jackalibeth

t_mom thanks for the extra information. Dr. L said 3-4 weeks is the typical time it takes the antibodies to detach from the basal ganglia and for the real improvement to kick in. We are also adding ibuprofen to our daily regimen to close the brain blood barrier. What do you mean by "typical" saw tooth recovery? Now that she is back in school what are you doing to prevent a relapse? It is so nice to be able to talk to other Moms who have been through this. Pandas can be a very lonely place. I hope to share good news soon.

Powpow thanks for the info. I feel so alone in this all the time. My daughter has been sick since May of 2012 so it will be two years this May. Her first IVIG was last January she got better in about 8 weeks then relapsed in September. The relapse was way worse than the initial onset. The first time she was able to stay in school. This time she has been out of school since the end of September. She just turned 9 when it started. Her biggest problem is extreme anxiety, fear of people throwing up. With her initial onset she also had severe anorexia. This relapse no anorexia , probably because she is home? Not sure. There are other symptoms (frequent urination) but the anxiety is keeping her out of school, really keeping her from leaving the house. When the pandas symptoms are gone she in a completely different child. Trying to stay positive and patient but as I am sure you know it is very hard. Are your kids ok now? How long were they sick before they got PEX treatments? Did you try medications like Prozac along with the other treatments?

I am new so to this site. Unfortunately not new to PANDAS. We have been battling for 2 years. My daughter had plasmapheresis last week. Last day of treatment Thursday (three sessions not five). I am wondering how people saw the recovery come. I have not noticed a change yet and she is beginning to get depressed as she does not feel any better. I want to reassure her that it can take however many days or weeks. Feeling very alone and desperate to see a change. Her first IVIG was a miracle and she was 95% back to normal. Second IVIG no change at all if anything she continued to get worse. Any insight from parents that have done the plasmapheresis would be much appreciated. On a separate note our insurance denied the procedure, then we appealed. The appeal was denied so we appealed again with an external review and the denial was overturned. I would be happy to give anyone who needs it the info that was used for the last appeal.