melanie Posted September 16, 2012 Report Share Posted September 16, 2012 We use minocycline 100 mg 1x day. I think we should use more. I will if someone else does. Also if you are having. Flare. Meaning behaviors. Do you use steroids. . Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2012 Report Share Posted September 16, 2012 We use 100mg minocycline 2x/day. We switched from zith in June. She still has flares, mostly from UTIs and we add amox when those crop up. And yes, we use steroids, as long as it has been a sufficient amount of time since the last usage that her doc feels like its safe to do again. Her doc has referred us to a rheumy because he wants to try Allie on immune supressants- something like methotrexate. He feels like if we can't get the infections under control then we need to reduce the autoimmune impact of them. IDK what to do. Link to comment Share on other sites More sharing options...
melanie Posted September 16, 2012 Author Report Share Posted September 16, 2012 I feel like this will never end!! He is doing great but Im never satisfied.One day great one day eeh ,I cant talk to him if hes thinking about something.He gets real annoyed.I concider those days flares?? Some days I can just scream .Hes watching all the old programs he used to watch when he was younger.Power rangers etc..So not 18yr old shows.its like hes going backwards .Do you see a difference with the 200 mg? I think when he gets that annoyed ticcy behavior Ill try low dose steroids like 10 mg for 2 days?? Also he continues with the accupunture Does Allie? Starting biofeedback again wednesday Link to comment Share on other sites More sharing options...
peglem Posted September 16, 2012 Report Share Posted September 16, 2012 (edited) I just don't see any way to do acupuncture w/ Allie's needle phobia. Allie is into toddle aged things. Raffi-OMG! Right now into Schoolhouse rock. She's very OCD w/ it, though, repeating lines over and over again. I think the 200mg of minocycline is working fine- but she's still getting infections that minocycline doesn't treat (like UTIs). Edited September 16, 2012 by peglem Link to comment Share on other sites More sharing options...
Hopeny Posted September 17, 2012 Report Share Posted September 17, 2012 I just don't see any way to do acupuncture w/ Allie's needle phobia. Allie is into toddle aged things. Raffi-OMG! Right now into Schoolhouse rock. She's very OCD w/ it, though, repeating lines over and over again. I think the 200mg of minocycline is working fine- but she's still getting infections that minocycline doesn't treat (like UTIs). Accupressure is another thing to consider, it involves rubbing with tools, which she may not like either, but no needles. There is also something called Moxabustion which involves a small amount of heat, I have found that very effective with my DD, no needles, My insurance covers a portion of it. Link to comment Share on other sites More sharing options...
LaurenK Posted September 17, 2012 Report Share Posted September 17, 2012 Melanie, why not see the neurologist in NY and do the high dose IV steroids. Link to comment Share on other sites More sharing options...
LaurenK Posted September 17, 2012 Report Share Posted September 17, 2012 If his quality of life is impacted, there are other options. Im sure he's talked to you about them? No? Link to comment Share on other sites More sharing options...
PowPow Posted September 17, 2012 Report Share Posted September 17, 2012 If his quality of life is impacted, there are other options. Im sure he's talked to you about them? No? melanie, I have wondered about your son and steroids,also. have you done high dose iv? any effect? Link to comment Share on other sites More sharing options...
melanie Posted September 17, 2012 Author Report Share Posted September 17, 2012 Dr najar doesn't do dannys ivig. He did the PEX. Dr J does the ivig. Did steroids with dr T 3 years ago. Link to comment Share on other sites More sharing options...
LaurenK Posted September 17, 2012 Report Share Posted September 17, 2012 Dr najar doesn't do dannys ivig. He did the PEX. Dr J does the ivig. Did steroids with dr T 3 years ago. Didn't he talk to you about all your other options though? Is Dr. J more your primary care doc? Link to comment Share on other sites More sharing options...
Mayzoo Posted September 17, 2012 Report Share Posted September 17, 2012 We are using Minocycline 75mg twice a day right now. I am hoping to go down to 50mg twice a day soon (kiddo weighs 58lb). Link to comment Share on other sites More sharing options...
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