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saidie10

Post IVIG updates for DS8 and DS6

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Been a while since I last posted. With the holidays and going from PT to FT at work life is crazy as I am sure you all know. Both boys had IVIG on December 22nd and 23rd. This was DS8's fifth IVIG and DS6's first. Before the IVIG's we increased boys to daily Azith, moving the oldest from daily Penicillin to the Azith and starting the youngest on the daily Azith. DS8 was really struggling in school with focus, attention, concentration, handwriting and math. His tics were minimal to nothing and severe bathroom OCD was pretty much gone (yeah!!!) Once school started back up a few weeks ago, he was behaving better in class, his attention span was much better and the improvement in his handwriting was remarkable...wish I could post before and after pics! Then a week and a half ago, his facial tics started up and we knew something was going on. Of course a boy in his class had strep wouldn't you know it! Now we are seeing a return of a lot of his tics that we have not seen in a long time! Damn this strep! Any thoughts on what we should do? Change antibiotics? We are truly at a loss right now.

 

DS6 seems to be improving. His PANDAS symptoms were mild ticcing (a lot worse when frustrated or angry) and some OCD but he had the severe raging and emotional lability, ease of frustration and extremely poor impulse control. I think he is slowly improving so we are going to just continue to see how it goes with him. We were hoping for an overnight miracle but we will be patient and not change anything just yet.

 

Any advice is appreciated!

 

p.s. We are still thinking we need to test for Lyme at some point but know we need to wait a while due to IVIG. This is based on the positive Lyme only bands my husband and I both had on our Western Blot through LabCorp. Is it possible the boys could have Lyme? Is it possible the boys could have congenital Lyme? So many questions remain yet to be answered....

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