A Kansas City area mother and a Chicago hospital are in a legal fight over her 16-year-old son's medical treatments.
A custody hearing scheduled for Wednesday was postponed.
Michelle Rider says she is just a worried mother trying to do the best for her son but the Lurie Children's Hospital has accused her of purposefully sickening her son. As a result, the two sides are embroiled in the custody dispute.
Isaiah Rider turns 17 in August. His grandmother, Judy Rider, calls the last two months "a nightmare" with her grandson in a foster home.
"They accused her of medical abuse and a disease called Munchausen," said Judy Rider about the allegations that the hospital has made against Isaiah Rider's mother.
Munchausen is Munchausen by proxy syndrome, a rare form of child abuse in which a caregiver exaggerates or fabricates a child's symptoms in order to get attention and sympathy. In some cases, the loved one may purposefully sicken or injure a child so that they get treatment or be hospitalized.
The teen has been in hospitals in five different states in the past 18 months. His mother says she is just trying to get her son the best possible care and it's not something negative. She said her son's condition and pain and suffering are real and is not her fault.
Lurie Hospital said confidentiality rules prevented them from commenting.
"Due to patient privacy issues we cannot comment on any individual case," Julie Pesch, a hospital spokeswoman, wrote in an email to KCTV5. "Lurie Children's has a long history of providing family-centered care to all our patients. As part of our 132-year mission, we are committed to ensuring the health and welfare of every child we serve."
The Illinois Department of Children and Family Services would also not comment on any specifics for the same reasons.
"The Illinois Department of Children and Family Services takes our mandate to protect the privacy of the children and families we serve very seriously, and state law prohibits us from providing case-specific information about this particular family," said Karen Hawkins, spokeswoman for the department. "In general, I can say that the decision to take a child into the state's care is never taken lightly. We carefully weigh each child's safety, well-being and best interests when making placement decisions."
But Isaiah Rider's family wants the story known.
Michelle Rider said Isaiah Rider has multiple diagnoses which are undisputed, including something called neurofibromatosis, which he was diagnosed with at the age of 5.
"It's a genetic condition and it causes tumors on the nerves," explained Michelle Rider.
She suspects that is what created difficulties after he broke his leg a year later. He slipped on a gym floor. His grandmother says the break never healed. The bones wouldn't grow. His right leg far outpaced the growth in his left. Between 2003 and 2012, Michelle Rider says, Isaiah Rider had a total of seven surgeries on his leg. The final one was an amputation, and soon after he started getting painful leg convulsions.
"It's like a seizure of the limb lasting two hours, causing him severe pain," said Michelle Rider.
She said Children's Mercy in Kansas City recommended that he go to a pain specialist at Boston Children's Hospital and arranged for medical transfer. Doctors in Boston stopped the pain but couldn't find a cause. Isaiah Rider was pain-free for a full year, and his family thought it was an isolated episode, perhaps something sparked by the amputation.
But a year later he was back at Children's Mercy in Kansas City with two separate episodes.
The second time around, Michelle Rider requested that he be transferred to University of Kansas Hospital, because she said Children's Mercy was unable to lessen his pain and symptoms. There, she says, doctors discovered a tumor that might be cancerous and spreading.
She went to a Texas hospital for a biopsy, which came out negative. Then she went to St. Louis for a second opinion because St. Louis Children's Hospital has a neurofibromatosis specialist. Soon after, in March, she brought Isaiah to Lurie Children's Hospital to get some of the tumors removed.
That's where the family says the state took him away, saying his tremors were caused by anxiety and went away when mom was gone.
His family said the state took custody soon after Michelle Rider requested he be transferred to another hospital because Lurie's doctors could not determine a cause for his painful convulsions in his leg that was amputated.
"The only reason myself, my family, his family - it's not just me - requested to have him transferred was because they were not helping him," she said. "They had exhausted all of their resources and they said didn't know."
She and his grandmother also said one of the seizures goes against the Munchausen accusations.
"He had one of those tremors at Lurie's in surgery under general anesthetic," said Judy Rider, questioning how anything manufactured or anxiety-related can occur in such a state.
It was April 15 when Michelle Rider said she was informed that the state of Illinois had custody of Isaiah Rider and she could not visit him in the hospital.
"Initially I was told that they were taking custody of him for 48 hours," said Michelle Rider. "Even with an order for visitation, they still managed to keep me from my son for 24 days. He was in the ICU for 30 days. I was not able to see my child."
She wants a judge to restore custody.
"He is in a stranger's home in the state of Illinois. All of his family and friends and everyone is in Kansas City," said Michelle Rider. "We simply came here just seeking specialized medical care and now my son is being held against his will in another state."
She gets limited supervised visits with her son.
She has set up a Facebook page about her struggles to get her son back to her.
"He has been here since March and he wants to come home, and we want him to come home," she said via Skype from Chicago where she had hoped to attend the hearing. "He's been through so much in his young life. He doesn't deserve this. No one does."
She also wants to get her son's actual medical issues diagnosed.
"Even if you just do symptom management, if you don't know the cause then that's not doing my son any justice," she said.
The hearing was rescheduled for Tuesday. Stay with KCTV5 for the latest updates.
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