Caregivers and Parents of Children with CSID

When working with schools, family, or anyone who may be charged with the responsibility of your child’s care, it’s important to proactively provide them with basic information about Congenital Sucrase-Isomaltase Deficiency (CSID). Careful consideration should be given to the educational process you implement. Keep it positive, keep it simple, and be gracious but clear about needs and expectations.

Many adults want to offer treats to children. You must educate those who interact with your child about how those treats can result in unintentional negative outcomes. When explaining the nuances of your individual case to extended family or caregivers, using common phrases such as, “Yes, even one cookie can hurt,” can help break down the complexity of the disease to a more commonly understood level.

Parents, caregivers, and siblings go through a learning period during which they come to fully understand the physiological ramifications of CSID and what cheating on the diet by eating too much sucrose or starch can mean. Other people in your child’s life also need to take time to learn. The same vigilance is necessary on your part to teach those who are around the child.

CSID is a chronic, congenital condition that will not go away with gradual exposure to sucrose in the diet or with time. You should not assume that people around you will instantly understand. Appreciate it when they do gain understanding or have empathy, but you should not expect it.

Consider the time it took you to become the parental expert and the time it took your child to understand the diet, and realize that those people around your child may not be able to have the same time commitment. Most adults do not intend to harm your child, but expecting them to fully understand life with CSID is probably unrealistic. Your job is to educate those who are involved in your child’s care so that they can understand the situation to the best of their ability.

It may be necessary to use a safe-foods list or a foods-to-avoid list customized to the individual needs of your child. Such lists should be developed in cooperation with a physician or registered dietitian.

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).