Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 tuberous sclerosis I am wondering if anyone here has any experience with this. As I have written previously, , who is 3, is one of those kids who slips between the cracks when it comes to a diagnosis. Although his SLP, OT, Ped. Neuro( who we ditched), Dr. Amy, and Dr. Aguilar say he is not autistic. Not that he doesn't have any of the characteristics, , but does not come close to having enough for a dx, even of PDD. So, here's the story. is very tan. While swimming, my friend who is a nurse asked me if I have ever had him screened for tuberous sclerosis. I asked why, and that I didn't know what it was. She pointed out a white spot on his back and said that it is characteristic of tuberous sclerosis. Also, the fact that his teeth are horribly damaged in the enamel. She looked at my arms, and I have tiny white spots too, which is important, in that this is genetic, but manifests itself differently in all people. She did state that NO one with TS should ever have a pertussis vaccine. Wonderful, since this is the one that put in the hospital with a near fatal reaction. We have had a neuro eval at Children's Hospital here, but they didn't look at his body. Problem is now, that with chelation and all, we have burned our bridges medically. Anyone have any ideas or knowledge on this? Help, please! He has also had absent seizures in the past and 3 large seizures,those large ones being shortly after his 1st b'day and the last one was last October. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2005 Report Share Posted July 29, 2005 > Anyone ever heard of tuberous sclerosis and if it can be treated by > natural means? > > Jeanne A google search on mitochondrial tuberous sclerosis turns up that it's a mitchondrial disorder, an ATP energy production deficiency, and like all of the acquired mitochondrial disorders it can be treated, and much of it reversed, with natural detoxification and regeneration procedures. I have a " neurodegeneratives sheet " that anyone can ask for that has been working on these and other mitochondrial disorders. Just email me with suitable keywords in the subject line and I'll forward it to you (or anyone). duncancrow(at)shaw.ca Duncan Crow (copyright waived) duncancrow/ --- live and help live... --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 Has anyone had any experience with Tuberous Sclerosis? Thank you, Quote Link to comment Share on other sites More sharing options...
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