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?

Are we holding our breath waiting to see how Neridronate holds for Kathryn? And so very important to us… how it will work on all who have CRPS?

We’re trying not to, even when her pain shot up Sunday morning, we are trying to stay calm, hopeful, prayerful, trusting and yes, we are trying to breath normally. Indeed, maybe even daring to taste a little normalcy in life again after 8 years. (Her pain came down again mid-day on Sunday, yay!)

Kathryn continues to exercise and her pain, with the help of pain meds, is averaging between a 3-5 on the pain scale. It takes knowing CRPS to hear those facts as good news.

One may wonder, “Its a big deal for an 18 year old to exercise?” and “Pain that averages halfway up the pain scale and can zoom higher is a change for the good?” The answer is yes, if the person has CRPS.

We are now 3 months post the drug study where we believe Kathryn received 4 IV doses of Neridronate, a drug that is not yet approved for treating CRPS in the US.

Love and blessings to you all! We are especially in prayer for a CRPS friend named Apryl undergoing Ketamine this week, our thoughts, love and prayers are with you Apryl!

Psalm 33 THE VOICE

Exercise!

Dad’s kisses are very important

Improvement continues! Here’s a pic of Kathryn using exercise equipment… not a big deal to most 18 year olds, but for nearly 8 years an exercise machine was a torture device for Kathryn. She’s taking it slowly but she’s doing it, YAY!!

Many are asking what next? How long will this treatment last? When will Kathryn need Neridronate again? The short answer to these questions: we don’t know!

We also don’t know when Neridronate will be available to all CRPS sufferers in the US, we pray that it will be soon and that it will be affordable when it comes! We hope and pray for more knowledge of how and why this drug works and how it should be used. But for now we are just so very thankful for continued improvement in Kathryn!

“Jethro rejoiced over all the goodness which the LORD had done to Israel, in delivering them from the hand of the Egyptians.” Exodus 18:9

Kathryn is almost 40 days post participation in a Neridronate drug study where we believe Kathryn received Neridronate instead of placebo …thank you God!! 

American clinicians know relatively little about what a patient who has CRPS and has received Neridronate can expect but we hear a variety of results are occurring in American patients. Whereas studies from Italy reported outstanding and uniform results.

Although Kathryn has not yet had the “poster child” result where all CRPS pain disappears, she continues to see improvement that gives us hope and joy!

Some of the improvement we see:

• When pain goes up, which it still does, it seems to be able to come back down. (It’s hard to imagine but for most of the 8 years Kathryn has suffered with CRPS, her pain does not know how to come back down once it goes up. Her pain receptors want to multiply and intensify to emergency levels.)
• She has been able to slightly lower and lessen her medicine. Her meds seem to be more effective on her present pain. (CRPS pain does not go away by taking conventional pain medicine. The number of receptors signaling inappropriately just can’t be blocked by traditional pain meds.)
• She walks without a crutch and sometimes without a limp.
• She can sit up for longer periods of time instead of needing to be horizontal.
• She feels ready to start mild strength building with a physical therapist.
• Less fatigue
• Less defeated demeanor
• More joy!

Eight years of battle with CRPS makes us cautious with our hope but continually prayerful!

We are so thankful for all of you, we continue to pray for all of you in love in Christ! With great love and care we pray for those of you who suffer with chronic pain!

The grace of our Lord Jesus Christ be with your spirit, brothers and sisters. Amen. Galatians 6:18 NIV

Kathryn got a 4th and last drug study IV on December 17. She had symptoms after each infusion so we believe that she did get 4 IVs of Neridronate instead of placebo.

We did not hear until recently that Neridronate infusions can take a while to work, up to 40 days. It’s been less than a week for her but for a few hours of a few days her pain has gone down to a 6 on a 1-10 scale. When Kathryn’s CRPS pain goes to a 6 or lower she walks without her crutch and we see a little more energy and higher function. All of this has us daring to be hopeful and thankful for your prayers!

I lift up my eyes to the hills.
    From where does my help come?
 My help comes from the Lord,
    who made heaven and earth    Psalm 121 ESV

Merry Christmas to you all! May God bless and keep you.

I know that we told you that we would let you know when we got word that Kathryn made it into the Neridronate Study but, oops! Since we got the call last week it’s been busy busy…. with Christmas around the corner, lots of hours at work, college exams and papers to finish and preparation to travel…. you guys know how it is, you’re all doing some version of the same.

We got the call last week and SHE IS IN and  WE ARE HERE in NC! She will get her first drug study IV tomorrow morning!

Kathryn is the 25th participant in the North Carolina Neridronate study so we are rooting big time for NO PLACEBOS (no blank IVs) for number 25!!! We’re rooting for number 25 to get 4 IVs of Neridronate in the next 2 weeks!!!

Dave will bring Kathryn back to NC on this Friday the 11th for IV #2. She and I will come back on Sunday, IV #3 happens on Monday the 14th. Then Joe plans to bring Kathryn to the last IV on Thursday the 17th and to a follow up on the 21st. Phew!!

Yes, it was decided a long time ago by people we will never see whether participant #25 would get Neridronate or placebos or a mix of the two. But God is in charge of time so we can still pray for NO PLECEBOs.

Also, please pray for less pain as Kathryn travels, and that all will glorify God and His Kingdom!!

Jesus said to her, “I am the resurrection and the life. The one who believes in me will live.”  John 11:25 NIV