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Friday, October 26, 2012

Rituximab #1 & Benadryl nightmare!!

We checked into the PICU on Thursday morning so Bailey could start her ACTH & Rituximab treatments under close supervision. The ACTH injections are the steroid injections that we'll be doing twice a day (once a day soon) at home. The Rituximab is the chemo, but they said today that she's getting 1/4 of the dose of what they would be using if they were treating the cancer, so that was a little relief. She did really well with the steroids & I'm quite proud of myself that I was able to give them without near as much trouble as I thought. I was one big ball of anxiety about it but I feel much more at ease about it now, probably because she didn't really seem to mind that much. They started the Rituximab infusion about 1 today & they started on a low dose & bumped it up every 30 minutes. After the second or third time they bumped it up she started breaking out in hives around her ears, in her eyebrows & her hairline. Her oxygen saturation was still perfect & her blood pressure was great, but they went ahead & decreased the dose back down to try to stop the hives. We were keeping a close eye on her, which was the reason we were in the PICU to begin with. One of her oncologists came in & saw & said that it was fine just to monitor her to make sure nothing changed. About five minutes later the other oncologist came to check on her & didn't seem to want to wait it out, even though at that point they'd already started fading on their own. She ordered Benadryl to give (side note:  Benadryl is on the no-no list of drugs for OMS kids. Normally children are drowsy afterwards, but Bailey gets all trembly & her eyes start rolling back into her head. Even though it's on Dr. P's no-no list, they do order it to pretreat for infusions because they're trying to prevent reactions to the treatments before they start. I called Dr. P last week & asked if we could use something else to pretreat because the two times they gave it to her last week before the IVIG it made her agitated & made her opsoclonus worse. They agreed & we pretreated her with something different today.) The nurse had no sooner finished giving her the Benadryl than she went NUTS!!! It was the most awful rage attack she's had, even worse than the ones she had from the Morphine after her tumor removal surgery. She was trembling & her eyes were rolling around horribly, she was arching her back & trying to push off of me, I couldn't hold her, I couldn't lay her on the bed, there was just nothing that was working. I think the nurses were even pretty shocked & we were all upset with the effects left from such a seemingly simple drug. It took about 25-30 minutes before she settled down, but then was back to being a happy girl. The Benadryl prescribing doc came back to check later & once she found out how she reacted she agreed that we would probably do the remaining 3 Rituximab treatments at a slower infusion rate & just do them in the PICU with something other than Benadryl. I'm 100% ok with that so long as we never have a fit like that again!

2 comments:

  1. Can they use Zrytec? I know it is still an antihistamine but it's different kind. Poor baby. So glad no more Benadryl.

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  2. Yeah, they pretreated with Zyrtec & it worked til they bumped up the rate of infusion. I think that's what they're going to keep using & just keep it slower.

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