I have a 10 yr. old son with CSID.(congenital sucrase/isomaltase deficiency) He was diagnosed at about 14 months old. He is on Sucraid and has been for several years....a life-saver! Blessings to Dr. William Treem for that discovery! (our hero... along with the gastro. specialist that diagnosed him, that is!) The only nightmare, is the way you must order it, now...and the cost!!! Yikes! Talk about STRESS!
My son,D,still has stomach aches, almost daily. He can digest starch, but not tons. Unfortunately, the foods he loves are,starch & more starch! The sucrose is the thing he has 0 tollerance for. His diet is VERY limited, due to what he likes & the fact that he has been terrified for years, now, to TRY foods! (some say a therapist would help for the "food fear!") I am thinking it's good idea. Does anyone out there have experience with an older child with this disorder? (school has been a real joy...depending on the nurse each year.) Anyone out there,with diet info at this age (or any age even close) or school lunch experience..etc? I am MORE than happy to help ANYONE new to this!!! I remember VERY WELL, how I felt at first! Nobody has heard of CSID, it seems.
The "parents support group" website (was in someone elses answer, here, not long ago) was all we had! Thankyou to MARY, for starting that! This has been a looooong journey, but it does get better....really! (just different:)
Thanks a bunch to anyone with ANY advice!! (or any questions, if I can help!)