High Dosage IVIG infusion # 8 update

  • Due to reaction last month with Faith’s IVIG ( two day infusion, usually about 5 hours each day, every 28 days), we are having them done in the hospital for the next few, until we can stabilize her on these.  (She had severe headache, vomiting and fever that were ultimately brought under control with IV steroids and it’s suspected this may have decreased the effectiveness of the IVIG on her autoimmune condition).  She will likely need these long term (the plan is at least until she is a young adult) due to her immune deficiencies as her numbers continue to decline, making her more susceptible to infection and exacerbating the auto-immune process in which the antibodies attack her brain because of her condition of PANDAS.
Day one IVIG # 8 infusion

Day one IVIG # 8 infusion

  • Both infusion days were very long and rough this month (Mon & Tues this week).  Faith had systemic itching on day one & they had to pause infusion for 1-2 hours.  Were able to restart and complete after increasing one of the meds – finished around 9:30 pm (thought we’d be done late afternoon).  Gave higher dose of pre-meds next day, which ran better… until her IV infiltrated.  That took 1.5 hours to re-stick… she’s usually very brave and helpful for those, but is exhausted and has just had it at this point.  This one was completed just before 8 pm.
  • Specialist wanted us to remain in the area for two hours post-IVIG before heading home – in case of reaction.  As we were heading toward the interstate, she mentioned headache at 4 that spiked to 7 within 5 min – with a lot of nausea, although she did fight it back this time.  Turned around & back to ER.
  • Fluids & steroids in ER, followed by 4 days of steroids daily at home.  She slept for a little while… did not help.  They discharged her with headache at 8-9 and we got home around 4:30 am.  Sometimes, sleep is the critical piece to help the headache.
  • She slept and headache was 9-10 when she woke around 9:30 am.  While updating doc this am, Faith started having itching “all over”…. no signs of any new redness or rash.
  • Doctor ordered meds to help with the itching and so she will sleep most of the day, as well as continue the steroids and lots of fluids.  Medical team working on next steps…
  • I also have a medical test in the hospital on Thursday and will probably have to take Faith with me… assuming things are stable enough for me to get it done, rather than bringing her back to hospital.  That’s it for now… I am going to try to sleep myself.  Please only call if emergency, but feel free to email us or her.

Prayers sure are appreciated as we know God continues to carry us through these trials!

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