New to Pandas in Sacramento area

[sacpandasmom]

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!

[Chemar]

Welcome to the forum

 

sorry your post was delayed from showing by our anti-spam software. I am bumping this up so others can respond

[ptcgirl]

No suggestions here since I don't live in that area but we all know how u feel having drs who don't believe u and/or won't take time to review the studies. You are not alone.

[Missmom]

Sorry, but I cant answer either of your questions regarding California, or chiropractors, but if you care to list some of your dd symptoms maybe myself or others would be able to help you find some direction. I am curious what spine issues your dd is having. It is good that you have seen improvement with abx, and hopefully you can continue with that until further testing can be done. Good luck and try to stay positive and focused.

[sacpandasmom]

Sorry, but I cant answer either of your questions regarding California, or chiropractors, but if you care to list some of your dd symptoms maybe myself or others would be able to help you find some direction. I am curious what spine issues your dd is having. It is good that you have seen improvement with abx, and hopefully you can continue with that until further testing can be done. Good luck and try to stay positive and focused.

 

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.

[junkyardjean]

sacpandasmom - reading your posts jolted me - it sounds very similar to my dd4. I have also felt very overwhelmed by the differing medical advice and trying to figure out what works for us.

 

We work with a family dr, ped, naturopathic dr., and a chiropractor - and to be honest, the naturopathic and chiro is where we have seen the most results. DD was diagnosed with RF in Dec. 2012, so does take proph. pen v, but is currently on day 10 of 14 day trial of zithromax as advised by dr. k. It's been hard to tell if the zith is making any difference as dd was exposed to strep & chicken pox right before starting, so she is just coming down from a flare (most of her flares now are emotional & sensory in nature - OCD 75% gone since working with naturopath & chiro on immune treatments)

 

A very wise mom on this board pm'd me with a very great piece of advice for which I hang on to daily - you know your child, your instincts will help lead you to where you need to go. At work, we have a bit of dark humor (social workers), but based in real experience - Try something, if it doesn't work, call it assessment. If it does work, call it intervention - either way, you have to keep trying....

 

I try to find my "wise mind" often, and have pulled together a team of support just for me - when I'm feeling bogged down in opinions, research, figuring out the next steps - I call a "conference" with them and debrief. I'm finding that through the debriefing process, I realize that I do know the path that is going to work for us for the time being....

 

Good luck, and know you are not alone