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kelliregino Message
29 Jun 2009, 09:53 PM

my one year old was born with csid and has never slept all nite and wakes very uncomfortable like is this normal? Any one know how to help her be a normal happy one yr old she always seems like she is hurting she eats only meats and veggies and is still on a speacial formula and takes sucraid
smurf Message
25 Aug 2009, 10:27 PM

I was also born with CSID and my mother spent years with trial and error on diet. I am now 38 years old and manage my condition with diet only. You mention that your daughter only eats meat and veggies? *Are you aware that some veggies can cause problems?* I saw a very helpful dietitian in my early teens and she eliminated all sucrose, sugar and starch from my diet and then gradually built them back up until we found the amount of each that I could tolerate. I have kept all the information and will gladly provide you with a breakdown of what foods contain sucrose and starch and how much in each food. I have tried in vain for many years to update my very helpful information but to no avail. I can now eat everything (except rice) in moderation.
debkamme Message
26 Aug 2009, 04:08 AM

I am also an adult with this and I too would be concerned about the starch that may be in the formula. SMURF-WOW you are the closet one to my age that I have ever run across with this disease. I am 40 so I have yet to meet anyone older than me. It sure was tough growing up in the 70" and 80's with this disease. At what age were you diagnosed. Do you use sucraid now. I would not be without it. I would be very interested in the information that you had gotten from when you were younger if you are willing to share. My e-mail is Are you from the US. If so what state? Deb
Mamapuzzler5 Message
17 Feb 2010, 02:44 PM

Hi my little one would scream thru the night as well . Solutions to help were simethicone gas drops ( like mylicom), tummy on moms tummy skin to skin contact and the right diet combo for her. Formula is a problem so you have to find right one without starch and sugar (and without lactose if that is an issue. Yahoo has a csid group were some moms have tried diff formulas you could ask about. Veggies have starch and sugar too you may need to monitor those. A great website that helps with starch and sucrose content in foods is . I lived by it until I found out what kind of foods and how much she could tolerate (it started out as only foods containing less than 2gr of sucrose per100grms of food,and less than 10grms of starch total in a day. She is now 8 and thriving and sleeping. She can eat a whole lot more foods that she never could before --even to pizza and pasta now and again
kelliregino Message
1 Mar 2010, 04:27 PM

Well we are now going to be two in a month and still waking up screaming in the nite she will soon start a feeding program that will help her eat more and learn what to do in place of formula we are still learning what she can and can't handle I do know startch is a big problem for her and very lil sugar like 7 or less grams a day