Here are our highlights:
- Faith had another MRI today (with and without contrast), as well as an MRV. These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain. Her headache pain is currently rated at a 6 on a 1-10 scale.
- Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.
- She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others. We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.
- She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one. Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.
- Did I mention that we went Gluten Free in November… a week before Thanksgiving? Ha! It’s actually going quite well and we’ve had a lot of fun trying new things! I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well. Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden). While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!! Praise the Lord for this blessing!!
Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.
I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired. I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis. I don’t tend to excel in that area.
Please keep us all in your prayers; thank you.
- New Articles About Chromatin, IVIG and Mukoviszidose Published at EurekaMag.com (prweb.com)
- BioPlus Specialty Pharmacy Hires Regional Director Covering North Carolina Territory (prweb.com)
- Reagan Family Update (aliciareagan.wordpress.com)