vvny Posted August 22, 2016 Report Share Posted August 22, 2016 Hi Everyone Our doctor has prescribed Low Dose Naltrexone for our son who has severe tics and OCD from possibly PANS although they haven't been able to identify the virus causing it. Has anyone had success with LDN ? It seems to be used for autoimmue and other conditions according to this website http://www.lowdosenaltrexone.org/ We are very nervous to try it and wanted to ask the expert opinion of members on this group for your opinion as well... Thanks in advance ! Vik Link to comment Share on other sites More sharing options...
LNN Posted August 22, 2016 Report Share Posted August 22, 2016 We've been using it for my DD for neuropathic pain. She has Pans but for the past 10 months, her symptoms haven't been your typical presentation. Two months ago, I stopped it, trying to get down to a lean daily regimen. Since then, her anxiety has skyrocketed and led to nightly panic attacks. I re-started the LDN a few days ago and saw immediate improvements. We are still searching for the cause of it all - but the LDN has helped a lot. I know at least a dozen families who are finding relief using it - not a cure, but a big help. This is another good article... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ Link to comment Share on other sites More sharing options...
vvny Posted August 22, 2016 Author Report Share Posted August 22, 2016 Thanks for sharing your experience with LDN. Do you think taking her off LDN caused the anxiety to worsen ? Does it cause a dependency once you start it ? I am afraid of any side effects ....did you notice any ? My son mainly has chronic vocal and motor tics along with OCD and anxiety. This cunningham panel shows elevated antibodies on one count ....He has not got full relief from antibiotics so far or with supplements.Maybe thats why he has prescribed LDN.. Link to comment Share on other sites More sharing options...
LNN Posted August 22, 2016 Report Share Posted August 22, 2016 I do think stopping the LDN made things worse. But not from a dependency. All the research suggests there's no addictive properties and no need to tier down when stopping (tho I did, just to be safe). I think things got worse because it was helping and I didn't realize just how much. We haven't been able to figure out the "why" behind my DD's issues and things have stayed ramped up as a result. The LDN helped keep the inflammation lower and that helped keep her symptoms more manageable. I saw no side effects. So it's back on board for our foreseeable future as we keep hunting down clues. Link to comment Share on other sites More sharing options...
vvny Posted August 23, 2016 Author Report Share Posted August 23, 2016 Ok that was useful .Thank you so much, as we are in the same boat.We are unable to identify the exact reason behind our son's inflammation! Link to comment Share on other sites More sharing options...
notthereyet Posted September 2, 2016 Report Share Posted September 2, 2016 LDN is very safe and it doesn't cause dependency but it has to be start low and slow and never to go over 4.5 mg dose for adult. One should start at 0.5mg dose and slowly go up. by another 0.5mg after a week or two. It can cause insomnia and very crazy dreams that seem real. Best time to take it it's in the evening around 10pm. It work great for my wife with her autoimmune condition. It was not a cure as condition came back when she stopped (run out and it took compounding pharmacy a week to reorder) but it went back into remission the moment she restarted it. Link to comment Share on other sites More sharing options...
Rachel Posted September 21, 2016 Report Share Posted September 21, 2016 My son has been using LDN since July 2015 for chronic pain issues. He had severe scalp pain, a daily headache, and hypersensitive skin issues. After being on 3 mg of LDN for 8 weeks, his pain issues are gone. He has been pain free for over a year. I also take LDN for some chronic pain issues that are caused by autoimmune illnesses. My pain issues resolved in about a month. I have been on this medication since last October. Neither I nor my son has been sick with colds, flu or other infections. It works with your immune system. Don't think either one of us will be getting rid of LDN any time soon. Link to comment Share on other sites More sharing options...
vvny Posted September 28, 2016 Author Report Share Posted September 28, 2016 Ok thank you.I think we will give LDN a shot ! Link to comment Share on other sites More sharing options...
trggirl Posted October 10, 2016 Report Share Posted October 10, 2016 Hi vvny I really hope you come back and post as to how it is going with the LDN! Link to comment Share on other sites More sharing options...
boysrlove24 Posted December 7, 2016 Report Share Posted December 7, 2016 Hi vvny, I was researching LDN and was wondering how your kiddo is doing on it? I believe you were trying to address tics - did it help? Link to comment Share on other sites More sharing options...
DC24 Posted December 7, 2016 Report Share Posted December 7, 2016 Does anyone think or had experience with using this for just OCD (pure o) from pandas? Link to comment Share on other sites More sharing options...
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