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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2 Comments (+add yours?)

  1. Harold E.Grubbs
    Apr 01, 2011 @ 20:37:41

    Hi Denise and Dan,

    Thanks for the update.

    I am asking our Great God who knows all about Faith and us too, since He made us.

    Also, I am praying for a miracle, in His time; which will be a mark in her life of something that happened in this time of her life which seemed impossible at the time. It will mark her heart and spirit so that she will know that God does answer pray(ers); that He did something so supernatural and that she will never be the same. Further, that her experience at this age will establish an intimate and personal relationship, she and those about her will also know, she belongs to God and she loves Him and He loves her.

    Faith is a special young lady whom God is going to use mightly for His Great Glory.

    Assure her of my daily (plus) prayers for her, her parents and Dan.

    Dad/Harold/Grampa Harold

    Reply

  2. PANDAS - PITAND ~ Mom to My Hero
    Apr 01, 2011 @ 21:17:42

    Thanks Dad Harold,

    I too, have been convicted for a very long time that God is going to use this experience for good … one, to draw her ever closer to Him and two, in some other way that none of us knows yet.

    He knows the source of whatever etiology(ies) causing this and I am (tired, but) trusting that He in His wisdom and great healing, will lead us to the solutions… even if that means simply healing her outright. 😀

    Love and blessings to you and thank you for being so faithful in prayer for her. We love you! ♥

    Reply

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