Making the Family a Team

There are many ways to engage the family and ensure everyone is a team member in sharing wellness, health, and mutual responsibility for one another. A disease or disorder does not define any individual person. Everyone in the family unit matters equally, and time should be spent accordingly. During critical episodes, adjustments should be made for a medical crisis at hand, but returning to normal, family day-to-day interaction and taking the focus off of CSID is important for keeping a family unified.

As parents or caregivers, you should maintain a date night or scheduled intentional time together. If you’re single, you should spend time in activities you find enjoyable and rejuvenating. Families should attend gatherings, events, or parties. Planning ahead and taking alternate foods eliminates the feeling of being different, whether as an individual or as a family. The most successful families are those that move beyond seeing CSID as an intrusion and work together as a team to face the new realities of managing a chronic condition. Build on your family’s strengths to cope with this new stress.

Finding new ways to spend time together that are not food-centric can teach everyone that life is more about time spent with people. Fun events or holidays have more to do with the people present than the foods associated with them. Families can come up with many things they enjoy doing together without the central focus being food. Families can also initiate new food traditions with CSID-appropriate food items.

Some of you find it difficult to discipline a child with CSID, often because you feel sadness for the child’s situation. Ultimately, children need clear boundaries and benefit from consistent expectations. Without appropriate limits, children can become overly dependent, have low self-esteem, and eventually develop behavioral or social problems. A child with CSID should abide by the same family rules as other children in the home. By enforcing standards of behavior for a child with CSID, you are sending the message that you trust your child to handle CSID well.

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).