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please help us
by rachelorch, Mar 17, 2006 12:00AM
i posted a question a while ago november i think regarding my daughters glycagen storage disease since then she has had nothing but problems with this her bm is regularly between 2.1 and 3.8mmols ocasionaly it has been in the elevens aswell i am increasingly concerned about this also her gastostremy has a perminent infection she is now on another 2 sets of antibiotics and showing no sign of improvement i am now thinking allsorts google searching keeps cuming up with mrsa and other nasty things does anyone have any sudgestions at all please help us thank you
Doctor's Answer
by JDRF-Team-LRS, Mar 17, 2006 12:00AM
I think I remember your post last year, and I'm sorry that your daughter is still struggling to enjoy good health.
I'm not sure if we provided you this link, but if not, perhaps the folks at the Association for Glycogen Storage Disease can offer good help: http://www.agsdus.org/ While I don't know anything about this group from personal experience, their website suggests that are committed to support of patients & families and that they have professional medical input to help them. This model is important, since we patients are never as well-informed as those in the forefront of medical research & practice.
Perhaps others with experience with GSD in children will read here & post other helpful information. This all seems to be very difficult to manage, and I wish you well.
I'm not sure if we provided you this link, but if not, perhaps the folks at the Association for Glycogen Storage Disease can offer good help: http://www.agsdus.org/ While I don't know anything about this group from personal experience, their website suggests that are committed to support of patients & families and that they have professional medical input to help them. This model is important, since we patients are never as well-informed as those in the forefront of medical research & practice.
Perhaps others with experience with GSD in children will read here & post other helpful information. This all seems to be very difficult to manage, and I wish you well.
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http://www.diabetes.org.uk/infocentre/inform/conversions.htm
Labs also have different target ranges related to their particular equipment, so you need to compare your child's numbers with your lab's normal numbers.
Good luck to you in your quest --