BeeRae22 Posted June 4, 2014 Report Share Posted June 4, 2014 Dr. M just recommended that we do the 23andme test on dd.... And also recommended putting it through genie he then said if I chose to do this, that he would go over the results with me, and could put me in touch with parents who have a lot of experience with supplementing according to the results-- I'm keeping you in mind when I get my test results back I really feel like I s--k at all of this I'm lucky if I can remember to give her all the meds on time (just added different drops, and another antibiotic-- sigh) and I'm not sure I'm competent in tracking her meds and behaviors. We're now stating our 4th antibiotic, and 4th kind of drops, and 10 sessions of CBT/ERP so far, and no real changes overall..... Therapist is pushing ssris, I'm still very reluctant to go that route. From the research I've done, it just doesn't seem effective enough to make it worth a shot. And I Am of th opinion that 8 years old is just too young to start antidepressants, especially considering that my dd was perfectly fine until last October. And ds has pneumonia right now! Ugh... I'm tired! Link to comment Share on other sites More sharing options...
dcmom Posted June 5, 2014 Report Share Posted June 5, 2014 Beerae22- I have seen your posts, and I think maybe we spoke a while back. I have two daughters with pandas- I can't help commenting that if your daughter has PANDAS, IMHO you really need to seek immune dampening treatment (steroids, IVIG or PEX), if antibiotics haven't worked... Link to comment Share on other sites More sharing options...
BeeRae22 Posted June 5, 2014 Report Share Posted June 5, 2014 We just started minocycline today, and will be giving that several weeks and then may try a steroid burst after that.... We may try to pursue ivig, but definately can't pay out of pocket, and with neg strep results it sounds like we likely won't be able to get it covered by insurance.... Even if we had positive strep, it's unlikely that we could get it done Leckman's colleagues seem to think that the results from the ivig trials were mostly inconclusive, and that the patients that showed improvement didn't have long lasting results either.... That's not to say that I wouldn't try it!!!! I'd refinance my house to help my daughter, but without more assurance that it would work, I can't justify the high price tag to pay out of pocket Link to comment Share on other sites More sharing options...
dcmom Posted June 5, 2014 Report Share Posted June 5, 2014 Yay! Mino is the best antibiotic for brain inflammation. We have seen it make a difference! Couple that w/ steroids ... A good plan for pandas- Fingers crossed!! Link to comment Share on other sites More sharing options...
BeeRae22 Posted June 5, 2014 Report Share Posted June 5, 2014 Thanks.... Here's hoping! Link to comment Share on other sites More sharing options...
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