We seemed to have BEAT the side effects! Woo Hoo!
After The Princess had her first IVIG treatment on April 27th she got VERY sick. I posted HERE about her side effects.
When we went to her appointment this week, I was pretty sure her platelets were back down since she was starting to bruise again. She also had lots of Petechiae spots (small, reddish-purple spots that look like a rash, but are not raised). So, while I had hoped of a higher count since her IVIG was 3 weeks prior, her actual count was down to 12,000.
We chose to do another round of IVIG, even knowing the side effects. This time though, I made the decision to "treat" the side effects before we noticed them.
We went in for the IVIG on Thursday. She did amazingly well again. It took 3 tries to get the IV in this time around, since people with ITP have fragile veins. The first two "blew" and the nurse would not try more than 2 times. I will say, The Princess fought this time more than previously and her crying made me so sad.
The nurse called for the IV "team" from the hospital. We waited about 1 hour before the "team" came in. The "team when The Superhero was dx with Diabetes consisted of about 3-4 people. This is what I expected when they told me the "team" was coming. Fortunately, this time around "team" just meant ONE person and our new favorite transfusion nurse, Chris. Chris did a great job wrapping The Princess in a blanket so she could not move her arms and legs, and the IV "team" nurse went for it. One try and the IV was in.
Once The Princess was hooked up, it took about 3 hours for the treatment. I was lucky to get a lot of work done during this time while The Princess slept the day away. (thank God for Benedryl!) She did get a manicure and pedicure before snoozing though. (I will post about that another day)
When the treatment was over, her IV was removed and we were sent home. Around dinner time I decided to start giving her the Tylenol with codeine and the Zofran. We continued to give her both of those medicines throughout the night (as prescribed) and added in Motrin in the morning.
Typically, with low platelets, people with ITP cannot use Motrin since it affects how the blood works. Since we know the IVIG works fairly quickly for The Princess, we decided to add it in the next day to help fight the possible fever.
We made it through the first night with NO vomiting! Woo Hoo! She did toss and turn more than normal. She whimpered in her sleep too. I was up for 2 hours just waiting for the vomiting that never came. And we made it.
Then yesterday, I kept her medicated again. And again last night. She tossed and turned again. She started saying that her head hurts. I am sure it is not as bad as if the side effects were full force.
So, after almost 2 days post IVIG I am SUPER happy to announce, that WE BEAT THE SIDE EFFECTS!
This was HUGE for all of us. This helps me as we move forward with her ITP and possible future treatments.
I am working on another post to explain more about ITP. For now though, please keep praying she goes into remission SOON. Please pray that we won't need too many of these treatments. And please pray we can keep beating the side effects with each treatment.
*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*