Las Vegas Valley teen fighting rare autoimmune disorder
Photo: Video by ktnv.com
Las Vegas, NV (KTNV) -- A Las Vegas Valley mom learned just how quickly her son's life can change.
Diagnosed with a rare immune disorder, her son never showed symptoms he was sick. Doctors say that's often the worst part. Action News Anchor Beth Fisher explains how their story could be a wake-up call for other parents.
The drum beats help Diego Gonzalez forget about everything else.
"[He's] always been into music," said Tina Gonzalez, Diego's mom.
Tina says he always liked socializing with his friends. But last fall that all changed. Diego came to her and said he didn't feel right.
"He was in a fog and school was hard," said Tina.
So Tina made an appointment with his pediatrician who says she diagnosed him with attention deficit disorder. But with medication Diego only got worse.
"He woke up and my child was gone," said Tina.
The 13 - year - old started having outbursts, tics as doctors call them and talking baby talk.
That coupled with no sleep and the onset of Obsessive Compulsive Disorder is just one of the many reasons Tina pulled Diego out of school at Faiss Middle. The demand of caring for him forced her to quit her job and Diego to lose touch with many of his friends.
"He says things that will offend everybody," said Tina.
Another trip to another doctor revealed another diagnosis for Diego, Tourette's.
"About seven, eight weeks ago it got so bad to where my child could not even walk," said Tina.
With more meds came no visible improvement in his behavior. Tina did some research online and made another trip to the doctor to get a blood test. The suspicions of her online research were confirmed through the blood test results. Diego had PANDAS, a Pediatric Autoimmune Neuropsychiatric Disorder.
"PANDAS is fairly new and in the medical community there's a lot of disagreement about whether it even exists," said Dr. Rohan Raja, Diego's neurologist.
Dr. Raja says PANDAS is often the result of a strep infection. Sometimes undetected, the strep infection may go away but the antibodies that help fight it off linger and start irritating the brain. When steroid treatment didn't significantly.help, Dr. Raja says a next step is a plasma protein replacement therapy.
"Replace the antibodies basically drown the bad ones in a sea of good ones," said Dr. Raja.
Tina says even with being on Medicaid, the treatment will cost over $5,000. So while she raises money through a donation site for that treatment, Diego is getting his tonsils out in hopes of preventing another strep infection.
"This can happen to any child out there," said Tina.
But with treatment Dr. Raja is hopeful for Diego's future.
"I think that he will get some of his childhood back, his ability to function back," said Dr. Raja.
Even though Tina knows PANDAS could return, she's trying to see the silver lining in all this.
"Oh you're the best mom ever," said Diego.
There's a PANDAS support group in the Valley for families looking to find how other are coping. Tina says she's going to home school Diego this year and hopes next school year he'll be able to go back with his friends. If you'd like information on how you can help the family, click here.
You can also make a donation at any Wells Fargo to account number: 3709973006
Click here to learn more about Dr. Raja's practice.