Three Brothers with Lymphedema

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Three Brothers with Lymphedema

Postby patoco » Sun Jan 14, 2007 12:07 am

Medically speaking – anything but normal

Jan 13, 2007

By Jennifer L. Boen jboen@news-sentinel.com

Heather Sosenheimer picked up what looked like a photo album. But the pages contained no pictures of her three little boys, who were playing in the backyard, or of her teenage daughter, not yet home from school.

In the see-through pockets were business cards, dozens of them. Rarely a week goes by when Heather and Rick Sosenheimer do not use the book to call a pediatric neurosurgeon, ophthalmologist or another of the many medical specialists their sons require.

Conditions

The unraveling of the family’s medical problems began in September 2005 with now-7-year-old Kedrick’s diagnosis of pseudotumor cerebri (see graphic below). His parents finally had an explanation for his intense screaming. “I kept saying, ‘Something isn’t right. He’d get this scream and wouldn’t quit screaming,” Heather Sosenheimer recalled. In a spinal tap, Kedrick’s cerebrospinal pressure was 23; normal is 5-15 in a child. His fluid pressure fluctuates, sometimes too high, sometimes too low. Either way, he is in pain. “He can only be up for about two hours before he has to lie down,” Heather Sosenheimer said.

To an onlooker, all seems well with her son. It’s a mixed blessing. “People don’t understand why Kedrick can suddenly start screaming. They can’t see that he has a very, very bad headache that won’t go away. They’re thinking, ‘Can’t you get control of him?’ ” Heather Sosenheimer said.

Within six months of Kedrick’s diagnosis, the family learned all three boys have rare brain conditions that include chiari malformation, pseudotumor (see graphic) or cysts. The pressure around the brain of Hunter, 6, was 55. Damage to the optic nerve, especially in his left eye, had already occurred.

Drake Sosenheimer, 8, has three cysts in his brain and chiari malformation, although, unlike his brothers, his chiari has not required surgery.

The family thought Hunter’s shunt, his third, was working OK until a few weeks ago. An eye specialist at Riley Hospital for Children in Indianapolis said Hunter’s vision is rapidly getting worse. When Heather Sosenheimer heard the news, guilt swept over her: “I have been so concerned with Kedrick that I have been ignoring Hunter.

“But life is what you make it,” she said. “It’s not stopping just because they have these problems. You can cry yourself underneath the table. It isn’t going to make things any different.”

Daily life

The house comes alive when the school day ends. Seconds after getting off the school bus, the front door flies open and the boys head to the cupboard for a snack of peanut butter crackers. On the kitchen wall is a plaque that reads: “There will be no crisis today. My schedule is full!” It is wishful thinking for their mother. The boys attend Haley Elementary School and have chores around the house, including helping take care of the new puppy, Shannee; picking up toys; and doing homework.

“Do we have Scouts tonight?” Drake asked his mom while stuffing crackers in his mouth. Kedrick and Drake just joined troops at their school.

Hunter is a budding country music singer. “I want an amplifier,” he said, strumming his new guitar, a birthday gift. The sound of Kedrick’s thump, thump, thumping on the drums reverberated from the boys’ bedroom, while Shannee yipped with excitement.

“They are so into music,” Heather Sosenheimer said. It is a wonderful normalizer for a family who, medically speaking, is anything but normal.

Doctors knew some of the boys’ problems were likely genetic, although that is not always the case. Brain scans found chiari in Rick, Heather and daughter Markee Rase, 16, meaning all six family members have it. It is, for the most part, asymptomatic in Markee and Rick. On Wednesday, Heather Sosenheimer underwent surgery in Chicago to correct her chiari. She remains in intensive care and hopes to be home next week. Soliciting help from family and friends to care for the boys was just one more foothill in what is already a mountain of needs.

While some people may have chiari and never realize it, “The familial or genetic chiari patients seem to have a more virulent form of the disease,” said Dr. David Frim, chief of neurosurgery at University of Chicago Comer Children’s Hospital and the boys’ neurosurgeon.

The three boys share another, more unusual characteristic: double rows of eyelashes, part of a disorder called lymphedema-distichiasis. Each has his own additional medical problems. Drake has a heart defect, kidney abnormalities and spina bifida occulta, the mildest form of spina bifida (see graphic). Kedrick has high-functioning autism and recently scored below normal on an IQ test. He has had three surgeries and Hunter five to either fix the chiari or to put in or redo a shunt.

Family pressures

Rick and Heather Sosenheimer know it’s a strain on a marriage when there is a single child with disabilities. “The odds are against us,” Heather Sosenheimer said. But the odds are also almost inconceivable that two people with rare genetic conditions marry one another. “I just can’t go there,” she said. “There are moments when you want to blame the other person, when you get defensive. But you can’t blame anything. These things just happen.”

Day by day, the couple continues to pull together. “You have to be communicators … try to find time for yourselves, little moments … You have to take time to sit back and relax a bit, catch your breath,” she said. Markee, who hopes one day to be a special-education teacher, is a dependable help with the boys.

When one of the boys cries out in pain in the night, Rick Sosenheimer often is the one who gets up. He attends as many doctor appointments as possible. “It seems like every appointment they find something new,” he said. He praised his employer of 15 years, United Building Center, formerly Wolohan Lumber in Fort Wayne, for granting him time off when the boys have had surgeries or out-of-town appointments.

Rick Sosenheimer’s overtime hours help cover medical and living needs, but even that is a mixed blessing. His earnings are just over the line to qualify the family for Medicaid medical coverage. Group health insurance is good, but deductibles, co-pays, travel, meals and sometimes hotel costs quickly add up. Four to five trips a month to Indianapolis or Chicago are the norm, which is why Heather does not work outside the home.

“I always know when we’re going to be making a trip to Chicago – the price of gas always goes up,” Heather Sosenheimer said. A two- to three-day visit to Comer in Chicago runs about $250 – higher if there is no room at the hospital’s hospitality house. Together, the boys take 13 medications, a $300-$400 out-of-pocket monthly expense.

Despite their bare-bones budget, Heather and Rick Sosenheimer, with the boys’ encouragement, threw a joint birthday party in October for their sons, asking guests to bring a toy donation for Comer. “We collected over 100 toys for the kids at Comer. The boys loved giving the toys to the hospital,” Heather Sosenheimer said.

What the future holds

The Sosenheimers’ greatest frustration, however, isn’t giving all the medications or even what they cost. It is not keeping track of the doctor appointments or the time and effort required to persistently advocate for their special-education services. It is that no one really knows what the future holds for their sons. Their sons’ combination of problems is uncharted territory.

“We want to get help and to help others, but there’s very limited research on pediatric chiari,” particularly in conjunction with pseudotumor. “No one really has answers. There is no data bank for all this information,” Heather Sosenheimer said. Some geneticists have told the family the boys may have a syndrome of some kind, but to date, no one has an official name for it.

“This is not Parkinson’s disease, not heart disease, not cancer,” Heather Sosenheimer said. “It is not getting attention and not getting funding for research. It’s going to take a celebrity or famous person’s kid to have this before it gets attention.”

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You can help

An account to assist with medical-related bills for Drake, Kedrick and Hunter Sosenheimer has been opened at Wells Fargo Bank. Checks should be made out to Sosenheimer Boys Fund/Richard Sosenheimer.

For additional photos and updates on the Sosenheimer family, see caringbridge.org/visit/don'tforgetsomewheretorefertotheWebslideshowandphotosthesosenheimerboys

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