Advice for patients and caregivers dealing with GSID
Infants and Toddlers
It is impossible for infants and toddlers to have an understanding of GSID and its symptoms, which include abdominal pain and cramps. Infants and toddlers are just beginning to develop trust and a sense of security. By holding, soothing, gently massaging, and interacting skin-to-skin, infants and toddlers can develop a strong sense of security with their parents/caregivers. Don’t be alarmed by potty accidents; they happen.
It is important to work with your physician and/or registered dietitian (RD) to develop your infant’s/toddler’s diet in order to ensure that their nutritional needs are being met. Before being diagnosed with GSID, some infants and toddlers already have a diagnosis of “failure to thrive.” Therefore, it is important for a physician and RD to closely monitor your child’s growth.
As preschoolers develop a sense of independence, they may start to challenge their parents/caregivers by refusing to take their medicine, throwing tantrums, or sneaking and/or refusing foods. They may understand what it means to feel sick, but they are too young to comprehend how their diet affects their symptoms. This is an important milestone, and parents/caregivers should have consistent expectations, and enforce discipline as needed.
Potty accidents may continue to occur in preschoolers, and it is imperative that your child knows not to feel guilty. Work with your child’s preschool to ensure your child’s diet and bathroom needs are met. Diet is a crucial factor, so work with your physician and/or registered dietitian (RD) to develop your child’s nutritional requirements. Keep meals from becoming a source of battle. When a child has hidden food, or refuses to eat appropriate foods, convey sadness if necessary.
Early School-Aged Children
Early school-aged children can describe the reasons for their symptoms, and have a basic understanding of GSID. At this age, children begin to sense that they are different than their peers, and they also begin to develop a sense of mastery over their surroundings. Parents/caregivers can help these children by allowing them to assist in the responsibility of preventing their GSID symptoms.
By giving children choices, they will feel more in control. Simple choices, such as where to sit to take medication, and how to administer the medication, boost their self-esteem. Allowing them to choose food within the “safe foods list,” cooking alongside the parent/caregiver, or developing their own recipe ideas may also work well. Parents/caregivers can help these children start to develop resilience in facing a chronic condition like GSID, and help them gain confidence. Meet with your child’s school to ensure your child’s diet and bathroom needs are met. Continue to work with your physician and/or registered dietitian (RD) to develop your child’s nutritional requirements.
Encourage play dates and sleepovers, as these things are very important to children at this age. Sending appropriate snacks/drinks, as well as medication to a friend’s house for a sleep over or play date, are advised. If the other parents feels overwhelmed with the responsibility of hosting a child with GSID, then the parent/caregivers of a GSID child should simply be prepared to host play dates and sleepovers instead.
Older School-Aged Children
Older school-aged children may feel left out of activities due to their diet restrictions, so parents/caregivers should provide empathy as needed. It is important for a parent/caregiver to provide appropriate food options for various activities where non-GSID appropriate food may be served. Nutritional needs must be met, so it is imperative to work with your physician and/or registered dietitian (RD) to develop your child’s diet plan.
At this age, a child is old enough to be included in the diet planning process. Encouraging menu ideas, food preparation, and grocery shopping for appropriate food items can be great ways to cultivate ownership of self-care. It is his/her body, and he/she will be the one adhering , or not adhering, to the plan. Giving older school-aged children the power to contribute to the food plan helps with their self-esteem, and educates them on necessary information for their future self-care.
Information and support can be especially empowering for this age group. Encourage your child to become more knowledgeable about GSID and the digestive system. Encourage your child to interact with other children who have a chronic condition, food allergies, or an illness that requires a special diet, such as diabetes, celiac disease, and/or cystic fibrosis.
This encouragement will help your child better handle difficult situations, like bullying. Since GSID produces embarrassing symptoms, such as frequent bathroom trips or gas, your child may become the target of a bully. Help your child maintain a strong sense of self-worth, pointing out that a bully does not deserve your child’s time or attention. It is very important to include teachers and school officials when severe instances of these situations occur. All children deserve to feel safe at school. Work with your child’s school to ensure your child’s diet and bathroom needs are met. This age might also be a good time to teach your child how to self-administer his/her medication at home or at school if you and his/her physician believe your child is ready.
During adolescence, self-image becomes extremely important as children begin developing their own identity. Assisting your adolescent in maintaining control over his/her GSID symptoms continues to play an important role for the parent/caregiver, however, your role as primary caregiver may be significantly less. Parents/caregivers who have been very involved in their child’s management of their GSID symptoms may find it difficult to relinquish control. Adolescents will likely go through times of denial regarding their GSID diagnosis, and may neglect to take their medication(s) and/or follow their diet. Remember that a teenager with GSID is still a teenager, and these rebellious acts are normal.
Parents/caregivers should expect the occasional noncompliance with the GSID diet. It may be necessary for a teen to experience GSID symptoms to the point of missing an important event in order for them to understand that eating that piece of cake was not worth it. Symptoms can sometimes be the most effective teachers. When a teen (or child) sneaks food and eats something that makes him/her sick, express your disappointment, but also side with your child against GSID. Rely on healthcare professionals to support your position. Sometimes a patient-only appointment with his/her physician may be necessary so they can discuss how GSID affects him/her. A GSID-appropriate diet is not easy for an adolescent to follow, especially as a lifelong diet.
Work with your physician and/or registered dietitian (RD) to develop your adolescent’s diet, ensuring that nutritional needs are being met. Some gastroenterologists might recommend at this time to schedule a first-time individual consultation. With the patient being old enough to comprehend, the physician can educate the patient directly on their condition and how to manage their symptoms.
Going to college is a major milestone for any student, and it pushes you to new levels of independence that will contribute to your future health. This transition can be really exciting, but it could also be scary for a student with GSID. Preparation is the best way to deal with that fear. By ensuring you have the right tools for your healthcare needs at college, you are setting yourself up for success. Here are a few tips for managing your GSID symptoms while at college:
- Educate yourself regarding GSID. You should be able to explain what GSID is and how it affects you. Create a 1-page document explaining GSID in simple terms. Be aware of any other pertinent medical information, such as your medications, and any allergies you may have. Be aware of the process of reordering medication.
- Find a physician near your college. Whether you choose to use Student Health Services or off-campus healthcare facilities for medical care, it is wise to establish medical care soon after arriving on your college campus. Be sure and bring your medical records with you.
- Consult what services your college may offer for students with chronic disorders. Most colleges have a Disability Services Center. Accommodations such as unlimited restroom access or additional testing time if you are feeling sick are available to students with medical conditions.
- Stay in communication with your parents/caregivers and keep them informed regarding your well-being. They are a source of guidance and medical information.
- Make wise health choices related to GSID. Exercise and get plenty of rest to maintain your health. It can be tempting to eat forbidden foods while away at college, but try to follow a GSID-friendly diet. This will entail making wise decisions regarding your meals and snacks.
- Deciding whom to tell about GSID is completely your decision. Some patients try to keep their medical situation private, while others have found it beneficial to share with your roommates, friends, and professors. Your college campus may offer a support group for students dealing with chronic disorders/illness.
Being aware of your housing situation and how it could affect your GSID will make your college life a much more pleasant one. Common restroom facilities shared by students in a dorm are sometimes required for incoming freshman. If a student with GSID has concerns about sharing a restroom, or the distance to the restroom, he/she should discuss it with someone on the housing staff. The housing staff will likely be accommodating.