we have seen some symptoms return off and on and some only lessen a bit. We know that if we miss a dose of antibiotics her symptoms return. Has anyone had any success finding a treating Dr in the UC Davis Medical system? Also, we met with a wellness Chiropractor today that feels like her nervous system/immune system may be suppressed by some things going on in her spine. Has anyone had any luck with chiropractic help in resolving symptoms? Any input would be helpful. My husband and I feel like we are swimming in a pool of all sorts of different opinions and not sure what to believe or which direction to go. Thanks!