The Sibling Issue: Emotions That May Arise When a Child in Your Family Has Sucrose Intolerance

The Sibling Issue: Emotions That May Arise When a Child in Your Family Has Sucrose Intolerance

Siblings of a child diagnosed with Congenital Sucrase-Isomaltase Deficiency (CSID) may experience negative emotions. Here are some of the emotions that may arise and suggestions for ways that parents might tackle them.  

Feeling left out or jealous.

Parents may inevitably focus their energies on the child with CSID with the result that other children in the home have to deal with parents being less available, both emotionally and practically. This is especially true at the time of diagnosis since a CSID diet can be difficult to figure out and incorporate into the rest of the family’s routine. Be extra aware of the importance of spending time with all your children and making them a part of the whole CSID process to ensure that all of them feel important and loved.  

Do certain foods cause you to experience gas, bloating, and chronic diarrhea?

Resentment or bitterness.

Siblings may feel that there is a “special” relationship between the child with CSID and the parents 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 and 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 be reading a book together, playing sports together, or going out for a treat. 

A sense of guilt

Why him and not me? Siblings may also feel guilty if they ever have bad feelings toward the child with CSID. Allow the siblings to talk through their emotions, while offering emotional support. 

Anger at the situation.

Why us? Why our family? It is not fair. Reassure your child that this is normal and help them deal with it effectively. Help the sibling feel angry at the disorder, not at their brother or sister. 

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

The child with CSID eats differently from the other children, sometimes bringing 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. 

As part of the big picture, allow siblings to take turns making typical family choices, such as TV programs 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 or be penalized because another child in the family has CSID. 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. 

The positive aspect of having a family member with a chronic condition allows the non-CSID siblings to have opportunities to develop increased empathy, adaptability, responsibility, and problem-solving skills. These are all desirable traits that could be highlighted to a sibling who is having a hard time dealing with the realities of CSID. 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 it apart.


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Sucrose Intolerance May Be More Common Than You Think