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.
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.
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