By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Maria Sandoval will never forget the day she realized something was wrong with her 12-year-old son, Hector Jr.
It was May 23, the last week of school, and she was rushing him to get ready so she could drop him off at the babysitter on her way to work.
He wasn’t moving very fast.
“I thought he was joking around. I told him, ‘Hurry up, tie your shoes, we gotta go.’
“He said, ‘Mom, I can’t tie my shoe.’”
She was not amused. “What do you mean you can’t tie your shoe? You know how to tie your shoes.”
When she looked closer, she saw that his hands were curled up like fists. He couldn’t relax them, and he couldn’t tie his shoe.
Hector had seemed to be a little off his game for a few months, but nothing that alarmed her. She took him to his pediatrician that day, but all she remembers the physician saying is that it could be due to playing video games. He did refer her to a neurologist, but she couldn’t get an appointment for six months.
Sandoval’s mama bear instincts kicked into high gear when she couldn’t get answers for her son’s seemingly sudden physical decline.
After trips to two hospitals in northern Indiana, the Elkhart mom of seven brought Hector down to Riley Hospital for Children.
“I would have taken him there the first day if I had known,” she said. “I had to make a bed in the back of the car for him because he couldn’t sit down without crying.”
By then, his body hurt to the touch, she said. He couldn’t walk or use the bathroom by himself.
They arrived in the emergency department at Riley on June 26 and didn’t leave the hospital for 32 days, the majority of that time spent in inpatient rehab, where her son relearned basic skills that would allow him to be independent again.
Riley neurologists diagnosed Hector with CIDP (chronic inflammatory demyelinating polyneuropathy), a rare autoimmune disorder in which the body attacks the myelin sheaths, the fatty coverings on the fibers that insulate and protect the nerves.
Considered the chronic form of Guillain-Barre syndrome, CIDP often starts with tingling or numbness in the toes and fingers, progressing to weakness and mobility issues in the arms and legs.
There is no known cause for the illness, but early treatment includes steroids and IVIG (intravenous immunoglobulin) transfusions.
Hector’s mom can’t find the words to express her gratitude to the Riley team for giving her answers.
“I don’t know how to thank all those doctors. Just saying thank you is not enough,” Sandoval said. “They don’t know exactly what they did for me in fixing my son.”
Once he was strong enough, Hector was transferred to Riley’s inpatient rehab unit, where he learned to walk independently again, feed and dress himself, and to manage other personal-care skills.
Hector’s physician care team included Dr. Laura Black, Dr. Lisa Smith, Dr. Francisco Angulo-Parker, Dr. Michael Goodman and others.
Physician assistant Ben Schrock, who oversees inpatient rehab, said in patients with CIDP, the rehab team looks at overall weakness, gait abnormalities and their ability to use their hands and legs in the ways they are used to.
“When he first came to us, he needed assistance getting up and transferring from bed to chair. His recovery went really well,” Schrock said. “He worked very hard with physical and occupational therapy.”
Upon discharge two weeks ago, Hector was able to eat independently and walk with supervision. He has been fitted with leg braces for additional support and has a walker to use at school when he gets tired.
He received an additional dose of IVIG before he left the hospital and will continue that therapy as well as physical therapy in the weeks to come, Schrock said.
“Guillain-Barre typically lasts six to eight weeks, but CIDP can go much longer, and outcomes are a lot more variable,” he added. “He’s going to be looking at continued therapy and continued improvement. These recoveries are long. He’s a lot closer to his baseline, but he still needs work to get there.”
While patients may recover from CIDP, they could have flair-ups down the road, causing numbness and weakness. The longer the disease goes untreated, the more nerve damage can limit sensory and motor functions.
Sandoval said her son, who returned to school last week, is walking a little bit straighter every day.
“I am happy and proud of all those doctors because they told me what was going on and that he would be OK,” she said.
“I know he’s going to have a long journey, but at least I know what to expect and what he’s going to go through. I got answers and they gave them to me.”
Nikki Goedeker, whose son, Brady, was diagnosed with CIDP last year at the age of 13, understands that journey better than most. Brady also was treated at Riley and continues therapy and IVIG treatments today. But he continues to improve.
She offers this advice for the Sandoval family: “Surround yourself with people who can help lift you up and cheer you on. There are amazing doctors, nurses and therapists in this community. I believe our family has gotten stronger and our son will be able to get through anything life throws at him because of this experience.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, email@example.com