texascatholic Posted February 27, 2011 Report Posted February 27, 2011 We had our third IVIG a week and a half ago. I think DD is still in the yucky post-IVIG stage that we always have. Today there were two new symptoms: a 30 minute period of being catatonic preceeded by a strange dance-like walk with one leg dragging. The funny walk was at church along with a bunch of complex tics. Just wondering if your child has experienced this and what does it mean (streP?). We are currently on Augmentin XR twice a day (1000mg) although strangely I've been thinkging of getting of antibiotics (if possible) and going to naturals. I know this may not work, but plan to speak with our doc about it later. I also want to try antivirals since she really reacts to viruses.
chodnett Posted February 27, 2011 Report Posted February 27, 2011 We have a leg bending tic but I dont know how to explain it. I dont know how long you have been treating but I can say we have been on AUGMENTIN XR 1000 mg 2 times a day and now 1000mg a day for almost 1.5 years and 3 HDIVIGs and we are stable although there have been many spikes it seems like we have made progress on antibiotic treatment. Especially now that we are looking into LYME maybe the culprit I am glad to know it is the antibiotic treatment would be the right treatment. It just takes time.
butterflymom Posted February 27, 2011 Report Posted February 27, 2011 (edited) = Edited February 3, 2016 by butterflymom
texascatholic Posted February 27, 2011 Author Report Posted February 27, 2011 Thanks...I will look that up on youtube. She has strange movements often. Good point about the antibiotic treatment, Chodnett. The confusing thing about all of this is that we've never had high strep titres. Also, IGENEX came back negative (although band 41 was positive) so far. She seems better right now. Weird, wacky stuff.
MomWithOCDSon Posted February 27, 2011 Report Posted February 27, 2011 We have the "leg drag" during extreme exacerbation. DS doesn't even appear to realize he's doing it. Other "odd" movements during the worst days of exacerbation include double hand circles (waving), rocking in a stationary seat, clenching and unclenching fist (usually his non-dominant one -- the left) repeatedly. I'm guessing only a PET scan or MRI might be able to tell the real story, but I associate those movements with the inflammation, especially since they evaporate when his other PANDAS symptoms evaporate.
chodnett Posted February 27, 2011 Report Posted February 27, 2011 Yes, She is positive for band 41 on western blot. Have not done IGENIX, have boxes and request per DR. B. But I tested postive for 4 bands not IGENIX, I plan to do IGENEX too.I have already seen LLMD and started LYME treatment. It is just difficult and more complicated for daughter living in TEXAS.
butterflymom Posted February 28, 2011 Report Posted February 28, 2011 (edited) = Edited February 3, 2016 by tampicc
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