1st May 2000 - Back to EB and EBparents by Kim LutyHello...I've lived with EBDMS for nearly 30 years (YIKES!) and here's my 2 cents as a patient... 1) Infection - PublicAlways a battle, but particularly difficult for the first 5 years. 2) Nutrition - Iron / Salts / Hydration?Careful balance between making sure you get enough protein and vitamins... but be careful, because once the 20's hit you do start hanging on to those pounds! 3) Skin mgt/tech - Prick, slice or snip?Snip away dead skin - let the body lead you in what needs to stay or go. Also slitting the blisters (as opposed to just poking with a needle) is better because it allows the fluid to get out of the blisters and not immediately reseal. 4) DigestionAcid reflux is common with EB patients...fortunately, there are many drugs available to now help with this. Lactose intolerance isn't uncommon either, however, most can handle cheese, yogurt, etc. 5) Physio/MotorAgain, tough balance between keeping the body mobile and not inducing more blisters. Do your best to make sure that your child will be able to stand and walk some, but if his or her feet are just too blistered, remember that is what assistive devices, such as wheelchairs, are for. //Kim |