ncmom

Thank you to everyone for your replies and advice. I at this point have not vaccinated again. I have an appointment with an immunologist for a third opinion next week and will see what he suggests. My PANDAS doctor (we have had only one visit with her) was whom wanted my daughter to get the pneumovax and it was my pediatrician (who has never treated a PANDAS child) who advised against it. Ironic right! As far as her diet, we have for a few years now been avoiding preservatives, food colorings and try to buy organic, non GMO, and all natural foods and products. My son is a Type 1 Diabetic as well for the last 4 years so we also try to avoid simple carbs and limit junk food in general. And since PANDAS has now entered our lives, we have also gone gluten free and I limit dairy as well. She is doing well right now, we have just changed to a prophylactic dose of Azithromycin. I am keeping my fingers crossed that she will continue stay healthy and PANDAS does not rear it's ugly head in her life again, it's a constant worry that always stays with me.

My daughter was diagnosed with PANDAS in May and since then I have found this forum and spent hours reading through the posts gaining as much knowledge as possible. Thank you for all of the great information and support you provide! My daughter was diagnosed at seven, we believe it to be new onset and we started treatment right away with high dose Augmentin. She is doing extremely well, I would say 95% back to herself which I am so thankful for! However, during her workup, it was discovered that she has low pneumococcal titers, only 1 out of 23 in range. The rest of her immune work up was within normal limits (IGg, IGm etc.) Now her doctor wants her to get the pneumovax and retest her titers in 6 weeks which I am very hesitant to do. I also want to remark that up until now she has been very healthy other than reoccurrent ear infections as a baby that she outgrew after a year of age. I am not against vaccines, she received all the normal scheduled vaccines thus far,but I am concerned that it may exacerbate her PANDAS again. I have read through all of the past posts on this forum and it sounds like there was a bit of debate on this issue. Those topics seemed to be from 2009-2011 and I was wondering how things turned out and if the parents who did choose to vaccinate had a positive and sustained rise in the follow up titers. It seems as if there is a subset of kids on this forum with questionable immune deficiencies. I would appreciate any advice on this as well as long term treatment plans. We are just kind of taking it day by day and praying for the best. She is still on the Augmentin but a lower dose now, I would like to try to take her off of it as it is upseting her stomach, causing her to lose her appetite and her teeth have begun to stain as well. Has anyone been able to wean there kids off the antibiotics without the symptoms returning? Sorry so long! Thank you in advance!