romom

Thank you all very much for the excellent suggestions and helpful tips. EAMom, will talk to the doc about doing antibiotics for a month or so and see what he says. Sound like a good place to start lyme_mom - I will try to find out more about lyme etc for my son. thank you again.. NancyD - Thanks for sharing your experience. That was very interesting and encouraging. So do you think our kids will always have to depend on IVIg and/or abx lifelong? I thought the way I understood from the doc. was sometimes 1 IVIg is all you need to cure the symptoms and the immune system reboots itself. And again since I am still trying to absorb all this, maybe I am totally off in my understanding..so apologize for being so confused and dense..But looking at the parents experience in this forum, it seems like the problem is never really completely resolved? The child is always on some abx and periodic IVIG? What if I am unable to keep up with periodic Ivig for my ds (assuming he is only showing 50-60% improvement) due to financial constraints or whatever reason - will the the child gradually go downhill again or will the 50-60% improvement stay permanently? Again, I understand that we may not have all the answers, but just looking for your thoughts. Thanks again all.

Hello all. I am a newbie here ..have been following this site for the last month or so..and can’t tell you how thankful I am to the Almighty for bringing me here and to all of you for excellent support and the wealth of information you provide. Actually I have a long story about my ds7 whose dx is PPD/A SD but I think for now I will just list out the recent events. Just returned from NC (Aug 20) after a 5 week of IV chelation, allergy shots and HBOT (approx 35 dives). My NT dd3 fell very sick the last week of our trip and was on antibiotic to cure a throat infection. They did throat culture but I am pretty sure they did not do it right and as expected the test came negative. Then in a couple of days my son became sick (cold, sore throat, mild fever) and doc prescribed antibiotic and did not perform throat culture in spite of our repeated requests. Said amoxicillin will kill the bacteria even if it is strep. Then on our way back to Chicago we started noticing vocal tics. My husband reminded me that in the past we always felt his tics went away for a bit when he was on antibiotics and we were wondering why this time it was different. Son was already on restricted diet, so then we wondered if amoxicillin caused tics and then goggle brought us here. Prior to this, we had absolutely no knowledge about PANDAs and why the past antibiotics (amox and azythromycin) had helped with tics. After reading several posts in the Forum, we felt maybe this is where we belong and immediately scheduled appt with Dr. K who was kind enough to meet with us the same day even though he was leaving for Europe the following day. He spent so much time with both my kids although ds7 was the one with issues. Anyways, per his diagnosis, he believes ds7 satisfies the criteria for pandas about 80%. The preliminary tests for ASO titers etc. came back negative but he said that could happen and not worry. We do not want to do the steroid burst and thought of proceeding with IVIG. Dr. K has advised we stop chelation before doing IVIG as he does not want to mix 2 treatments We had a few questions and looking for some guidance 1) Anyone done chelation first and then IVIG? If so, what was your experience with the treatment? Medium , good or bad? 2) We notice a lot more motor tics when he watches TV or when he is very anxious. Or like today on their way to NC for another round of IV chelation, my husband called from the aiport to say he is ticcing like never before. Would he still be a good candidate for Pandas or it is more Tourettes..Any thoughts? 3) Have you seen any improvement in behavior and over all peer to peer interaction post IVIG or is it mostly the tics going away? Ds7 has several behavioral issues and off late he is kicking us and it hurts. Just can’t wait to start IVIG but at the same time, I am telling myself to shut up and not get so excited as this has happened in the past and then a lot of disappointment follows. Somehow just want his tics to go away as it bother me too much to see him tic so hard that some days he cant even drink water without spilling all over him. Or days when suddenly I saw him with the shoulder tic and then a hop or skip or something like that. Never seen the hop before. And other days when he bends at an angle …My heart just bleeds. Anyways, please let me know your thoughts and if there is something I should or should not be doing b4 or after IVIG or anything that you can share. Sorry for the long post. And thanks so much for your help Regards Deepa