isaacsmom

Thank you to all of you who have responded to my questions. This forum is not only amazingly informative but everyone is so compassionate. I spoke with my pediatrician tonight and he said he truly believes in the PANDAS diagnosis but like many others is unfamiliar with the therapies. We are switching to Augmentin and he is going to do some more research tonight and call me back tomorrow regarding the steroid dosing. I feel much more hopeful tonight. Thanks again to you all!

Hi Dave - I sent you a PM about this - Kimballot, I was wondering if you could send me all the information you have regarding Dr. Cunningham's labs and what they look for. I have e-mailed the doctor but did not get a response. I have appointment with a neurologist for my son and would like to have as much information on PANDAS as I can. Thanks

Thank you for the helpful information. Who are the PANDAS doctors that you recommend? I would like to look at all of our options. I tried Advil yesterday but did not see a change in the tics. I have noticed that he tics less when he is doing activities like playing tag or jumping on the trampoline vs reading or watching TV. Has anyone else noticed this pattern? He told me yesterday to help him stop..I am just so sad! As a mother I should be able to help him and I feel so helpless.

Where about in Iowa do you live? So few midwest posts. We live near Des Moines. A sharp young psychiatrist, Dr. Sasha Khosravi connected our son's "array of dots" and suspected PANDAS. He referred us on to a Dr Stephen Elliot at Blank Children's. After a year of Dr. Eliott's insistence that penicillin WILL WORK (it wasn't-not even Bicillin injections), we ended up in Chicago with Dr. K. I do know that Dr. Khosravi and Dr. K have visited at length not too long ago--I hope our son can "help" trx in Iowa. Let us know how the other two contacts work out. Dawn Hi Dawn, I know your post was years ago but I just found this forum and would love to talk to you further as my 8 1/2 y/o was diagnosed with PANDAS and his tics are getting more severe and I am looking for any help or guidance you have. We live in Dubuque, IA and we are just starting out on our PANDAS quest.

We live in Dubuque, IA

Hi, I am new to this forum and haven't been able to read as much as I would like, but I need help! My 9 y/0 son was "diagnosed" 3 years ago with PANDAS. I say that lightly because when our son started his eye blinking tic seemingly overnight I searched the internet and discovered the term PANDAS. I begged our pediatrician to treat it with antibiotics and he did test his ASO titers which were extremely elevated even though he had no clinical signs of strep. The antibiotics completely eliminated the tics but returned 2 months later which we treated again with antibiotics. My doctor was unwilling to keep treating with antibiotics and we were told that he most likely has Tourettes. He just went six months with only minor tics that only lasted a few days at a time. However, after an outbreak of strep at his school and a few day history of sore throat his tics returned. I begged our pediatrician to treat it again with antibiotics which he is currently on Amoxicillin but the tics have not subsided this time. He is completely devastated by these tics. He is increasingly withdrawing from his friends and now us as he can't stop coughing. He constantly is eating ice chip trying to stop coughing,it is so sad! He doesn't want to play baseball anymore, which he loves to do because of these tics. I e-mailed Dr. Kovacevic who said he would do a consult with us, but I want more information on him and outcomes people have had with his treatment of IVIG. When do you decide to do IVIG and does insurance pay for any of this? How much is this form of treatment? What else could we try before we look into IVIG. Please help! I am so sad by seeing my outgoing, sweet little boy hurting so bad. Thank you for any information and guidance you can give us.