patric

Hi Everyone, Could you please advice on whether IVIG has worked for your child? Would you recommend it? I have it scheduled for next month, but am worried. Are there serious side effects, or just the nausea, headaches, etc. Is it a "cure" or will the same symptoms come back? Is there something else better, or is IVIG the best route? I also think my son-age 8 may qualify for the NIMH study. Can anyone tell me about that? He has just finished his 5 day steroid burst and tics seem to be less, although he overreacts and gets upset more easily. Not sure if that is related to the burst. Our Dr. is Dr. K. in Chicago area and I feel he is extremely knowledgeable and has treated hundreds of PANDAS patients, but still want to know what the parents think. I am new to this and don't quite understand all of the abbreviations, so I would really appreciate any help. Thank you so much! Sharon Oh, and any suggestions for getting it reimbursed by insurance? We have HMO...ugh

Hi I just read your post about you six year old qualifying for the study. My son Is eight and was just diagnosed. Could you please tell me more about this and who I would contact? Also will they pay for it? Any info. Would be helpful as I am very new to all of this. My son currently sees dr. K. And is scheduled for the ivig next month, but I am wondering if this is a better option. Sharon

Thank you! This is very helpful! Can i ask if you had the IVIG done? And if so, did you get good results? We are scheduling it for next month in Chicago. And yes, it will be a 5 day period for the steroids. I was encouraged by your post!

I wanted to add to my other post and ask more about the steroid burst. My son will do it this week and I wanted to know if anyone can share their experiences and whether I should keep him home from school. I am new to all of this so I really appreciate the insight of all of you. Sharon

Hi Everyone, I am wondering if anyone can advise me on the steroid burst and its side effects and what to expect. We are planning on doing the IVIG next month and the doctor recommended steroid burst to confirm diagnosis of PANDAS and to alleviate symptoms. I am very new to this, as my son was only diagnosed 10 days ago so any info. would be appreciated. Also, Tracie, thank you so much for your post. It was VERY helpful! I would like to call you this week if that is okay. Sharon

Hi Tracie, This is my first post as my 8 year old son was recently diagnosed last week with PANDAS. I am very uplifted by your post and am hoping you could tell me more. We too are going to schedule the IVIG with Dr. K. in Chgo, so any info. you could share about how your child is doing or what to expect or anything would be greatly appreciated!! I have been a nervous wreck about this until I found Dr. K. who seemed to really have good results with IVIG... Sharon