How do we treat cystinosis?
Cystinosis treatment involves the use of a cystine-binding agent that is taken twice daily by mouth, as well as the application of eyedrops throughout the day. Because the kidneys are frequently affected in children with cystinosis, we typically prescribe oral medications and supplements to replace substances that are lost in the urine as a result of kidney damage.
These substances include phosphorus, potassium and buffer, which is a solution that helps neutralize small amounts of acid or base, helping to maintain a relatively stable pH level in the body. Treatment may also involve referrals to other pediatric subspecialties to address possible thyroid, bone, muscle, learning or heart issues.
While we can treat your child to help lessen the negative effects of cystinosis, we cannot prevent the condition from continuing to damage the kidneys. As cystinosis progressively damages the kidneys, dialysis or kidney transplantation may also be needed.
Why choose us for cystinosis treatment?
If cystinosis becomes bad enough to cause irreversible kidney failure (end-stage renal disease or ESRD), we offer the region’s only pediatric dialysis and kidney transplant programs.
Cystinosis treatment is highly specialized and often complex. Because the condition can affect other organs as well, we utilize a multidisciplinary team to treat all complications of the disease. By looking at all aspects of the condition, we can develop a comprehensive treatment plan to address all affected systems within the body.