Mos

Thank you all so so much for your time! I think I am very lucky to have found such dedicated advocates. As you all know we are our children's biggest fans. Your experience has led me in the direction in a quick manner. I would still be researching if I was on my own..so thank you from the bottom of my heart!!! Hopefully I can repay back something I learn along the way. This is so so strange....but we were waiting on our blood results, checking for strep and my son's eye tic is gone????????????????? Anyway we will continue with all of the suggestions....allergy testing is the next on my list. Thanks again. I will keep posting and reading...I am learning this is not going away so I need to be ready for it to strike again! All the best to you and your children. Thanks, Mos

I am not sure if I am replying appropriately..Here goes.. Allison, I just read all of your post...thanks to Kim's suggestion. I feel so overwhelmed...I keep thinking that this is happening to everyone else but not me..I can't explain it..I guess I am at the beginning..I really thought this was the end of it..but now realize this may just be the beginning. I just want to give you some history...Last Oct. I knew something was wrong with my then 4 year old son....not feeling well, night sweats, immpetigo, he then began with an eye tic and some small obsessions like wanting to draw all day... I would take him in and they said he is fine.no strep.Finally I took him to the hospital here in Germany and demanded they do a complete blood sample, ekg on his heart until they found out what was wrong..They discovered he had strep. My Dr. back in the states diagnosed him on the telephone and then we went home and she told me it definitely has PANDAS. In Jan.she decided to treat him with proplylactic antibiotics(amoxicillian twice a day). Everything was going fine until two weeks ago a slight eye tic has come back..everything else is ok. We just had a blood test to see if he has strep??waiting on results. We all just had a stomach virus so the eye tics may be from that. I guess I have so many questions:: 1. Does this mean we have a mild case? since he just has eye tics now or can it get worse? 2. How long does this disease typically last?..How old is your son? 3. I will schedule an appointment with an allergist? Is this the right person to check for all of the allergies? 4. How do I know if he has damage to his basal ganglia? 5. Should I change antibiotics if the tests come back that he does not have strep? 6. What is probiotic? I hope I am not overwhelming you with the questions...Since the Dr.'s don't know about PANDAS, I am going to have to tell them how I want to treat him. Thanks so so much for all of your help. I am so scared and feel really isolated since I am not home in the US. Thanks Mos

Thanks, Butterbean, Kim and ad_ccl, Thank you so so much for your time and information....I am learning so much..hopefully with everyone's experience..I can guide the Dr.'s here on the best treatment that I want to pursue..No one hear has ever heard of it or believes it. Anyway thanks again..I am off to reading some more....Take Care

I am joining this forum in need of help from all of you PANDAS experts. I am living in Germany with my family and have had zero success with PANDAS here. My Dr. from the states helped diagnose my son in January after months of trying to figure out what was going on. She advised us to treat our son with amoxicillan twice a day to prevent the strep. We have been doing this until now and everything was going fantastic..! no strep, no tics, no OCD....I thought we were out of it. Now my 5 year old son has started with slight tics again and some behavior issues. I will take him tomorrow to test for strep....My question to you would be what happens next..???If he tests positive to strep..do we change antibiotics? or if he tests negative to strep..do we change antibiotics..( He does not have symptoms when he carries strep..that is a big problem..so I don't know if he has strep..sometimes he carries it in his rectal area) The Dr.s here have never heard of this so I am really struggling...I email my Dr. back home which is nice but I am worried what my next will be.. Thanks so much for your help and response.