bgbarnes Posted July 29, 2010 Report Posted July 29, 2010 I have been MIA lately- I started a new job the day before we did IVIG for my son and have been SUPER busy. So far so good! We have had some flare ups- you can tell it is from turning back the pages- but they did not last long. He seems able to pull himself out of it faster than before. He had an episode of cognitive inflexibility the other night and was able to tell me "if he did not play the video game by himself before midnight he would go crazy, he went crazy in the past if he did not do what he said he was going to do"...shedding so much light on past meltdowns before we realized the OCD stuck thinking was involved. We got through it without him playing and without him "going crazy" and were able to talk about it in the morning and he agreed he was able to not do it and he did not go crazy!! He beamed with pride He and his sister get along better- I would say their squabbles are more normal sibling stuff with an occasional PANDAS flare involved. Still a little hyper, a little manic sometimes. The "touchy" thing is almost undetectable- (He had to touch things on both sides evenly) I see it because I know what to look for- only sometimes but for the most part it is GONE!!! He even said he could wear shorts without pockets- previously he needed pockets to be able to put his hands in to keep them busy. He asked to play Lacrosse again the other day and he even rode his bike- He still talks 100 miles a minute and thinks too fast for most people but that is probably just part of who he is- he is also making friends at camp!! So we are very pleased- I know we have a long way to go but there is an overall happiness to him that I love seeing! Thanks for all your support to get us to where we are! Brandy
saidie10 Posted July 29, 2010 Report Posted July 29, 2010 Brandy this is terrific news! I am so happy for you and your little boy...well your whole family!!!! I am so sorry I didn't get to meet you while we were in town. I am sure there will be more time soon though! Keep us posted on all the improvements!!!
Mary M Posted July 29, 2010 Report Posted July 29, 2010 It is always so reassuring to see positive posts after IVIg...or any tx for that matter! So happy for you all!
kimballot Posted July 29, 2010 Report Posted July 29, 2010 THANK YOU, THANK YOU , THANK YOU for posting! I am so glad to hear that things are going well! Please continue to keep us updated!
norcalmom Posted July 29, 2010 Report Posted July 29, 2010 Thats great! Thank yo so much for posting! We are hoping for similar gains!
bgbarnes Posted July 30, 2010 Author Report Posted July 30, 2010 I know when I was in the midst of a bad spell with my son it was the positive posts that gave me hope- he really is doing so much better- once again- NO touchy at ALL today- at least that I saw- he also seemed a lot calmer. oh another thing today he was looking at something and said what is 3x3x3 I said you can figure that out what is 3x3 the next thing you know he said Oh 27---the math is coming back!!
peglem Posted July 30, 2010 Report Posted July 30, 2010 This is so great to hear! Very exciting news!
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