Prescribing Information Important Safety Information
Life with CSID

Siblings

Siblings

Negative Emotions

Siblings of a child diagnosed with CSID may experience negative emotions. As a parent or caregiver, you must be prepared to address them. Some of the emotions siblings may experience are listed below.

Feeling left out or jealous

You may inevitably focus your energies on the child with CSID while other children in the home have to deal with you being less available, both emotionally and practically. This is especially true at the time of diagnosis, because a CSID diet can be difficult to figure out and incorporate into the rest of the family’s routine.

Resentment or bitterness

Siblings may sense that there is a “special” relationship between you and the child with CSID because of the time spent focusing on the CSID diet and routine. Make extra efforts to spend quality time with all children in the household on a regular basis. Be sure to send the message that a diagnosis of CSID does not put one child above or below the others. For siblings not affected by CSID, try to engage in activities that are meaningful to that child, whether it’s reading a book together, playing sports together, or going out for a treat.

A sense of guilt, thinking, “Why him and not me?”

Siblings may also feel guilty if they ever have bad feelings toward the child with CSID. Allow the sibling to talk through these emotions and offer emotional support.

Anger at the situation, thinking, “Why us? Why our family? It is not fair.”

Reassure siblings that these thoughts are normal and help them deal with them effectively. Help the sibling feel anger about the disorder, not the brother or sister with the disorder.

Embarrassment when others notice the different diet and symptoms of the child affected by CSID

A child with CSID eats differently than other children and may bring unwanted attention to the family. Other children may tease a child with CSID, which could bring embarrassment to the non-CSID sibling. Help the sibling learn how to effectively deal with this embarrassment. Counseling or support groups for families dealing with chronic disorders are available in some areas.

Easing Negative Emotions

To ease or forestall some of these negative emotions, allow siblings to take turns making typical family choices, such as selecting TV programs to watch or what the family may do for an outing. Additionally, a sibling who does not have CSID should not be required to adhere to a restricted diet themselves. However, it can be beneficial to create at least one family meal with as much common ground as possible, so the child with CSID feels included at family mealtimes. Maintaining a sense of fairness and understanding engages all the children to support one another. Accepting human differences and limitations while celebrating strengths with compassion is a life lesson for all.

Positive Aspects

There are positive aspects of having a family member with a chronic condition. Non-CSID siblings have ample opportunities to develop increased empathy, adaptability, responsibility, and problem-solving skills. Making your children aware of the desirable traits they are attaining is encouraged. Involve the CSID child and affected siblings in creating family goals and reassessing them periodically. The goal should be for CSID to bring the family closer together, not tear the family apart.

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IMPORTANT SAFETY INFORMATION:

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Important Safety Information for Sucraid® (sacrosidase) Oral Solution

  • 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® may cause a serious allergic reaction. If you notice any swelling or have difficulty breathing, get emergency help right away.
  • 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 just 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; single-use containers can be removed from refrigeration and stored at 59°F-77°F (15°C-25°C) for up to 3 days (72 hours). Refer to Instructions for Use for full information on how to take Sucraid®.

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 indicated for the treatment of sucrase deficiency, which is part of congenital sucrase-isomaltase deficiency (CSID), in adult and pediatric patients 5 months of age and older.