NIAID - National Institutes of Allergy Infectious Disease

The NIAID - National Institutes of Allergy Infectious Disease is the institute that has been helping my husband (Colin Benson) with DRESS Syndrome.  We are so blessed to have a strong team of dedicated health professionals in his life and caring for him.

In May of 2018 the NIAID (after much research and analysis of Colin's specific condition) offered to take Colin into their full time care and hospitalize him with a trial drug, Tofacitinib.  They were also going to try anti-viral therapy for his HHV-6 reactivation.

Tofacitinib is also known as xeljanz. https://www.xeljanz.com/  Xeljanz is primarily used for Rheumatoid Arthritis.  It is a strong and powerful drug, one that comes with a black box warning label.

Our family was made aware of this drug around the time he was hospitalized at Walter Reed Medical Military Center (WRNMMC) in December 2017.  The medical team at WRNMMC had tried various other drugs and these medicines just weren't strong enough or able to hold back his break through skin eruptions, rashes and his relapses.  Not only was his skin shedding in great volume, but his labs were showing more damage to his kidneys and liver. Additionally labs showed reactivation of the HHV-6 Virus.  It was clear that there was a lot more going on than just DRESS Syndrome.  DRESS Syndrome should go away after removing the offending drug and after several weeks of mediciations.  Unfortunately, Colin complex condition was much more severe and longer lasting.

Because his condition was so unique and the medicine that NIH was interested in using was so powerful, we took Colin to Mayo Clinic for a second opinion.  A new set of brilliant doctors were looking over his entire body, labs and medical history only to concur that his case was unique.  His doctors were all in uncharted waters and no medical treatment plan existed for his condition, nor was there a diagnosis that really explained everything happening with him.  Even still, every doctor was still trying to determine just exactly what was his medical condition.  Since DRESS Syndrome is a diagnosis of exclusion all of doctors could only do one thing, keep testing.

Some of the suggestions provided by doctors at Mayo Clinic were to continue with IVIG (Intravenous Immunoglobulin Treatment).  He previously used IVIG three days in a row while hospitalized at the Burn Unit in Washington Hospital Center, Washington DC. Additionally, Mayo Clinic doctors were able to determine that Colin's CYP2D6 Gene metabolized drugs slowly in his liver.

After visiting the Mayo Clinic in Minnesota twice, it was now April 2018 and we were ready to move forward with Tofacitinib and the Anti-Viral with NIH in Bethesda, MD.  The process took a few weeks and he was moved into their hospital for observation in May of 2018.

He stayed in-patient at the NIH (NIAID) for over 6+ weeks.  (Thankfully it was across the street from WRNMMC, so I was able to see him every day.  I was also permitted to spend the night with him several times.)

NIH working hard COVID-19

NIH Research Matters - March 24, 2020 Edition

COVID-19 is an emerging, rapidly evolving situation, and we at NIH are doing everything we can toward the development of diagnostics, therapeutics, and vaccines. You can find the latest public health information from CDC at www.coronavirus.gov and the latest research information from NIH at www.nih.gov/coronavirus. Meanwhile, science continues to progress on many other fronts, and we will continue to try to bring you stories across a wide range of topics.

Coronavirus may remain on surfaces for days

Scientists found that SARS-CoV-2, the virus that causes COVID-19, can be detected in aerosols for up to three hours and on plastic and stainless steel surfaces for up to three days.

To Learn More:
https://www.nih.gov/health-information/coronavirus

Are you looking for a connection to others and to God?
In case you have missed church this morning, please consider joining us at Risen Savior, in Orlando, FL

http://risensaviorwels.net/

Our Pastor has recorded his service for us to participate safely from home.

Keep safe and healthy.
God Bless you




20-03-22 Risen Savior Lent 4 from Steven Blumer on Vimeo.

Colin's Condition - March 15, 2020

Corticosteroid Step Down

Medical Information:  Hydrocortisone/ Steroids 

March 15, 2020

We were instructed by the endocrinology department at the Lake Nona VA to continue with Colin's Steroid Taper.  

We were instructed to continue with his Cortisone (steroids) taper, or "step down" and his doctors put a plan together that would cover the next few tapers.  We would be stepping him down four weeks at a time.  He began this schedule on January 26, 2020; however we traveled a little (to meet our grandchild) so he was too exhausted to start the next taper.  We moved it back two weeks.

Today he is on: (Listing immune suppression medicine only)

15 mg of Hydrocortisone 10 mg in the morning and 5 mg in the evening.

It is good that he is off Prednisone, but his body is still not completely clear of his rash and itchiness.   

Currently his abdomen and legs down to his feet are covered in red skin rashes and bumps.

At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.  Unfortunately, he has suffered damage to his eyes from long term steroid use.  He has a lot of eye pain and pressure.  I give him a lot eye drops.  We also learned that he not only has glaucoma, but also has to have cataract surgery.  This explains why he is having a hard time seeing, blocked vision, headaches, pain and burning in his eyes and also seeing starbursts. 

