Colin's Condition - NIH Discharge

NIH discharge

Journal entry by Laura Benson — Jul 9, 2018

Colin was discharged from NIH tonight 

NIH admitted Colin for a specific autoimmune protocol.
He was monitored closely from May 29 through tonight (July 9) inpatient and finally discharged back to Walter Reed. He will continue to return to NIH as an outpatient three days/week.  Thankfully NIH is directly across the street from Walter Reed.  
Although he is considered an outpatient, we will be spending many days at NIH -  transporting him back and forth from the Navy base to the NIH campus.

We spent the entire first half of this year looking for other solutions or answers to "What is wrong with Colin?"  We even took him twice to Mayo Clinic in Rochester, MN for several weeks at a time.
Sadly, there were no answers, no prognosis and not even a diagnosis.  The only conclusion is that the medicine he is currently on is causing too many dangerous side effects, and unfortunately they aren't helping control his condition any longer. 
He has been constantly waxing and waning - but never healed or even managed.  He has had several relapses and hospitals stays.  And, every day is pain and discomfort for him. 

 

  
The NIH doctors had planned to taper the immunesuppressive drugs that he has been on for the past 1 1/2 years and replace them with a new experimental drug.  
The drug itself is not experimental, but using it for this purpose is experimental.  
To be clear - this drug is prescribed and used on other types of conditions, but not on someone with DRESS syndrome, Drug Hypersensitivity or the type of immune condition that has manifested in Colin. 

 

The goal during his stay at NIH was to get him off some of the meds through a slow taper.

NIH added a new drug: Tofacitinib to target his jak/stat pathway. 
They also added an antiviral medication, valganciclovir, for his HHV6 reactivation.  

So basically, add the new drugs and taper off the others.
So far - some of the taper was successful, while others were not.     

Today we were told by one of his doctors that this new drug may not cure him, but we were reminded and do understand that he is helping to further science and research and any others that may suffer similar conditions.  

Colin's Condition - Independence Day 2018

Independence Day (4th of July 2018)

Journal entry by Laura Benson — Jul 4, 2018

This year has flown by.  We have spent so much time living in and out of hotels, hospitals and traveling from Bethesda, MD to Rochester, MN to Orlando, FL.

Colin has currently been inpatient at NIH since May 29, 2018.  He agreed to try a new medication that could potentially help with his JAK/STAT pathway.  Additionally, his condition continues to wax and wane and with that he also has also reactivated the HHV6 Virus.  So, the doctors at NIH are trying to control his inflammatory response and his virus with two additional drugs:  Tofacitinib and Ganciclovir

The goal is to add the Tofacitinib and taper off the other immune suppressing medications that he has been on (prednisone, cyclosporine and cell cept).  Long term use of these medications have been causing secondary problems for Colin (dangerously high blood pressure, Cushing Syndrome, glaucoma, acute kidney injury and many others).  The less medication he is on, the better!  Side effects are nasty and they do cause a lot of damage.  

The taper began, first with cyclosporine.  Doctors make adjustments week by week, so we have to be very patient.  Colin has to have his blood drawn and body examined daily.  We have been trying other new things as well, such as milk baths.  (He uses the hospital walk-in tub/bath and I pour an entire gallon of milk into the bath water with a solution of bleach).  
He was finally completely off cyclosporine on Sunday, but then the doctors didn't like the lab results and were not comfortable seeing his rash breaking through, so he was placed back on cyclosporine. 

So the new plan would be to try to taper his steroids.  
This can be tricky, because his body needs to wake up adrenal glands. In the beginning, Colin was on 125 mg of prednisone!!!  He was on 100 mg then 80 mg and stayed around 60 mg for several months.  It has taken well over a year +++ to get his taper down to 40 mg.  He keeps going up and down, from 80 to 100 then back to 80 and then slower on the way down. And even slower as they get lower.  It's a roller coaster for his body and his health.  He has been down on 40 mg for months now.  The doctors have attempted to go lower, but it wasn't successful. Meaning, his body can't make up the difference.  Trying to taper Colin off steroids always causes another hospitalization - because his own immune system can't wake up.  When this happens, doctors add more steroids back on and go back up, which makes the steroid taper process take even longer.

Honestly, we were told back in Spring of 2017 when this all began that a drug reaction would last 2- 8 weeks and that he would be off steroids in about six months - so much for that!!

He has been struggling with the steroid taper the entire time.  And his condition has caused multiple hospitalizations and the loss of so much skin.  So much damage to his body.  It's unimaginable.  And unceasing.  He is so very strong and patient, but it takes a lot out of him to be in constant pain and misery EVERY single day - without a break.  I have not seen Colin have one single "good day" since this all began. We do the best we can to make life worth living and enjoyable as possible - like trips to see the dogs and family in Florida.  But it's not the same when he is sick, handicapped (wheelchair bound) and has to conserve all of his energy.  It's heart breaking to watch someone you love go through this and realize there is nothing that I can do to help him.

