side effects... and I'm tired

[browneyesmom]

I'm sitting here next to her waiting for the Pharmacist from the specialty pharmacy to call me back because she suddenly had dizziness after her Hizentra infusion today - this is only her second and while her vitals are stable & there are no other signs of anaphylaxis, I wanted to be sure I wasn't missing anything, so here she is in our bed with me so I can watch her tonight. I've checked her sites a couple of times and also for any other systemic responses, but everything looks ok there.

 

The worst for her lately is the horrendous attacks on her brain, as I'm sure you know all too well. It's heart-breaking! She has episodes where she becomes very panicked and hyper-focused on something, then goes through a very minimally responsive phase, followed by a baby-talk & hugging phase ... and then does not remember any of it.

 

We now have an outstanding psychologist working with us who is proving to be very helpful in helping us support her as well as helping her work through some of this stuff.

 

The ones last week were so severe that I realized we had to put her on homebound instruction. That is supposed to begin tomorrow with one of her regular core teachers - a real blessing there! I also have another child study meeting for 504 accommodations tomorrow - my ex is going to stay with her while I attend that.... going to be a long day.

[browneyesmom]

Ok, about 1 am now and Pharmacist just called me back... said to keep her next to me overnight, but no need to wake her unless I notice a change... in which case off to ER if anything worsens. Otherwise, let the child sleep. I'm going to try to do the same; goodnight all.

[thereishope]

I hope she did well through the night and I hope you were able to get some rest. Let us know how she's doing....

[browneyesmom]

Thanks Vickie... I did get a little rest. lol She has not mentioned the dizziness this morning (and seems fine so far); only that she feels sick still - i.e. strep symptoms.

[browneyesmom]

Due to the snowstorm here, our child study meeting was canceled. She is now on Homebound instruction, which has not yet started due to same snowstorm.

 

She's having episodes every day.