cara615 Posted November 16, 2013 Author Report Share Posted November 16, 2013 i think that if we can prove PANDAS she will give us 30 days of abx or until the infection clears. Then she also mentioned IVIG. Link to comment Share on other sites More sharing options...
JoyBop Posted November 16, 2013 Report Share Posted November 16, 2013 WOW!! Thats amazing! I think the proof is in the pudding! Im not sure what more the titres are going to prove though given the fact that you already found the positive strep infection. High titres certainly won't hurt, and might prove hes not a carrier, however he already had at least one negative swab in the recent past. I suppose if he responds well to abx that will be the defining factor. I wish our doc would give us IV IG just like that! Link to comment Share on other sites More sharing options...
cara615 Posted November 16, 2013 Author Report Share Posted November 16, 2013 Well, we will see. Right now its day 3 and no relief. i guess I need to give it the 10 days and retest for infection, and proceed from there. Praying we get relief. Because 1) we will KNOW its PANDAS and 2) then I can BREATHE Link to comment Share on other sites More sharing options...
JoyBop Posted November 16, 2013 Report Share Posted November 16, 2013 My kids starting seeing relief in 8 days. 10 might not be enough, especially with Amox. I would find the literature and bring it to her and push for a longer course or stronger abx. Good luck! Link to comment Share on other sites More sharing options...
cara615 Posted November 16, 2013 Author Report Share Posted November 16, 2013 Thanks everyone for taking the time to respond with me today. i feel very alone in this and its really nice to have some comforting words of wisdom. xo Link to comment Share on other sites More sharing options...
nicklemama Posted November 16, 2013 Report Share Posted November 16, 2013 Amoxi is not particularly effective on strep. My friend with 3 kids, no pandas, cannot clear strep in them on amoxi. Your description sounds exactly like PANDAS/PANS. Rising titers of strep does not prove PANDAS. It shows where your child is infection wise. A percentage of the population never even have titers to strep when infected. My son has never had strep titers or a positive throat culture. He has PANS rather than PANDAS. my son has been on antibiotics for 3 yrs without a break. We have addressed methylation and other things but those don't get him close to 100% functioning. In flares, the recommendation is 30 days of treatment with abx and prophylactic dosing until post college if living in a dorm type setting. Link to comment Share on other sites More sharing options...
cara615 Posted November 16, 2013 Author Report Share Posted November 16, 2013 Ok I just messaged our PED who prescribed the amoxicillin and asked her to call in another script for a more potent abx. Let's see what she says.... Link to comment Share on other sites More sharing options...
cara615 Posted November 16, 2013 Author Report Share Posted November 16, 2013 One other thing I want to mention. With TS, starting a new school and a new grade are HUGE triggers for tics. Many kids with TS report waxing symptoms when school starts. For my son, his tics actually remained very low through the first day of school and all the way up till the 1st week in November. Again, another indicator that this this not the typical garden variety TS. Link to comment Share on other sites More sharing options...
qannie47 Posted November 17, 2013 Report Share Posted November 17, 2013 This should clear things up with titers.....http://www.latitudes...?showtopic=3756 JoyBop 1 Link to comment Share on other sites More sharing options...
cara615 Posted November 17, 2013 Author Report Share Posted November 17, 2013 What a great post. Thank you! it really explains a lot of things and puts into perspective how elusive this "disorder" really can be. To me, a sharp increase in tics associated with a STREP infection and then subsequent resolution in response to abx is proof enough that we are dealing with a PANDAS kid. Today is day 4 on abx and slowly, very very, gradually, we are seeing improvement. Nothing drastic yet but so far its been better than yesterday. I'm forging ahead.... Link to comment Share on other sites More sharing options...
nicklemama Posted November 17, 2013 Report Share Posted November 17, 2013 Slowly is typical. You are probably not going to see some overnight vast improvement. Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted November 17, 2013 Report Share Posted November 17, 2013 When we first treated our son for suspected pandas last year with antibiotics, it was a month and a half of antibiotics before people started noticing the improvement.. Link to comment Share on other sites More sharing options...
cara615 Posted November 18, 2013 Author Report Share Posted November 18, 2013 Ped just called in a 10 day course of cephalexin!!! It's usually a 5 day course but she it letting me double it so we can make sure the STREP is killed. Should I switch mid course into the amoxicillin or should I do the full 10 days on amoxi? We are on day 5 today. Link to comment Share on other sites More sharing options...
nicklemama Posted November 18, 2013 Report Share Posted November 18, 2013 I'd do ten on amoxi and then ten on cephalexin. Back to back. Link to comment Share on other sites More sharing options...
cara615 Posted November 18, 2013 Author Report Share Posted November 18, 2013 That is what I was thinking!! Link to comment Share on other sites More sharing options...
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