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Anyone in this group who was once part of that group remember Paula or know a way to contact her? Her son would be about 18 now. She was a big fan of Truehope in her son's recovery and we're having significant success with it now for the past 40 days or so. I'd love to reconnect with her if anyone has contact info they could share.

 

Many thanks,

Gat's mom

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truehope.com Pretty amazing story of how the product came into being. I've known about it for 5 years, since my son's last exacerbation. Paula swore by it for her son. Back in the day I didn't try it because we were just starting on the DAN! protocol and truehope seemed to simply duplicate much of the DAN! and I didn't have the money for both. It's never left my heart, though. Our current exacerbation is in its 8th month. He responds clinically to abx but has huge gut problems from them. We've had some success with TCM and homeopathy and dietary changes (a combination of all 3) but we had still hit a plateau. My thoughts kept going back to truehope. Did a lot of research, prayed long and hard on the decision and pushed forward.

 

The product is originally designed for bipolar disorder which Gat doesn't have...but then again, Gat's not autistic and did very well for several years on the DAN! protocol. Truehope's been around for 10 yrs and they've now had much success in all central nervous system disorders. Strep, Myco, Lyme...whatever...there's got to be some sort of CNS hitch in these kids. We're on day 37 and only day 18 on what would be considered a therapeutic dose. It's all vits and minerals and if the child is psych medication naive then its a walk on. Mine's had a history of ssri's and anti-anxiety meds so we had to work up slowly. If nothing else, I think Gat will be a better candidate for a possible repeat try at abx somewhere down the road because he's in a more homeostatic state from a CNS standpoint.

 

My words, not truehopes...but the concepts of Jacqueline McCandless's "Children with Starving Brains" are similar to the base concepts of truehope. When proper nutrition is made available, the body, as well as the brain, will return itself to a homeostatic state. It touches on my beliefs about the body and what I've seen in my own work as well as the work of recovering my son. I'm always so happy when I hear about the kids that really do great on abx, ivig, etc. I think this is just another avenue to explore and right now we're seeing good things but I'd sure like to see how Paula's son is doing these days. It's been several years since we last spoke. She was a seasoned PANDAS mom at the time we were just getting a diagnosis. Truehope has AMAZING support but they cannot put their finger directly on other PANDAS patients to compare notes.

 

Hope that helps.

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