Brenda was admitted last night with leg pain edema and infiltrated fluid in lungs. It all stared like flu like symptoms. I will update you again in a few days I pray that this is not like her last attack in august.

wishing the best for her

I hope all goes well for her. That is the way my last attack started. We caught it soon enough that I was only in ICU for3 days

Brenda has an infection called kleibsella has any one had this. Please let me know she is also in alote of pain and they don't want to give her IV meds.

Brenda is having an attack she has gained 18 pounds in less than a week what can I do all this doctors seem to be cluless.

SOMEONE NEEDS TO GET IN TOUCH WITH DR. GREIPP AT THE MAYO CLINIC. YOU OR THE DOCTORS CARING FOR BRENDA.

We found that printing off the information from this site from the Mayo clinic invaluable (Disorder Resources). Ambulance through to all medical staff took it extremely seriously and the information interesting, it also helped them DO THE CORRECT THINGS. Hope this helps? Ruth (Christchurch New Zealand)

also on this website for SCLS under disorder details there is a fact sheet about SCLS including treatment and tests that we have printed and have given to doctors and my brother keeps a copy with him for ER and EMT personell...very thorogh and helpful but you must insist that they read it immediately prior to treatment or as soon as possible..I also would try to have the doctors call Dr Greipp at Mayo in Rochester, MN if they are confused. My prayers are with youl.

Thank yu for you help and prayers I will look the information up right now and keep you informed.

Wondering how Brenda is doing?

Better they were able to control the leaking and she has lost some weight. thank you I will keep you posted