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Life with CSID

Helping Your Child with CSID Cope

Helping Your Child with CSID Cope

When you are helping your child cope with Congenital Sucrase-Isomaltase Deficiency (CSID), the first thing to realize is that knowledge is power. Just as you, the parent or caregiver, feel better equipped to handle the diagnosis as you learn more, so does your child. The more information you and your child can learn, the better the two of you will feel about your family’s ability to deal with CSID.

With that said, the type of information you relay to your child about CSID should be age-appropriate. You may explain to 5-year-olds that their tummies do not make the special stuff needed to break down sugars and or starches. Tell them that eating foods they shouldn’t results in a big tummy ache and requires many bathroom trips. When explaining it to a 12-year-old, you will be able to use proper terms such as isomaltase and sucrase and be better able to explain digestion.

Work with your physicians, registered dietitians and other reliable resources to give your child the best information possible. Assure your child that with proper compliance to dietary restrictions and treatment, outcomes with CSID are good. Periodically, check to make sure your child understands CSID and fill in the gaps in understanding as needed. Explanations should not stop at the time of diagnosis.

Secondly, remember that accepting the diagnosis of CSID is a process. When a diagnosis of CSID is made, there will be many emotions with which to contend, some visible and some silent.

Some Simple Guidelines for Helping Your Child Cope Are Listed Below

Listen to Your Child

Inevitably, your child feels “different.” CSID may deprive children of the comfort of blending in in most social situations. If they feel frustrated, angry, or sad, help them express those emotions. They should feel that they can share thoughts and feelings with you and not worry about you overreacting or becoming upset. Ask how they are feeling and always be available to offer a listening ear or a shoulder to cry on. Problem-solve with them. They will need comforting from time to time, as they grieve the loss of a carefree childhood and face the challenges of being different. Allow your child to express those emotions. Take other moments to highlight the positive aspects of having a chronic condition.

Prepare Your Child for What Lies Ahead​

Often, children are anxious about the unknown and make inaccurate assumptions about the future. Reassure your child that, in general, CSID is not a life-threatening disorder, but it is life-altering. They will have to be diligent about their diet and medication routine for the rest of their lives. Always prepare your child for any medical procedures to obtain specimens for a laboratory test, such as an endoscopy or venipuncture. This preparation can include reading books or doing online searches for explanations of the medical procedures. Most individuals have a greater sense of comfort if they know what to expect from a situation.

Support Your Child’s Friendships

Often, children are anxious about the unknown and make inaccurate assumptions about the future. Reassure your child that, in general, CSID is not a life-threatening disorder, but it is life-altering. They will have to be diligent about their diet and medication routine for the rest of their lives. Always prepare your child for any medical procedures to obtain specimens for a laboratory test, such as an endoscopy or venipuncture. This preparation can include reading books or doing online searches for explanations of the medical procedures. Most individuals have a greater sense of comfort if they know what to expect from a situation.

Frequently Talk About CSID as It Comes Up

The topic of CSID should not be kept a secret because secrets indicate shame. CSID is a way of life and should be discussed openly. There will be days when CSID may be a topic of conversation many times, and other days when it’s not mentioned at all. Follow your child’s lead in this area. At the same time, respect your child’s privacy. Explain to your child that certain people such as babysitters and teachers need to be informed, but if your child does not want you discussing CSID with a mere acquaintance, honor that request.

Emphasize Your Child’s Strengths

When children feel down about their diets, let them be sad and empathize, but also point out how having CSID has made them more resilient, strong, and empathetic toward others. Constantly look for instances of these qualities being displayed so you can offer examples when your child is having a rough day. Try to instill a sense of pride in children about their ability to handle CSID. Help them discover who they are, separate from the diagnosis of CSID. Help them find their special gifts and what brings them joy. Let your child have as much control as possible.

Your child will have dietary restrictions. You will have to supervise food choices and monitor eating habits closely. However, you can allow your child to control simple things such as what type of cup to use to take medicine, or the type of silly straw to use for a beverage. Within the allowable foods, let your child choose as much as possible. Have a dedicated shelf in your pantry for safe foods that your child can choose from. Because your child’s diet is monitored, try to give as much control as possible.

Do Not Victimize the Child with CSID

A diagnosis of CSID will have a lifelong impact on both your family’s life and your child’s life. The emotions initially felt with a new diagnosis can be very powerful. A parent, caregiver, or any family member may feel a strong sense of protectiveness toward the child, but shielding them from the realities of life with its normal ups and downs unrelated to CSID does not serve your child well. Take time to process the diagnosis, but remember that at the core, your child is just like other children and merely wants to discover the world around them. Try to not emphasize the negative side of CSID or talk only in terms of what can’t be eaten or why going to a party could be difficult. Once tolerance levels have been established, there are many foods a child with CSID can eat. Focus on the positives and on how to integrate a child’s limitations into a daily routine.

Try to Normalize Life as Much as Possible

A child with CSID will need a monitored diet. Maintaining a routine family schedule unrelated to food is also important. Chores, homework, what to watch on TV, or any other daily activities need to be as normal as it would be if the child were not diagnosed with a chronic condition. Children eventually grow up and manage their own care. How well they manage life with CSID as an adult will be dictated in part by how well they learn to cope with it during the developmental years. Try not to make your child with CSID the focal point of the family. Your child’s chronic disorder is part of the family landscape, not the defining feature of the family.

Be a Good Role Model

Your child will take clues from you on how to handle life with CSID. Be honest in your emotions, but don’t lay the burden of your feelings onto your child. Model good coping techniques, such as seeking solid support systems, pursuing relevant education, engaging in spiritual or religious activities, exercising, or journaling. Sometimes children just need to hear that life with CSID is not easy, but that they can handle it. Above all, be as positive as possible.

Learn Effective Parenting Skills Related to CSID

Often, children are anxious about the unknown and make inaccurate assumptions about the future. Reassure your child that, in general, CSID is not a life-threatening disorder, but it is life-altering. They will have to be diligent about their diet and medication routine for the rest of their lives. Always prepare your child for any medical procedures to obtain specimens for a laboratory test, such as an endoscopy or venipuncture. This preparation can include reading books or doing online searches for explanations of the medical procedures. Most individuals have a greater sense of comfort if they know what to expect from a situation.

Take Back Control of Your Life

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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.