qannie47 Posted February 28, 2014 Report Share Posted February 28, 2014 When my little guy, age 8 was at a overnight stay for several tests, he started referring to the nurses as, "blood stealers"....he was not thrilled, but he was a trooper and he let them "steal his blood". Link to comment Share on other sites More sharing options...
Hmrz Posted February 28, 2014 Author Report Share Posted February 28, 2014 Second day done and it was as good as day one. I secretly thought in my head that he was already well on his way to recovery because I felt like I saw such a lightness and joy in him. Then hours later he seemed to have a weird episode that turned into a mini rage. When he finally started using his words again he said he has dizziness and a headache and I am guessing the behaviors go along with that. I put in a call to acreedo and they said they will return my call after a bit of research. Somewhere in me I know that this must be normal because I have been able to benefit from the experiences of everyone on this forum. I'm just a little worried about the bizarre behavior. Link to comment Share on other sites More sharing options...
qannie47 Posted February 28, 2014 Report Share Posted February 28, 2014 When my ds had IVIG he got a headache day 3, one day after treatment. Our dr gave us a steroid. He said it was important to wipe out the headache right away if it starts. One dose and he was good to go. Link to comment Share on other sites More sharing options...
airial95 Posted March 1, 2014 Report Share Posted March 1, 2014 Lots of folks report at "turning back of pages" - or slight regression post IVIG, so that is what the behaviors you may be seeing are. Keep him drinking for the next few days too, it always helps! Link to comment Share on other sites More sharing options...
Hmrz Posted March 1, 2014 Author Report Share Posted March 1, 2014 Thanks for the reassurance. It's amazing that I have spent hours reading and researching so I feel so prepared and educated on what could happen but when your living it all that prep goes out the window! Things have definitely improved.( I keep typing that and deleting it because I'm terrified to say it on record.) he had body aches yesterday and a very mild headache but his spirits were great. He had a mini meltdown when his homeschool teacher arrived in the afternoon.( he has Carlson hospital homeschool, but its difficult to get him to do any work at all) he finally calmed down and gave the teacher a tutorial on a new lego set he put together. I saw that fight or flight anxiety when she knocked on the door. He says he wants to go back to school but that seems so far beyond where we are. All in all I can't imagine that the ivig itself could have gone any better so now the wait to see the effects. Link to comment Share on other sites More sharing options...
Hmrz Posted March 5, 2014 Author Report Share Posted March 5, 2014 We are now day 6 post ivig #1. We were seeing great improvement. Even my ds9 said he felt different inside and all the bad was going away then last night out of nowhere an hour rage. I had to physically restrain him to keep him away from his brother. It was an hour of hitting kicking name calling and saying he wanted to kill us. Then as quickly as it started he was fine. He apologized and went on with his night. I wish I could rebound so quickly! When we talked about it he said i could have stopped but I wanted to get all the anger out I was just so mad. Is this turning back the pages? Herxing? Did anyone else experience immediate improvement then spontaneous rage? Link to comment Share on other sites More sharing options...
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