Merry Christmas! This year has absolutely flown by and I must say – I think the challenges of this year sped things along a bit. So much to look back on this year, good and bad, but I wanted to spend a minute giving you an update on Baylor.
Most of you who have known us a long time, have been well aware of some of the challenges of her health journey. Yes, she has an autism diagnosis – but she has been struggling with Immune Deficiency, as well. This Immune Deficiency shows itself at times/flares as PANS. Pediatric Autoimmune Neuropsyciatric Syndrome.
When she first had the symptoms of PANS, after about 2 years of her autism diagnosis, I knew what it was. It was the most horrifying thing I’ve ever witnessed. We had a doctor at the time who ran tests and labs and confirmed her diagnosis. We fought Cigna to give her treatments for this medical condition. They denied our appeal to their initial refusal. I tried to find an attorney who would take our case without an upfront cost but I couldn’t find one.
God showed up big time and after we fasted and had the elders of the church annoint her with oil and pray over her, she stopped flaring. Still, she has had lingering OCD, but nothing compared to what looked like full blown possession and non-stop screaming, moaning and seizing.
Until a year ago.
Baylor had another flare after we moved to Georgia and it lasted about a month. Just a quick idea about a flare – it looks like irrational fears that lead to full blown meltdowns , self-injuring behaviors, super dilated pupils that literally show her terror as she can’t control her verbal tics, totally interrupted sleep, pain, headaches, issues with going in to stores, restaurants or car rides, to name a few. I won’t lie, the PTSD I have from this is awful and I can only imagine how she feels. Seriously, the only reason I could think or reason this had come back to the forefront of our lives was that we needed to investigate and re-test her and see if we could help her again. We really wanted a new doctor and prayed that we would be led to someone who could help.
We ended up on a waitlist for a world-renowned doctor in the field of autism and PANS/PANDAS. She’s out of Chicago and has been seeing us virtually for the last 4 months or so.
In this time we have run numerous blood, saliva and other tests – realized our last doctor lost all of the previous records – starting from scratch.
She’s still Immune Deficient. She needs the treatment of IVIG to help her get better. When we started this year’s journey, we knew we would have to pay our doctor out of pocket but were very hopeful we’d get approved for coverage of the IVIG becaue of our new insurance. Well, our insurance is going back to Cigna in 2022. Yep, same one that denied us last time.
We need some prayers:
1. Please pray and believe God will have Cigana favor Baylor’s treatments this go around.
2. Pray that we can raise enough money to cover multiple treatments (it could be as many as one every 3 weeks until her labs change) WITH OR WITHOUT insurance coverage. They range from $10-$15k an infusion before insurance.
3. Pray she gets some healing from her brain inflammation and neurological damage that results from ID.
We will most likely set up a go-fund me, a specific bank account for her treatment, possibly Venmo, I’m not sure yet. Once we know – hopefully late January, as to whether we have insurance or not – how much we are looking at needing help with we will reach back out.
Thank you for reading, thank you for your prayers! Merry Christmas and Happy New Year!
Praying and believing with you ~