Journal entry by Laura Benson — Jan 1, 2018
In November, while Colin was inpatient at Walter Reed, he was escorted to the National Institute of Health (NIH) for "Grand Rounds". There, he was viewed by over 75 doctors. One of those doctors, was Dr. Nagao who specialized in Dermatology and has an association with Japanese Dermatology Studies, who expressed an interest in Colin's condition. His specialty is skin immunology and immune-mediated diseases. At first, Colin was only going to be subjected to testing for medical and research purposes; however Dr. Nagao found his condition so interesting and similar to the Japanese studies that he asked to work with Colin on his ongoing condition alongside the teams of doctors at Walter Reed.
So the question is what is going on with Colin? Why does he still have DRESS syndrome - when most people only have this condition for 2-8 weeks? And what can we do to stop Colin from relapsing and cycling through phases of multiple skin conditions as well as dangerous systemic system responses?
We finally have some answers.
On Thursday December 14, 2018 our daughter Cassandra and I (Laura) took Colin to the NIH for his preliminary meeting and blood draw. We brought samples of medication with us for testing purposes; including the medication that is suspected to have triggered the initial inflammatory DRESS Syndrome response thus beginning his whole horrific ordeal.
We learned a lot from our first visit. Dr. Nagao was extremely intelligent and thorough. It is clear to us that he has experience with DRESS syndrome patients. Just like you, we also have so many questions and concerns. It appears that in rare cases (under very specific conditions) DRESS Syndrome can continuously flair for several years. Dr. Nagao mentioned one patient in Japan has had DRESS Syndrome for over three (3) years! When DRESS Syndrome has "fizzled" out and the inflammatory responses slow down the patients were left with an auto immune disease. And, there is NO cure.
This was not the news we had hoped for.
Several weeks later we received a phone call from Dr. Nagao with the results of Colin's blood draw. Although the probability of having t-cell lymphoma is extremely low, they have discovered that Colin has too many inflammatory t-cells and unusually low regulatory t-cells (t-regs). (Regulatory t-cells help manage inflammation). Sadly, there is no medical treatment for t-cell therapy to increase his t-regs.
This information was discovered by testing Colin's DNA and his genes. There is a specific gene that is affected and the root cause of this is most commonly found in Asian populations. Additionally, the triggered response from the offending drug (antibiotic reaction) was lower than expected - but "just enough" to cause this cascading event. When Colin's blood is stimulated with Bactrim MULTIPLE responses appear. In DRESS Syndrome patients only one (1) dermatological response is recorded. However, Colin has had 11 biopsies - all with DIFFERENT presentations. (TENs, SJS, Psoriasis, Urticaria, Necrotizing Fasciitis, Ichthyosis Vulgaris, Dermatomyositis, Eczema, etc.)
We always knew Colin is a unique individual, but this is quite unreal! The chances of this very small, unnoticeable, unpredictable anomaly in his DNA, combined with the prescription of a very common antibiotic created dangerous condition to his health.
So what happens next?
The NIH will test Colin's blood for hypersensitivity to polypharmacy. (Use of multiple medications)
During his visit to Orlando for convalescent leave he has flared twice. We have had to alter his medication and begin monitoring his vital signs even closer than before. If he is still presenting a rash when he returns to Walter Reed, he will have additional biopsies performed.
So the question is what is going on with Colin? Why does he still have DRESS syndrome - when most people only have this condition for 2-8 weeks? And what can we do to stop Colin from relapsing and cycling through phases of multiple skin conditions as well as dangerous systemic system responses?
We finally have some answers.
On Thursday December 14, 2018 our daughter Cassandra and I (Laura) took Colin to the NIH for his preliminary meeting and blood draw. We brought samples of medication with us for testing purposes; including the medication that is suspected to have triggered the initial inflammatory DRESS Syndrome response thus beginning his whole horrific ordeal.
We learned a lot from our first visit. Dr. Nagao was extremely intelligent and thorough. It is clear to us that he has experience with DRESS syndrome patients. Just like you, we also have so many questions and concerns. It appears that in rare cases (under very specific conditions) DRESS Syndrome can continuously flair for several years. Dr. Nagao mentioned one patient in Japan has had DRESS Syndrome for over three (3) years! When DRESS Syndrome has "fizzled" out and the inflammatory responses slow down the patients were left with an auto immune disease. And, there is NO cure.
This was not the news we had hoped for.
Several weeks later we received a phone call from Dr. Nagao with the results of Colin's blood draw. Although the probability of having t-cell lymphoma is extremely low, they have discovered that Colin has too many inflammatory t-cells and unusually low regulatory t-cells (t-regs). (Regulatory t-cells help manage inflammation). Sadly, there is no medical treatment for t-cell therapy to increase his t-regs.
This information was discovered by testing Colin's DNA and his genes. There is a specific gene that is affected and the root cause of this is most commonly found in Asian populations. Additionally, the triggered response from the offending drug (antibiotic reaction) was lower than expected - but "just enough" to cause this cascading event. When Colin's blood is stimulated with Bactrim MULTIPLE responses appear. In DRESS Syndrome patients only one (1) dermatological response is recorded. However, Colin has had 11 biopsies - all with DIFFERENT presentations. (TENs, SJS, Psoriasis, Urticaria, Necrotizing Fasciitis, Ichthyosis Vulgaris, Dermatomyositis, Eczema, etc.)
We always knew Colin is a unique individual, but this is quite unreal! The chances of this very small, unnoticeable, unpredictable anomaly in his DNA, combined with the prescription of a very common antibiotic created dangerous condition to his health.
So what happens next?
The NIH will test Colin's blood for hypersensitivity to polypharmacy. (Use of multiple medications)
During his visit to Orlando for convalescent leave he has flared twice. We have had to alter his medication and begin monitoring his vital signs even closer than before. If he is still presenting a rash when he returns to Walter Reed, he will have additional biopsies performed.
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