Build it, and they will come

St. Louis

- Elaine Siegfried, M.D., dermatologist and professor of pediatrics and dermatology at St. Louis University School of Medicine, remembers attempting to admit severe pediatric atopic dermatitis patients years ago to a private hospital.

Volunteer seamstress Jo Ridenhour (right) delivers specially made pajamas for children with atopic dermatitis to Elaine Siegfried, M.D., at Cardinal Glennon Children’s Medical Center in St. Louis.Photo: Cardinal Glennon Children’s Medical Center

But that hospital - like many others - was not equipped to handle them.

Today, as director of dermatology at Cardinal Glennon Children’s Medical Center here, Dr. Siegfried has organized the nation’s first inpatient pediatric AD program at the pediatric tertiary care center.

The center offers both treatment and education.

"Taking care of a kid who has atopic dermatitis is very labor-intensive," Dr. Siegfried says. "There are many details to skincare and, often, there are many reasons that kids fail aggressive topical outpatient therapy. But it is difficult to identify those in a 20- or 30-minute office visit.

"When you are in the hospital, you have a whole team of people that are helping you with that," she says. "So, part of the hospitalization is to sort out the diagnostic issues, and part is to provide an opportunity for intensive education of the children and parents.

"In that way, it is analogous to (treating) a child who has new-onset diabetes."

Children who are admitted to the AD program for what are usually three- to five-day stays are flaring and "at the ends of their ropes," Dr. Siegfried says.

It takes a village

At Cardinal Glennon, Dr. Siegfried taps the expertise of medical specialists, such as otolaryngologists, allergists and sleep medicine professionals, as well as the knowledge of physical therapists, nurses, a child life therapist (to help children work through behavioral and other issues) - and even volunteers.

"We also work with GI doctors and endocrinologists, because often these kids have undetected adrenal suppression," she says. "A lot of times, you have to do an a.m. cortisol screening, which you have to draw at 5:30 in the morning. So it is hard for parents to get this kind of a blood test when their kids are outpatient."

Physical therapists wet-wrap the children, while nurses help to educate patients and families, she says.

"We have a system of education, (with) handouts. We just developed a questionnaire for parents, like a post-test follow-up, just to make sure that they understand," she says.

Starting with a whirlpool

Children admitted to the inpatient dermatology program start their stays with a visit to a hospital whirlpool.

Getting in the tub can be a big ordeal for children with severe AD, and often the children and even their parents say the children have been taking baths when the truth is that they haven’t, according to Dr. Siegfried.

"Everything burns and stings. Even if it does not burn and sting, they have this learned behavior, and they are so afraid that things are going to burn and sting," she says.

Danielle Burlingame, 16, one of Dr. Siegfried’s atopic dermatitis patients from Worden, Ill., who has been admitted as an inpatient for severe AD, admits that she is more likely to get in the bath in the hospital rather than at home.

"It hurts to take baths when you are (broken) out," Miss Burlingame says. "But they make you do it" in the hospital.

Dr. Siegfried estimates that half of children with severe AD refuse recommended treatments. Their hospital stays often help them to reverse that trend and learn behavior modification so that they can go home and continue taking care of their skin.

Volunteers pitch in

Under physical therapists’ supervision, the pediatric patients then get their wet wraps.

This is where Dr. Siegfried’s team hit a snag. Commercially made garments for adults with severe skin disease were not widely available for infants and young children. And the time-honored approach to wet wrapping (using gauze, then plastic wrap, or cellophane) was less than ideal because the wrapping would come off young, active children and could even suffocate, according to Dr. Siegfried.

"I wanted a (pajama) garment that was just made out of white cotton knit with no elastic or snaps, seams on the outside, no tags, or any allergens," she says.

A call for help in the medical center’s newsletter drew the attention of neonatal unit volunteer Jo Ridenhour, who has been sewing for as long as she can remember.

Ms. Ridenhour had some white cotton interlock at home - she says people who sew tend to have a fabric stash - and she adapted a few different patterns, trying her hand at the special-order garments.

"I made some garments and took them in, and I was amazed that (Dr. Siegfried) was so taken with those," she says.

Ms. Ridenhour then took on the challenge. She found two sources for fabric, negotiated discounts, and turned to fellow seamstresses for manpower.

"I belong to a needle art guild in the St. Louis area, and there is an American sewing guild with about 400 women. So I appealed to my group, which is about 30 women, and went to one of the neighborhood meetings of the sewing guild.

"They were good enough to let me put an item in their newsletter - an appeal for help," she says.

Cardinal Glennon paid for the material and meeting room, where, one Saturday, Ms. Ridenhour arranged for 20 volunteers to spend the day, armed with their sewing machines.

The hospital now has 45 full pajama sets in a variety of sizes for severe AD patients.

Filling a need

Admitting severe pediatric AD patients is not an option for many dermatologists, not only because of a lack of resources but also because of a frequent misconception.

"There is a widely held misconception that you have to put an IV into a kid in order to justify a hospitalization," Dr. Siegfried says. "At least at our hospital, that is not true. You do not have to have sepsis or IV antibiotics. You just have to have severe, flaring disease that is unresponsive to outpatient management."

The need for inpatient therapy is even greater than Dr. Siegfried had anticipated. She thought she would be admitting a child or two a month for the inpatient skincare and education, but, a year and a half into the program, she has been admitting one to two a week.

She says that having the patient in the hospital provides an opportunity for dermatologists to solve individual patients’ AD puzzles.

"Atopic dermatitis is in some ways a phenotype … and many kids have more than one trigger," she says. "My approach is to identify and eliminate the simple triggers first, and then, if that does not work, to go on and look for other things that may be more difficult to address or treat."

Children who are hospitalized at Cardinal Glennon often clear. Even if they do not, they always get better, Dr. Siegfried says.

Miss Burlingame, who says her condition has gotten a lot better since her last inpatient stay, expresses her gratitude for Dr. Siegfried’s efforts.

"Dr. Siegfried is the best doctor," she says. "She is really nice, and she does whatever she can to make you better." DT