starwars99

Hi There My son, 9, is being seen by Dr. Torres (neuro) as well as, Dr. Fuhlbrigge (rheumatologist- PANDAS specialist) at Children's Hospital Boston. Have your Pedi call for an app. will be much faster. but still a little wait. Good luck. Both Docs are great.

Whether they get it or not, believe it or not. IT IS WHAT IT IS! You know. and we, as parents do NOT have to prove anything. We know what is best for our children! Do not feel that you have made a bad name for yourself, you're just trying to be the best advocate for your child ! Make them aware of the problem and ask for a little extra help in the area that is slacking. period. We as taxpayers are actually their employer. and they are the teacher. As far as any teasing-bullying...bring it right on to the other parent. I strongly feel that a sense of normalcy is what our children need. Just like pushing 'em out the door for the bus.

I believe my son is a carrier, although never really called that by the docs. No symptoms ever, but tics. When he tics, he's tested. Never a pos by rapid, but will come back pos from the lab. He initially had Impetigo 2 1/2 yrs ago and after that, has never had sign of strep other than tics.. then diagnosed with PANDAS. He has had, and right now does have an elevated ASO and gets better with ABX, so therefore, I do believe.

Have all of your children been for either ? or both? any findings? curious, because my son has not. Thanks so much!

I believe that this time around, thats what happened to him. He definately has improved w/ Azith. I finally spoke with the Pedi, told him of the improvement (but he still doesn't believe it) and very arrogantly...agreed with second round. They've also put in a call to a local PANDAS specialist (That I found and asked for)for me. YAHOO. I know they are just sick of hearing from me, but who cares? I feel my son is getting what he needs. And that's what matters Thanks for the previous info., greatly appreciated

My son plays piano on his tongue, believe it or not. Thumb on the bottom,going thru each one of his fingers on the top. right hand, left hand, then wipes each finger(piano movement) on pants right then left repeating maybe 4/5 times. Sitting at the computer/ doing homework will play fingers on the table. I keep Germ-x close by(haha)

Good Morning to All His throat cultures in the office come back neg. 2 lab cultures have been pos. It came to a point, that the Pedi just called in for ammox or keflex. I left 2 messages for him yesterday, expressing NO Celexa and for more Azith.and wanting to see a Rheumotologist who specializes in PANDAS (childrens hospital) He's been very hesistant in the past to give back to back antibiotics.(arghh) I would like to get my son's ASO level again to see where he's at. Should I be asking for a different blood test...something in conjunction? Hopefully I'll hear from him today, or maybe I'll just walk into the office, if need be. Thanks to everyone for the warm welcome and responses.

Hello To All! I first must say, I just found this website a few days ago, and all of you are so informative. I won't go through the whole history of my son, 9, but he was diagnosed with PANDAS 2 yrs ago. He has absolutely NO symptoms of strep... except for tics. When he tics, he gets Ceflex(from his pedi), usually takes care of it. but not this time. OCD is now very clear to me, when I was thinking he was a typical boy, being obcessed with legos, star wars, perfectionism, etc. OCD was never brought to my attention. Anyway, 2 wks ago his tics became very severe, almost like convulsions,whole body, lasting 10 secs long, every 20 secs. on and on and on. Pedi, once again gave Ceflex.. and nothing. Tried to make an app. with the doc who diagnosed....July...but then to April. The head(not his doc)of the Pedi Assoc. we go to, directed us to another Neurologist and Azith 5day(last pill being today)(which has helped alittle). We went this morning...to the other neuro doc...he says " his ASO 506 is just a coincidence"" strep has nothing to do with it, he has anxiety issues",he told me it was from a fast reaction to the mallet hitting his knee and elbows, and prescribes CELEXA...my son is not anxiety stricken nor depressed! We will not go there, with Celexa, it's not approved for children! How dare he. Gee, maybe I should take it. Pedi doc not calling us back. Looks like we are waiting until April and changing Pedi. and in the mean time I won't give up. Thanks for reading~ Stacy