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Showing results for tags 'PANs/PANDAs'.
Found 6 results
Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
sriramcs posted a topic in PANS / PANDAS (Lyme included)I ran into someone in upstate New York named Will Cook who had put his son through 2 years worth of antibiotics before his son's white blood cell count dropped and he ended up going down the path of essential oils. He has this thing patted down to a science, the usage of the essential oils, and detoxing. He is a pastor who spent a lot of the last 3 years studying about PANDAs and PANs and in 4 months of essential oils usage, his son came out of the motor tics, mood swings etc. and has never looked back. I am in personal touch with him and he is helping my daughter with a personalized plan. He is not a doctor, he is just a pastor but he is currently helping about 100+ families. He has done lots of research, as you can see on his website below. He saw the video of a Mom named Chelsa applying Essential Oils to her son Joey that took away his motor tics. Chelsa helped Will and now he is helping so many families of parents with children that have PANDAs or PANs like symptoms. Will keeps in touch with some prominent PANDA doctors in Connecticut and New Jersey and publishes articles on his site that he gets info about from them periodically. He had hit rock bottom with his son when his white blood cell count dropped to such levels and felt he had to seek alternate treatment. That is how his essential oils investigation and depth of information on his site came all about. Just thought I'd give you some background info if that helps. In case you wanted to see it, here it is: Video of joeys journey with motor tics, taken by his mom Chelsa who helped Will Cook initially: http://motivatedfamilies.com/joeys-journey-essential-oils-for-motor-and-verbal-tics/ Will Cook's page regarding Pandas and articles and testimonies: https://www.facebook.com/Pandashopeforhealing While I am not 100% certain my kid is a PANDAs or PANs kid, I do know she has motor tics following the flu/Tamiflu, and has had some mood swings in the past though none like a meltdown. She does feel calmer with the essential oils and sleeps well since I started it a week ago, the tics still persist. I feel that I need to exhaust every natural means along with diet to deal with the bacteria and viruses. I am giving the Essential oils a few months try to the best of my abilities. Wish me luck. Best of luck to all of you parents!!!
Rachel posted a topic in PANS / PANDAS (Lyme included)If you have had this panel ran, I would like to know what symptoms your child is experiening. My son tested highly likely after his symptoms flared but he has also been diagnosied with another medical condition (POTS). I know some of the symptoms that he has does not belong to POTS and I was trying to figure out what goes with the anti- neuroantibodies that are found in the Cunningham Panel. My son is still in this study and the second part of the study deals with the antibodies for the heart. These antibodies have also been found in my son. I understand that these antibodies are associated with scarlet fever or rhumatic fever. I have learned that these illnesses can be caused by strep. However, I would really like to know what symptoms are associated with the brain antibodies. I was sent a couple of studies along with the test results but they did not go into detail about the symptoms that the kids were experiencing. I have found some information on scarlet and rhumatic fever symptoms. I suspect that my son probably had rhumatic when he was three years old. So if this happened first then I think the brain antibodies would come next if the strep did not get cleared up. Would like to hear what symptoms the brain antibodies are causing in your child?
Hmrz posted a topic in PANS / PANDAS (Lyme included)My son had ivig feb 26/27 and has had two pretty significant rages since. At first he seemed so different but now I wonder if that was some kind of placebo effect. I have read everything I can find about turning back the pages and herxing but I guess I am now wondering if I'm just trying to make all the info fit my situation. I don't want to lose hope and give up. I feel so lost and alone. He is not impossible acting all the time which makes me wonder if turning back the pages even applies. I guess I would just like to know if I need to change everything I'm doing. He had HD 2g over two days. Sorry this is so disconnected. The huge knot in my chest and stomach is giving me enormous anxiety. I would love to talk to anyone with advice or anything that applies.
My ds9 is having his first ivig next week in our home. I fear he will not be able to follow through because of his fear of the iv. Any suggestions about how to prepare him? Also I know each situation is unique but what was the first sign after ivig that you were on a good path for recovery?