I am writing this blog to show patients and families of adult patients with urea cycle disorders that life can be fun even when coping with a UCD on a daily basis.
All posts on this blog that inlcude information about my medical care/treatment of Ornithine Transcarbamylase Deficiency (OTC) are for personal documentation and in now way are to be taken as "medical advice".
All management plans are customized to each patient's needs/disorder and my information is exclusive to my specific needs and are overseen carefully by my team at Strong Memorial Hospital in Rochester, NY.
If you have any questions about anything you read here, in regards to UCD's, please feel free to take what you have read directly to your own team.
Remember, I am just a patient, not a doctor. I would LOVE to talk to anyone about "everyday living" with Urea Cycle Disorders and would be happy to answer any questions...anytime at all.
Amy & J.J.
Happiness is possible even while living with a UCD
I have had a mom of a UCD Mom ask me how to handle giving her son freedom as he grows up and will eventually want to be out on his one.
First of all, please make sure your teenager/young adult has a medical id bracelet and learns to wear it regularly. I buy mine from www.laurenshope.com because they have a great selection of styles for both sexes. Also my mother and I are amateur beaders so we are planning on buying extra plates with the medical info and incorporating them into bracelets we have designed and made. The doctor that the patients sees for their UCD can help you figure out exactly what wording you should use.
Second, make sure the patient has an emergency letter and a copy of the protocol for drawing a blood ammonia properly. Cindy LeMons at the NUCDF can send you the protocol for the drawing the blood ammonia if you do not have it or I have it and I can send it to you.
Third, in this day and age make sure the patient has a cell phone and has the parents phone numbers listed as ICE numbers. ICE stands for In Case of Emergency so if something happens when you are not around someone can grab their phone and easily figure out who to call.
Fourth, make sure that any teachers, camp counselors, and/or friend's parents know at least the basics about the patient's UCD. Basically, anybody who could be watching your child overnight if they go on a sleepover, overnight field trip and/or sleepaway camp should be aware of your child's disorder.
Remember, even though we have these disorders these patients just want to be as close to a normal teenager as possible. FYI, I went to sleepaway camp 5 years in a row and I went on a Marine Biology Field Trip to the Bahamas in my junior year of high school. No incidents even though it was fun trying to get through customs with a bag of loose white powder, my Citrulline. I lived at home for my first two years of college but I went to a SUNY school 2 hrs. from home to get my Bachelors and I only had one hyperammonemic episode while away at college.
I know the severity of this disorder is different for everyone so don't take this blog as gospel but this is my point of view.
So it is official...I have picked a date to participate in the MRI Imaging Study at Georgetown University.
Sunday May 14th will be spent participating in this study.
Hopefully I will stay healthy because last time I traveled to DC to participate I got bronchitis and was coughing so bad I could not participate because I would not have been able to lay still in the MRI machine.
Have any of my fellow UCD patients participated in this study? Trying to figure out what to expect.
Remember that all of the research being backed by the National Urea Cycle Disorders Foundation is important and the more patients who participate the more likely we are to get results we can use and continue to hold onto our funding.