Therapy and Support

There are now several antiviral medications licensed for the treatment of serious CMV disease. The two antiviral medications evaluated in clinical trials and recommended by CMV experts are ganciclovir and valganciclovir. Antiviral treatment should be considered for newborns with congenital CMV disease, and started in the newborn with signs and symptoms associated with congenital CMV within the first month of life, or as soon as possible after diagnosis is confirmed. Ganciclovir is administered intravenously (IV) for usually 6 weeks of treatment. Side effects of IV ganciclovir include irritation at the site of the IV (therefore usually a central line is used to administer the medication safely), and abnormalities in the blood count, especially neutropenia or low infection fighting cells. This side effect may occur in about two thirds of newborns who receive this IV treatment. Occasionally, other bone marrow suppression can occur or a mild drug induced hepatitis has been seen in some children. These side effects are managed by halting the medication temporarily, rechecking the abnormal tests, and restarting the medication when the effects have resolved. Valganciclovir (Valcyte) is administered orally by mouth for usually 6 months of treatment. Side effects of oral valganciclovir include mild upset of the gastrointestinal tract, mild disruption of sleep patterns, and abnormalities in the blood count, especially neutropenia or low infection fighting cells. This side effect may occur in about one fifth of newborns who receive this oral treatment, much less than IV ganciclovir treatment. It is important to make sure the original Valcyte clear solution is provided by the pharmacist and given to your baby. In pharmacy compounding of Valcyte tablets to make a compounded suspension is no longer recommended. Clinical research trials may also be in progress to determine if longer antiviral treatment or new antiviral treatments help babies with severe disease at birth due to CMV infection. You may contact your doctor, www.clinicaltrials.gov, or the Congenital CMV Research, Clinic and Registry program here in Houston Texas for the names of participants near you who may be knowledgeable in treatment of congenital CMV infection.

Prenatal treatment of congenital or in utero CMV infection in the fetus may be administered to the pregnant woman who has experienced a primary CMV infection. If transmission of CMV to her fetus has already occurred and documented by amniocentesis, symptoms of in utero CMV may be lessened or reversed through administration of CMV hyperimmune globulin to the mother. This treatment should be discussed with your doctor, and administered, if considered appropriate for your case, by an obstetrician or maternal fetal medicine specialist familiar with the risks and benefits of this treatment. Administration of CMV hyperimmune globulin to the pregnant mother who has experienced a primary CMV infection during pregnancy but who has not yet been documented to have transmitted CMV to her fetus, may also reduce the risk of CMV transmission to the fetus. Clinical trials further evaluating the risks and benefits of this prenatal treatment are being conducted in many countries around the world, and the latest information on a research trial near you may be available at http://www.clinicaltrials.gov.

It is important for you to know you are not alone and that many people can help you and your family. CMV is a misunderstood virus, and the latest factual information about this virus is available for you, your family and friends, teachers, and health professionals. A parent-to-parent support network also has been established. The support network is a list of families from all across the country who have a child with congenital CMV disease. Parents join for a variety of reasons, but they mostly want support and advice from other parents with similar experiences. For more information about CMV, the Parent-to-Parent Support Network, or other services, please contact the National Congenital CMV Disease Registry, or join the Parent Support Network.