Your child’s primary physician will help assess questions about puberty and menstruation. A complex care clinician and endocrinologist can assist with assessment and decisions about puberty and low bone mineral density. Complex care and palliative care clinicians can support the goals that are important to you and can help guide your decisions.
Endocrine
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The brain stimulates the release of hormones from certain organs throughout the body, including the thyroid gland, adrenal gland, ovaries and testes. A change in this regulation can cause hormonal changes in some children with SNI, such as low thyroid hormone release (hypothyroidism), early puberty, altered water regulation, and low cortisol levels. Hormonal changes can also affect bone health. Children with SNI who cannot walk, or who over time lose the ability to walk, are at risk for developing osteoporosis, a condition in which bones become weak and brittle.
Adapting to Diagnosis
Collecting information, care and support as issues emerge for your child and your journey begins.
Building Strengths
Maximizing your child’s core skills and family resiliency to develop a foundation for the journey.
Adjusting to Changes
Making decisions and adapting to your child’s evolving baseline throughout the journey.
Navigating Decline
Re-orienting goals and finding support alongside declines in your child’s condition, preparing you for the end of your child’s journey.
Present in Some Children
Hyponatremia and Hypernatremia
A low sodium level in the blood is called hyponatremia. Hyponatremia in children with SNI may be due to changes in how the brain regulates sodium. Hyponatremia can also occur with certain medications, including some used to manage seizures. Adding a small amount of salt in the diet may restore the body’s sodium level. Sometimes a high level of sodium called hypernatremia, occurs and causes too much urine to be produced. Hypernatremia is caused by deficiency of a hormone produced in the brain (antidiuretic hormone (ADH) or vasopressin). This hormone can be replaced with medication.
Hypothyroidism
Low thyroid levels, known as hypothyroidism, occur when the thyroid gland is not working properly. In children with SNI, the brain sometimes does not produce enough of the hormone that stimulates the thyroid gland, which is located in the neck. Hypothyroidism is diagnosed with a blood test. If hypothyroidism is found, it is treated with thyroid replacement hormone and is monitored through routine blood tests to assess hormone levels.
Adrenal Insufficiency
When the adrenal glands are not producing enough of certain hormones, such as cortisol and aldosterone, an insufficiency occurs. In children with SNI, the brain does not send signals to stimulate cortisol release. Abnormal lab test results are often the first indication of adrenal insufficiency. The clinicians will order blood tests to determine if the cortisol level is too low. If so, a daily dose of cortisol is given. A higher dose, sometimes known as stress dose steroids, is ordered to be given during times of increased stress, including illness or surgery.
Short Stature
Children with SNI may be relatively small for their age. This can occur for many reasons, including a child’s underlying genetic diagnosis, ongoing inflammation from a chronic disease, or low growth hormone levels. If a child with short stature is discovered to have low growth hormone, they may be medically indicated for growth hormone treatment to help increase their adult height. However, this decision is closely related to a caregiver’s goals for their child, as there usually is not a “right or wrong” answer. This decision can be best addressed with the help of a patient’s primary pediatrician, endocrinologist and complex care team.