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Showing content with the highest reputation on 04/29/2018 in all areas

  1. Well that's an interesting link. I sent this homeopathy practitioner an email to find out more about this particular case, maybe she's open to sharing more info. In terms of my son, we have tried almost every holistic avenue to cure his PANDAS, before and after we knew it was PANDAS. I work in an integrative practice, so my inclination is natural means but am willing to include the medical because to me, that is "holistic" - the inclusion of all of it. We have done herbs and supplements, enzymes, all kinds of gland and organ supports, acupuncture, chinese herbs, a number of kinds of body work and body-based therapies, ayurveda, detox, anti-inflammatories, prayer, shaman healers, chiropractic, psyche meds including natural ones, gut and liver supports of all kinds, energy healers, reflexology, cranial sacral, psychotherapy, emdr, nlp, biofeedback, juicing, a zillion different versions of diets and allergy elimination, rotation, wheat free, gluten free, chemical free, dairy free, whatever free. Gosh, we have gone broke doing all these things while having Kaiser insurance that covered zero, plus they did zero of the testing he ultimately needed except they were willing to do an ASO titer (which when it came back as 600 they just shook their heads and suggested 5 days of zithro). Nothing in and of itself eliminated the situation. At different times, different things did help. There are a couple of main things. THE FIRST was, a specific form of cranial work that DS has had, helped him tremendously from day 1 before we ever knew it was PANDAS. We had spent 1 1/2 years thinking this was a psych issue. Then our third therapist had the brilliance, after 2 appts, to say hey, this is an organic tic disorder not a psych issue, and she referred us to a chiro who specializes in neuro and cranial stuff, a lifesaver, literally. All we knew is that it transformed our child from an 11year old becoming less and less functional and barking and shaking and ticcing and up all night into a sleeping much more, no more verbal tics and definite coordination improvement almost immediately. Really it just took the edge off and helped us see more of DS's baseline without the added cranial structural stuff he had for whatever reason putting extra pressure on already inflamed brain tissue and cranial nerves. It was a Godsend and continues to help tremendously, although he's in such a different place now. It also was the first clue that what we were dealing with was inflammatory, as that is not a typical tourette's scenario. SECONDLY - testing. Thorough and complete and accurate testing. Doing a full GI workup and the right blood testing gave the kind of information that was targeted and showed us how to tackle it head on. We would never have known about the celiac if we hadn't gone out of Kaiser's system (their one TTG test showed negative but that's not a great test) or about the clostridia in his gut. Or the methylation problems. Or certainly about the PANDAS. But getting off of Gluten changed his entire existence from a puffy achy bloaty pastey waterlogged child to a pain-free (almost) unbloated less waterlogged almost normal looking child with a tad of color in his cheeks. and the stomach aches went away completely and stinky awful poops. It took alot of supplements to clean up his gut and then help rebuild his damaged intestine and intestinal lining, months, before we felt we could even start him on antibiotics (we found out about the PANDAS at the same time we found out about the celiac). THIRDLY - natural anti-inflammatories esp Avipaxin, which reduces inflammatory cytokines in brain, also some very cooling chinese herbs, and methylation/liver support and magnesium magnesium magnesium, and oils. AND FINALLY - IVIG. 2 months post IVIG, oh my gosh. The other night after a basketball game one mom came up to me and said that parents were remarking in the stands at my son's extraordinary progress and coordination improvement on the court in the past 2 months. They did not know what he has been dealing with. Life is better so so much better in my house. OH, one last thing we are now working on. A few weeks ago, my DS had this wierd stomach feeling and then it made it that he felt he couldn't take a deep breath or something, and it created a few weeks of anxiety as we ran our circuit of healers and no one could make this go away. It occurred to me that perhaps, if you or I had originally felt this symptom or set of symptoms, we probably would have noticed it and then not really stressed over it and more than likely it would have eventually gone away. But because my dear boy has grown up mostly ill his whole life, when he gets a symptom his entire little being focuses on it and worries over it, and maybe, makes it bigger, i don't know. So i decided that maybe a part of him had to remember his healthy self inside him, and help him to maybe re-wire some thing in there. I had this picture of like, a tuning fork inside him resonating out, hello, this is who you are despite all of your years of suffering and illness, and maybe remembering this would help him. So i brought him to a somatic therapist, who also does clinical hypnotherapy and calls himself a "psycho biologist" or maybe a bio psychologist? Anyway, after 2 sessions, all of this breathing stuff is gone and DS is learning some wonderful skills about dropping down into some healing space and bringing his power back together as a whole being. All of this said, he's still on antibiotics and a host of supplements and will be for however long it takes. And i'm still broke. But i think of the term "holistic" as being very inclusive, so that everything is open territory and that we can pull from all realms of healing, and that each child's path is unique. Anyway, sorry for the long post, but maybe something in here might help someone.
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