McMom

Thank you for the advice! Wisdom _ seeker it's interesting that you mentioned Trazadone because my niece has been ailing with an autoimmune disorder after a mycoplasma pneumonia infection for almost 2 years. She takes it because her painful muscles and joints keep her up at night. I never thought to ask my son's psychiatrist about it. The doctor prescribed Clonidine which seems to have no effect. I like the more "natural" suggestions too. Will definitely try them. Again, thank you both.

Need some advice...my son is in another PANDAS flare and, as is typical with him, his racing thoughts and agitation from preventing him from getting sleep. Going on day 3 of only a couple hours each night. What has worked for you? We haven't found anything that helps him other than riding it out, but I'm so tired!

Yes, Dr. Trifiletti definitely skypes. It was offered to me when I made an appointment for my son on Monday. He's only a three hour drive from us so we're going to make the trip up. Glad to hear you've had a good experience.

Thank you. I will look into the Pepcid and NAC too...like I said, whatever helps! Seeing Dr. Trifiletti in NJ next month and will hopefully get more answers.

Thank you! It's funny, just this week, we have focused on his diet and have been trying to follow an anti inflammatory diet and look for any triggers. Kind of a hard sell for a 14 year old boy but I think he feels as desperate as we do and will try anything at this point. He hasn't been tested for food allergies but it's on my list since he's always has stomach issues. As far as the Cunningham panel, we saw his neurologist last week and he ordered a ton of blood work that we're waiting on results. I will see exactly what he tested for, compare, and follow up with the doctor. And we started with fish oil too! I just noticed that his seasonal allergies are really kicking in too...maybe that's a trigger? This PANDAS stuff isn't easy!

Need some advice! My 14 year old son was finally diagnosed with PANDAS last year after many years of being alternately treated for school anxiety, general anxiety disorder, and OCD. About three weeks ago, he started with manic behaviors (excessive talking, staying up all night, dramatic increase in OCD behaviors, elevated mood). Two days into it, even though he didn't complain of feeling sick, I brought him to the pediatrician who diagnosed him with bilateral ear infections and prescribed Augmentin. Augmentin has settled his episodes quickly in the past. Five days later he still had barely slept, so we called his neurologist who put him on Clyndamycin as well as his psychiatrist who gave him Clonidine to help him sleep, which didn't help at all. (Just for background he also takes 100 mg of Zoloft and 2.5 mg of Abilify daily and we just switched from Penicllin VK 250 mg a day to Azithromycin 250 mg once a day.) We saw a gradual improvement on the Clyndamycin, and he got back to school after missing a week of school and out another for spring break. He did somewhat okay the first two days back at school this week, but the past few days he acted like he can't think straight--can't begin to do his assignments, can't remember what went on in class or instructions for homework, can't remember how to do easy equations that he definitely knows how to do, is constantly flipping through his textbooks and papers in folders, stares at us blankly when we ask him questions. I asked him tonight if he is feeling anxious and if these "sticky thoughts", as we call them, are getting in the way of him being able to concentrate. But he says he is just so confused and can't concentrate and that the confusion is in turn causing him to feel anxious. This is new for him. He has had difficulty in school before because his anxiety and the OCD thoughts have been so overwhelming, but not like this. This is my first time posting. I have read many posts on this forum and let me tell you, it has been a godsend. Hope someone has some insight!