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Just sent positive 3-month post-IVIg report

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I just sent in our 3-month post-IVIg update. Overall, we have had very positive results. Did I have a list of lingering symptoms? You betcha. I also listed many things that do not seem to be issues right now & things that are much better. :)


The following symptoms have NOT appeared or were much decreased/rare: Rages, Separation Anxiety, Resisting Haircut, Long Delays in Responding/Detached(rare), Hitting/Kicking/Throwing Objects, Not Talking to Us in the Mornings(rare), Slamming Doors(rare), Tantrums(rare), Insomnia(decreased), Forced/Fake Laughter(decreased), Opposition(decreased), Laying Down in the Couch Cushions(decreased), Age Regression(decreased but still immature), Sleeping with Parents(decreased), Sensory Seeking Behavior(decreased).


Issues that linger: general immaturity, attention span, appetite/limited diet, insomnia(mostly gone but inconvenient when present), perfectionism, certain OCD manifestations ("even" compulsion, not being interrupted when he's talking, directing us, TV obsession(diminished), splash obsession, and probably others)


Positive news: homeschooling is going well, successful public outings, improved impulse control, plays with his toys(vs. watching TV/DVDs only), he wrote a book/story(this was a big deal...used to do this all the time but stopped back in April/May during 1st exacerbation), mostly sleeps in his own bed, usually in a good mood, can stop a tantrum(NO rages!), more patience/less frustration.


In reading the list of things that are gone/rare and the things that are better, there's no way to explain how different things are now than they were 4 months ago when we were dx'd. I know that PANDAS parents can understand the list a bit better tho'. And for everything on each list, there are items I overlooked (good & bad). We've had some "flipping back" issues and some days are better than others. BUT, my son seems to be healing, and that is definitely the best news. And of course, like a good PANDAS Mommy, I'm knocking on wood that this continues to be the case.


For his 7th birthday last week, I took my son to a movie & out to eat with 2 buddies(brothers). In talking to the buddies' mom, she kindly said she thought I was just sensitive to everything as I was noticing behaviors at the restaurant. Yep. I NOTICE EVERYTHING NOW. The reason is that I don't know if something is a one time blip or if it will come back to haunt me as the sign that something was wrong again. BUT...overall, he is doing well. I am looking forward to spring and getting him to parks & outside playdates (because for some reason I'm less scared of the outdoors than the indoors & the germs contained therein). C'mon Spring!!!


So...this is my positive news for the day. Sunshine and Hope to you all!


Sarah Jane


P.S. Now I'm off to get ready for our homeschool music lesson for today...the Justin Bieber movie. Never Say Never! :) (The lyrics to that song are fairly fitting.)

Edited by SarahJane
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Good to hear things are improving! As for being sensitive to things, that just comes with the territory. When they are sick, we worry about more symptoms surfacing/worsening, when they start to get well, we notice every little positive. Then we notice every quirk and things that could just be childhood oddities but we have learned to look at things as possible symptoms in the quest for catching another onset asap. PANDAS PITAND parent just become very in tune with their kids.

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