momoftwinsplus1

Contact the NIMH right away. I just heard Dr. Swedo speak at the OCD Foundation Conference. She wanted to word passed along that if a child had a life threatening condition due to PANDAS (such as eating/drinking refusal) they would help the child get the appropriate treatment.

I was wondering if there is anyone else on the board from Kansas????

My daughter's pupils were also dialated. We could hardly see her iris' any more. That was a year ago and she was very, very bad. After her IVIG with Dr.K. the first sign that she was starting to get better was that her pupils were a bit smaller. She has made a recovery and pupils are normal now. I am glad you are finding people to treat you child.

I sent you a PM.

No, but there was a psychiatrist at Children's who was familiar with PANDAS and helped to get our family connected with another doctor. I can PM you his name if you would like.

It seems like it might have gone up a bit. It is the drug that is so expensive. We paid almost $10,000 a year ago with Dr. K. Would I do it over again? YES!

IVIG was the best thing we ever did. It brought us our little girl back. It took about 8-10 weeks to see good steady improvement. It has been about 10 months now and she continues to improve.

I know Dr. K was treating a 19 year old with IVIG the same time we were there with our daughter. Maybe that could be an option??

It seems like my daughter experienced "turning pages" until about week 10 post IVIG. She continue to improve gradually even now and it has been 8 months since. She is back to being my little girl I know and love. I remember it being so heartbreaking watching her lose ground, but stay patient and strong...she will improve, it just takes time.

You could tell them you would like both. A behavior plan does not have any legal "teeth" to it like a 504. If your child has a 504 it would have to follow him/her through the years. It may be the school is not understanding what PANDAS is...it is a health condition. With a behavior plan they should also do a functional behavior assessment, it may be hard to identify function when what is triggering the behaviors is a cold, strep etc. Therefore I would think a 504 is more appropriate because it will allow for accomdations when she is struggling during flairs. I do work for a school district and have a child with PANDAS, feel free to message me if you need other ideas or help. Good Luck!!

My daughter only had one IVIG with Dr. K. Her behaviors would improve and then regress until about 8 weeks post IVIG and then we started to see continual growth. We are almost at the 6 month mark post IVIG and she is doing great. It was a very anxious time for us waiting to see if she would improve and heartbreaking when she would regress. With that being said it might be worth the time and money to do a phone consult with Dr. K even if it is only to ease your mind a bit. He has really seen it all.