HanHan

Thank you all for your responses. All the information has been so helpful. I do have a question about cbt and erp. I told the person we have been consulting with that we are interested in CBT for our dd8. She said she doesn't believe therapy is helpful except to work on anxiety management and trying to develop insight into something you have no control over could make the kids feel they are failing the therapist and parents. Has anyone felt this to be true? Thanks again for all comments.

We have an appoint. scheduled with Dr. B. in Ct. for April. Set up a phone consult with Dr. T which is not covered by insurance. Unsure of whether to see both doctors or is it only necessary to meet with one. Our dd8 has pandas. We want to see if there are any underlying issues and whether we should proceed with a tonsillectomy and IVIG.

We are looking into a tonsillectomy for our DD8. I heard the ENT's at Children's will not perform them if the reason is pandas. Could anyone recommend an ENT who supports pandas? Thank you.

Yes, She has been on augmentin since Dec. The same severe behavior started then. She was diagnosed with pandas. After 5 days on abx, she was back to being her old sweet self. Over the past two months, when someone has been sick in the house her ocd behaviors have come back but only mildly. Last Saturday we saw it start to return again and each day it got worse. The past 3 have been unbearable. It is almost nonstop all day.

Thank you. We were told pandas kids don't need CBT. We have decided after this week though we are going to look into it anyway.

Our dd8 repeats everything she says to us and wants us to repeat to her. She will keep adding more and more things on if we repeat what she wants. Example: I say whats is for dinner. She wants me to say it again, I say it again, she wants me to say it and move my arm a certain way, I do it then I have to do it 3 more times if I don't do it exactly right have to do it again and have my head turned a certain way and so on. If I don't comply she throws a fit- punching, kicking, screaming. Follows you everywhere. once somewhat not so explosive, she has to have you start from the beginning with what's for dinner. I am so torn between standing for an hour or more giving into all the repeating or having her explode for hours and go in circles. I can see her brain is so stuck though. She has to recreate from the start. Has anyone been through this? Any suggestion of what might help.

Our dd8 repeats everything she says to us and wants us to repeat to her. She will keep adding more and more things on if we repeat what she wants. Example: I say whats is for dinner. She wants me to say it again, I say it again, she wants me to say it and move my arm a certain way, I do it then I have to do it 3 more times if I don't do it exactly right have to do it again and have my head turned a certain way and so on. If I don't comply she throws a fit- punching, kicking, screaming. Follows you everywhere. once somewhat not so explosive, she has to have you start from the beginning with what's for dinner. I am so torn between standing for an hour or more giving into all the repeating or having her explode for hours and go in circles. I can see her brain is so stuck though. She has to recreate from the start. Has anyone been through this? Any suggestion of what might help.

Hi Tiffiani, We are from MA too. We were thinking of trying to get an appoint. with Dr. K in Chicago for IVIG. I didn't know there was anyone in the area. Could you let me know how it goes with Dr. Walters. Also, was it hard to get an appoint. with Dr. Geller and did you have to pay out of pocket? Thank you. Susan

This is my first post. I am about 3 weeks new to this site and I want to say it has been so helpful and informative reading all your posts and so comforting knowing we are not alone. I feel our life has been turned upside down. Your words, your individual situations and your persistence, has really given me strength to fight this fight. Thank you. My daughter has been diagnosed with PANDAs. She has been on Augmentin since the middle of December. After the 1st 5 days on it, we saw tremendous improvement. Over the course of the next two months symptoms have flared when she or someone in the house has been sick. My son now has pneumonia and a double ear infection and my daughter has a cold and her ocd behaviors are almost has bad as they were back in Dec. I am sure it is Pandas but I also feel we should look to see if there are any other underlying issues going on. We have had her on augmentin for two months and having her on it helps but the behaviors still come and go and it seems like it is a temporary fix. We feel like we need to do more and are not sure in what direction to go. I have read so many stories on this forum. Many of you have tried so many different avenues. I understand each child is different but I wanted to ask if anyone has a recommendation on what steps we should take next? Should we treat Pandas with a tonsillectomy and ivig and then if that doesn’t help, we look into underlying issues? Or, should we see Dr. B. and Dr. T. first and see if there is anything else going on and then go the tonsillectomy and IVIG route. Any thoughts you have would be greatly appreciated.