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prima2007 Message
24 May 2019, 06:24 AM

Our son was diagnosed in 2010 at the age of three after episodes with no diagnosis.  It was finally Dr. Anne Junker in Vancouver Canada that diagnosed him with SCLS.  He had another significant episode which nearly took his life, nearly full organ failure and we were told by doctors to prepare for the worst.  They needed to give him an immense amount of fluid to save his life but in turn put his life at risk again as this caused compartmental syndrome in his arms and legs.  He was rushed into emergency surgery and orthopedic surgeons performed fasciotomys all 10" in length, 2 on each leg and one on each arm, drains were put in, he was on a ventilator and remained in ICU for 2 weeks.  My wife and I didn't leave his bedside for a single moment, we were terrified but reassured he was strong and fighting for every breath.  He had a number of blood transfusions while in ICU but then quite quickly started to turn the corner.  He was moved to a ward and his recovery and rehabilitation began. He needed to learn to walk again due to the surgery's performed and he was immediately put on regular 6 week IVIG treatments which remained in place for 6 years.  We have just celebrated 3 years in March and his last IVIG treatment and he is doing exceptionally well.  We of course monitor for swelling and other symptoms as a common cold or flu has been whats been most dangerous for him.  We are extremely hopeful for the future, hes now almost 12 and is your typical rambunctious and somewhat "challenging" pre teen!  If you are in a similar situation as us or have just received a diagnosis or are in the middle of some difficult times...please don't give up...keep fighting, engage your doctors, your health authority anyone that will listen and give you more of a voice.  As we know there is no cure...YET!  But we are learning more every day on how to cope and manage and move forward as best we can.  Please reach out if you have questions, comments, concerns and we will do whatever we can to help to share our experience and make this journey a little less scary and lonely.  We are a strong community fighting for the ones we love.

prima2007 Message
24 May 2019, 06:38 AM

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aporzeca Message
24 May 2019, 04:18 PM

Thank you for your encouraging update on Noah!