Children’s books personalize young patients’ conditions
search

Children’s books personalize young patients’ conditions

Pediatric endocrinologist Debra Rotenstein is a children’s book author who focuses on acceptance.
Photo provided by Debra Rotenstein
Pediatric endocrinologist Debra Rotenstein is a children’s book author who focuses on acceptance. Photo provided by Debra Rotenstein

By day, Debra Rotenstein is a pediatric endocrinologist, but when the sun goes down, she is a children’s book author. Last month, her third book was published by Ipsen Biopharmaceuticals, a helpful volume for patients called “Someday When I’m Bigger.”

The idea for the book came to Rotenstein while she trained in a clinic in New Kensington more than 25 years ago.

Rotenstein said that the clinic had a “no tears policy,” and she found that the best way to keep her young patients calm was to make sure that she had a real relationship with them. For Rotenstein, that meant having open discussions about their condition — many had growth disorders — and how they were feeling about it.

“They don’t need to become scientists, but they need to understand what’s happening to them,” said Rotenstein.

According to the physician, the high rate of noncompliance with diet and medicine regimens among pediatric patients often occurs because they feel an emotional disconnect from the actions, since their emotions haven’t been taken into account and discussed.

“Children are not little adults,” she emphasized, and though there is a lot of material for parents, “there wasn’t anything to tell children what was going on.”

So Rotenstein decided she would provide the material herself. She wrote the picture book shortly after she thought of it and spent several years sending it to various publishers. But busy with her practice and her family, Rotenstein didn’t have the time to spare for aggressive pitching. So the story went in a drawer, and though she occasionally brought it out to read to children, it stayed there.

“I kept writing little things in between,” said Rotenstein. Two of these side projects would turn into children’s books, both about precocious puberty — an early onset of physical maturation due to hypothalamic or pituitary problems — that Rotenstein had dealt with many times in her practice.

The books were published by Endo, a global specialty pharmaceutical company. Rotenstein said that she wrote one of the books in an airport while waiting for her flight home. She was returning from a medical conference and had found, to her consternation, that there was almost no information or outreach about the disorder that specifically targeted the children who were affected by it: Most of the resources were intended for the parents alone.

Rotenstein said that some of those attitudes have shifted, and pediatric patients are being given more information about their condition. But, she was careful to emphasize, a clinical approach alone won’t help these patients. Their emotions need to be taken into account as well.

“When you have an alliance with the kid and they trust you, it makes it easier,” said Rotenstein, to ensure that they are following through with their personal care regimen. Since they feel their voice being heard and considered, they are more inclined to participate. It’s for the same reason that Rotenstein advises diabetic patients to inject themselves: It gives them more control and autonomy in the situation.

“Someday When I’m Bigger” is aimed at children with insulin-like growth factor (IGF-1) deficiency. The hormone is key in normal growth, and an inability to produce it can lead to dwarfism.

Rotenstein said that we live in a world where the credo “bigger is better” is taken seriously. Children who suffer from an IGF-1 deficiency often feel isolated, unable to do the things other children their age can, mistaken for the younger sibling due to their stature. Rotenstein wanted to let them know “that they’re OK” and that they “need to be valued for who they are” and not their appearance.

The book was well-received at the MAGIC (Major Aspects of Growth In Children) Foundation’s annual conference last month. (The nonprofit provides support for families of children with chronic disorders that affect growth.) Rotenstein said that she’s hoping to do some local book readings and that Ipsen is planning on shipping the books to pediatric endocrinologists across the country.

“This is the kind of book that you sit with your child on your lap and you read it to them,” said Rotenstein.

She’s “ecstatic” that the book is finally seeing the light of day after such a long gestation period, but Rotenstein doesn’t plan to stop here. She’s already completed another book about diabetes and hopes to write two more: one about adrenal insufficiencies and another for transgender children, who, she said, have so few resources at their disposal.

For Rotenstein, “it comes down to acceptance. People need to accept themselves, and the world at large needs to be more accepting. And that’s a tall order.”

Masha Shollar can be reached at mashas@thejewishchronicle.net.

comments