To all the members of the Community & those who have posted... Thank You! My sister Shannon was diagnosed with SCLS 5 years ago, and last night YOU have helped to save her life. Shannon is on a maintenance plan of theophylline and terbutaline, using steroids as a booster when she is under the weather; and for a year, this has kept her from having a full-blown episode. This past week, she had been suffering flu-like symptoms, without the retention of water, which was in its self, unusual (a "normal"? illness). Unfortunately, things began to turn fast... and she went to the ER. Shannon’s regular doctor was out of town, and the ER doctor was unfortunately under-educated in this area. He began a "normal" course of treatment to combat the dehydration she was having; and while he was not dismissive of our families concerns and advise... we are not doctors...; she was admitted into Cardiac Care... I had previously read many of the posts here; (finding the information on steroid use)... but, as I was waiting for things to go from bad to worse I found the posts regarding Emergency Room information. I printed out the "Disorder Details" as well as the information from the Mayo Clinic... and presented those to the doctor. He immediately cut back the IV for rehydration, started steroids & ran the tests that are suggested... albumin was started early this morning. AND as of this time, they are moving her out of Cardiac Care! She is stable, and has good fluid output. We are still facing a few more days in the hospital to be sure... but ... it looks like the crisis is over with no major complications. THANK YOU! Thank you for being here... thank you for posting. As Shannon recuperates, I will have her post with her history & more information. Please know how grateful we all are. Tamara

Shannon is lucky to have a pro-active sister like you, and I'm glad you and her doctors benefited from the lessons we've been learning.

Tamara We are all glad that Shannon came through. These "episodes" can be very deadly. Arturo wrote, a while back, that we should always carry our papers about CLS with us at all times. Put them in the cars, office,etc. You probably saved her life by presenting the papers to the Doctor. ER Doctors, too frequently, go on with their "normal" protocol, which CLS does not work well with. Even though I have been episode free for 11 months, I keep the paper work near me, just in case. So thank "you" for reading CLS entries for someone other than yourself. Walt

So happy she is ok and has you as her advocate. My brother Allen has scls attacks rarely but they can be severe. He has copies of those documents everywhere and it really does make a difference as long as you insist the doctor read it. you accomplished that and therefore the correct treatmebt was given so you deserve a pat on the back! This site is an invaluable resource and thank you to arturo for keeping things in such great order as well as everyone who contributes. Best wishes for a speedy recovery to her! Linda

Well, good news for the weekend! Shannon is home from the hospital; thankfully, the Doctors were able to work together and control the episode. Yesterdays tests show that her liver functions are good, her albumin is holding around 3.0 (lot's of protein added to the diet), She is taking 80 mg lasix to help reduce the water retention & added potassium & magnesium to counter the water loss. She has elbows again ... and indication of knees; if the past is an indicator, we have about a week at home resting before she will be up and around again. Thank you again for your support! Tamara