Working with a Registered Dietitian

Once a diagnosis of Congenital Sucrase-Isomaltase Deficiency (CSID) has been made, it is important for you to work with a registered dietitian to review dietary restrictions and to develop an understanding of food content, food nutrition labels, and ingredients. Finding foods that are appropriate for you may be difficult and time-consuming. Many of you find the process of starting on a CSID-friendly diet overwhelming at first. Consulting a registered dietitian assists in making this process easier.

Registered dietitians are experts in food and nutrition who have met both academic and professional requirements. Registered dietitians can be extremely helpful if you have CSID. Most registered dietitians have not worked with many individuals with CSID specifically, but they can advise you on basic nutritional requirements. Understanding your or your child’s nutritional needs is of vital importance. A registered dietitian can assist you in determining nutritional needs, learning how to read food nutrition labels, developing a diet plan, and learning how to maintain dietary compliance.

Registered dietitians work in a variety of settings, including hospitals, public health departments, and community health settings. Your gastroenterologist may have a registered dietitian on staff. If not, the gastroenterologist should be able to refer you to a local registered dietitian. Alternately, you can find a registered dietitian on the website of the Academy of Nutrition and Dietetics, www.eatright.org/.

Often, your insurance covers the cost of a registered dietitian consultation, or your child could qualify for nutritional services through a state-sponsored program. It may be beneficial to perform an internet search for “healthcare for children with special needs” and add your state name to the search terms. For example, a Google search for “healthcare for children with special needs Michigan” yields many results. Also, some young children with CSID may qualify for medical nutritional therapy as part of their state’s early intervention services.

IMPORTANT SAFETY INFORMATION FOR SUCRAID^® (SACROSIDASE) ORAL SOLUTION

Sucraid^® may cause a serious allergic reaction. If you notice any swelling or have difficulty breathing, get emergency help right away.
Tell your doctor if you are allergic to, have ever had a reaction to, or have ever had difficulty taking yeast, yeast products, papain, or glycerin (glycerol).
Sucraid^® does not break down some sugars that come from the digestion of starch. You may need to restrict the amount of starch in your diet. Your doctor will tell you if you should restrict starch in your diet.
Tell your doctor if you have diabetes, as your blood glucose levels may change if you begin taking Sucraid^®. Your doctor will tell you if your diet or diabetes medicines need to be changed.
Some patients treated with Sucraid^® may have worse abdominal pain, vomiting, nausea, or diarrhea. Constipation, difficulty sleeping, headache, nervousness, and dehydration have also occurred in patients treated with Sucraid^®. Check with your doctor if you notice these or other side effects.
Sucraid^® has not been tested to see if it works in patients with secondary (acquired) sucrase deficiency.
NEVER HEAT SUCRAID OR PUT IT IN WARM OR HOT BEVERAGES OR INFANT FORMULA. Do not mix Sucraid^® with fruit juice or take it with fruit juice. Take Sucraid® as prescribed by your doctor. Normally, half of the dose of Sucraid^® is taken before a meal or snack and the other half is taken during the meal or snack.
Sucraid^® should be refrigerated at 36°F-46°F (2°C-8°C) and should be protected from heat and light.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

INDICATION

Sucraid^® (sacrosidase) Oral Solution is an enzyme replacement therapy for the treatment of genetically determined sucrase deficiency, which is part of congenital sucrase-isomaltase deficiency (CSID).

Important Safety Information for Sucraid^® (sacrosidase) Oral Solution

Sucraid^® may cause a serious allergic reaction. If you notice any swelling or have difficulty breathing, get emergency help right away.
Tell your doctor if you are allergic to, have ever had a reaction to, or have ever had difficulty taking yeast, yeast products, papain, or glycerin (glycerol).
Sucraid^® does not break down some sugars that come from the digestion of starch. You may need to restrict the amount of starch in your diet. Your doctor will tell you if you should restrict starch in your diet.
Tell your doctor if you have diabetes, as your blood glucose levels may change if you begin taking Sucraid^®. Your doctor will tell you if your diet or diabetes medicines need to be changed.
Some patients treated with Sucraid^® may have worse abdominal pain, vomiting, nausea, or diarrhea. Constipation, difficulty sleeping, headache, nervousness, and dehydration have also occurred in patients treated with Sucraid^®. Check with your doctor if you notice these or other side effects.
Sucraid^® has not been tested to see if it works in patients with secondary (acquired) sucrase deficiency.
NEVER HEAT SUCRAID OR PUT IT IN WARM OR HOT BEVERAGES OR INFANT FORMULA. Do not mix Sucraid^® with fruit juice or take it with fruit juice. Take Sucraid® as prescribed by your doctor. Normally, half of the dose of Sucraid^® is taken before a meal or snack and the other half is taken during the meal or snack.
Sucraid^® should be refrigerated at 36°F-46°F (2°C-8°C) and should be protected from heat and light.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Indication

Sucraid^® (sacrosidase) Oral Solution is an enzyme replacement therapy for the treatment of genetically determined sucrase deficiency, which is part of Congenital Sucrase-Isomaltase Deficiency (CSID).