published Monday, December 7th, 2009

Solving a mystery


by Kelli Gauthier

IF YOU WATCH

What: "Mystery Diagnosis" featuring Cleveland, Tenn., family on Discovery Health network

When: Today, 10 p.m. EST

In the end, it was YouTube that gave Cleveland, Tenn., residents DeAnna and Jonathan Withrow the medical diagnosis no doctor could.

Mrs. Withrow sensed something was wrong the moment her son Landyn, now 3, was born. His unfocused baby gaze wasn't looking straight ahead, but rather constantly upward. Doctors assured her his vision would correct itself when he gained greater control of his eye muscles, but still, she wondered.

"At first it was, 'Oh, he must be looking at the light.' So I just asked casually, 'Does this look OK to you?' Everybody reassured me that it was fine," she said. "It was very hard for a while to get anybody to pay attention to it."

But one night after the new parents brought Landyn home, he became nauseous, screaming, curling up and stiffening -- all while his eyes remain focused upward. A string of doctors suggested Landyn might have everything from reflux to autism.

So after 18 months of living in fear that her son's mystery illness would worsen, Mrs. Withrow stumbled across a video on YouTube of a little boy in Michigan that "could have been Landyn's brother."

  • photo
    Staff Photo by Danielle Moore
    Landyn Withrow, 3, lies in bed at his home in Cleveland, Tenn. At birth Landyn was diagnosed with paroxysmal tonic upgaze, a condition similar to Parkinson's disease that affects the ability to coordinate muscle movements.

"Until you see it, I don't believe you'd recognize it in another chid," she said. "If you saw Landyn, you might even wonder if anything was wrong; you kind of have to hang out for a little bit. He looks like he's being coy with you or that he's looking past you, or at a light. He drops his chin to his chest in order to look straight at you."

The Withrows flew Landyn to Detroit to talk with the other boy's doctor, who confirmed that Landyn, too, is one of about 50 people in the world who has Proxysmal Tonic Upgaze, or PTU.

"It was sort of bittersweet, really," Mrs. Withrow said. "I knew going into it, there wasn't much that anybody could do about the condition. Still, I was hoping there was something I hadn't read and the doctor would tell us something. But really, it was the other way around, me sharing my experience with him and him learning about PTU."

Thankfully for the Withrows, children typically grow out of PTU and stop exhibiting symptoms between the ages of 3 and 5. In the last six months, Landyn has made significant developmental progress, Mrs. Withrow said, and now is on the brink of walking and talking.

Landyn's story will be featured tonight on Discovery Health network's show, "Mystery Diagnosis" at 10 p.m. EST.

PTU does not affect Landyn's mind, said his pediatrician, Saji Gopinathan, a doctor at Kidzcare Pediatrics in Athens, Tenn. Rather, it is an immaturity of the gaze center, the part of the brain that tells a person to look straight ahead.

The Withrows said the condition is similar to Parkinson's disease in that it affects the ability to coordinate muscle movements.

Dr. Gopinathan said doctors are unsure what causes PTU, but that most patients, like Landyn, can come out of it periodically.

"The interesting part is there are some things we can do to the child to manipulate him to get him out of it," he said. "I can pick up the child and swing him around three or four times and he's out of it for 45 minutes or so."

Alon Orstein, the executive producer of "Mystery Diagnosis," said the Withrows' story was a perfect fit for his show, which features people who struggle to get diagnoses for their rare conditions and diseases.

"It's about bringing some much-needed exposure to some of those rare diseases out there, and about patient advocacy," he said. "There's a message out there of taking ownership of your health and your well-being."

Mrs. Withrow said Landyn likely will have to catch up on motor and developmental skills throughout elementary school. But, she said, she's one of the lucky moms.

"When we go to therapy, meeting other moms, there's a lot of kids who won't grow out of their condition," she said. "I couldn't be more grateful."

about Kelli Gauthier...

Kelli Gauthier covers K-12 education in Hamilton County for the Times Free Press. She started at the paper as an intern in 2006, crisscrossing the region writing feature stories from Pikeville, Tenn., to Lafayette, Ga. She also covered crime and courts before taking over the education beat in 2007. A native of Frederick, Md., Kelli came south to attend Southern Adventist University in Collegedale, where she earned a bachelor’s degree in print journalism. Before newspapers, ...

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matteosmom said...

We believe our wonderful 11 month son Matteo has PTU. We noticed in the last few months that he was having a lot of eye movement which continued to get worse at a rapid rate. Then it progressed to the chin down and eyes up stage, and was intermittent also. In the last few weeks we have noticed that it is almost constant now. It does seem to be triggered by sleepiness and bright lights. The only thing is that he has been developing right on track and has no trouble getting around and is even close to walking at this stage. Also he is an incredibly happy and very bright little boy. It seems lately that he has been rubbing his eyes a lot and they do water quite a bit as well. This has been extremely stressful watching our son deal with this, and we only want to find out as much as possible about this condition. We have had an EEG, and also MRI amongst other tests. We have seen opthamologists, neurologists and we still have not found anything out of the ordinary. We have a few more tests coming up and we are going to continue to hope that this condition improves and that we can find the answers we have been searching for. Thanks for the imformation Christa Janes

May 22, 2010 at 4:56 p.m.
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