Ham Lake toddler struggles with rare, paralyzing syndrome - KMSP-TV

Ham Lake toddler struggles with rare, paralyzing syndrome

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Imagine having a typical toddler running around your house one minute and then watching as he reverts back to an infant the next, unable to walk or feed himself. That's life for one Ham Lake boy.

Only one in 10 million people are affected by the neurological disorder called opscolonus myoclonus syndrome, or OMS. Jamie Solberg describes it as one of the mystery diseases doctors can't diagnose on TV, and she's hoping to spread awareness.

On some days, it seems like the Solbergs have their own speed track with three kids racing around. The youngest is 20-month-old Tell.

"He's a wild man," said Shane Solberg. "He doesn't take any guff from either one of his brothers."

On the surface, Tell looks like a typical toddler -- but he only started walking again a few weeks ago.

"He'll have his good moments, which are 15- to 20-minute bursts," Jamie Solberg said.

In April, the boy was at Children's Hospitals and Clinics of Minnesota. At first, it was because he had begun to walk weirdly, tilting his head to the side. At first, doctors diagnosed him with a viral infection caused by the flu and an ear infection they thought would clear up. Just a few weeks later, his condition went downhill fast.

"He basically can't do anything," Shane Solberg explained. "He can't walk. He's shaking. His whole body is shaking."

Those symptoms are caused by a syndrome seen in just 25 children a year in the U.S.

"Instead of your immune system attacking the bad things in your body like it's supposed to, it started attacking everything and started attacking his nervous system," Jamie Solberg told FOX 9 News.

It took weeks for Tell to learn all the basics all over again -- crawling, walking, and feeding himself.

"Your heart just sinks," Shane Solberg said. "What can you do? You are in shock."

Now that he's back at home, the Solbergs say FOX 9 cameras caught Tell on a good day.

"We're just taking it day by day because the prognosis is from one extreme to the other," Shane Solberg said. "It could be he's perfectly fine, he has no relapses to he could lose and be mentally or physically impaired."

With so few cases a year, little is known about OMS, but the Solberg family wants others to know that catching it quickly is important.

"We feel unbelievably fortunate that they were able to do this and the doctors at Children's stepped up to the plate and figured this out," Shane Solberg said.

It is still unknown what causes OMS, but Tell's doctor told FOX 9 News it is most often associated with neuroblastoma, a malignant cancerous tumor that develops from nerve tissue in infants and children; however, Tell's physicians remain hopeful that he will make a full recovery despite concerns he may face potential learning deficits down the road.

Online resources:

- Team Tell: http://teamtell.weebly.com/
- Baby Tell on CaringBridge: www.caringbridge.org/visit/BabyTell
- OMS Baby Tell on Facebook: www.facebook.com/OMSBabyTell

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