Doctors have been attempting to slowly taper him off this high dose of steroids, cellcept and also Cyclosporine to replace with his experimental drug:  XELJANZ XR (tofacitinib) 

Here is some information about tapering slowly from Mayo Clinic

https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Medical Information: https://www.mayoclinic.org/drugs-supplements/hydrocortisone-oral-route/side-effects/drg-20075259

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  

There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  

So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

Colin's Condition - January 26, 2020

Corticosteroid Step Down

Medical Information:  Hydrocortisone/ Steroids 

January 26, 2020

We were instructed by the endocrinology department at the Lake Nona VA to continue with Colin's Steroid Taper.  

We were instructed to continue with his Cortisone (steroids) taper, or "step down" and his doctors put a plan together that would cover the next few tapers.  We would be stepping him down four weeks at a time.
Today he will taper to 15 mg in the morning and then 5 mg in the evening for four weeks.

Today he is on: (Listing immune suppression medicine only)

20 mg of Hydrocortisone 15 mg in the morning and 5 mg in the evening.

It is good that he is off Prednisone, but his body is still not completely clear of his rash and itchiness.   

Currently his abdomen and legs down to his feet are covered in red skin rashes and bumps.

At the onset of his illness Colin was initially taking 125 mg of steroids!  That is a very high (dangerously high) amount of steroids.  He began taking this high dose back in April 2017.  Unfortunately, he has suffered damage to his eyes from long term steroid use.  He has a lot of eye pain and pressure.  I give him a lot eye drops.  We also learned that he not only has glaucoma, but also has to have cataract surgery.  This explains why he is having a hard time seeing, blocked vision, headaches, pain and burning in his eyes and also seeing starbursts. 

Doctors have been attempting to slowly taper him off this high dose of steroids, cellcept and also Cyclosporine to replace with his experimental drug:  XELJANZ XR (tofacitinib) 

Here is some information about tapering slowly from Mayo Clinic

https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Medical Information: https://www.mayoclinic.org/drugs-supplements/hydrocortisone-oral-route/side-effects/drg-20075259

My husband has a very unusual, prolonged undiagnosed medical condition that is chronic.  They have temporarily labeled his condition as immune dysregulation and chronic "DRESS Syndrome" with a reactivation of HHV-6 virus.  

There is a HHV-6 Foundation website that contains "some" information that is helpful to us, but again there has been no one found in the world that has what my husband has.  

So this entire process has been scary, stressful, confusing and challenging.  Which is why we continue to prayer for God to watch over Colin and to heal him.  

Happy New Year 2020

November Is National Family Caregivers Month

November is National Family Caregivers Month. 

This information was shared from this blog page:   Click Here or read below

It is a time to recognize and honor family caregivers across the country. This year’s theme is “Caregiving Around the Clock.”

This special observance enables us to do the following:

• raise awareness of family caregiver issues,
• celebrate the efforts of family caregivers,
• educate family caregivers about self-identification, and
• increase support for family caregivers.

“Caregiving can be a 24-hours-a-day, seven-days-a-week job,” states the Caregiver Action Network, which spearheads National Family Caregivers Month. “Providing care around the clock can crowd out other important areas of life.”

What challenges do family caregivers face, and how do they manage them day and night?

• Morning: The average family caregiver is a working mother of school-aged children. Mornings become a tricky balancing act of getting the kids ready for school, making sure your loved one has what they need for the day, and then getting yourself out the door for work.
• Throughout the Day: Up to 70 percent of the time, the family caregiver manages the medications. The more serious the condition, the more likely it is that the family caregiver manages the medications for the patient. This means ensuring their loved one is taking medication correctly and maintaining an up-to-date medication list.
• During the Workday: Six out of 10 family caregivers work full or part time in addition to juggling their caregiving responsibilities at home. Most say they have to cut back on working hours, take a leave of absence, or quit their job entirely.
• Evening: Evenings are for family time and mealtime. Nutrition is as important for caregivers as it is for their loved ones. Proper nutrition helps maintain strength, energy, stamina and a positive attitude.
• Late at Night: This might be the only time that family caregivers get a few minutes for themselves to rest and recharge. The chance to take a breather and re-energize is vital so they can be as good a caregiver tomorrow as they were today.
• Middle of the Night: If loved ones may need to go to the emergency room in the middle of the night on occasion, family caregivers should be prepared ahead of time with what they need to know and what they need to have with them.

During National Family Caregivers Month, we recognize the challenges family caregivers face when their loved ones need “Caregiving Around the Clock.” The Caregiver Action Network website (link is external)provides promotional materials for general use, including a media kit, posters and sample proclamations.

The Caregiver Action Network (link is external)(the National Family Caregivers Association) began promoting national recognition of family caregivers in 1994. President Clinton signed the first National Family Caregivers Month Presidential Proclamation in 1997, and every president since has followed suit by issuing an annual proclamation (link is external)recognizing and honoring family caregivers in November.

The Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers, from the parents of children with special needs and the families of wounded soldiers to a young couple dealing with a diagnosis of MS and adult children caring for parents with Alzheimer’s disease. The nonprofit organization provides education, peer support and resources to family caregivers across the country free of charge.

I will be sharing information about my journey as a Military Caregiver throughout the month.Check back for the updates, photos and stories.