Lexington, SC"I can't believe this drug is still prescribed to women of child-bearing age," says Sonja, who started taking Depakote in 1986 for epilepsy. "I was first on Dilantin, then my doctor switched me to Depakote and said it was ok to get pregnant. How wrong he was."
Sonja's first son, Casey, was diagnosed with Chiari 1 Malformation, a condition in which tissue from the back of the brain protrudes into the spinal canal, for which he required surgery. Cody has scoliosis and Casey has Scheuerman's Kyphosis, a developmental disease related to the spine. Both boys have autism.
"Everybody knows in the medical profession that you don't mess with Depakote and pregnancy but they are still dishing it out, more now than ever"
Casey was born in 1987. When he was about 15 months old, Sonja noticed he had behavioral problems. "Dr. Penry, our pediatrician, wanted to have Casey checked out by a geneticist," says Sonja. "The geneticist sent a letter to our neurologist and pediatrician saying long-term developmental delays were associated with Depakote. But I didn't find out until 1995—talk about a hard pill to swallow!
"Cody was born in 1989 and the doctor said he might be autistic. We didn't even know what autism was. You have to remember at that time, information was hard to find, but we kept searching for help. We found a geneticist in Illinois who would test the boys for autism; he needed all the medical records so I collected everything and found the letter.
"The geneticist said right away not to get pregnant again and get off the Depakote. Casey didn't have fetal alcohol syndrome as some doctors said. One neurologist said to me, 'I just don't know how mothers can drink while they are pregnant.' I don't even drink!
"Another thing: I didn't want epilepsy to be passed on to my children; Dr. Penry said that wouldn't occur. Later I talked to an associate of his and I told her I was glad the kids wouldn't have epilepsy. She told me she was 100 percent sure Casey would have epilepsy and a 50 percent chance with Cody. I was hysterical. I wasn't expecting anything bad to happen—I trusted my doctor.
"When I had Cody, the nurses at the hospital wouldn't let me nurse Cody because I was taking Depakote. But Dr. Penry said it was fine to breastfeed when I had Casey.
"Today, Casey is 22 and has full-blown autism. He cannot communicate, he doesn't socialize. He only goes outside when I take him out. He needs 24-hour supervision. I took him to TEACCH, and learned how to work with him, but it took six long hard months to get 30 seconds of response out of Casey.
"Cody, 20, wasn't exposed to as much Depakote as Cody—I didn't breastfeed him. By seven months he was walking and running; he was able to talk and write. Then at the age of three, we had a big flip. He stopped talking completely and I was pulling my hair out. I took him to TEACCH and he was diagnosed with autism.
"Now Cody is in college. He lives on campus and got his driver's license last year, and I am very proud of him but he still has behavior issues, like a five-year-old in an adult body.
"Around 1997 I was talking to an attorney for something unrelated to Depakote and he was inquiring about the kids. I told him about Depakote and its link to birth defects and he contacted an associate who said they would take my case. About one year later they said they couldn't take my case because they couldn't find anyone to go against Dr. Penry. One doctor who was going to speak against him was going to charge $100,000 but the attorneys wouldn't pay him that much. So life went on.
"Everybody knows in the medical profession that you don't mess with Depakote and pregnancy but they are still dishing it out, more now than ever. I heard they are prescribing it for bipolar and migraines."
Sonja is right: the first sentence on the Depakote website reads: "Depakote and Depakote ER are used to treat acute manic episodes associated with bipolar disorder." MedicineNet.com says it is prescribed for migraines.
The Food and Drug Administration (FDA) assigns each medication to a Pregnancy Category according to whether it has been proven to be harmful in pregnancy. Depakote is listed in Pregnancy Category D, which means that there is a risk to the baby, but the benefits may outweigh the risk for some women.
However, Depakote (Valproate) carries a black box warning, the strongest advisory the FDA issues. "The use of Depakote ER in women of childbearing potential requires that the benefits of its use be weighed against the risk of injury to the fetus," reads the warning. "This is especially important when the treatment of a spontaneously reversible condition not ordinarily associated with permanent injury or risk of death (e.g., migraine) is contemplated."
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