Daniel’s story: When Lyme goes untreated

Mar 19 2015 | 02:54 AM

By Ginny Privitar
— “Mommy, what will happen if I don’t wake up tomorrow?”

Daniel DePolito of Dingmans Ferry asked his mother, Holly, that heartbreaking question during a year of frequent hospitalizations. His symptoms included severe headaches, swollen joints, and difficulty moving and walking. He had gastrointestinal and urinary problems and associated pain, fatigue, and, eventually, vision problems in his right eye.

On Aug. 9, 2012, six year-old Daniel came down with a nasty sore throat and a rash on his throat and chest. His mother called his pediatrician, who told her it was probably hand, foot and mouth disease — a highly contagious disease different from the hoof and mouth disease seen in animals. The doctor said Daniel probably caught it at day care, and that she'd seen a hundred cases of it. Keep him hydrated, she told Holly.

Daniel gradually got worse. He developed abdominal pain, and his ankles, knees, and elbows swelled. The rash spread from his groin to his toes. On Aug. 12, Holly took Daniel to the emergency room at a local hospital, where blood tests revealed an extremely high white cell count. The doctor at first thought Daniel might be dehydrated, and later said his symptoms were associated with leukemia. The family was told to follow up with an oncologist.

Within hours of being discharged, Daniel's condition got even worse. Holly brought Daniel back to the hospital. This time it was a different ER doctor, who immediately ordered a cat scan and found that Daniel’s bowels were inflamed. The boy was placed on intravenous antibiotics and hydrated.

The doctor seemed to think something else was going on. Had they traveled abroad? Did Daniel eat something that could have caused these symptoms? Was he bitten by an insect? No, they said.

Daniel was in terrible pain. A nurse struggled to insert a catheter. Holly heard the nurse tell another nurse, “I can’t get it. It hit something.” Daniel was bleeding.

Holly told the nurse to get away from her son. She went down to the lobby to call Daniel’s father, to get the name of another hospital. They were new in the area and unfamiliar with local facilities.

When Holly saw the doctor again, she was told Daniel had blood in his bowels too, and that he had HSP disease, an autoimmune disease that causes blood vessels to leak. A skin biopsy, the definitive test for HSP, was never done.

'It burns'Holly then took Daniel to Janet Weis Children’s Hospital in Danville, part of Geisinger Medical Center. The doctor didn't want to insert a catheter while Daniel was in pain, but planned to put him under anesthesia for the insertion if the problem persisted.

“It burns, it burns," said Daniel.

A rheumatologist said Daniel would be in the hospital for a long time.

More flareupsOver nine days Daniel was treated with intravenous steroids and began to show signs of improvement. He was switched to oral steroids (prednisone), with morphine for pain and Zofran for vomiting. He went home.

Within 24 hours, Daniel had another flare-up. An ultrasound at Geisinger in Scranton confirmed an infection. The hospital sent him by ambulance back to Children’s Hospital in Danville.

Daniel couldn’t tolerate the pain anymore. At Children's Hospital he was put on a morphine drip, treated again with steroids, and once more sent home.

But his symptoms got worse again: pain, headaches, blood in his urine, and constipation. Daniel suffered flare-ups every time he came off the steroids prescribed to treat HSP.

Doctors kept coming up with different reasons for his symptoms. Daniel began physical therapy and was eventually able to go back to school.

On Dec. 13, 2012, the school nurse called Holly to come pick Daniel up. It was happening again. Holly talked to a physician from Children’s Hospital as she drove Daniel home from school. The doctor told her to take Daniel to the nearest hospital, Geissinger South Wilkes-Barre medical facility.

At Wilkes-Barre, Holly was crying when the ER doctor came in. She no longer believed this was HSP — or HSP alone. She then saw the doctor approach.

"He was coming down the hall at a fast clip, and he was looking right into my eyes," Holly said." I thought something was wrong, and my heart went right into my feet.”

The doctor stopped the nurse, who was about to inject Daniel with steriods.

“Why didn’t you tell me your son has late-stage Lyme disease?” the doctor asked Holly.

Holy was stunned. She had no idea. Apparently the hospital tested Daniel for Lyme but never shared the results with the family. His doctor now banned steroids, which were making Daniel's Lyme disease worse.

Daniel was given intravenous amoxicillin for two 14-day cycles. That made him sick, too, because of the toxins released as the antibiotics killed the bacteria.

One disease affects anotherDoctors told Holly that Daniel indeed also had HSP, which interfered with his ability to fight the Lyme disease. Both the amoxicillin and the HSP made it more difficult for Daniel to fight off infections.

Daniel was often at the hospital to treat infections. He was taken out of school again. He has good days and bad days.

He still gets respiratory infections and abdominal pain. He still has difficulty walking and seeing out of his right eye. But he's doing better and feels stronger. His last amoxicillin treatment was nine months ago. He takes anti-inflammatory medication and probiotics.

If Daniel has another flareup, he'll go to Children's Hospital in Philadelphia. The family has been in contact with an infectious disease specialist there.

The ordeal has tested Holly’s faith.

Where would Daniel be today if that Lyme test result had come back earlier? she wonders. Would he have gotten so sick?

"I never had any time to sit down and think about how this was affecting me or my family," Holly said. "It was just ‘how do we take care of Daniel?’

“If any good can come out of this, tell parents to get their child’s complete medical records," said Holly. "We were lacking the most important part of the record. Ask for all the records. If they are not ready ask for a day and telephone number where you can get them.

"Do not leave without your child’s chart.”

Editor's note: This article is the first of a series about tick-borne disease, which is endemic in Pike County. As temperatures start to rise about 45 degrees, the ticks that have been inactive under leaf litter all winter long will rouse themselves once again.