Hopefully with the addition of Tofacitinib he can successful taper down to a lower (less damaging) maintenance dose of steroids.  And then doctors can decide which immune suppressing medicines to taper next, if possible.  

To add insult to injury, Colin's 23 year dedicated and highly successful career in the United States Navy is sadly coming to an end for him. (Too soon and NOT the way he wanted to retire; not his choice and not fair to him.)  
The Navy began his retirement process last month.  We were told to move our Florida home into storage and tie up any loose ends, so that we can focus on his Medical Review Board/Retirement while living in the Wounded Warrior Barracks (building 62 as we call it).  

Thank God that NIH has allowed Colin to remain in their hospital for over a month for supervision.  (He was admitted on May 29)  It's comforting to know that doctors have been carefully looking his body over -literally inside and out, every single day for over a month straight.

We can also thank God that He placed us in Washington DC in 2016, when Colin was given orders to DLI (Language School).  Thank God this serious illness and unknown medical condition did not happen while we were living in Northern Germany. 

We pray every day for Colin's health and strength to keep fighting through this and we thank God for putting him so close to Walter Reed National National Military Medical Center and National Institutes of Health, which are literally across the street from each other. 

We are celebrating the 4th of July in the hospital at NIH.  

Thinking of all of you and hoping you have a safe holiday. 

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PTSD Awareness Month

June Is PTSD Awareness Month

The VA's crisis helpline is 800-273-8255, or via text at 838255.

You don't have to be teetering on the edge to contact them. Sometimes it just helps to talk to somebody who has been in a similar situation and gotten through it, you can get through it too, sometimes all it takes is talking about it. 

And if you do think you have PTSD, don't believe all the horror stories about the bad treatment at the VA and let that keep you from contacting them for help. There are a lot more success stories than bad ones.

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Colin's Condition - NIH Trials inpatient

Adding the experimental medication as well as the antiviral

Journal entry by Laura Benson — Jun 9, 2018

Colin has had a rough week.  Last weekend NIH gave Colin water pills to remove fluid around his heart.  He lost a lot of water and became severely dehydrated.  This took his very high blood pressure and brought it far too low.  Since he already has kidney injury from last year at the onset of his condition, this only made matters worse.  So the team of doctors spent the entire week getting his kidneys functioning and his blood pressure balanced with IV Fluids and medications (although blood pressure is slightly stable, it is still high).  Only then were they willing to finally let him take his experimental medication:  Tofacitinib.

He took his first dose of Tofacitinib on Thursday.  He had to wait ten days!!
Doctors continue to monitor his creatinine levels and also are attempting to taper his cyclosporine dose, slightly.  (Cyclosporine is known for causing high blood pressure and kidney problems.  Colin has been on it for over 12 months).   
He is now taking Tofacitinib twice a day.

Today the doctors introduced Ganciclovir, an antiviral. It is used to treat infections caused by viruses.  
Colin has a reactivation of HHV6, which is something we all had when we were babies.  There are known medical studies following patients that have a reactivation of HHV6 with drug hypersensitivity (DIHS).  Colin has been tested for HHV6 many times this last year.  Occasionally it shows up in blood tests, but has not been consistent.  So, the NIH doctors would like to treat it while he is being closely monitored.  He continues to donate his blood for testing that is used in this type of research.  

All of the medicine that Colin has been taking for the past year are immune suppressants (Prednisone, Cyclosporine and CellCept and now Tofacitinib). All of the strong medications that he takes to attempt to control his flairs and relapses have a lot of side effects that are very concerning.  And if you've been following him - you know that he has had many break through flairs and relapses, which is disheartening.  As you can imagine, he is getting weak and tired from fighting whatever "this" is.  And as many of you have experienced yourselves, all of the medicine that Colin takes causes side effects that also must be treated. 

Thank you all for your prayers because we know God is listening. 

We have had the best doctors examine and treat Colin.  Walter Reed, John's Hopkins Center, Washington Hospital Center, Mayo Clinic and NIH and many others have been consulted from various other hospitals.  They genuinely care and are working hard at learning more about Colin's condition and why his own immune system won't kick in and fight for him.  

Colin's Condition - June 1, 2017

June 1st

Journal entry by Colin and Laura Benson — Jun 1, 2017

Colin started the day with more energy and a very positive attitude!
Last nights IVIG took over 7 1/2 hours!

He had a busy day-all day long, non stop.
Doctors, physical therapy, more ointment and wrapping him up like a mummy and a loud annoying roommate as well as his last round of IVIg tonight. 

We got a call about coordinating housing for him after he is discharged, but that won't be for at least another week to ten days. I will share that when we have worked out the details. (Housing him in the Wounded Warrior Barracks at Walter Reed National Medical Military center).

The doctors shared their conference feedback. 

Many doctors reviewed Colin's case and the feedback is:
The bad news is they still don't know what is wrong with him!!!

According to his doctor today: The good news is that they know many things that are not wrong with him. (She said that to make light of all of the many hundreds of tests and labs he has had the past two months!)

