High Dose IVIG more often

As most of you are probably aware at this point, Faith improves a little more after every IVIG infusion; however, at just past three weeks from the last infusion, she starts to decline again.  Clearly, while it helps her, she is not yet stable.  Also, she continues to test positive for strep throat (as recently as Wednesday of this week), even on antibiotics and with the high dose IVIG infusions… she has not really cleared a strep infection in over a year.

I’ve been pursuing more research literature on Pubmed/Medline as well as meeting with doctors to seek help and determine what treatment plan they think would be best for her.

Our specialist (Immuno) wants to have Faith do IVIG every four weeks until she stabilizes.  At that point, he will re-evaluate and determine what she needs next.

So, this is a HUGE praise that she will finally be on a better track and we are hopeful that in time the treatment will help her.  Please keep in mind though, that this must be scheduled for the next infusion (she is already over 5 weeks since her last one at this point), so we are not looking at her being able to have this immediately.  Additionally, while repeat IVIG does WORK and help children with PANDAS, we’re talking about a child who has been sick for quite a while…. years… probably about 6 years and this is her second severe exacerbation.  We can’t anticipate healing to be immediate… it will take time – likely months… but we ARE hopeful that it WILL happen for her… at least much better than she is now… how much recovery, we do not yet know.  We continue to pray and trust that she… and we… are in God’s hands.

Thank you for your continued prayers for my sweet, precious daughter… God is listening and He is with us.  ♥

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