sleeplessinVA

We got the okay to hold off on the steroids so I guess that it's just wait and see. When the bloodwork comes back, what will I be looking for?

I did not realize that steroid treatment could disqualify us from the NIH study. We have given ONE pill, we had planned to continue to the 2 pill dosage today. IS IT TOO LATE TO STOP the course of treatment now?

OK, He has had ONE steroid pill so far. We were planning to start the two pill/day dose today. Is it too late to hold off or can I stop right now?

I can't tell you all how comforting it is to have your ear and your informed advice. Thank you so much for taking the time to reply and connect. I was able to get in to see Dr. Baig today in I found him on Pandasnetwork.org. He has an office in Dunkirk, MD. (Yes, I am in NoVa). I brought the NIH printout that you all recommended, it was very helpful. Again, thank you for that great tip. Dr. B. gave us a prescription for 21 days of cephalexin - 5 ml 2x daily, and orapred - 15mg 2x day for 5 days. I am new to these medications and to be honest, they sccare me just because I know nothing about them. We also had blood work done. What are your opinions of this course of treatment and next steps? Did I do the right thing? I am exhausted tonight, but tomorrow, I will continue to look into the NIH study and to research these meds. Again, I greatly appreciate your feedback, support and advice. Huge thank you.

I live in VA, tomorrow I am meeting with DD10 with Dr Baig in MD (recommended on another board). If it goes well, I'll let you know, you might be able to get in sooner w/ him or her. My prayers are truly with you tho we've never met. We're both going thru this at the same time in the same place. Jennie

I am so glad that I found this site, it is exactly what I have been praying to find, why didn't I find it earlier!? My DS10 just onset what I think is PANDAS about a month ago with a strep infection. He went from typically sweet, happy, healthy, doing well in school and sports to a changed boy in a matter of a few weeks. About a week or two before we had the positive strep test, he started having micriopsia/macropsia, night terrors, repetitive nonsense speech while "awake" at night - horrible nights. then with the fever, he started having hallucinations and urcontrolled body movements, I can totally relate to the mom who saidvitvwas like the exorcist. I also lost 10 pounds and many nights of sleep. Primary care doc said that it was just night terrors and gave us a 10 day antibiotic treatment. Everything improved until the 10 day course ended. Then the tics started in- eyes, eyebrows, nose, noises with lips, milking hands and hitting his torso w his elbows over and over. Plus, he seemed depressed nd not at all himself. Got the flu, had night terrors again and now, he is recovered from flu, and seems to be in good spirits, but the tics are here to stay it seems, they are not getting better. I have an appointment with Latimer for Late August, but I feel so helpless until then. We made an appointment with Dr. Azam Baig in MD for this week. Has anyone seen him for Pandas? Where do I go from here? What should I expect from the first appointment? Does my son need to be on prophylactic antibiotics? Can I still send him to school, I am terrified of another infection. I just feel like crying my eyes out! Thank you for bearing with another case, I'll take any advice that you have for a newbie mom.