ESP 
Your child’s primary physician or complex care clinician can assess for a bladder infection. A nephrologist and urologist can assess kidney stones and make recommendations about treatment. Complex care and palliative care clinicians can help adjust the care plan during decline.
Kidney Stones
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Children with SNI have an increased chance of developing kidney (renal) stones. Kidney stones, called nephrolithiasis or urolithiasis, form when certain minerals, including calcium stick together. The solid material that forms varies in size from sand to gravel to a pearl or larger. Kidney stones can also be the result of bacteria in urine or bladder dysfunction. Sometimes kidney stones are found in the toilet or diaper, but they also can be present without any obvious signs. They are suspected when there is blood in the urine or acute pain. Kidney stones are diagnosed with an ultrasound or CT scan of the kidneys.
ESP This risk of kidney stones is increased in children on a ketogenic diet, those taking certain medications, and in children with recurrent bladder infections. Some medications, including those used for seizures, can increase the risk of stones. Other factors may increase the likelihood of kidney stones in children with SNI, such as low fluid intake, excessive intake of calcium and vitamin D, or being non-ambulatory.
Kidney stones are diagnosed by a renal ultrasound or CT scan. The medical team may recommend periodic ultrasounds to monitor the development of stones in children at greater risk. Stones found in a diaper should be saved and assessed to determine the type of minerals in the stones. The medical team might also ask you to collect urine over 24 hours to assess for the minerals found in the urine. This information helps the specialists make recommendations about treatment. Initial interventions may include hydration and diet changes, although medications can be used to decrease kidney stone recurrence.
Children at risk for or who have kidney stones benefit from increased fluid intake. You can discuss the amount of fluid that is right for your child with the medical team. The kidney specialist (nephrologist) will make decisions about medications that can decrease the amount of calcium filtered by the kidney into the urine. The urologist might review options for stone removal if the ultrasound or CT scan shows stones that are large and could be blocking the flow of urine.
ESP It is frightening to find blood in your child’s urine or stones in the toilet or diaper. Probably scariest of all is what you may have heard, read, or witnessed: the pain that kidney stones cause.
It may be difficult to identify a kidney stone as the source of pain, particularly if your child does not often exhibit the typical pain symptoms for other conditions. You may worry that you caused the stones by not adequately feeding or hydrating your child, or that you have damaged their kidneys. You may fear a recurrence. The medical team will likely reassure you that your child’s diet and/or vitamin or medication regimen simply needs some adjustment. Taking action will help you feel stronger and more confident that you are doing your best to provide loving care for your child.
