Communication to school | School lunch | Supplementary food/snacks

Extracurricular activities | Periodical check-up | As your child grows | Keep yourself up-to-date

If the nursery or school provides a fixed lunch, the portion of each plate may need to be adjusted to fit the needs of patients, therefore it may be necessary to put in a request.

Patients with citrin deficiency typically eat less carbohydrate and more protein and fat-rich foods to meet their metabolic needs. It is very important for them to eat what they want in the amount they want for steady growth and stay healthy, regardless of what is considered the ‘general’ amount of food. Please learn more about the PFC balance here.

Taking MCT supplements is recommended as it directly provides energy to the liver. This is important for citrin deficiency patients as they have energy deficiency in the liver.   MCT has also been reported to be effective for citrin deficiency patients during the compensatory phase.

If a served meal contains high amounts of carbohydrates, children with citrin deficiency would not be able to finish the meal. Conversely, if the portion of high fat and high protein dishes served is of a regular amount, it will not be enough for them. They will be hungry and have a shortage of energy in the afternoon.

If a meal is served at the nursery or school, adjustments to the portion of dishes will probably be necessary to meet the patients’ needs. Parents are advised to check out the menu in advance and prepare supplementary food if the menu only includes high carbohydrate dishes.

In some cultures, it may be better to have the understanding from teachers and classmates about the dietary needs of the patients.

It is very necessary to have frequent meals throughout the day for patients with citrin deficiency at any age, as the liver has some difficulty producing glucose and hence generating energy. Snacking will provide frequent energy charges to the body, reduce the risk of hypoglycemia, and support patients to allow them to stay healthy and energetic.

Snacking is especially important for children around this age as they are growing up and engaging in a lot of physical activities. If necessary, please make arrangements for your child to snack on something between classes.

Snacking after dinner before going to bed will reduce hypoglycemic tendencies during sleep as well.

Children with citrin deficiency are encouraged to take part in sports and extracurricular activities. But it is important to ensure that they are eating three meals and snacks daily, and getting enough rest to cover the extra energy consumption. It is also recommended to add MCT into their diet as a supplement, as it directly provides energy to the liver. This is important for citrin deficiency patients as they have energy deficiency in the liver, and MCT has also been reported to be effective for citrin deficiency patients during the compensatory phase.

Please visit the attending doctor every 6-12 months for a medical check-up even if your child seems to be doing well. Medical examinations can detect conditions such as fatty liver which can develop without any symptoms.

As children grow up, they will be more independent, as they begin to socialize with friends, eat out, and make decisions away from their parents’ supervision.

They will need to make necessary choices for themselves that are safe and protective for their health and their quality of life, which will in turn, reduce the risk of AACD*. Please help your child be mindful of the following. It will be even better if your child is able to prepare meals by themselves or know where the food is – it will be good preparation for independence and emergency situations.

• Do not miss any meals
• Take snacks at least once in the morning and once in the afternoon (It is better to eat a little or drink some milk rather than to not snack at all.)
• No consumption of alcohol
• Be able to explain the needs and conditions of citrin deficiency

*Adolescent and adult-onset citrin deficiency (AACD) – formerly known as CTLN2

Research in science and medicine will consistently yield new findings and developments. It is important that you keep yourself up-to-date on the latest findings and information to enhance your or your child’s health.

Citrin Foundation aims to support patients by funding research in citrin deficiency directly and being on top of the latest developments in scientific and treatment development regarding citrin deficiency with our network of scientists and doctors around the world.

Please join our community here, and we will send you the latest updates on developments and treatments when they are available, as well as invitations for events we host and tips to enhance the quality of patients’ life.

Your registration will also help doctors and scientists to further understand the condition and will be helpful for our efforts in developing treatments.

Please be rest assured that your information will be kept confidential under our Personal Data Privacy Policy.

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