Debbie1 Posted September 2, 2009 Report Posted September 2, 2009 I took my PANDAS dd to our ped at the end of last week for a throat culture. She has had a neck tic/movement since being exposed to strep at a sleepover. She cultured negative, as she has consistently since being on prophylactic amox. She still has the neck tic a week later. I have a script to take her for titers which I will get done, but the neuro warns that a rise at this point might be hard to interpret. She had a rough summer with a sinus infection that seemed to clear and then resurface and her tics would rise and fall with it as well. She was just tested on 8/3 and results came back with antiDNASE of 680. She was 340 at the end of June. Neuro thinks she may be developing resistance to the amox. since she broke through now 3 times this summer. She recommends taking a break from antibiotics for a little while to see how she does. Of course I am scared to do that. If I am against the idea, she is ok with switching the antibiotic. She has been on so much medicine recently to treat the sinus infection, that I am also fearful of over medicating. Anyway, along with the script for ASO and antiDNASE B titers, the ped prescribed the immunological blood work that was recommended (thanks, Shaesmom)! I asked him why he decided to order it for me after telling me a few days before that he didn't want to run it. He said he changed his mind based on what I said on the phone. He also knew I would always wonder if this were a piece of the puzzle if we didn't do it. When I spoke to the neurologist late last week, she was in favor of doing the immunological labs as well. She thought it would be interesting to see the results and was going to think about what tests should be ordered. I told her - I have a list! I emailed it to her and she is reviewing it. I am waiting to hear back from her to see if there are any other labs she would order at the same time. I'll keep you posted on results... Debbie
ShaesMom Posted September 2, 2009 Report Posted September 2, 2009 Debbie- IMO-do not take a break from the abx at this time. If she is willing to switch-try something else. Again, IMO-amoxicillan is like giving these kids water. Try to get Keflex or Azith. Glad to hear that you were able to get Immunological blood especially since she has had a sinus infection all summer. It may indicate that she has something going on other than the Pandas. Keep us posted!
colleenrn Posted September 2, 2009 Report Posted September 2, 2009 IMO I would definitely not stop the antibiotics now, just switch. If the strep is intracellular, Amoxicillin is useless. You would need a cephalosporin or Zithromax (with Zithromax being the most effective). The rise in her titer from 360 to 480 makes me definitely think there is strep and if you just stop the antibiotic, things would get worse. PANDAS kids oftertn have a flareup whenever they are exposed to strep, even if the culture is negative. In my experience with my children, being exposed to strep is just as bad as having a strep infection, in fact, it is one in the same.
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