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cranio sacral therapy? neurofeedback?


Hayley
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We have a homeopath who did CRT on my oldest daughter (not PANDAS) for ear infections several years ago and I also just recently heard about the positive effects of neurofeedback. Trying to figure out if either is worth pursuing at this time for my dd who will be 7 next month.

 

We're still pretty new with this all, not even dx'd difinitively due to normal bloodwork/no documented strep. First symptoms started 7/8 and while we started Azith 8/8, we were on again off again due to a neuro who didn't know her stuff. We are just now (thanks to my pediatrician!) getting her daughter on a stable course of ABX that seem to be working overall (though still not fully stabilized with some ups and downs), waiting for a phone appt. with Dr. T this thursday and an in person with Dr. L early October, and have a parent consulttion appointment and appt. for dd next week with a psychiatrist who is suppsoed to have pandas expertise.

 

Anyone who has tried Cranio Sacral Therapy and/or neurofeedback with their PANDAS/PANS kid have thoughts on whether I should get started with either or both sooner or later? My daughter just started school and is doing ok under the circumstances, but I feel like it's a bit precarious so I don't want to start pulling her out for 1,000 dr.'s appts and I realize I need to prioritize. Maybe wait to see what hte meds do first? Or has one of these approaches made a real difference for anyone out there alone or in combination with other protocols?

 

And if anyone who swears by neurofeedback has used someone in Maryland/DC Metro area who they can recommend, please PM me with contact info.

 

Thanks in advance for any feedback!

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We tried cranio-sacral therapy but didn't see any positive impacts by virtue of it. Admittedly, though, our results (or lack thereof) may have been because DS wouldn't buy into it at all. So we all left the experience feeling a little as though we'd just tried the village witch doctor, and he'd lost his touch. ;)

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yikes - no lovers of CST here, i guess.

 

 

we did do it early in ds's treatment. i found the practicioner b/c he was also a provider of a type of homeopathy i was searching for - pleosanum. at the initial visit, ds was about 5. he was sitting in my lap for the treatment. it was very bizarre, that at one time, it felt as if someone placed a large vat of boiling water in my lap -- he emitted outrageous levels of heat. we continued for a while -- not huge gains, more like subtle things i could be noticing. we stopped b/c we began to investigate lyme and that practicioner referred us to our current integrative MD and i had to make financial choices. i do think i'd like to do it again sometime in the future.

 

when we switched treatment, we discovered multiple bacterial and viral infections for ds. we continued on strep treatment for likely 18 months before we could scale back without symptoms -- so that would liekly be hard to overcome with CST. my general opinion is it is likely a good addition to treatment but will not be a big 'cure' in and of itself. the practioner we saw is in Silver Spring and i very much like and respect him. i do think it likely depends very much on the practioner.

 

i do have an interest in neurofeedback but have not done it -- $. i know of someone in Frederick who could be promising. we had a terrible experience with him concerning a consult for cognitive testing. somehow, i still think he may be okay for neurofeedback. he said he sees good results with it for anxiety.

 

i also met a PT who was extremely bright who does CST in Columbia area. again, only so much $ for treatments - but she seemed extremely savvy and gifted. i do know she has one patient with autism and pandas.

 

please keep me posted if you follow either of these!

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We've used CST for several years now and have experienced some good results. CST has helped to CALM our son down and help keep him more in balance. There was a time a few years ago when we were going to our CST therapist 1-2 times a week to help stabilize our son. Now we go every few months, more for a quick tune-up.

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