They seriously don't know what else to do other than "wait and see" and respond to his flair ups when he cycles and treat him symptomatically. 

He may have a case of prolonged DRESS with overlapping TEN. 

I hate leaving Colin at the hospital at night. I stayed most nights with him at Walter Reed 
While he is undergoing this treatment he needs to be resting. Meanwhile his roommate gets hauled away for his behavior and another one moved in and is immediately put in restraints. He is definitely in an urban hospital. 

I pray he is safe and stays strong and positive despite his circumstances and his environment. 

My parents drove all the way from Florida to Washington DC today and arrived around 1900. I will post a photo of them below. They were so glad to see Colin with their own eyes. 

And for me - it was so wonderful to hug my parents!

Colin's Condition - NIH Medical Trials

NIH Medical Trials

Journal entry by Laura Benson — May 28, 2018

Thank you for following Colin's story.  
We are writing this post the evening prior to admitting him into the hospital just a short distance across the street (writing this from Walter Reed) to the National Institutes of Health (NIH). 

Colin has been a Research Patient at NIH for many months.  NIH doctors have discovered many interesting remarkable things about Colin; how his body responds to chronic inflammation and what possible medication may be available to help control or stop his relapses.  We first brought Colin to NIH last November 2017 when he was viewed at Grand Rounds (over 70+ doctors examined Colin).  One of the Dermatologists at NIH viewed him and wanted to place Colin into a research study on DRESS/DIHS syndrome.

DRESS/DIHS syndrome should only last 2-8 weeks.  So, why has Colin been severely ill and in pain and unable to pull out of "this" for 14 months?!  The doctors don't all agree on the diagnosis.  After all, this is a diagnosis of exclusion (which means that doctors only know what he doesn't have.  They continue to test his blood and skin often to look for any answers to come up.  He has been tested for so many conditions and nothing makes sense). Some even suggest he may have a rare autoimmune disease. 

If you have been reading his updates, you will know that we have taken him to Mayo Clinic in Rochester, Minnesota (twice) for Second Opinions from several doctors.  Mayo helped discover one of Colin's gene mutations, which help doctors and pharmacists identify how he metabolizes medications and which to avoid.  Additionally, Colin also continues to have a severe skin flares and reactivation of a specific virus (HHV6) that comes and goes.  It is picked up in certain blood tests.  Not enough information is available on DIHS/DRESS Syndrome is available yet. However, the condition he suffers from doesn't only affect skin, but also affects organs.  All doctors are very concerned not only for damage to his organs from his condition, but also from the side effects of taking high doses of steroids and immune suppression medicines.  
We have been cautioned and warned for over a year about his immune system and he has been very lucky; however, they are going to begin an experimental medication on Colin at NIH...Before he agreed to do this...

Colin was granted convalescent leave to visit Florida where we celebrated some very important family milestones.  Colin's father (Randy) is also here helping manage Colin's care with me (Laura).  I was able to attend a caregivers retreat with Semper Fi Fund in San Antonio, TX and our daughters (Alexandra and Cassandra) drove up from Florida with our puppies (Wesley and Buttercup) to spend a week with Colin visiting before his admission back into the hospital.

Colin was able to participate in Walter Reed "field trips" to Rolling Thunder and later that day a tour of The US Capitol and front row seats to the National Memorial Day Capitol Concert.  It was an emotional day reflecting on our military's heroes and their sacrifice to our country and our freedom.

We were so grateful to have these moments, because now things are going to get more intense and many more prayers are going to be sent.  And we are asking for your prayers as well, please.  

NIH, Mayo and Walter Reed are all working together to help him.  His condition is very complicated, and he is very Atypical. So far Colin has only been a research patient, until now he will be an actual patient and admitted into the hospital at NIH.  The reason for his admission is so that doctors at NIH will have a controlled environment to protect him from opportunistic severe infections.  This is a real threat and one that the doctors are not taking lightly.  Colin basically has no immune system and even a cold could harm him significantly. 

NIH discovered that Colin has a mutated JAK/STAT pathway.  NIH and Pfizer discovered a medication "Tofacitinib" which has a generic name Xeljanz that is used primarily on Rheumatoid Arthritis, which targets the JAK/STAT pathway. It has never been used on someone with Colin's condition before.  So he is Patient #1 in the research on the uses of this medication. If you Google Xeljanz you will see a black box warning.  

Here is the link: https://www.xeljanz.com/ 

The plan for now is for Randy and I to stay in Colin's room on base at Walter Reed National Military Medical Center.  Thankfully we can easily walk across the Navy base and cross the street to visit Colin while he is at NIH for the next 1-2 weeks.  The hospital will give us permission to visit him and he may even receive a "Day Pass" to take short breaks away from NIH to attend his normally scheduled doctor appointments at Walter Reed.  Keep in mind that NIH is NOT a normal/typical hospital.  It is a research facility with a hospital for their research patients.  (Very different than what most people would imagine).

We will continue to update you on his condition and thank you in advance for your prayers.