Sucrase Deficiency,info. for my 10 yr. old

[ddmum]

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!)
ddmum

[ddmum]

I know I have not been on here in ages!! (to say the least) I've just gotten my sons through a horrific divorce, though! I now, am in some serious need, of anyone who can offer any help, to my 13 yr. old son w/ CSID ?! He's having issues w/ the "side" illnesses, I guess they are....easily prone to viral & upper resppitiry infections, etc.....and also diagnosed w/ ADD, which I have read, is very common w/ those who have any enzyme deficiency.(??) Never knew that till now. I, too, am suspected of having CSID. (yrs. of being diagnosed incorrectly w/ stomach issues that were quite serious~I'm now 45! ) If you'd still possibly be on here~EVER...since it's been years, now, please let me know, if you would? I'd be very grateful! 13 in not an easy age for my son...and this illness adds to the challenges! ( Thank heaven for Sucraid.....he still takes it each day! Thank you, again for any help & hope to chat soon! ( my poor son has been ill all week, actually & so have I...it seems to last SO much longer for him. His little brother does not have CSID, but does have stomach issues, like IBS, they say. ( but I would still like him tested , some day soon...) Thanks for listening:) PEACE & GOOD HEALTH TO YOU ! (hope you're still out there!)

[MomToChloe]

I am in the same boat, my nine year old daughter was diagnosed at age 7 after years of misdiagnosis after misdiagnosis.  We have done diet modification but I never tried Sucraid because I didn't want her to become dependent on it as it is so expensive. Chloe has done fairly well with the diet, still has stomach aches but now she has been diagnosed with 4 positive antibodies leading her toward type one diabetes.  Have you had your son tested for this, I am wondering if this is a fluke or if there are some links here.  There is such little research about this and I am curious about how your son has done this year since your post.  Do you have any new info, sites, support groups?  For two years I feel like we have been all alone in all of this.

[spacegirlley]

Hi ddmum, I don't know if your still interested given the age of your post, but I was born with sucrose intolerance and have lived with it for 27 years now. Would love to chat to you and share experiences, there is so little information out there.