melanie Posted December 30, 2010 Report Share Posted December 30, 2010 Another IV today hopefully it goes well New years is tomorrow .I need to evaluate theyear.Saw Dr T yesterday went really well .He hasnt seen danny in 6 months so he was shocked how well he was doing.that made us feel great,sometimes when you micromanange everyday you dont see all of the good Melanie Link to comment Share on other sites More sharing options...
lynn2 Posted December 30, 2010 Report Share Posted December 30, 2010 I'm glad to hear that he has improved so much--if you don't mind my asking, what has improved? I'm trying to figure out how to measure improvement. Link to comment Share on other sites More sharing options...
melanie Posted December 31, 2010 Author Report Share Posted December 31, 2010 the main changes are less rage still has episodes but they are short about 5 minutes and are all words (f B ) curse words and end in an apology a sincere apology.I have begun to ignore these behaviors.Im not sure if thats the right thing to do.I know if i witnessed someone elses child doing this I would expect the parent would punish that child,so I probably should too I truly believe he cznt help it at all. His language has exploded he doesnt search for words and doesnt get frusteraed looking for words. He can sit in a room with others and not freak (most times) melanie Link to comment Share on other sites More sharing options...
KaraM Posted December 31, 2010 Report Share Posted December 31, 2010 Wow, Melanie. Every 3 weeks. What a grueling schedule for both of you. I can't imagine. How old is your son? How does he feel about it? Does he dread it or does he accept it willingly knowing it helps. Does he suffer many side effects during/after or have you been able to prepare his body enough? We have only treated with abx so far - but I'm wondering if we will need to take this step at some point. Kara Link to comment Share on other sites More sharing options...
browneyesmom Posted December 31, 2010 Report Share Posted December 31, 2010 Thank you for the update, Melanie & I hope this one goes well for him. I appreciate the info about what you see improving as we have just completed our first IVIg in the hospital a week ago. Have you seen gradual improvement over time, dramatic improvement after each infusion? Does it get worse just before an infusion is due? Are there any symptoms that have disappeared completely or are they all simply reduced in severity & duration? Link to comment Share on other sites More sharing options...
browneyesmom Posted December 31, 2010 Report Share Posted December 31, 2010 Oh... and how was it decided to do every 3 weeks instead of every 4 weeks? Link to comment Share on other sites More sharing options...
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