Regularly Schedules IVIG'ers- Please Comment

[nevergiveup]

Looking for feedback on kids whom have regularly schedules ivigs.(Every three weeks, every other month, every month). High dose or not I am hoping to see how things are going for your children. Please comment on type of improvement, how many ivigs till improvement was first noticed, how long you have done regular interval ivig's and just your overall impression of what this therapy is doing, preventing, correcting. Thx so much for your comments. My dd gets ivig every 21 days and we are very pleased with this therapy. She has seen definate benefits and reduction in severity of relapse.

[peglem]

My daughter started IVIG last March- low dose and had another in April, low dose- she got very much worse after the second one, so we switched to 1.5g/kg every 4 weeks, starting in May 2010. Improvements have been slow and steady and we still get "dinged" w/ exposure to strep or inflammation (like those darn teeth trying to come in!)...But, compared to exacerbations before treatment, its a piece of cake. So, my daughter has had this most of her life- normal development was affected- she is consumed with OCD, but improvement means I can talk to her about it and she is trying to fight the OCD. Aggression and self injury are hugely reduced. She went from around 100 incidents/day (including the minor stuff where she just smacks her head)to 3-5 incidents/day. But the big stuff almost never happens anymore-when it does we know she has an exposure or inflammatory trigger. She's learning again at school, or I should say re-learning, since she had so much regression and loss of skills over a 5 year period. Since Nov. we've been doing @ every 3 weeks, instead of every 4, and have been able to go off bethanechol and have cut her lamictal in half.

My arms have lots of scars from her scratching/biting/pinching me in the past- but nothing current. The sore on her forehead that she had for @ 8 years because she kept banging it on things and re-injuring is healed- just a scar now. And her arms and hands are also healed- though I'm still concerned about this callous on her index knuckle on her right hand- she's not injuring it, its not bleeding or anything, but its like a big knob with a scab on top that never heals. The rheumatologist didn't seem to think it was a problem. But, I digress!