Sunday, July 24, 2011
A Milestone
Well we have hit a huge milestone this year. Lucas has graduated preschool! He is all set to start Kindergarten in the fall. This is very exciting as we were not sure that he would even be able to go to school. I will update more again soon. I hope to hear more good news when Lucas and his brother and sister get home from their vacation with my parents and sister. He has been doing really well this summer so far.
Monday, February 7, 2011
Medication Change yet again
Well as of Lucas' last specialist appointment we are changing up his medications again. He will still be taking Enbrel once every 5 days and the Motrin 2-3 times a day, but now we are adding a prophylactic antibiotic, amoxicillin. He will have to take this twice a day everyday and we are hoping that this will help with all the infections he has been getting as he seems to get a pretty back one about once a month right now. So now we are just hoping this works.
Tuesday, January 4, 2011
What was said
Here is what I said with the presentation.
Introduction- Slide 1
Hello, my name is Ellen Dreier and thank you for having me here today. I am here to speak about a disease that had largely affected both my life and that of my family. Tumor Necrosis Factor Receptor Associated Periodic Syndrome is a rare genetic disease that I have had to deal with sense the age of 10 when I started to have symptoms. That was originally diagnosed as JRA. 15 years later, after my son Lucas became very ill. I found out that what I have, what he has is actually something very different; TRAPS. Throughout this presentation I will attempt to explain this disease and just how it has affected me and my growing family.
Slide 2-
So many of you are probably asking the same question I did when I heard this diagnosis. What exactly is TRAPS? Let me tell you, I found out the answer to this question is not so easy to answer. I have spent many hours and sleepless nights to come up with the few answers I do have. So now I have made it my personal mission to help others learn about this disease, reach out to others in the same situation, and to help other find the answers they are looking for. Tumor Necrosis Factor Receptor Associated Periodic Syndrome or TRAPS as it is commonly referred to is a genetic defect that is located in Chromosome 21. This mutation creates a defect in a protein known as Tumor Necrosis Factor Receptor (TNFR). This protein is one that causes inflammation in the body.
There are many different symptoms that can be caused by TRAPS. These range from rashes to joint and muscle pain. All of these symptoms come and go, and in many cases it is not the same every time. One week a person can have a rash and the next week it could be done, and then the following week if could be a series of fevers. This is a very unpredictable disease to live with. Most of these symptoms are considered viral or bacterial infections and are treated as such. Thus it makes this disease extremely hard to diagnose.
Introduction- Slide 1
Hello, my name is Ellen Dreier and thank you for having me here today. I am here to speak about a disease that had largely affected both my life and that of my family. Tumor Necrosis Factor Receptor Associated Periodic Syndrome is a rare genetic disease that I have had to deal with sense the age of 10 when I started to have symptoms. That was originally diagnosed as JRA. 15 years later, after my son Lucas became very ill. I found out that what I have, what he has is actually something very different; TRAPS. Throughout this presentation I will attempt to explain this disease and just how it has affected me and my growing family.
Slide 2-
So many of you are probably asking the same question I did when I heard this diagnosis. What exactly is TRAPS? Let me tell you, I found out the answer to this question is not so easy to answer. I have spent many hours and sleepless nights to come up with the few answers I do have. So now I have made it my personal mission to help others learn about this disease, reach out to others in the same situation, and to help other find the answers they are looking for. Tumor Necrosis Factor Receptor Associated Periodic Syndrome or TRAPS as it is commonly referred to is a genetic defect that is located in Chromosome 21. This mutation creates a defect in a protein known as Tumor Necrosis Factor Receptor (TNFR). This protein is one that causes inflammation in the body.
There are many different symptoms that can be caused by TRAPS. These range from rashes to joint and muscle pain. All of these symptoms come and go, and in many cases it is not the same every time. One week a person can have a rash and the next week it could be done, and then the following week if could be a series of fevers. This is a very unpredictable disease to live with. Most of these symptoms are considered viral or bacterial infections and are treated as such. Thus it makes this disease extremely hard to diagnose.
The Presentation
This is the persentation that I did at Ridgeview Medical Center. I will add the speaker notes in the next post.
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