You've probably never heard of it, but one in three kids with autism has it. Fragile X Syndrome is a developmental disorder that can be diagnosed while your baby's still in the womb. Now, a new treatment that's helping kids with the condition get rid of symptoms.
Holly is her mom's little princess, but this girl's fairytale started with a scare. While pregnant with Holly, Vicki Davis found out she was a carrier of fragile X syndrome.
"I had never heard of it. I had no clue what it was," says Vicki.
It is a mutation of a gene on the X chromosome that leads to a lack of protein production critical for development. It's one of the most common causes of mental retardation and autism.
"30% of individuals with fragile X syndrome have full autism. Another 30% have an autism spectrum disorder," says Randi Hagerman, M.D., medical director of the mind institute and professor of pediatrics at University of California Davis Medical Center.
Hagermam says she first met Holly when she was just a few months old. The infant's fragile X syndrome was subtle. But "she was extremely delayed," says Hagerman.
As part of a clinical trial Holly started taking a serotonin medication. Then minocycline, a common antibiotic normally used to treat acne was added to her regimen.
"Her developmental testing just improved remarkably," says Hagerman.
Holly did not start talking until she was two and a half. Vicki says additional minocycline treatments around that time helped Holly catch up to other kids and even excel. At just four she started reading.
"The medication really helped her create some of those pathways that taught her how to learn," says Vicki.
Hagerman hopes the treatments that helped Holly could do the same for autistic kids and that could mean a lot more children living happily ever after.
Hagerman tells us the drugs Holly was treated with have a few side effects like some gastro-intestinal issues, and rare severe headaches. She says the drug treatment can be used in older kids with fragile X, however the results might not be as dramatic.
The Mind Institute is currently testing other investigational drugs to improve core symptoms of fragile X syndrome for five to 25 year olds.