If your child is diagnosed with Fanconi syndrome, they will be referred to a hospital to see a paediatric nephrologist, a doctor who treats children with kidney problems.

If your child becomes very dehydrated, they may need to be admitted to hospital so that their healthcare team can monitor how much they drink and how much urine they produce.

Your healthcare team may recommend that your child drinks more water or makes some changes to what they eat. Your child’s healthcare team will give you more information on this if it applies to your child. Do not restrict your child’s diet without advice from your healthcare team.

Your doctor may prescribe medications called alkali agents to help balance the levels of water and electrocytes in your child’s body. The type and amount of medications needed may change over time as your child grows. It is important to follow your healthcare team’s advice on medications.

Your child will have regular check-ups with their kidney team to monitor their health.

About the future

The outlook depends on what is causing your child's Fanconi syndrome.

Some cases resolve without the need for further treatment.

Others, including those linked to conditions such as cystinosis, need lifelong monitoring and treatment, and can affect how well the kidneys work over time.

Your child's kidney team will explain what to expect in your child's case.

Your child will be able to do all of the things that other children their age do. They can go to nursery and school and can play with other children and stay active.

Your healthcare team will speak with you and your family about any long-term effects.

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