I've been doing alot of research, since viewing Tristan's story about 2 months ago on Mystery diagnoses. I came across it while watching some other episodes on youtube and such, but This case "The boy who bit himself" struck a cord with me. I was thinking, they have to find a cure for this. Well anyway. I was on this site "clinicaltrials.gov" recently. Have any of you parents out there trying giving your kids this drug called: Aminomidazole Carboxamide Riboside. I found this on that site. Also if your willing to take the risk and your child is. Deep Brain Stimulation seems to be very promising. I was also thinking, and this might sound stupid, but, you know how dogs can pick up on changes in the brain because the chemicals in the brain give off a minute smell that only dogs can pick up on.
Well, as you know alot of times LNS patents will for example say no to something when they mean yes. That very depressing self-sabotage thing. What if you used a dog to pick up on changes in the brain and the dog would know if its a LNS answer or a real genuine answer. I would think that if the answer is compulsive, it would trigger alot of changes in the brain. More so because they really don't want to say it. Probably using more of the brain then normal. Mostly, of course coming from the basal ganglia. If any of this helps please tell me. I really am not here to waste anyone's time. I just want to help. I hope I may have said somethings that no one has thought of or posted.
Thank you, Dan Cederborg
Thank you for your thoughts. I have thought of a service dog for just this purpose. We are not "dog" people per se and I'm still ambivalent about adding a cat and a fish to our household (ha!). However, I know dogs help people with PTSD and have wondered if they could help LND boys too.
New information: This is information about new technology that uses the MRI scan, to do neurological navigation. Which allows you to pin point the precise area in the brain and essentially, bombard it with magnetic impulses, that cause the areas to change their activity level. Without the use of medication, or abrasive brain surgery such as Deep Brain Stimulation that not only requires you to shock the brain and could have unwanted side effects, but the battery goes out and the behavior starts up again. This new technology on the other hand is alot more permanent. The CEO and founder of this is Dr. Bradley Jabour Chief of Neuroradiology & Smart brain & health. Also here is a video that was used to help people with OCD which I beleave beyond 1% of a doubt would work with LNS. It has been shown that OCD and LNS are both abnormalities of the basil ganglia. If I had a child with LNS, I would definitely look into this as a possibility. Here is a link to a video I found on youtube that inadvertently made me think of how this could help with LNS. I must warn you that this is a Dr. Phil episode. I do think he is out to exploit people. I personally don't have much respect for the guy, but don't let that stop you from getting alot of extra knowledge from this doctor that is the guest on the show and shows in greater detail how this all works. http://www.youtube.com/watch?v=QZ2t9KUpDQ8&list=PLVAMBuSTObRQIV....
Hope this helps, Dan
THANK YOU FOR THE INFO ON TMS , I AM HAVING ALL OF OUR DOCTORS CHECK INTO IT . I HOPE THAT THEY SAY THAT IT COULD HELP .AND THANK YOU FOR YOUR INTEREST IN THIS . THANK YOU , TARA FINN