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Thanks everyone. Her OCD is still doing better than before we went to NIH. Her behavior has improved a little, but it's still not normal. She's been falling asleep a little better than before. It seems most have trouble with that after IVIG. Hmmm. We are a week out now. Hopefully we will have a clearer picture in another week.

 

They did tell us the possible side effects (many, many times) and they call us every other day to see how she's doing. Because of it being research they go overboard making sure you are informed and ask if you still consent at every step. They told us to push fluids before the infusion and they followed it with a bag of fluids both days. They didn't tell us to continue pushing fluids in the days following, though. I emailed them on Tuesday to ask about her terrible behavior and they wouldn't tell me if it could be from the infusion. They just said they had not seen any patterns with the kids in the study. I suspect they don't want to tell me anything that would sway our opinion on whether she got it or not. The nurse told me if was probably fatigue from travel - I know that's not the case. It is extreme behavior. Another person in the study said it might be disappointment from not seeing more improvement. I don't think that's it, either. She's only 7. I don't think monitoring for improvement is on her mind and influencing her moods daily.

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I emailed them on Tuesday to ask about her terrible behavior and they wouldn't tell me if it could be from the infusion. They just said they had not seen any patterns with the kids in the study.

 

Yeah...they probably can't say anything b/c it is a double blind study.

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I'm hanging on by a thread now. I guess she is overall a little better, but the behavior crap is really old. Her OCD is better, maybe 40%, but the behavior stuff is just annoying. I know it could be much, much worse. It's been two weeks today from the first day of infusion and we very well just need more time, or possibly she got placebo. Her tics are gone, at least. This morning she is doing her math and had a problem that said Todd is 15, Steve is 8. How much older is Todd than Steve. Her answer was 4-8=6. What. She is normally very bright. I think it's just disappointment because things were looking pretty good the first few days. If she doesn't get better I can't imagine waiting 4 more weeks for a chance at IVIG. I really want the old her back.

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I know you do. Big hugs to you. I know this must be so hard. Wish I could fast forward for you. Take it one day at a time. Be good to yourself and try to take some time away if at all possible. Keep your expectations realistic. This won't last forever. Remember, this is only temporary. Things are going to get better. Hang in there.

 

Dedee

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We just did our second this past Thursday and Friday.

 

I know that with the holiday approaching and Spring around the corner it gets harder for me to be patient.

 

We have seen some old behaviors resurface as well as some improvement. Hopefully, it'll fall in place for our kids soon!!

 

T.Anna

DS 14

dx 11/30/12

Last at school in January

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Thanks, ladies. I called DH home from work today to give me a break. I had just had enough. I got a nice long nap and he straightened up the house. When she gets in a behavior episode it may last just a few minutes or up to an hour, but then she just snaps out of it. She may swing back and forth frequently, though.

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