mom23boys

He started the eye blinking tic a few months ago, but before that it was rubbing his nose, and before that he was licking his lips (may or may not have been a tic.). The nose rubbing and eye blinking started at the beginning of the school year. He changed schools (3rd grade) so we thought it was just that. His pediatrician does NOT believe in PANDAS at all, and said transient tic. If I didn't have a nephew with PANDAS diagnosed by Dr. Lattimer I would still be thinking it was transient childhood tics or possibly Tourette's . . .

I posted last week about my son's strep titer results - 1:480 for ASO and 1:1920 for Anti DNase B . His Cam Kinase II came back today and is 176. Not surprised as my sister (mdmom) guessed today he would be above 160 . . . Good news is that his only symptom (eye blinking tic) is GONE after 5 days of Azith. It will be interesting to see what happens when he stops the antibiotic . . . my sister's prediction is that his titers will still be elevated as it is the immune response causing the tics not the strep. Her guess is that the azith is working because of the immune modulating properties. This is based on the fact that her son showed no improvement on any antibiotic except azith and has required plasmapheresis and IVIG to get to where is now (vastly vastly improved). His symptoms were much much more severe than my son (his cousin's) so I am holding out hope that we don't have to go down that road. Thank goodness for all her knowledge on this - I am still struggling to understand it! Thought I would keep you updated as there seem to be several of you with familial links.

We did a throat culture (not rapid). No idea how long they grew it out. It was negative. My sister suggested a 250mg per day dosage of azith for 30 days, and then a 5 day steroid boost a couple of weeks in . My husband's partner called in the azith. As you can see, I am not one to watch and wait (husband would have been content to retest in 6 weeks). We will start on that today. In the meantime, I will hopefully get some docs lined up who believe in this disease. We were actually in the process of switching peds as they are no longer preferred under our new insurance, as I found out when I got the bill for my boys flu shots!!!

Thanks for the responses! Just got off the phone with my sister who is mommd on this forum and she is of the firm belief that it may well be PANDAS. Thankfully, she has been through all of this and knows a lot about the disease and who to talk to or see. . . just hoping my husband will get on board as well. Apparently my son's anti Dnase B titer is much higher than my nephew's and Dr. Lattimer told my sister his was in the top 2 percent. I guess the trick now is to find a doctor in Georgia who believes in this disease. Our pediatrician absolutely does not at all, as I found out when I was telling him about my nephew's issues when I was asking about my son's tics. Thankfully the symptoms are very mild now (tics being the only real issue), although that may make it harder to find a doctor to agree that it may be PANDAS. There have been no problems at school at all - to the contrary. No attention issues, no handwriting issues, etc. Hopefully the titers will help in this regard.

My nephew was diagnosed with PANDAS a year or so ago. At the beginning of the school year, my son (9 years old) started exhibiting tics. My husband is a doctor and said transient childhood tics. His pediatrician said the same thing. My son is very type A and had changed schools at the beginning of the year, so much of this I attributed to stress. Many of the tics have come and gone, but he still has an eye blinking tic. No other movement disorders. We have seen some emotional issues (some defiance (very out of character) and other such things which I always chalked up to getting older). However, PANDAS was always in the back of my mind. Our family has a history of rheumatic fever as well. I had my son's blood tested last week (March 18th), and got the result back. His ASO was elevated 466.2 His Anti DNase B was elevated 1:1920 His throat culture was negative. He did have a strep infection in October (throat culture positive Oct 13th). Are these titers still elevated because of the October infection? What should we do next???