10th IVIG infusion … 3rd & final day

It’s been a long week … construction right outside our window here, cut her rate in half… helped a lot with headache, but took hours longer to run. I anticipate it will take even longer today.
Headache started spiking as she went to bed … hate to wake her. I’m feeling drained & weary from all the traveling … need rest. Hubby also working very long hours. We’re all exhausted. We’ll be home tonight & praying it’s a quiet weekend for all of us.
Faith is in a strong push to complete half a year of missed content (due to illnesses) and take state tests, starting next week; I’m overseeing that and helping her through it. Please pray she is well enough to do this.
Please pray for us… for stamina, good spirits, good rest and peace… and for all these issues to resolve smoothly.
UPDATE:  Infusion is running, headache at 7-8 (I had her nurse give an anti-inflammatory, hoping that will help as nothing else is helping), we will only go up to half of max rate today, which we hope will help with the several days of post-infusion side effects (severe headaches & vomiting) she has been having.  Here’s a pic of today – PANDAS girls can change the world!!!  All PANDAS-PITAND boys & girls can… and I believe, will change the world!!!  These children are amazing & have enormous  intelligence, tenacity and courage!!

IVIG # 10 - PANDAS girls can change the world!

IVIG # 10 – PANDAS girls can change the world!

High dose IVIG # 9

High dose IVIG # 9 for Faith’s PANDAS and Immune Deficiency will be this Mon-Weds (April 16-19).  Due to the reactions (severe headaches lasting days & sometimes unresponsive to meds, fever and vomiting) Faith had following the last two infusions, we’re changing to a different medication and running it over three days, instead of the usual two days.

We’re also getting back some of the labs we recently ran (and running more this coming week) and finding some answers there as well.  Although one never wants to have positive results to these labs, it’s good that we are tracking down the problems, so that they can be addressed and hopefully, help in her healing.  The most notable one is we’ve learned that she has diminished ability to clear certain toxins from her body due to alterations in her methylation cycle.  We’re hopeful that we are closing in on this one and anticipate it will be easily corrected…. nice that something is likely to be simple, so we’re thankful for that.

Prayers are appreciated that this one will go better and help her heal… speaking of which, please also pray for good sleep as she’s not been resting very well lately and sleep is crucial to brain healing.

Thanks so much; your prayers and support sustain us as God guides our every step.

Post-IVIG infusion complications – prayers, please

We spent 6 hours at Urgent Care this evening, due to severe headache and nausea following Faith’s high dose IVIG infusions (for P.A.N.D.A.S. and Immune Deficiency) Mon-Tues of this week.

Medications and fluids are not helping the severe headache or nausea, which has been ongoing since Tuesday evening.  Her case is very complex and challenging, with multiple diagnoses.

We are now home and hoping the meds and fluids will work as she sleeps to decrease her symptoms… if not, we’re most likely headed head back to Children’s hospital in the morning.

Please continue praying for the severe headache and nausea to subside without further intervention and for good rest… for all of us as we’ve been in and out of the hospital all week and I am beyond exhausted at this point. ♥

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