Kathryn's Pages

This update is titled with the name of the drug that we believe will change the face of CRPS to a large and exciting degree! We hope that those doing searches on Neridronate will find this blog because our daughter (CRPS patient for 8 years) received intravenous Neridronate about 6 months ago in a drug study (http://ccrpain.com/). The study was double blind but because of her noticeable symptoms and fast dropping calcium levels while receiving 4 IVs during the study, we feel sure she received Neridronate.

One month after receiving the drug her CRPS pain went from constant 8-10 on the pain scale to averaging between 3-5. And five months later her pain is still holding at the lower level! Her function has improved and her meds have decreased substantially!

Her CRPS pain can still spike if she injures her CRPS region (for Kathryn, that’s now her left leg, but much of the last 8 years it has been her entire left side and at times nearly the entire body) or if she’s fighting illness. But since treated with Neridronate her pain does return to 3-5 fairly quickly and holds there for the majority of her days!

Before Neridronate, we were in a constant battle with ever escalating CRPS pain. Nothing could stop its increase or give relief! No treatment lasted longer than a few weeks.

Her participation in an IV Neridronate drug study occurred in December 2015. Its affects were fully noticed approximately 30 days later. Since then Kathryn has enjoyed increased function and lowering her meds!!

Air quality in our home continues to have a noticeable affect on her pain and energy as well so we continually work on that (see our past blogs to learn more about what we did to Kathryn’s home.)

We will continue to search for treatments and we will continue to update this blog. To receive our updates make sure you enter your email on our Home Page on the Follow Us tab.

If you are a reader who has CRPS, or whose loved one has CRPS or any other chronic pain, please know that we frequently pray for YOU with great love and with great trust in a mighty and faithful God!

1Corinthians 1:18-22 NIV

For the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God. For it is written:

“I will destroy the wisdom of the wise;
    the intelligence of the intelligent I will frustrate.”

Where is the wise person? Where is the teacher of the law? Where is the philosopher of this age? Has not God made foolish the wisdom of the world? For since in the wisdom of God the world through its wisdom did not know him, God was pleased through the foolishness of what was preached to save those who believe.

For the first semester in 8 years Kathryn completed a semester with no accommodations needed!

Eight years ago at 10 years old, just like most other children, Kathryn attended school and completed all her school work normally; she was a high achieving A student.

It’s with great thanks that I tell you that this Spring semester at VCU Kathryn once again, for the first time in 8 years, was able to attend school normally and complete all class work, NO ACCOMODATIONS NEEDED FOR ILLNESS!! (And as a mom I have to brag… her GPA for spring semester was 4.0!)

Eight years ago Kathryn fell on a playground during recess. Her pain response system went crazy and overreacted into a horrible disease called CRPS.

Horrible intractable pain caused an inability to attend school and complete the quantity of school work required. Wonderful teachers and administrators along the way helped: they adjusted Kathryn’s classes and work material, they did extra hours of work in planning, they went the extra mile, they encouraged, learned and supported, so that she could continue her education at the level she could achieve until a treatment could be found.

Six months ago that treatment was found! Kathryn received a study drug that is giving her great relief!

She still has limited energy so is not taking on a full load of courses. However, this increased and sustained function in the CRPS world is nothing short of a miracle!!

We thank God for this wonderful blessing and the faith He creates in your heart! We thank Him for your prayers, love and support over these last 8 years! Please continue to pray!! For: 1)the continued process of approval and affordability of Neridronate in the US  2)for the 4-5 million in the US who suffer with CRPS  3)continued progress in Kathryn’s health and our wisdom as we seek medical treatment to that end.  THANK YOU!!

Psalm 56:4 Expanded Bible (EXB)

I praise God for his word.
    I trust [have confidence in] God, so I am not afraid.
What can human beings [flesh] do to me?